HEALTH TECHNOLOGY ASSESSMENT

VOLUME 22 ISSUE 50 SEPTEMBER 2018

ISSN 1366-5278

Standing frames for children with cerebral palsy:

a mixed-methods feasibility study

Jane Goodwin, Jan Lecouturier, Anna Basu, Allan Colver, Sarah Crombie,
Johanna Smith, Denise Howel, Elaine McColl, Jeremy R Parr,
Niina Kolehmainen, Andrew Roberts, Keith Miller and Jill Cadwgan

DOI 10.3310/hta22500
Standing frames for children with cerebral
palsy: a mixed-methods feasibility study

Jane Goodwin,1 Jan Lecouturier,1 Anna Basu,2,3

Allan Colver,1 Sarah Crombie,4 Johanna Smith,1
Denise Howel,1 Elaine McColl,1 Jeremy R Parr,2,5
Niina Kolehmainen,1,3 Andrew Roberts,6 Keith Miller6
and Jill Cadwgan2,7*
1Instituteof Health & Society, Newcastle University, Newcastle upon Tyne, UK
2Instituteof Neuroscience, Newcastle University, Newcastle upon Tyne, UK
3Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
4Sussex Community NHS Foundation Trust, Chailey Clinical Services, Sussex, UK
5Great North Children’s Hospital, Newcastle upon Tyne Hospitals NHS Foundation

Trust, Newcastle upon Tyne, UK

6Robert Jones and Agnes Hunt Orthopaedic and District Hospital NHS Trust,

Oswestry, UK
7Evelina London Children’s Hospital, Guys and St Thomas’ NHS Foundation Trust,

King’s Health Partners, London, UK

*Corresponding author

Declared competing interests of authors: Understanding Frames is independent research funded by the
National Institute for Health Research (NIHR) under its Health Technology Assessment programme (13/144/01).
Anna Basu and Niina Kolehmainen report grants from NIHR outside the submitted work. Anna Basu reports
employment as consultant paediatric neurologist in the Newcastle upon Tyne Hospitals NHS Foundation Trust
and an educational grant from Ipsen outside the submitted work. Sarah Crombie is employed by Sussex
Community NHS Foundation Trust and works at Chailey Clinical Services, which supply standing frames.
From 2013 to 2016, Elaine McColl was an editor for the NIHR Programme Grants for Applied Research
programme and her employer received a fee for her work. Andrew Roberts and Keith Miller are employed by
the Robert Jones and Agnes Hunt Orthopaedic Hospital, which designs, builds and supplies standing frames
within the NHS. Jill Cadwgan reports honoraria from Ipsen for delivery of a lecture and support for the
development of training materials for botulinum toxin treatment outside the submitted work.

Published September 2018

DOI: 10.3310/hta22500
This report should be referenced as follows:

Goodwin J, Lecouturier J, Basu A, Colver A, Crombie S, Smith J, et al. Standing frames for children
with cerebral palsy: a mixed-methods feasibility study. Health Technol Assess 2018;22(50).

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© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Abstract

Standing frames for children with cerebral palsy:

a mixed-methods feasibility study

Jane Goodwin,1 Jan Lecouturier,1 Anna Basu,2,3 Allan Colver,1

Sarah Crombie,4 Johanna Smith,1 Denise Howel,1 Elaine McColl,1
Jeremy R Parr,2,5 Niina Kolehmainen,1,3 Andrew Roberts,6
Keith Miller6 and Jill Cadwgan2,7*
1Instituteof Health & Society, Newcastle University, Newcastle upon Tyne, UK
2Instituteof Neuroscience, Newcastle University, Newcastle upon Tyne, UK
3Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
4Sussex Community NHS Foundation Trust, Chailey Clinical Services, Sussex, UK
5Great North Children’s Hospital, Newcastle upon Tyne Hospitals NHS Foundation Trust,

Newcastle upon Tyne, UK

6Robert Jones and Agnes Hunt Orthopaedic and District Hospital NHS Trust, Oswestry, UK
7Evelina London Children’s Hospital, Guys and St Thomas’ NHS Foundation Trust, King’s Health

Partners, London, UK

*Corresponding author [email protected]

Background: Standing frames are recommended as part of postural management for young people
with cerebral palsy (CP) Gross Motor Function Classification System (GMFCS) level IV or V. They may
have a variety of benefits, including improving bone mineral density, gastrointestinal function and social
participation. The NHS needs to know if these benefits are real, given the cost implications of use and the
reported negative effects (e.g. pain). The lack of evidence for the clinical effectiveness of standing frames
demonstrates the need for evaluative research.
Objective(s): The aim of the study was to explore the acceptability of a future trial to determine the
clinical effectiveness of standing frames.
Design: A sequential mixed-methods design was used. The findings of each stage informed the next
stage. We conducted surveys, focus groups and in-depth interviews.
Participants: Professionals who work with young people who use standing frames and parents who
have a child who uses a standing frame took part in a survey of current standing frame practice (n = 551),
a series of focus groups (seven focus groups, 49 participants in total) and a survey of research trial
acceptability and feasibility (n = 585). Twelve young people who use a standing frame were interviewed.
Results: Standing frames were widely used as part of postural management for young people with CP both
in school and at home but more frequently in school, and particularly by young people in primary school.
Achieving the prescribed use was not always possible owing to resources, environment and family factors.
Participation and activity engagement were important to young people. The majority of participants believed
that standing frames research is necessary. Some reported concern that stopping standing frame use for a
trial would cause irreversible damage. The maximum amount of time most health professionals and parents
would agree to suspend standing frame use would be 12 weeks.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 ABSTRACT

Limitations: Owing to the nature of recruitment, we could not calculate response rates or determine
non-response bias. Therefore, participants may not be representative of all standing frame users.
Conclusions: Although parents and professionals who engaged in the qualitative aspect of this research
and stakeholders who took part in the design workshops appreciated the lack of clinical evidence, our
surveys, qualitative information and PPI demonstrated that most people had strong beliefs regarding the
clinical effectiveness of standing frames. However, with key stakeholder engagement and careful planning,
a trial would be acceptable.
Future work: We recommend a carefully planned trial that includes a pilot phase. The trial should evaluate
the following question: ‘does using a standing frame in school improve patient-reported outcomes of
participation (primary outcome), quality of life, subjective well-being, body function and body structure
(secondary outcomes) in young children (aged 4–11 years) with CP GMFCS III–V?’.
Funding: The National Institute for Health Research Health Technology Assessment programme.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Contents

List of tables xiii

List of figures xv

List of supplementary material xvii

Glossary xix

List of abbreviations xxi

Plain English summary xxiii

Scientific summary xxv

Chapter 1 Background and aims 1

Context 1
Research objectives 1
Aims and objectives 1
Literature review 2
How did the literature inform this study? 2
Current practice in the use of standing frames 3
Why this research is needed 3

Chapter 2 Methodology 5
Analysis 5
Reflexivity 6
Mixed-methods design 6
Trustworthiness in qualitative research 6
Patient and public involvement 7
Research Ethics Committee approval and study governance 8
Changes to the protocol 8

Chapter 3 Survey 1: UK standing frame practice 9

Objectives 9
Methods 9
Population 9
Questionnaire development: UK standing frame practice 9
Procedure 9
Results 10
Participants 10
Prescribing practice and actual use of standing frames 14
Reasons for use, and perceived benefits and difficulties associated with standing frames 17
What did survey 1 add? 21
How did survey 1 inform the next step? 21

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 CONTENTS

Chapter 4 First stage focus groups: single stakeholder 23

Objectives 23
Methods 23
Population 23
Topic guide development and conduct of focus groups 23
Procedure 24
Findings 24
Participants 24
Focus group format 24
Perceived benefits of standing frame use and potential outcomes for a trial 24
What should the trial intervention and comparator be? 29
Target population in a trial of standing frame use 35
Other challenges 36
What did the single stakeholder focus groups add? 36
How did the single stakeholder focus groups inform the next step? 37

Chapter 5 Interviews 39
Objectives 39
Methods 39
Population 39
Topic guide development and conduct of interviews 39
Procedure 39
Findings 40
Participants 40
Interview format 40
Attitudes to standing frames 40
Challenges of standing frames 45
What did the interviews add? 46
How did the interviews inform the next step? 47

Chapter 6 Multistakeholder focus groups 49

Objectives 49
Methods 49
Population 49
Topic guide development and conduct of focus groups 49
Procedure 49
Findings 49
Participants 49
Focus group format 50
Population 50
Intervention 51
Comparator 54
Outcome 54
Timing 55
Setting 56
Reservations about a trial 56
What did the multistakeholder focus groups add? 57
How did the multistakeholder focus groups inform the next step? 57

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 7 Survey 2: research trial acceptability and feasibility 59

Objectives 59
Methods 59
Population 59
Questionnaire development: research trial acceptability and feasibility 59
Procedure 59
Results 60
Participants 60
Importance of a research study 62
Feasibility of a research study 64
Barriers to a research study 67
What does survey 2 add? 68
How has survey 2 informed the next step? 69

Chapter 8 Robustness of results: stakeholder involvement and patient and

public involvement 71
Objectives 71
Design workshop: various stakeholders 71
Research priorities 71
Trial design 72
Reservations about a trial 72
Design workshop: parents 72
Research priorities 72
Trial design 73
Pros and cons of trial designs 73
Reservations about a trial 74

Chapter 9 Discussion 75
Introduction 75
Summary of findings 75
What have we found? 76
What would not be feasible in a trial? 76
What might be feasible in a trial? 76
Limitations of our study 77
Strengths of our study 77

Chapter 10 Conclusions 79
Recommendations for research 79
Current research priorities 79
Recommendation of, and rationale for, particular trial designs 79
Potential challenges 82
Implications for health care and the need for a pilot phase 83
Concluding statement 83

Acknowledgements 85

References 89

Appendix 1 Survey 1: parents 93

Appendix 2 Survey 1: prescribing clinicians 117

Appendix 3 Survey 1: non-prescribing professionals 135

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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Park, Southampton SO16 7NS, UK.
 CONTENTS

Appendix 4 Single stakeholder focus groups: topic guide 151

Appendix 5 Single stakeholder focus groups: PowerPoint presentation 155

Appendix 6 Interviews: topic guide 163

Appendix 7 Multistakeholder focus groups: PowerPoint presentation with topic

guide included 167

Appendix 8 Survey 2: parents 177

Appendix 9 Survey 2: health professionals 193

Appendix 10 Survey 2: education professionals 215

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

List of tables
TABLE 1 Stages of framework method analysis 6

TABLE 2 Characteristics of the two professional groups 11

TABLE 3 Characteristics of the young people whose parents responded 12

TABLE 4 Professionals’ prescribed standing frame use 14

TABLE 5 Parent report of frequency of prescribed and actual standing frame use 15

TABLE 6 Parent report of duration of prescribed and actual standing frame use 15

TABLE 7 Professionals’ choices about standing frames 16

TABLE 8 Standing frame waiting times as described by prescribing clinicians,

non-prescribing professionals and parents 16

TABLE 9 Prescribing clinicians’ routine monitoring of the suitability of the

standing frame for the young person, ideally and in practice 17

TABLE 10 Prescribing clinicians’ reviewing of the standing frame programme for

the young person, ideally and in practice 17

TABLE 11 Parents’ perceptions of the benefits of standing frames 18

TABLE 12 A comparison of professionals’ rationales for prescribing standing frames 19

TABLE 13 Difficulties associated with prescription and use of standing frames as

identified by professionals 20

TABLE 14 Difficulties associated with prescription and use of standing frames as

identified by parents 20

TABLE 15 Ranked benefits from the findings of survey 1 25

TABLE 16 Suggestions for trial comparators and intervention 31

TABLE 17 Interview participant characteristics 41

TABLE 18 Characteristics of the two professional groups, and the children whose
parents responded 61

TABLE 19 Perceptions regarding the importance of a standing frame research study 62

TABLE 20 Health professionals’ perceptions regarding the feasibility of a

standing frames research study 64

TABLE 21 Education professionals’ and parents’ perceptions regarding the

feasibility of a standing frames research study 66

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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Park, Southampton SO16 7NS, UK.
 LIST OF TABLES

TABLE 22 Parents’ perceptions regarding the feasibility of a standing frames

research study 67

TABLE 23 Difficulties that would prevent survey respondents from recruiting to

or participating in a standing frame research study 68

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NIHR Journals Library www.journalslibrary.nihr.ac.uk
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

List of figures
FIGURE 1 Flow of sequential mixed-methods design 5

FIGURE 2 Survey 1: participant flow through the study from responses received
to responses included in the final analysis 10

FIGURE 3 Survey 2: participant flow through the study from responses received
to responses included in the final analysis 60

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

List of supplementary material

Report Supplementary Material 1 Minutes from design workshops

Supplementary material can be found on the NIHR Journals Library report project page
(www.journalslibrary.nihr.ac.uk/programmes/hta/1314401/#/documentation).

Supplementary material has been provided by the authors to support the report and any files
provided at submission will have been seen by peer reviewers, but not extensively reviewed. Any
supplementary material provided at a later stage in the process may not have been peer reviewed.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Glossary
Activity The execution of a task or action by an individual.

Body function The physiological functions of body systems (including psychological functions).

Body structure Anatomical parts of the body such as organs, limbs and their components.

Children and young people Children and young people aged 0–19 years with cerebral palsy.
Throughout the report, children and young people are referred to as young people unless referring to the
young people in relation to their parents; for example, ‘children of the parent respondents’.

Classroom support assistant An individual who supports a teacher in the classroom setting by helping
disabled young people with their learning through one-on-one support or in small groups.

Emotional equipoise A state of genuine uncertainty regarding the clinical effectiveness of standing frames
based on an individual’s personal beliefs and feelings (e.g. parents’ experience of their child standing).

Environmental factors External influences on functioning and disability. That is, the physical, social and
attitudinal environment in which people live and conduct their lives.

Evidential equipoise A state of genuine uncertainty about the clinical effectiveness of standing frames
based on an individual’s knowledge of the research literature (e.g. conflicting results, weak evidence base).

International Classification of Functioning, Disability and Health: Children and Youth version A
framework that encompasses functions and structures of the body, activity, participation, personal factors
and environmental factors. We have used it to examine the impact of standing frames on a young person’s
health-related functioning.

Participation Involvement in a life situation (as per the International Classification of Functioning,
Disability and Health: Children and Youth version).

Patient-reported outcomes For the purposes of our report, patient-reported outcomes refers to quality
of life, participation and subjective well-being.

Personal factors Internal influences on functioning and disability, that is, individual attributes of the person.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

List of abbreviations

BMD bone mineral density NIHR National Institute for Health

Research
CP cerebral palsy
PICOTS population, intervention, comparison,
GMFCS Gross Motor Function Classification
outcome, timing, setting
System
PPI patient and public involvement
HTA Health Technology Assessment
RAG Research Advisory Group
ICF-CY International Classification of
Functioning, Disability and Health: RCT randomised controlled trial
Children and Youth Version
VOCA voice output communication aid
NICE National Institute for Health and
WHO World Health Organization
Care Excellence

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Plain English summary

S tanding frames help people with cerebral palsy (CP) to stand when they cannot do this by themselves.
They may also be useful for improving body position, digestion, bone strength and helping young
people to join in with others. However, there is very little scientific evidence (or proof) that they
are helpful.

Standing frames are expensive and can be painful to use. The NHS wants to find out if standing frames
really work. This study aimed to work out if people would take part in a research trial to find this out. We
interviewed young people with CP and asked parents and professionals who work with young people with
CP (who use a standing frame) to answer questions in surveys. We also asked parents and professionals to
take part in focus groups.

We found that lots of things make using a standing frame difficult, such as a lack of time, space or
support. Young people want their standing frames to help them take part in things. Some parents and
professionals, such as physiotherapists, think that it is dangerous to stop using a standing frame for a long
time but may stop for a short time for a research trial.

The people who took part in the study believe that standing frames help in lots of different ways, although
most think that more research is needed.

This study shows that in a future trial the most important things to find out are:

l Does using a standing frame help a young person to feel more satisfied, healthier or happier?
l Do they make it easier for them to take part in activities?
l Can they help with body functions (like breathing and digestion) and body structure (like bones
and muscles)?

A research trial needs to be carefully planned to help people to take part.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Scientific summary

Background

Cerebral palsy (CP) is the most common motor disorder of childhood, affecting 1 in 400 children. CP is
associated with abnormalities of muscle tone and posture with secondary musculoskeletal complications.
These have an impact on mobility, participation and function for activities of daily living. Various postural
management strategies are recommended to reduce symptoms and maintain body structure, including
standing frames. A standing frame has a piece of equipment with a rigid frame and a wide base that
supports a person in the standing position. There are a variety of proposed structural and functional
benefits for standing frame use, including improved bone mineral density, hip stability and ranges of joint
movement at the hip, knee and ankle, and those related to enhancing activity and participation. However,
the evidence base for their use is limited. Standing frames may also be disadvantageous. Young people
report pain and discomfort; families report increased demands on their time, which reduces family and
young person participation. Furthermore, standing frames are expensive, require adaptation with the
young person’s growth, and use therapists’ time to prescribe and monitor their use.

The National Institute for Health and Care Excellence (NICE) guideline for spasticity [NICE. Spasticity in
Under 19s: Management. NICE Guideline (CG 145). NICE. 2012. URL: www.nice.org.uk/guidance/cg145
(accessed 1 November 2017)] highlighted the limited evidence base for postural management programmes
for young people with CP. However, little is known about current UK practice with respect to prescribing
or actual use of standing frames. An understanding of this, along with stakeholders’ perceptions of the
acceptability and feasibility of a standing frames trial, is required.

Aims and objectives

1. Aim 1: to determine current standing frame use in UK practice for the postural management of young
people aged 1–18 years with CP and severe movement impairment [Gross Motor Function Classification
System (GMFCS) levels IV and V].

i. Objective 1: conduct a survey (survey 1) of parents, health-care providers and education staff to
determine current standing frame use for young people with CP.

2. Aim 2: to assess the willingness of parents to have their child randomised in a potential trial, including
the acceptability of different treatment regimens, and to assess the preparedness of health-care
providers to recruit to a potential randomised controlled trial.

ii. Objective 2: undertake qualitative research to explore attitudes to standing frame use and the
acceptability of evaluating whether or not there is benefit through a trial or trials. This comprised
(1) focus groups with parents, health-care providers and education staff and (2) in-depth interviews
with young people.
iii. Objective 3: propose a small number of potential trial designs, structured around a population,
intervention, comparison, outcome, timing, setting (PICOTS) framework and informed by the results
of survey 1 and the qualitative research.
iv. Objective 4: conduct a second survey (survey 2) of parents, health-care providers and education staff
regarding the acceptability and feasibility of these potential trial designs.

3. Aim 3: to propose a substantive trial design (or designs) that is informed by, and acceptable to, parents
and health-care providers.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
xxv
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SCIENTIFIC SUMMARY

Methods

We used a sequential mixed-methods design.

Survey 1
The first stage of the study was a survey of current standing frame use for young people with CP with
GMFCS levels IV or V (survey 1). The questions encompassed treatment indications, treatment goals, types
of frame, duration of intended and actual use, and perceptions and practicalities of standing frame use.
Three populations in the UK were sampled:

l professionals, such as physiotherapists, who prescribe standing frames for young people with CP
(prescribing clinicians)
l professionals, such as paediatricians, orthopaedic surgeons, physiotherapists and education staff, who
do not prescribe standing frames but work with young people with CP who use them (non-prescribing
professionals)
l parents of young people (aged < 18 years) with CP who currently use or have used a standing
frame (parents).

Qualitative work
The next stage was qualitative to explore attitudes to standing frame use and acceptability of evaluating
their benefit through a trial or trials. Five single stakeholder focus groups were conducted, one each for
physiotherapists, medical professionals and education professionals, and two for parents. Young people
with CP took part in in-depth interviews about using standing frames. After evaluating the results of these,
two multistakeholder focus groups were convened to discuss the findings.

Survey 2
A potential trial design, structured around a PICOTS framework was developed, based on the results of
survey 1 and the qualitative research. A second survey (survey 2) regarding acceptability and feasibility
of research and the potential trial design was conducted. Three populations in the UK were sampled:

l health professionals, such as physiotherapists and paediatricians, who work or have worked with young
people with CP who use standing frames
l education professionals, such as teachers, who work or have worked with young people with CP who
use standing frames
l parents of young people with CP who currently use or have used a standing frame.

Study selection (inclusion criteria)

Eligibility of participants:

l Professionals (e.g. of health, education) who work or have worked with young people with CP who
use standing frames could take part in the surveys and/or focus groups.
l Parent/carers of young people with CP who currently use or have used a standing frame could take
part in the surveys and/or focus groups.
l Young people with CP aged 8–18 years who use or have previously used a standing frame could take
part in the interviews.

People could take part in all suitable stages, with the exception of single stakeholder focus group
participants, who could not participate in the multistakeholder focus groups.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Data synthesis

The results from survey 1 (current UK standing frame practice), focus groups, interviews and survey 2
(acceptability and feasibility of a trial) were synthesised to provide recommendations for research.

Results

Survey 1
Survey 1 participants included:

l prescribing clinicians (n = 305)

l non-prescribing professionals (n = 155)
l parents (n = 91).

The survey provided insight into current standing frame use. Prescribing practice was consistent across the
UK, but achieving the prescribed use was not always possible due to resource, environmental, child and
family factors. Professionals and parents of young people with CP were invested in using standing frames.
They reported a variety of benefits; however, they also recognised many challenges associated with
standing frame use.

Qualitative work
There were three to nine participants in each single stakeholder focus group (n = 33 participants). The single
stakeholder focus groups added greater understanding to survey 1 results. Orthopaedic surgeons and
physiotherapists had a strong belief that without standing frames there may be progressive deterioration in
body structure and body function for young people with CP. The views of parents were entrenched in the
idea that standing frames are good, and many were surprised to hear about the lack of robust evidence.
A number of the proposed outcomes, particularly regarding body structure and body function, would require
a longitudinal study in order to answer the question about the impact of standing frames. Other outcomes
would be feasible to measure. There was no consensus regarding duration of intervention or comparators.

The interview participants were 12 young people with CP who were currently using or had used standing
frames. The young people had clear opinions about standing frame use, but reported that they did not
often get the chance to express them. Feelings about standing frames were unique to the individual;
however, participation and activity engagement were particularly important to young people.

Two multistakeholder focus groups were convened, both in England: one in the North and one in the South.
In the Northern group, participants were two education professionals (mainstream – classroom support
assistants), one parent, one orthopaedic surgeon, one neurodisability paediatrician, one paediatric neurologist,
one research occupational therapist and one physiotherapist. In the Southern group, participants were five
physiotherapists, one community occupational therapist, one paediatrician, and one education professional
(early years key worker). The multistakeholder focus groups added more in-depth clinical insight into potential
trial designs for the different stakeholder groups. There were education barriers to overcome for all
stakeholders as each person brought their unique experiences and biases when sharing their perceptions
of the value of standing frames. Professionals, parents and young people were not in emotional equipoise
despite understanding the evidential equipoise.

Survey 2
Survey 2 explored the acceptability and feasibility of research trials. Participants included:

l health professionals, n = 467

l education professionals, n = 44
l parents, n = 74.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 SCIENTIFIC SUMMARY

Most respondents believed that standing frames research is necessary and they were willing to engage in
a trial. The maximum amount of time most health professionals and parents would agree to suspend
standing frame use was 12 weeks. There were factors that would stop professionals and parents
participating in a standing frames study, such as fear that suspending use would cause irreversible
damage. Factors such as these are important when considering trial recruitment.

The collated study results (survey 1, single stakeholder focus groups, interviews, multistakeholder focus
groups, survey 2) were presented in two multistakeholder design workshops. These design workshops
discussed the (1) study’s findings, (2) priorities for research studies, (3) potential trial designs and
(4) conclusions and recommendations. Attendees at the design workshops included co-applicants,
steering group members and various stakeholders such as physiotherapists, orthopaedic surgeons,
paediatricians, parents and a young person with CP.

Conclusions

Our findings suggest that a trial could examine standing frame use in young people with CP GMFCS III–V.
The primary outcome of the trial should be selected from patient-reported outcomes (e.g. participation),
with quality of life, subjective well-being, body function and body structure as secondary outcomes.
There would be multiple factors to consider in a trial design including the heterogeneity of the population,
significant challenges to recruitment and retention, and adherence to protocol. These challenges could be
overcome by clinical understanding of the population and careful trial design, including an internal pilot.

A mixed-methods approach that captures quantitative and qualitative data about users’ experience would
be necessary. We have shown that it is possible to obtain young people’s views, which are highly valuable
with respect to their engagement in clinical intervention and research.

Despite the publication of the International Classification of Functioning, Disability and Health in 2001
[World Health Organization (WHO). International Classification of Functioning, Disability, and Health: ICF.
Geneva, Switzerland: WHO; 2001] [and the Children and Youth Version in 2007 (WHO. International
Classification of Functioning, Disability, and Health: Children & Youth Version: ICF-CY. Geneva, Switzerland:
WHO; 2007)], research and clinical focus still tends to be directed only at body structure and body function.
To engage stakeholders in a trial, there would need to be explanation of why measures of patient-reported
outcomes (e.g. quality of life, participation and subjective well-being) were important clinical outcomes.

Recommendations for research

We present here our recommendations for a research trial, using the PICOTS framework.

Population: young people with cerebral palsy (Gross Motor Function Classification
System III–V)
A study in those of infant and primary school age (4–11 years) is likely to be the most practical, with
respect to ease of facilitation of standing frame use in school, size of standing frames and the typical age
range in which most young people with CP start using standing frames.

The commissioned call suggested research into young people with CP GMFCS IV and V; however, our
survey showed that standing frame use in younger people with GMFCS III was widespread, in keeping
with our clinical experience, and we therefore recommend that inclusion criteria should include young
people with CP GMFCS III.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Intervention: standing frame use (3 days per week)

We found that the recommended standing frame use was for 30–60 minutes a day for ≥ 5 days each
week but that this was not usually achieved. Pragmatically, standing frame intervention for a duration
tolerated by the young person for 3 days per week would be an appropriate dosage based on the results
from survey 1 (UK standing frame practice).

Comparator: no standing frame use

Standing frame use versus no use, or versus alternative therapy or equipment (e.g. hydrotherapy or
disability exercise bike) was discussed in detail throughout the study. Consensus suggests that standing
frame use versus no use would be feasible and most likely to detect change. All young people would be
likely to have other therapy, orthotics and activities regardless of whether they were in the intervention or
non-intervention group (‘treatment as usual’) but randomisation should lead to a balance with respect to
these factors across trial groups.

Outcomes: selected from patient-reported outcomes (e.g. participation), body function

and structure

l Primary outcome:

¢ a selected patient-reported outcome (participation).

l Secondary outcomes:

¢ patient-reported outcomes not included as a primary outcome (e.g. quality of life, subjective well-being)
¢ body function (including bowel function, speech, breath control and feeding)
¢ body structure (including loss of range of movement).

Measurement tools should address the primary and secondary outcomes of study. Patient-reported
outcome measures could assess quality of life, participation and subjective well-being. All measures should
ideally be adaptable to the young person’s communication level and cognitive ability. There may be a
need for parent- or education staff-proxy reports of the child’s patient-reported outcomes (quality of life,
participation and subjective well-being), although the ideal would be a young person’s self-report. It will
also be important to assess impact on parents and family life. Secondary outcome measures of body
function may include respiratory function, bowel function and pain; and of body structure may include
clinical measures of joint range of movement and growth.

Timing: 6–12 weeks

Through survey 1 and the qualitative work, we found that young people often had a break from using
standing frames during school holidays. Survey 2 demonstrated that suspending or delaying standing
frame use would be acceptable and ethical for a period of 6–12 weeks. However, qualitative data from
parents reflecting on past experiences revealed that delayed use (i.e. a waiting list control design) would
not be an acceptable trial design. Therefore, we recommend suspended use for 6–12 weeks.

Setting: specialist school environment

Standing frame use in the specialist school environment is recommended because this is where most young
people with CP GMFCS III–V are educated. Specialist schools would be better equipped to support standing
frame use for the purposes of a trial as they tend to be used in this environment anyway. However, there
may be challenges with education, training and support of education professionals in conducting a trial in
that setting. For adequate statistical power, a trial would need multicentre recruitment.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
xxix
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SCIENTIFIC SUMMARY

Implications for health care

It is important to note that lack of evidence to support standing frame use in young people with CP does
not necessarily imply lack of benefit. Many stakeholders (including young people with CP) perceive positive
outcomes associated with standing frame use despite the paucity of evidence. As such, standing frames
may continue to be prescribed and used even if a future trial demonstrates that they are not effective.
Participants suggested that there would need to be evidence of standing frames causing harm in order for
people to stop using them.

Funding

Funding for this study was provided by the Health Technology Assessment programme of the National
Institute for Health Research.

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NIHR Journals Library www.journalslibrary.nihr.ac.uk
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 1 Background and aims

Context

Cerebral palsy (CP) affects 1 in 400 children and young people. CP is associated with spasticity and
secondary musculoskeletal complications. Twenty-five per cent of young people with CP are non-ambulant
[Gross Motor Function Classification System (GMFCS) levels IV or V].1,2 These young people frequently
experience joint contractures, loss of bone mineral density (BMD), fractures and hip dislocation, leading
to pain and progressive disability.3 Postural management, including standing frame use, is recommended4
and widely used in clinical practice for young people with CP. A standing frame has a rigid frame with a
wide base. A child is positioned in the standing frame with variable support that may enable movement
of the head, upper body and upper limbs, thus potentially improving their function and participation.
For the lower limbs, standing is usually passive (i.e. continuous and stationary loading) but can be dynamic
(i.e. simulating the forces applied during natural walking). Standing frames are predominantly used in
non-ambulant young people (GMFCS III–V), but in the younger age range it may also be used in those
with some independent mobility (GMFCS III).

Research objectives

The overall purpose was to answer the question: what is the likely acceptability of a trial to determine the
clinical effectiveness of standing frames? To do this, we undertook two surveys as well as focus groups
and in-depth interviews to assess the feasibility and potential design of a trial (or trials) of standing frame
use for young people with CP.

Aims and objectives

Aim 1. To determine current standing frame use in UK practice for the postural management of young
people with CP aged 1–18 years with severe movement impairment (GMFCS IV and V).

This aim was addressed by:

l Objective 1: conduct a survey (survey 1) of parents, health-care providers and education staff to
determine current standing frame use for young people with CP. The questions comprised treatment
indications, treatment goals, types of frame, duration of intended and actual use, and perceptions and
practicalities of standing frame use.

Aim 2. To assess the willingness of parents to have their child randomised in a potential trial, including the
acceptability of different treatment regimens, and to assess the preparedness of health-care providers to
recruit to a potential randomised controlled trial (RCT).

This aim was addressed by:

l Objective 2: undertake qualitative research to explore attitudes to standing frame use and acceptability of
evaluating their benefit through a trial or trials. This comprised (1) focus groups with parents, health-care
providers and education staff and (2) in-depth interviews with young people.
l Objective 3: propose a small number of potential trial designs, structured around a population,
intervention, comparison, outcome, timing, setting (PICOTS) framework and informed by the results
of survey 1 and the qualitative research.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
1
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 BACKGROUND AND AIMS

l Objective 4: conduct a second survey (survey 2) of parents, health-care providers and education staff
regarding the acceptability and feasibility of these potential trial designs.

Aim 3. To propose a substantive trial design (or designs) that is informed by, and acceptable to, parents
and health-care providers.

This aim was addressed by:

l Objective 5: combine the results from survey 1, focus groups, interviews and survey 2 to develop a
substantive trial design or designs.

Literature review

A consensus statement4 recommended the use of standing frames as part of a postural management
programme for young people with CP (GMFCS IV and V) from the age of 12 months, but acknowledged
the lack of an evidence base for this intervention; the evidence that there was came from small case series,
which were not blinded or randomised.

Reviews of standing frames5–7 and this Health Technology Assessment (HTA) programme-commissioned call
concurred that the evidence base was limited. The most recent review7 claimed a positive effect on BMD,
hip stability and joint range of movement at the hip, knee and ankle with variable duration of standing
frame use, but Fehlings et al.6 found the evidence unconvincing. Frames may also be disadvantageous.
Young people have reported pain and discomfort, and families have reported increased demands on their
time.5 Furthermore, standing frames are expensive (they cost around £800–2500 each), require adaptation
with the young person’s growth and use therapist time to prescribe and monitor their use. We are aware
of a UK group currently conducting a systematic review of supported standing in CP, although we were
advised that it will not be published until 2018 (Rachel Rapson, Bidwell Brook School, 2017, personal
communication).

Gibson et al.8 conducted a small case series that examined the effect of standing frame use for 1 hour
every day for 6 weeks in five non-ambulant young people with CP, aged 6–9 years. Two 6-week intervals
of standing frame use were alternated with two 6-week periods of no standing frame use. There was a
suggestion of an improvement regarding hamstring stretches with standing frame use.

Caulton et al.9 reported a RCT of a standing frame programme on BMD in 26 prepubertal young people
(aged 4–11 years) with CP. This was a heterogeneous group, paired according to vertebral and tibial BMD
scores and then randomised to either their usual standing duration or 50% increased duration of standing.
There was, on average, an increase of 6% in vertebral BMD in the intervention group but no significant
change in proximal tibial BMD in either group. The authors concluded that by increasing vertebral BMD
through increased duration of standing there might be a potential to reduce risk of vertebral fractures.
However, National Institute for Health and Care Excellence (NICE) guidance10 recommends that standing
frames should not be used for the sole purpose of preventing low BMD.

There is variability in the amount of weight bearing in different standing frames, which may affect BMD
outcomes.11 Dynamic standing interventions may have more potential to improve bone health than passive
standing frames.12

How did the literature inform this study?

Synthesis of the literature revealed evidential equipoise (i.e. conflicting results from a weak evidence base).
This justifies the need for further study, particularly to better understand the impact of standing frames
at different stages in the lives of individuals with CP, with respect to their participation and subjective
well-being rather than simply changes in their body structure and body function.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Current practice in the use of standing frames

Little is known about current UK practice with respect to the prescribing or actual use of standing frames,
at home or in the community. Clinical experience from co-applicants suggests that most young people
with CP have a physiotherapy programme that includes standing frame use, but prescription, timing, and
dosage of intervention may be varied. To our knowledge, there is no previously published description of
current UK practice.

Why this research is needed

There is a large population for whom obtaining clarity on the benefits of standing frame use is important.
The birth prevalence of CP is about 2.5 per 1000 live births, so approximately 1740 CP births annually in
England and Wales.13 Approximately 25% of young people with CP are GMFCS level IV or V, and are
therefore likely to have standing frames considered as part of their postural management.

The potential impact of standing frame use extends beyond childhood. Life expectancy in those with
GMFCS level IV or V cannot be precisely estimated because published studies use different classifications of
severity; however, 89% of those with only motor impairment and who need a self-propelled wheelchair
lived to age 30 years, and 42% of those who could not self-propel lived to age 30 years.14

For a young person, a standing frame may reduce risks of joint contractures, hip dysplasia and scoliosis.
It may improve BMD and increase the likelihood, as a non-ambulant adult, that they will be able to assist
a caregiver in a standing or weight-bearing transfer. It may reduce pain and make daily care easier. By
enabling the young person to be vertical, a standing frame may improve head and trunk control; fine
motor skills; gastrointestinal, bladder and respiratory function; self-esteem; and social, communicative
and exploratory participation.7

However, these are only potential benefits. The NHS needs to know if these benefits are real, given that
there are significant cost implications of use and also reported negative effects: some young people
experience discomfort in standing frames, and families and education staff describe practical difficulties in
their use.15

If there is clinical benefit in the use of standing frames, then the costs need to be balanced against the
cost of long-term health-care needs (including quality of life), and secondary musculoskeletal complications
of spasticity in CP, such as management of hip migration and dislocation, neuromuscular scoliosis,
pathological fractures, pain and respiratory compromise that might have been prevented.

The NICE guideline16 for spasticity highlighted the limited evidence base for all interventions for young
people with spasticity and specifically for postural management programmes. NICE proposed a trial of
standing frame use for young people aged 1–3 years with GMFCS level IV or V. Our study was designed
in the light of the 2013 National Institute for Health Research (NIHR) HTA commissioning brief, which
widened the question to include young people < 18 years. We agreed that this was appropriate because
of clinical indications for frames and changing neurodevelopmental profiles of young people at different ages.

A future trial of standing frame use would also fit with the CMO’s 2012 annual report17 which highlighted
the need for research into effective intervention for long-term conditions in childhood, particularly in
neurodevelopmental disorders where the health needs may be great but for which the evidence base for
interventions is weak. A standing frames trial also aligns with the top research question identified for young
people with neurodisability:18 does the timing and intensity of therapies alter the clinical effectiveness of
therapies for infants and young children with a neurodisability? This includes strategies, dosage and
direction of therapeutic interventions.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
3
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 BACKGROUND AND AIMS

Co-applicant clinical experience shows that some parents and professionals have strong preformed views
about standing frame use. Some professionals may have opinions that have been informed by their
training or subsequent clinical experience, and this may lead them to making persuasive arguments to
parents despite the weak evidence base. Parents in turn may have invested time, effort and faith in
standing frames. Thus, although the current paucity of evidence demonstrates a clear need for evaluative
research, a substantive trial will be difficult to design. The challenges for trial design arise from the
heterogeneity of current practice regarding the purpose and delivery of standing frame intervention, and
the many variables in each of the PICOTS frameworks that need to be considered. Depending on the
young person’s neurodevelopmental profile and the goal of standing frame use, a variety of different
comparators in a trial may be appropriate.

Furthermore, parents, professionals and young people report benefits of standing frames with respect to
activity and participation that is not included in the current literature and has not been explored. Research
needs to consider further aspects of the International Classification of Functioning, Disability and Health:
Children and Youth version (ICF-CY),19 such as participation factors, along with body structure. The ICF-CY
is a useful framework for examining the impact of the surrounding environment (including therapeutic
interventions such as standing frames) and individual characteristics on a young person’s health-related
functioning; it encompasses functions and structures of the body, activity, participation, personal factors
and environmental factors.

This study was designed to address these issues and consider how a trial could be designed by determining
current UK practice in the use of standing frames for young people with CP and by consultation with
young people, parents and professionals who use standing frames.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 2 Methodology
D uring the conduct of this study we adopted a view of health as conceptualised by the ICF-CY.19

We used a sequential mixed-methods design, as outlined in Figure 1, whereby the findings from each stage
informed the subsequent stage. The quantitative and qualitative findings are synthesised in Chapters 9
and 10. This process involved accounting for convergence (i.e. providing research recommendations) and
divergence (i.e. highlighting potential challenges) between the data sources. People could take part in all
stages if eligible, with the exception of the multistakeholder focus groups. Single stakeholder focus group
participants could not participate in the multistakeholder focus groups.

There were multiple study populations: prescribing professionals, professionals who work with standing
frame users, parents of young people who currently use or have previously used a standing frame and
young people who currently use or have previously used a standing frame.

Analysis

Quantitative data analysis was descriptive, largely reporting percentages of respondents in each category
for each question. For survey 2, if there was a large spread of responses for particular items, the related
open-ended responses were examined and then grouped into themes to explore the reasons behind
participants’ closed-answer choices.

The qualitative analysis was informed by the framework method,20 which is not aligned with a particular
epistemological or philosophical approach.21 The framework method was chosen because it allowed for
systematic data analysis that was accessible for our multidisciplinary research team. Table 1 outlines the
stages of analysis. We used a deductive–inductive approach; although certain themes and codes were
preselected based on the ICF-CY or the PICOTS, any new themes that were elicited were added to
the framework and codes were then created. NVivo qualitative data analysis software version 11
(QSR International, Warrington, UK) was used to manage the data.

Qualitative work:
Survey 1: trial design, Survey 2: A trial of
current practice experience of test ideas for standing frame
in UK current use, and research trials use in UK
challenges

Five single
stakeholder Two design
focus groups workshops
Two multi
stakeholder
focus groups
12 young
people
interviews

FIGURE 1 Flow of sequential mixed-methods design.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
5
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 METHODOLOGY

TABLE 1 Stages of framework method analysis

Stage Description

1 Verbatim transcription

2 Familiarisation with the interview (e.g. reading and rereading transcripts, relistening to the audio-recording)

3 Coding as per the ICF-CY. Although deductive coding was used, some open coding took place at this stage to
ensure that important aspects of the data were not missed

4 Developing a working analytical framework through discussion and definition of labels after coding the first three
interviews
5 Applying the analytical framework by indexing subsequent transcripts using existing codes

6 Charting data into the framework matrix (i.e. data were summarised by category for each transcript, with
illustrative quotations)

7 Interpreting the data through discussion, reflection and writing up

Reflexivity

All of the research team were active in disability research. Anna Basu, Jill Cadwgan, Sarah Crombie,
Andrew Roberts, Jeremy R Parr, Keith Miller and Niina Kolehmainen work clinically with young people
with CP who use standing frames. Johanna Smith is a parent of a young person with CP who uses a
standing frame.

Mixed-methods design

A mixed-methods (qualitative and quantitative) design was chosen to provide a comprehensive means of
researching this topic. Mixed-methods research has many benefits such as the ability to have an exploratory
approach (rather than needing clear hypotheses), richer data from a variety of stakeholders and greater
confidence in research findings through a holistic examination. Using only quantitative methods can produce
results that may not reflect stakeholders’ experiences accurately because the researchers’ own agendas are
driving the study. Using only qualitative methods can produce findings that are not generalisable to the
understanding or prediction of issues affecting the wider population. Using both allows for weight to be
given to the meanings, experiences and views of a variety of stakeholders.22 Another advantage is that
paradoxes between the data sources can open up new ways of thinking about a particular topic and enable
further theory conceptualisation and the creation of recommendations for future research.23

Trustworthiness in qualitative research

Each focus group was facilitated by Jane Goodwin and Jan Lecouturier, with the exception of the
physiotherapist focus group (JG and SC) and the medical professional focus group (JG and JC). Sarah Crombie
(Physiotherapist) and Jill Cadwgan (Consultant Paediatrician In Neurodisability) were chosen as secondary
facilitators in the focus groups related to their discipline because it was anticipated that their specialist
knowledge would be necessary to facilitate an in-depth discussion, including answering any clinical questions.
Jane Goodwin conducted all of the interviews.

We approached clinicians who completed survey 1, personal contacts and professional networks (including
via social media); however, it was difficult gathering a group of clinicians at the same time in the same place
for a research focus group owing to their clinical commitments and other responsibilities. Two members of
the research team (KM and AR) participated in the clinician single stakeholder focus group as we experienced

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

trouble with recruitment (including having two clinicians recruited to the focus group who did not show up on
the day due to urgent clinical commitments), and because they met eligibility criteria for the target population.

All qualitative data were analysed by Jan Lecouturier and Jane Goodwin. Although they had experience in
disability research, they were naive about standing frames in research and clinical practice. This meant that
they were fully in equipoise at the point of data collection. They had a greater awareness of stakeholders’
views about standing frames at the end of the focus groups and interviews, but, as these views were mixed,
it is unlikely that they would have had any influence on the interpretation of the data at the analysis stage.
They also independently coded all transcripts. A robust discussion followed to resolve any discrepancies, of
which there were few. The coding was discussed and clarified with the co-applicants as a means of quality
control and rigour check. Clinical members of the co-applicant team (e.g. JC, SC and AB) and the parent
co-applicant (JS) were available to sense check the meaning of the transcripts and advise on the interpretation.
Each researcher remained conscious of their biases to avoid them negatively influencing the analysis and write up.
However, it is important to note that the researchers’ relevant knowledge and experience was also a
strength because it allowed for in-depth engagement with the data, including unexpected themes. The
transcripts and recordings were referred to continuously to ensure that the analysis and interpretation were
staying true to the data. Quotations from participants are provided as supporting evidence for the themes.
The transparent audit trail in NVivo 11 accounted for the systematic examination at each level of analysis.

Patient and public involvement

Patient and public involvement (PPI) was vital to this study from the outset; we outline PPI contributions
at each stage. PPI was important for piloting surveys, creating topic guides and providing advice on
interviewing young people with CP. A nominated Research Advisory Group (RAG) with six parents of
young people with CP was convened. The parents were approached through the parent co-applicant’s
(JS’s) contacts. A flexible approach to PPI was taken; as a result of the nature of parents’ caring roles and
the complexity of CP, it was difficult at times for our nominated RAG to engage as outlined in the study
timelines. Therefore, informal discussions with families known to the co-applicant team were held
throughout, as well as two design workshops after all the data had been collected. In addition, the North
East Young Persons Advisory Group was approached, with co-applicant Johanna Smith presenting and
receiving feedback on study content at two of its meetings. This group comprises teenagers in the local
area who are interested in medical research. Although at the time of our contact there were no members
with CP, some had siblings or friends affected by disability. The young people provided invaluable input
on how to engage young people in research and PPI. They also contributed extensively to a booklet of
interview findings, which was then sent to the young people who participated in the interviews.

We learnt valuable lessons about the involvement of parents in PPI. We found that an online RAG allowed
parents to engage in the study on their own terms [six parents joined a private Facebook (Facebook, Inc.,
Menlo Park, CA, USA; www.facebook.com) group for this purpose]. For example, they could provide
feedback on documents in their own home after their children had gone to bed. Furthermore, the parent
co-applicant (JS) ensured that the study was grounded in what was accessible (e.g. language used in
documents), acceptable and reasonable (e.g. appropriate times to approach for consent), and feasible
(e.g. which trial designs would be possible pragmatically) for families at all times. For example, from a
research design perspective, a trial could (in theory) have recruited families to a ‘delayed start’ research study
at the time of standing frame prescription because many families have a lengthy waiting period before
receiving the prescribed standing frame anyway. Although acceptable to other participant groups, parent
participants had commented that this would be unacceptable because it would be around the same time as
the child’s CP diagnosis. Given the amount of complex information being processed by families during this
time it would be difficult to ascertain informed consent to participate in a research trial. The appropriate
weight may not have been given to the parents’ voices if Johanna Smith had not continued to speak on
their behalf in research team meetings.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
7
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 METHODOLOGY

Research Ethics Committee approval and study governance

The study sponsor was Newcastle upon Tyne Hospitals NHS Foundation Trust. The research was approved
by the Health Research Authority East Midlands – Nottingham 1 Research Ethics Committee (15/EM/0495,
9 December 2015).

Changes to the protocol

Originally, the protocol stated that four of the focus groups would be single stakeholder, one each for
parents, therapists, medical staff (orthopaedic surgeons and paediatricians) and educational professionals.
However, the parent co-applicant (JS), PPI advisors and other parents highlighted that it would be difficult
for parents to travel long distances to attend a focus group, and that there may be important differences
in opinion that are associated with where the parents live. After discussion, we decided to convene two
parent focus groups, one in the north of England and one in the south. This was a substantial amendment
and, therefore, required review and approval from the Research Ethics Committee. These were the only
changes to the protocol (version 4, May 2016).

Initially, participants in the multistakeholder focus groups were going to be selected from those who had
previously taken part in the single stakeholder focus groups. After co-applicant discussion, we decided to
recruit new participants for the multistakeholder groups. This was because our knowledge about the
acceptability and feasibility of a research trial had evolved, and we did not want to replicate the discussion
in the single stakeholder focus groups.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 3 Survey 1: UK standing frame practice

Objectives

A survey was conducted from March to May 2016 to determine current UK standing frame practice,
as well as the perceived benefits and challenges of standing frame use.

Methods

Population
Three populations in the UK were sampled:

1. professionals, such as physiotherapists, who prescribe standing frames for young people with CP
2. professionals, such as paediatricians, orthopaedic surgeons, physiotherapists, and education staff, who
do not prescribe standing frames but work with young people with CP who use them
3. parents of young people (aged < 18 years) with CP who currently use or have used a standing frame.

Questionnaire development: UK standing frame practice

A questionnaire was developed to explore current standing frame practice. Following a literature review,
parents and paediatric health professionals were consulted regarding ideas for appropriate questionnaire
content. Based on this information, the co-applicant study group devised the content of the questionnaires,
drawing on their clinical expertise and background experience of survey design for similar studies. Multiple
drafts were circulated via e-mail and discussed prior to production of the three final drafts, that is, separate
versions for the three populations sampled for this study (prescribers, professionals and parents). These
drafts were then piloted with a small number of people known to the researchers (i.e. three prescribers,
six professionals and five parents. Prescribers and professionals who worked across both private practice and
the public sector were asked to respond in relation to their public sector work). Based on PPI advice, piloting
using cognitive interviews was considered but rejected. The individuals provided feedback regarding the
comprehensibility and acceptability of the questions and associated instructions, as well as the usability and
technical functionality of the electronic questionnaire. Minor changes, such as wording and question logic,
were made at this time. The authors then reviewed the questionnaires again in a co-applicant meeting prior
to dissemination.

The final survey questions comprised: (1) demographic characteristics of respondents, (2) experience
and use of standing frames as part of a postural management programme for young people with CP,
(3) factors influencing standing frame choice and prescribing practice, (4) challenges of standing frame use,
(5) indications for prescribing standing frames and (6) perceived benefits of standing frame use. The survey
also identified any differences between recommended or prescribed use versus actual use. Most questions
offered fixed-choice responses, though there were some brief free-text responses. Participants could use a
‘back’ button to review or change their answers as required (see Appendices 1–3).

Procedure
A convenience sample of prescribing clinicians and non-prescribing professionals were approached through
relevant national royal colleges, professional bodies and their national newsletters, and child development
teams via the British Academy of Childhood Disability. Parents were approached via clinical services located
in the North, South, and West Midlands of England, and through the following national organisations: the
National Network of Parent Carer Forums, Contact a Family and the Peninsula Cerebra Research Unit for
Childhood Disability Research. In addition, we approached parents directly through school newsletters and
peer-to-peer support groups. Facebook pages (e.g. Cerebra) and the study’s Twitter (Twitter, Inc., San Francisco,

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
9
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 1: UK STANDING FRAME PRACTICE

CA, USA; www.twitter.com) feed (@UnderstandFrame) were used to allow those interested to link to the study
website (https://research.ncl.ac.uk/understandingframes/) and access the questionnaire. A £10 voucher was
offered to all who completed the questionnaire.

Recruitment was UK-wide and took place between March and May 2016. The survey questionnaires were
hosted on SurveyMonkey® (Palo Alto, CA, USA), with paper versions available on request. E-mail and
web-based flyers were sent to potential participants with a link to the appropriate version of the questionnaire.

Results

Participants
Numbers included in the final analysis are presented here. Figure 2 indicates participant flow through the
study from responses received to responses included in the final analysis.

l Prescribing clinicians: professionals, such as physiotherapists, who prescribe standing frames for young
people with CP, n = 305.
l Non-prescribing professionals: professionals, such as paediatricians, orthopaedic surgeons,
physiotherapists and education staff, who do not prescribe standing frames but work with young
people with CP who use them, n = 155.
l Parents: parents of young people with CP who currently use or have used a standing frame, n = 91.

Prescribing clinicians

Responses received Reasons for exclusion Final analysis

(n = 336) • Began a version of the survey (n = 305)
that was not appropriate for
their role, n = 19
• Provided no responses after
consent, n = 12

Non-prescribing professionals

Responses received Reasons for exclusion Final analysis

(n = 215) • Began a version of the survey (n = 155)
that was not appropriate for
their role, n = 48
• Provided no responses after
consent, n = 12

Parents

Responses received Reasons for exclusion Final analysis

(n = 123) • Began a version of the survey (n = 91)
that was not appropriate for
their role, n = 4
• Provided no responses after
consent, n = 10
• Child did not have CP, n = 18

FIGURE 2 Survey 1: participant flow through the study from responses received to responses included in the
final analysis.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Tables 2 and 3 outline the respondent characteristics. Most prescribing clinicians and a large number
of non-prescribing professionals were physiotherapists working in community settings. The majority had
> 10 years’ experience and used a variety of standing frame types.

TABLE 2 Characteristics of the two professional groups

Prescribing clinicians, Non-prescribing professionals,

Characteristics n (%) n (%)

Occupation
Physiotherapist 302 (99) 49 (31.6)
Occupational therapist 1 (0.3) 39 (25.2)
Paediatrician 0 29 (18.7)
Classroom teacher or support teacher 0 15 (9.6)
Therapy assistant or technical instructor 1 (0.3) 11 (7.1)
Other health professional 0 7 (4.5)
Technician – engineering background 0 3 (1.9)
Orthopaedic surgeon 0 2 (1.3)
Missing 1 (0.3) 0
Current working environmenta
Inpatients 34 (11.1) 32 (20.6)
Outpatients 153 (50.2) 77 (49.7)
Community – home 263 (86.2) 79 (51)
Community – education centre (school/preschool) 279 (91.5) 107 (69)
Other 1 (0.3) 6 (3.9)
Missing 4 (1.3) 2 (1.3)
Number of children on current case load who are prescribed standing frames
< 10 children 126 (41.3) 66 (42.6)
11–20 children 123 (40.3) 35 (22.6)
21–30 children 23 (7.5) 12 (7.7)
> 30 children 21 (6.9) 20 (12.9)
Missing 12 (3.9) 8 (5.2)
Did not know – 14 (9)
Years working with children who use standing frames
<2 25 (8.2) 14 (9)
2–5 44 (14.4) 24 (15.5)
6–10 59 (19.3) 32 (20.6)
> 10 173 (56.7) 83 (53.5)
Missing 4 (1.3) 2 (1.3)
continued

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
11
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 1: UK STANDING FRAME PRACTICE

TABLE 2 Characteristics of the two professional groups (continued )

Prescribing clinicians, Non-prescribing professionals,

Characteristics n (%) n (%)

Groups of children with whom the clinicians worka

GMFCS I 15 (4.9) 9 (5.8)
GMFCS II 79 (25.9) 33 (21.3)
GMFCS III 244 (80) 74 (47.7)
GMFCS IV 289 (94.8) 105 (67.7)
GMFCS V 277 (90.8) 95 (61.3)
Would rely on prescriber – 25 (16.1)
Reported not familiar with GMFCS 5 (1.6) 12 (7.7)
Missing 12 (3.9) 9 (5.8)
a
Experience with types of standing frame
Fixed prone standing frame 282 (92.5) 116 (74.8)
Upright standing frame 282 (92.5) 136 (87.7)
Supine standing frame 281 (92.1) 111 (71.6)
Dynamic frame 162 (53.1) 53 (34.2)
Sit-to-stand frame 116 (34.8) 33 (21.3)
Missing 13 (4.3) 12 (7.7)
a Percentages > 100% because participants could choose more than one option.

TABLE 3 Characteristics of the young people whose parents responded

Children whose parents responded n (%)

Child’s distribution of CP
Whole body 72 (79.1)
Both sides of the body but legs more than arms 14 (15.4)
One side of the body only 5 (5.5)
Missing 0
Child’s school typea
Specialist school 68 (74.7)
Mainstream 29 (31.9)
College (post 16 years of age, with additional or special provision) 5 (5.5)
Other 11 (12.1)
Missing 4 (4.4)
Child’s age (years)
> 10 46 (50.5)
6–10 25 (27.5)
2–5 14 (15.4)
<2 1 (1.1)
Missing 5 (5.5)

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 3 Characteristics of the young people whose parents responded (continued )

Children whose parents responded n (%)

Child’s estimated GMFCS level

GMFCS I or II 8 (8.8)
GMFCS III 20 (22)
GMFCS III or IV 10 (11)
GMFCS IV 36 (39.6)
GMFCS V 17 (18.7)
Missing 0
a
Experience with types of standing frame
Fixed prone standing frame 34 (37.4)
Upright standing frame 43 (47.3)
Supine standing frame 32 (35.2)
Dynamic frame 10 (11)
Sit-to-stand frame 6 (6.6)
Missing 0
a
Funding source for standing frame
Statutory services (health, social care or education) 76 (83.5)
Charity funding 7 (7.7)
Private or self-funding 7 (7.7)
Did not know 3 (3.3)
Missing 8 (8.8)
a
Professional who assessed and fitted the standing frame
Physiotherapist 78 (85.7)
Occupational therapist 23 (25.3)
Frame manufacturer or representative 21 (23.1)
Paediatrician 2 (2.2)
Therapy assistant or technical instructor 5 (5.5)
Did not know 3 (3.3)
Missing 8 (8.8)
a
Professional who monitors the use of the standing frame
Physiotherapist 74 (81.3)
Occupational therapist 25 (27.5)
Frame manufacturer or representative 6 (6.6)
Therapy assistant or technical instructor 8 (8.8)
Paediatrician 1 (1.1)
Did not know 2 (2.2)
Missing 14 (15.4)
a Percentages add up to > 100% because participants could choose more than one option.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
13
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 1: UK STANDING FRAME PRACTICE

Sixty-five per cent of parents had children who used or had used only one type of standing frame that
was assessed, fitted and monitored by a physiotherapist. The standing frames were generally funded by
statutory services (see Table 3).

Children of the parent respondents were aged 1–18 years (median 10 years and 6 months). They began
standing frame use at 1–11 years (median 3 years) and stopped use at 3–16 years (median 9 years and
7 months). Waiting times to receive a standing frame after it had been recommended ranged between
the response options ‘less than 4 weeks’ and ‘more than 26 weeks’ (see Table 8).

Patient and public involvement work had indicated that asking parents to categorise their child based on
their GMFCS level was inappropriate. Therefore, we estimated the GMFCS level from reported information
about independent walking, use of mobility aids, weight bearing and maintenance of head position.
However, for ten young people, it was not possible to determine whether they were GMFCS III or GMFCS
IV based on the information provided. We therefore categorised them as ‘GMFCS III or IV’ (see Table 3).

Prescribing practice and actual use of standing frames

Standing frame recommendations and prescriptions for use were primarily based on clinical experience
rather than national or local guidance, as reported by both non-prescribing professionals and prescribing
clinicians (81% and 89%, respectively).

Of prescribing clinicians, 82% suggested that standing frames should be used daily; however, only 21% of
parents reported that this was achieved. Furthermore, 76% of prescribers recommended that the duration
of standing should be 30–60 minutes, yet only 39% of parents reported this duration of use (Tables 4–6).
In terms of frequency of standing frame use, 59% of parents reported at least as much use as prescribed,
and 91% reported a duration at least as much as described (see Tables 5 and 6).

TABLE 4 Professionals’ prescribed standing frame use

Prescription of prescribing Views of non-prescribing

Frequency and duration of use clinicians, n (%) professionals, n (%)

Frequency of use

Every day 251 (82.3) 93 (60)

More than three times each week 38 (12.5) 15 (9.7)

More than once each week 0 0

Once each week 0 0

Less than once each week 0 0

Did not know – 27 (17.4)

Missing 16 (5.2) 20 (12.9)

Duration of standing

< 30 minutes 9 (3) 4 (2.6)

30–60 minutes 233 (76.4) 66 (42.6)

1–2 hours 46 (15.1) 18 (11.6)

> 2 hours 1 (0.3) 1 (0.6)

Did not know – 46 (29.7)

Missing 16 (5.2) 20 (12.9)

‘–’ indicates that the item was not a response option for that group of participants.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 5 Parent report of frequency of prescribed and actual standing frame use

Actual usea

More than
Every More than three once each Once each Less than once Did not
Prescribed usea day times each week week week each week know

Every day 13 5 6 0 1 0
More than three times each 1 7 1 1 0 1
week

More than once each week 0 0 1 1 1 0

Once each week 0 0 0 1 0 0

Less than once each week – – – – – –

I do not know 0 0 0 0 0 5
a Sixty-seven participants were eligible to respond to those questions (parents who had a child who currently uses a
standing frame). Total does not equal 67 as there were missing data.

TABLE 6 Parent report of duration of prescribed and actual standing frame use

Actual usea

Not recommended
Less than in this location Did not
Prescribed usea > 2 hours 1–2 hours 30–60 minutes 30 minutes (home or school) know
> 2 hours 0 0 0 0 0 0

1–2 hours 0 3 2 1 0 0

30–60 minutes 0 1 23 0 0 0

< 30 minutes 0 0 0 5 0 1

Not recommended in 0 0 0 0 3 0
this locationb (home or
school)

Did not know 0 0 1 0 0 7

a Sixty-seven participants were eligible to respond to those questions (parents who had a child who currently uses a
standing frame). Total does not equal 67 as there were missing data.
b This question asked about standing frame use in different locations, and parents could indicate if particular locations
were not relevant (e.g. a standing frame may be used at school but not prescribed for home use).

Professionals considered a variety of factors, including physical space and cost, when choosing standing
frames. They generally considered starting standing frame use by 18 months of age (Table 7).

Most professionals and parents reported waiting times for standing frames to be up to 13 weeks from
identification of need to commencing a standing frame programme (Table 8).

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 1: UK STANDING FRAME PRACTICE

TABLE 7 Professionals’ choices about standing frames

Prescribing clinicians, Non-prescribing professionals,

Factors n (%) n (%)

External factors influencing choice of standing frame

Physical space 225 (73.8) 88 (56.8)

Cost of standing frames or funding pathways 214 (70.2) 96 (61.9)

Availability of standing frames 206 (67.5) 87 (56.1)

Parent or young person choice of standing frame 163 (53.4) 63 (40.6)

Other 45 (14.7) 22 (14.2)

Missing 19 (6.2) 20 (12.9)

Age at which they would first consider starting standing frame use

< 6 months 1 (0.3) 4 (2.6)

7–12 months 75 (24.6) 29 (18.7)

13–18 months 171 (56.1) 57 (36.8)

19–24 months 34 (11.1) 29 (18.7)

25–30 months 4 (1.3) 9 (5.8)

> 30 months 5 (1.6) 10 (6.5)

Missing 15 (4.9) 17 (11)

Percentages > 100% because participants could choose more than one option.

TABLE 8 Standing frame waiting times as described by prescribing clinicians, non-prescribing professionals
and parents

Average waiting time Prescribing clinicians, n (%) Non-prescribing professionals, n (%) Parents, n (%)

< 4 weeks 23 (7.5) 3 (1.9) 16 (17.6)

4–8 weeks 106 (34.8) 25 (16.1) 25 (27.5)

9–13 weeks 86 (28.2) 18 (11.6) 12 (13.2)

14–20 weeks 29 (9.5) 10 (6.5) 5 (5.5)

21–25 weeks 5 (1.6) 1 (0.6) 2 (2.2)

> 26 weeks 2 (0.7) 0 5 (5.5)

Did not know 38 (12.5) 82 (52.9) 15 (16.5)

Missing 16 (5.2) 16 (10.3) 11 (12.1)

Tables 9 and 10 show that most prescribing clinicians suggested that standing frame use should be
monitored (for suitability of the standing frame) and reviewed (for the suitability of the standing frame
programme) every 3 months or more often.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 9 Prescribing clinicians’ routine monitoring of the suitability of the standing frame for the young person,
ideally and in practice

Monitoring: in practice

Monitoring: More than Every 3 months Less than When

ideal once per week Weekly Fortnightly Monthly (or termly) termly requested

More than once 3 1 0 0 0 0 0

per week

Weekly 1 7 2 13 8 0 1

Fortnightly 0 0 1 5 9 0 0

Monthly 0 0 0 19 68 3 9

Every 3 months 0 0 0 1 65 30 20
(or termly)

Less than termly 0 0 0 0 1 6 0

When requested 0 0 0 0 1 1 3
Note
A total of 27 responses were missing.

TABLE 10 Prescribing clinicians’ reviewing of the standing frame programme for the young person, ideally and
in practice

Reviewing: in practice

More than
once per Every 3 months Less than When
Reviewing: ideal week Weekly Fortnightly Monthly (or termly) termly requested
More than once 1 0 0 1 0 0 0
per week

Weekly 1 5 0 5 2 0 1
Fortnightly 0 0 2 8 3 0 1

Monthly 0 0 0 14 62 6 5

Every 3 months 0 0 0 3 86 31 19
(or termly)
Less than termly 0 0 0 0 0 8 2

When requested 0 0 0 1 0 1 8
Note
A total of 29 responses were missing.

Reasons for use, and perceived benefits and difficulties associated with standing frames
Parents reported all the benefits they observed for their child, including opportunities for a change of
position, participation and enjoyment in activities, and interaction with peers (Table 11). Eighty-nine per
cent of parents reported more than one benefit. When parents were asked to indicate the three most
important benefits of standing frames, the most frequently selected choice was the opportunity for a
change of position, second was a reduced risk of hip dislocation or damage, and equal third were
improvement of bladder and bowel function and a reduced risk of joint contractures (see Table 15).

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
17
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 1: UK STANDING FRAME PRACTICE

TABLE 11 Parents’ perceptions of the benefits of standing frames

Benefits of standing frame use Parent-reported benefits for their child, n (%)

Enjoy activities 39 (42.9)

Help child communicate 12 (13.2)

Help child stand independently in future 29 (31.9)

Help child use their vision 21 (23.1)

Help child walk in future 17 (18.7)

Improve bladder and bowel functions 52 (57.1)

Improve bone density/strength 56 (61.5)

Improve breathing 25 (27.5)

Improve motor abilities (head control) 34 (37.4)

Improve motor abilities (trunk control) 45 (49.5)

Improve motor abilities (upper limbs) 40 (44)

Interact with peers 42 (46.2)

Opportunity for a change of position 72 (79.1)

Participate in activities 52 (57.1)

Reduce risk of fractures 23 (25.3)

Reduce risk of hip dislocation or damage 47 (51.6)

Reduce risk of joint contractures 52 (57.1)

Percentages > 100% because participants could choose more than one option.

Prescribing clinicians and non-prescribing professionals consistently reported that they used the frames to
offer the young person a change of position; improve BMD, breathing, bladder and bowel functions;
reduce the risk of fractures and joint contractures; reduce the risk of hip dislocation or damage; and
improve motor abilities, communication, vision, activity enjoyment, participation in activities and peer
interaction (Table 12).

Both prescribing clinicians and non-prescribing professionals reported that as well as child-specific factors,
environmental and personal factors, such as cost, space for use and storage, availability of frames and
parent/young person’s choice of frame also determined the most appropriate standing frame to use.

Tables 13 and 14 outline the difficulties that prescribing clinicians, non-prescribing professionals and
parents experienced with the prescription and use of standing frames. Resourcing and environmental
factors included funding for frames (87% of non-prescribing professionals), physical space in the home
(78% of prescribing clinicians) and a child having a standing frame at nursery/school but not at home
(55% of parents). Child-specific factors as identified by the respondents included needing a rest from using
a frame (25.3%), dislike of using a standing frame (19.8%) and experiencing pain (14.3%). These were
more frequently reported by parents of children who no longer used frames (31.6% of parents of previous
users reported pain compared with 10.4% of parents of current users).

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 12 A comparison of professionals’ rationales for prescribing standing frames

Patient age (years), n (%)

<5 5–11 12–18

Prescribing Non-prescribing Prescribing Non-prescribing Prescribing Non-prescribing

Benefits cliniciansa professionals cliniciansa professionals cliniciansa professionals

Enjoy activities 231 (75.7) 77 (49.7) 230 (75.4) 79 (51) 222 (72.8) 77 (49.7)

Help child 217 (71.1) 68 (43.9) 217 (71.1) 67 (43.2) 212 (69.5) 67 (43.2)
communicate

Help child stand 59 (19.3) 46 (29.7) 96 (31.5) 36 (23.2) 55 (18) 23 (14.8)

independently in
future
Help child to use 173 (56.7) 58 (37.4) 170 (55.7) 56 (36.1) 169 (55.4) 54 (34.8)
their vision

Help child walk in 120 (39.3) 29 (18.7) 77 (25.2) 22 (14.2) 38 (12.5) 15 (9.7)
future

Improve bladder 225 (73.8) 66 (42.6) 231 (75.7) 69 (44.59) 229 (75.1) 65 (41.9)
and bowel
function

Improve bone 217 (71.1) 70 (45.2) 224 (73.4) 71 (45.8) 208 (68.2) 64 (41.3)
density/strength

Improve breathing 205 (67.2) 59 (38.1) 207 (67.9) 61 (39.4) 208 (68.2) 60 (38.7)

Improve motor 243 (79.7) 74 (47.7) 234 (76.7) 75 (48.4) 196 (64.3) 64 (41.3)
abilities (head
control)

Improve motor 221 (72.5) 60 (38.7) 217 (71.1) 62 (40) 176 (57.7) 54 (34.8)
abilities (trunk
control)

Improve motor 226 (74.1) 70 (45.2) 222 (72.8) 72 (46.5) 201 (65.9) 62 (40)
abilities (upper
limbs)

Interact with peers 238 (78) 75 (48.4) 239 (78.4) 76 (49) 233 (76.4) 73 (47.1)
Opportunity for a 245 (80.3) 81 (52.3) 246 (80.7) 82 (51.6) 244 (80) 81 (52.3)
change of position

Participate in 243 (79.7) 79 (51) 242 (79.3) 81 (52.3) 238 (78) 79 (51)
activities

Reduce risk of 175 (57.4) 47 (30.3) 175 (57.4) 51 (32.9) 172 (56.4) 52 (33.5)
fractures

Reduce risk of hip 225 (73.8) 60 (38.7) 219 (71.8) 63 (40.6) 195 (63.9) 56 (36.1)
dislocation or
damage

Reduce risk of 234 (76.7) 67 (43.2) 237 (77.7) 72 (46.5) 232 (76.1) 69 (44.5)
joint contractures
a Responses of non-prescribing and prescribing clinicians refer to indications of standing frame use for GMFCS IV and/or V.
Percentages add up to more than 100% because participants could choose more than one option.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
19
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 1: UK STANDING FRAME PRACTICE

TABLE 13 Difficulties associated with prescription and use of standing frames as identified by professionals

Prescribing Non-prescribing
Difficulties identified by professionals clinicians, n (%) professionals, n (%)

Resources

Allocation of resources or funding for frame 183 (60) 89 (87.4)

Allocation of resources for staff to prescribe/monitor use 64 (21) 42 (27.1)

Availability of parents/carers at home to help position the child 166 (54.4) 74 (47.7)

Availability of staff/carers in school to help position the child 176 (57.7) 72 (46.5)

Environment

Physical space at home 238 (78) 96 (61.9)

Physical space at school 124 (40.7) 53 (34.2)

Transportation of equipment 106 (34.8) 55 (35.5)

Other 62 (20.3) 26 (16.8)
Percentages > 100% because participants could choose more than one option.

TABLE 14 Difficulties associated with prescription and use of standing frames as identified by parents

Parents (previous
users and current Parents (current
users at home users but not at
Difficulties identified by parents only),a n (%) home),b n (%)
Resources

Time 25 (48.1) 4 (12.1)

Do not have a standing frame at home – 18 (54.6)

Using a standing frame at home was not recommended – 2 (6.1)

Availability of parents/carers to help position the child 14 (26.9) 9 (27.3)

Environment

Physical space 19 (36.5) 16 (48.5)

Sometimes moving and handling difficulties at home for child 14 (26.9) 6 (18.2)

Difficulty with access to other equipment used to position child in the 10 (19.2) 3 (9.1)
frame

Child factors

Child dislikes standing in their frame 14 (26.9) 4 (12.1)

Child sometimes wants a rest from using the frame 19 (36.5) 4 (12.1)
Child experiences pain when standing in their frame 12 (23.1) 1 (3)

Other 7 (13.5) 6 (18.2)

a Percentages were calculated out of a total of 52 because this is the number of participants who were eligible to respond
to those questions and provided an answer [parents who had a child who currently uses a standing frame (only outside
the home) did not answer this question].
b Percentages were calculated out of a total of 33 because this the number of participants who were eligible to respond
to those questions and provided an answer [only parents who had a child who currently uses a standing frame (but do
not use it at home) answered this question].
Percentages > 100% because participants could choose more than one option.
‘–’ indicates that the item was not a response option for that group of participants.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

What did survey 1 add?

Survey 1 provided insight into current standing frame use. Standing frames were widely used as part
of postural management for young people with CP, despite limited evidence of clinical effectiveness.
Prescribing practice was generally consistent across the UK, but achieving the prescribed use was not
always possible because of resources or environment/child factors. Professionals and parents of young
people with CP were invested in using standing frames. They reported a variety of benefits, although
they also recognised many challenges associated with standing frame use.

How did survey 1 inform the next step?

Survey 1 was primarily used to inform the content in the next stages of the Understanding Frames study;
that is, single stakeholder focus groups, interviews and multistakeholder focus groups. For example, survey 1
gave the research team insight into the perceived benefits of standing frames. However, it was unclear
which benefits were research priorities for different stakeholder groups. There were also specific topics
and/or issues raised in survey 1 that were necessary to explore with particular stakeholder groups, and these
are outlined here.

The large number of physiotherapist respondents in survey 1 demonstrated that they are a key stakeholder
group with an interest and investment in standing frames. This led to the following topics for exploration:
whether or not physiotherapists are prepared to recruit to a trial, their anticipated barriers to trial
recruitment and what kind of outcomes that they believe would be appropriate to use to examine the
clinical effectiveness of standing frames. In terms of education professionals, we wanted to explore which
of the challenges identified in survey 1 were specific to the classroom. We also asked for their opinions
on adherence to a standing frame prescription, and how they would feel if they could not meet such
requirements for the purposes of a trial. For parents, survey 1 revealed that many older young people were
not using a standing frame, particularly during the school holidays. We needed to explore whether or not
suspending standing frame use for this amount of time for the purposes of a trial (or switching standing
frame use for an appropriate comparator) would be acceptable to parents. We explored all of these issues
in the qualitative stages of the study.

Finally, participants in survey 1 provided contact details if they wished to participate in further stages of the
Understanding Frames study (e.g. focus groups). Parents also provided contact details if their child was
interested in being interviewed. Therefore, survey 1 was vital for participant recruitment for the later stages
of the study.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 4 First stage focus groups:

single stakeholder

Objectives

Five single stakeholder focus groups were held to explore views on the design and challenges of a trial to
determine the clinical effectiveness of standing frame use in young people with CP.

Methods

Population
Single stakeholder focus groups were conducted with the same populations as survey 1; that is, clinicians,
physiotherapists, education staff and parents. Respondents to survey 1 provided their contact details if
they were willing to take part in other stages of the research. From this, a shortlist of potential participants
was created for each group to ensure a representative sample. Potential participants were contacted via
telephone or e-mail (depending on the contact details they provided in survey 1); the study was explained,
and if the person was interested an information sheet and invitation to attend the appropriate focus group
were posted or e-mailed to them, depending on preference.

Topic guide development and conduct of focus groups

A meeting was held with co-applicants Jill Cadwgan, Jan Lecouturier, Johanna Smith and research
associate Jane Goodwin to discuss how the survey 1 results should inform the topic guide, and which
topics should be explored. It was agreed that information on the context (e.g. purpose of study, findings
from our study so far) would be helpful. Rather than rely on attendees reading materials sent beforehand,
it was decided to give a presentation [Microsoft PowerPoint® (Microsoft Corporation, Redmond, WA, USA)
Presentation Manager 2013] about the study, the current evidence base and the results from our study so
far. In addition, it was deemed important to explain levels of evidence and elements of trial design (i.e.
PICOTS framework). Furthermore, it was suggested that we give participants time to introduce themselves,
especially parents, so that there would be an informal, friendly start to the conversation with everyone
given equal status. We chose a few topics to explore in detail with the aim of stimulating rich, thoughtful
discussion. The topics were chosen to clarify the findings from survey 1 (e.g. why was an opportunity for
change of position a benefit of standing frames?) and increase our understanding of research feasibility
(e.g. would school or home be a better setting for a research trial?).

Following the meeting, there was an e-mail conversation with the wider team, and informal discussions
with PPI members, as well as parents and health professionals known to the co-applicant team, were
conducted. Minor adjustments were made as a result of these conversations, such as reducing the amount
of information on the PowerPoint slides. We were also mindful that participants may have invested in
standing frames and may not be aware that there is limited evidence for their use, and sought to handle
this sensitively. The facilitators for each focus group were also decided at this stage. Each focus group had
a lead facilitator and co-facilitator, at least one of whom was a qualitative researcher (JL or JG). The second
facilitator was selected depending on background and logistics.

The final topic guide included (1) opinions on survey 1 results, (2) perceived benefits of standing frames,
(3) challenges associated with standing frame use and (4) feasibility aspect of a future trial (see Appendix 4).
Minor amendments were made to the topic guide for each group, which evolved iteratively. For example, we
asked education staff about their experiences of how young people ‘perform’ in a standing frame at school,
and we asked parents how they felt on learning that there is limited evidence for standing frame use.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
23
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

The brief PowerPoint presentation given at the beginning of the focus group, which informed the
participants and framed the discussion around pertinent issues, is provided in Appendix 5.

Procedure
Five single stakeholder focus groups were conducted, with one each for physiotherapists, medical professionals
and education professionals, and two for parents. One group was held for parents residing in the north and
one in the south of England to ensure that we captured any geographical variation while minimising travel
burden for parents.

The process of contacting and recruiting participants was identical for each of the focus groups. Potential
participants were contacted via telephone or e-mail to explain the study, then an information sheet was
e-mailed or posted out to them if they expressed an interest. Written consent was obtained on the day of
the focus groups, before discussion commenced. Focus groups were digitally recorded with the permission
of the participants. Sound files were transcribed verbatim and anonymised.

Findings

Participants
Five focus groups were convened in June and July 2016: two with parents of young people with CP
(one in the North and one in the South), one with physiotherapists from around the UK (including London,
Newcastle, Leeds, Leicester and Liverpool) who worked in a variety of services, one with clinicians (in the
West Midlands) and one with education staff from a specialist school (in the North East). The numbers
attending the groups ranged from three to nine. The numbers in one of the parent groups and the clinician
group were lower than anticipated, three and five respectively, but the data were rich and all attendees
participated fully in the discussion. It is important to note that because of difficulty in recruiting non-prescribing
clinicians, two members of the research team (AR and KM) participated in the clinician focus group. Therefore,
caution must be taken when interpreting the results, and we have indicated which quotes were from
members of the research team.

Focus group format

Focus groups were scheduled for two hours including breaks. Refreshments were provided at each group.
As a gesture of goodwill, attendees were offered a £10 Amazon voucher (Amazon.com, Inc., Bellevue, WA,
USA). At the beginning, the study information sheet was provided to each attendee and they were given
time to read through it. Written consent was obtained and ground rules agreed. Before the discussion,
and to set the scene, a member of the research team gave a 10-minute PowerPoint® presentation. This
presentation covered background information around the levels of evidence on which clinical decisions
are made and the evidence base for standing frame use, results from the Understanding Frames survey 124
(see Chapter 3), the purpose of the focus groups and the topic questions.

Perceived benefits of standing frame use and potential outcomes for a trial
Participants in survey 1 had been asked to identify the three most important benefits of standing frame
use. We then ranked these based on frequency (Table 15) and presented them on the screen, and a
member of the research team summarised these verbally. The aims were to generate discussion, elicit
attendees’ views on these perceived benefits and ascertain what would be useful and meaningful to
measure to determine the outcome of standing frame use.

Opportunity for a change of position

As illustrated in Chapter 3, ‘change of position’ was one of the most commonly mentioned benefits of
standing frame use cited in survey 1. As there was no opportunity in the survey to elicit why a change
of position was a benefit, this was explored in the groups. Two main reasons were given by parents,

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 15 Ranked benefits from the findings of survey 1

Rank Benefit

1 Opportunity for a change of position

2 Reduce risk of hip dislocation or damage

=3 Reduce risk of joint contractures

=3 Improve bladder and bowel function

5 Improve bone density/strength

6 Enjoy activities
7 Interact with peers

8 Participate in activities

9 Help child stand independently in future

10 Improve motor abilities (trunk control)

11 Improve motor abilities (upper limbs)

12 Help child walk in future

13 Improve motor abilities (head control)

14 Improve breathing

15 Help child use their vision

16 Help child communicate

17 Reduce risk of fractures

physiotherapists and education staff. The first was that it supports social interactions and enables the child
to be able to see what is happening at a different level:

It was a social thing . . . he had a lot of young friends in the community who used to come in
and I think being able to stand when they were standing as well, it was good for him to be at a
similar height.
Parent group

From the educational point of view what is often forgotten about is if you find a different position
your perspective on the world and how you feel about the world and what you see . . . is totally
different . . . as soon as you put them in a standing frame you’ve changed that so they are going
to get a totally different feedback . . . about their environment, about everything.
Education staff group

In the clinician group there was recognition of the importance of standing frames in facilitating social
interaction but also that, depending on the situation, this could be isolating for children:

Because the point about social interaction, I think it’s all very well if you’re in a standing frame but if
you’re static in the classroom with all the other kids running around, you’re not socially interacting.
Clinician group

This was also raised in the physiotherapist group, and one attendee said they had overcome this problem
by having a number of children using standing frames at the same time to form a group. However, the
education staff group, which was from one specialist school, commented that in their school there were too
few standing frames to have one per child, limiting the number who could be standing at the same time.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
25
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

The physiotherapist group recognised the importance of participation and commented that there sometimes
had to be a trade-off between participation and maintaining body structure and body function. They
commented that standing can improve participation in the classroom for some children, particularly those
who use assistive technology such as switches. An example was given of one child who communicated to
the physiotherapist that she felt more alert in the classroom when standing. Education staff were of the
same opinion, and talked of children who were more involved in group discussions when standing, and
could participate in classroom activities such as arts and crafts. The physiotherapist group thought that some
children had better head control when standing, which could facilitate participation in certain classroom
tasks or subjects.

On a less positive note, education staff were also aware of children whose participation was restricted
when standing. For example, when using a communication aid, such as a voice output communication aid
(VOCA), there were problems situating the device at the child’s eye level. They also believed that some
children are not comfortable when standing, either because it is painful or unfamiliar to them:

If you put them in a stander you know they’re not going to perform because they are so concerned
over how they feel because they are not used to being in those positions . . . it overrides everything
and they can’t actually focus on anything else.
Education staff group

The second reason for the importance in a change of position was to give the young person the opportunity
to stretch out after being in a sitting position for sometimes up to 10 hours a day; standing was thought to
combat stiffness. Parents considered how they themselves would feel being restricted to a sitting position for
hours on end and that ‘most people wouldn’t be able to tolerate it at all’. For one parent, the standing frame
achieved both perceived benefits of a change of position:

We usually have the choice of either his wheelchair or his bed. So to keep him in the living room and
keep him with everybody else where everything is going on, transfer him to a standing frame and
allow him to have a bit of a stretch out and still be with everybody.
Parent group

For those in the education staff group, standing fulfilled the need for the children to stretch their muscles,
particularly the hamstrings, and reduce the risk of contractures. They commented that, with some children,
they could see a deterioration in skills (e.g. posture, joint range of movement) and an increase in stiffness
when they had not been using a standing frame.

Parents said a change of position led to something tangible where they could ‘see the relief in a change
of position’ whereas other ‘clinical’ effects were not easy for them to recognise. For this and the other
reasons mentioned, a change of position was considered very important for the majority of parents.

Improve bladder and bowel function

Most parents also supported the survey result of standing frames being beneficial to digestion and bowel
function, and reported that not using a frame had an impact on bowel movement. This was evidenced by
parents who noticed a difference in the school breaks or following surgery when their child did not use a
standing frame:

I know for a fact if he doesn’t stand his bowels do block up.

Parent group

The use of a standing frame to encourage bowel movements was also mentioned in the physiotherapist
and education staff focus groups. The latter said some children stand during or following lunch to aid

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

digestion. The physiotherapist group commented that, for the older children in particular, this was the
main purpose of using a standing frame:

We have children who remain medication free and better managed by their families because of that
reason. And they say if the child doesn’t stand then they have to use medication and that makes it
very difficult to manage the bowels and makes it harder for them to go out.
Physiotherapist group

Improve bone mineral density and reduce risk of contractures

In the clinician group there was a discussion about the potential of standing frames in improving bone
strength and reducing the risk of contractures. BMD was considered to be a surrogate measure of benefit
but if the child ‘does not have an increased rate of fractures, what does it matter?’. One parent attributed
improved bone density to using a standing frame but another parent commented that a trial where this
was the main measure of effect may not be appealing to parents:

When my son had his hip operation, they said that his bone density was really good therefore the
operation was a lot . . . there was a good fix with the pins and stuff. I think had he not used the
standing frame, they wouldn’t have been as strong.
Parent group

I think you’d need a list . . . rather than just one specific thing. Because I think if it was just bone
density . . . I don’t know how eager I would have been to put him in it and go through that every day
when he was younger I think you need to have all the potential benefits to weigh up.
Parent group

Physiotherapists commented that measuring bone density would not be appropriate in children who use
supine boards rather than standing frames, as they are not weight bearing. Another raised the issue of
which bone to measure, and referred to a study where time in a standing frame was doubled but the
team did not measure bone density in the femur: ‘I’m sure if they’d have got different results if they’d
measured the femur instead’. In the clinician group it was thought that a longitudinal study would be
needed to measure the impact of standing on BMD; to date only short-term studies have been conducted
using this as an outcome.

In terms of reducing the risk of contractures, there were mixed feelings in the clinician group about
whether or not this was important in determining the impact of standing frames. One person thought
that if a child uses a wheelchair all of the time, then reducing the risk of contractures was not as important.
There was an alternative view from another in the group which said that pain from contractures was an
important issue; interestingly, pain reduction was not included as a benefit of standing frames in the
responses to survey 1. As well as stressing the importance of reducing pain, the group also concurred with
what was said by physiotherapists, namely that there should be a consideration of what happens to
children in later life:

Standing is a physiological need of the body, it’s not a luxury – long-term pain and contractures do
have . . . a knock-on effect on the rest of the joint . . . long term they may have the effect in their
adulthood as an result of not doing the physiotherapy and the stretching early on.
Clinician group

This person went on to say that if a child is compliant with standing frame use ‘the outcomes that we see
are completely different in terms of contractures and pain’. It was felt in the clinician group that it could be
possible to measure a change in contractures in a 12-month period.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
27
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

Improve motor abilities – trunk, head and upper limbs

The physiotherapist group raised the issue of maintaining movement and mobility of the joints because of
the ‘unknowns’ for these children as they grow. They commented on pain, which was also mentioned as
an important factor by the clinician group:

I think it’s a pain factor and I wonder whether it’s important to maintain a range of movement and
some sort of mobility for all the joints because as they transition into adulthood . . . the debilitating
factor is the pain.
Physiotherapist group

Physiotherapists also believed that maintaining alignment of the trunk and pelvis was important for respiratory
function and preventing scoliosis. Parents and education staff mentioned the benefits of standing frames in
relation to posture:

His core stability is really bad so he leans all the time which I think is making his scoliosis worse as
well. Whereas he hasn’t got as much pressure through his back if he’s in a stander.
Parent group

Education staff gave an example of the difference a standing frame was making for one child by enabling
her to achieve and maintain a straight position while in her wheelchair:

We have one [child] who only recently started going in [standing frame] every morning . . . we’re at
45 minutes of standing, to keep the head up and straighten up and you can’t half see the difference.
. . . It’s working for her.
Education staff group

Prevention or delay of surgical intervention

The potential for standing frames to prevent or delay surgical intervention was a perceived benefit
mentioned by physiotherapists and parents that had not been reported as a finding from survey 1.
For physiotherapists, using a standing frame to prevent surgery would depend on the child’s gross
motor function:

We use standing frames a lot with GMFCS V to maintain and prevent surgery and try and give them
that prolonged stretch that we can’t necessarily do in other positions, whereas then we have GMFCS II
who we would use to try and increase lower limb strength or try to build up the function.
Physiotherapist group

Another commented that they use standing frames primarily to provide a change of position but perhaps
in the back of their mind to prevent surgery:

And I kind of think, well I’m not sure but I’d use it to kind of help prevent hip surgery but I don’t
know whether it does long term or not because I’ve had a few kids who have refused to use standing
frames and use their walkers instead and they’re still doing okay without needing surgery.
Physiotherapist group

A number of parents said their child had undergone surgery despite using a standing frame. There was a
discussion and a belief that their children would have needed surgery regardless, but that use of the
standing frame had delayed it. Despite the fact that the standing frame did not prevent surgery, one
parent said there had been other benefits. Another parent, whose child used a walker and needed hip

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

surgery, said, ‘I do not know if that’s down to me not having a standing frame at home’. A suggestion
was made by the parent group for a study to determine the impact of surgery:

So if you can get X-rays [radiographs] from young babies who are likely to have cerebral palsy or
mobility issues, then you’ll be able to watch the hip X-rays [radiographs] and see whether that’s
making any difference and whether it changes the outcome of them having to have major hip surgery
or not.
Parent group

This reflects the point made by the clinician group that hip dislocation would be difficult as an outcome
measure because of the length of time in which children would have to be followed up. Clinicians also
added that the pathology was little understood and there were a number of confounding variables.

Reduce risk of pressure sores

One parent commented that as children with CP tend to be very thin there is an increased risk of pressure
sores from sitting, and standing reduces that risk. The education staff focus group also mentioned that a
long time spent in a wheelchair can become uncomfortable for children and the opportunity to stand is a
relief for them and ‘takes the pressure off their bottoms’.

Other benefits
Other benefits of standing frames mentioned were improved respiratory function (particularly an
improvement in breathing), helping the child to relax (as they have more support in a standing frame than
in a wheelchair), and reduced spasms. Parent participants also felt emotional seeing their non-ambulant
child in a standing position. These feelings were still very strong, even years later, with participants
becoming teary while discussing it.

What should the trial intervention and comparator be?

In the presentation to the groups the following examples were given of interventions and comparators:
delayed or suspended use of a standing frame, a comparison of other devices, or therapies.

Current standing frame versus no standing frame use

Delayed start
The question was posed, would parents have taken part in a trial in which the introduction of a standing
frame was delayed by 6 months? Clinicians had reservations about the ability to recruit to such a study and
commented that most parents would feel that their child was missing out on a potentially beneficial therapy.
One of the physiotherapists thought that a waiting list control of delayed standing frame introduction would
be an acceptable study design, but then added that they were unsure whether or not this was ethical. When
broached with parents, this option was not popular, despite accounts of delays of months in obtaining a
standing frame when their child was first prescribed one, and the lack of evidence for their clinical effectiveness:

I can see why it would be useful in a study, but I wouldn’t want to be in the group that didn’t [get it].
Parent group

You’d go out of your way to get it if you thought it was going to make any difference at all and I
don’t think I’d want to be a parent in the ‘wait and see group’ if I thought there was something there
that could help.
Parent group

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

The reason for this parental stance was that, even in the face of a lack of evidence of clinical effectiveness,
parents want to ensure that they have tried everything that may benefit their child; they would feel that they
were missing out in a ‘delayed use’ trial design. Parents mentioned they would feel guilty if they delayed the
introduction of anything that may help:

. . . it would always be in the back of your head that if they had been in it sooner would it have made
any difference.
Parent group

Some commented that it would be unlikely that parents would be happy to participate if they had to delay
the intervention onset, particularly as it would be around the same time as receiving their child’s diagnosis
of CP. Only one parent disagreed:

You see I would have done. My daughter, she was 9 months old before she was diagnosed and . . .
I saw the standing frames in a line and they looked like pieces of torture equipment . . . so if they’d
given me a choice I’d have said no.
Parent group

This parent said she had not been aware of the lack of evidence of the benefits of standing frames at
that time. One parent in the other group felt that an awareness of the rationale for, and the benefits of,
standing frame use would ‘give the parent more of an understanding of whether they would want to take
part in something like that or not’.

Even when an alternative therapy was suggested for the delayed standing frame group, opposition to the
idea remained in the parent group. However, one parent said that it would depend on the alternative
therapy and mentioned their experience of having physiotherapy ‘with a lot of standing’ when her child
was younger. In the other parent group, hydrotherapy was mentioned as an alternative and this appeared
to have the approval of the other parents.

Suspended standing frame use

Withdrawal of the standing frame was not a popular option and the majority were uncomfortable with
this as a trial design. It was not something clinicians or physiotherapists would feel happy to approach
parents about and recruit children to. Education staff would be unhappy to deliver this type of intervention
based on the belief that standing frames are beneficial:

If you said, ‘don’t stand this student and stand that student to see if it’s any different’, because
their overall health is obviously what’s going to come first and we couldn’t do that because of
the implications of not standing . . . and it would be too risky.
Education staff group

A suggested option was to provide an alternative therapy rather than having nothing at all. In addition, to
withdraw standing frame use would require the staff who prescribe them to communicate to parents and
children the uncertainty around the benefits:

It’s difficult to do a comparison with no equipment whatsoever because lots of the equipment that we
use has been used for years and years so how can we say ‘we’ve suddenly decided it might not be
useful anymore so we’re just going to remove it’ . . . so I think you’d definitively have to compare one
equipment versus another.
Physiotherapist group

One other option identified would be to take advantage of the ‘natural’ breaks in the use of a standing
frame. Parents suggested that, for example, bowel function and opportunity for change in position could
be measured when children have surgical intervention. Another disruption in standing frame use for most

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

children is the school summer break (discussed below) and parents commented that when the children
returned to school the physiotherapists knew whether or not they had been standing during the holiday:

The first thing he’d say is . . . hasn’t done any stretches. His legs would be crossed and they’d be bent.
Parent group

Fifteen other potential interventions were suggested (Table 16) across the five focus groups, with the
current standing frame as a comparator. Some involved increased time in the current standing frame or
additional therapies and others suggested different means of postural management. These are discussed
in the following sections.

Increased time in standing frame per day

The option of an intervention to compare two specified periods of time spent in a standing frame was
raised spontaneously (i.e. without prompting from the facilitators) by the clinician focus group. This option
was preferable to an intervention where one group of children would delay or stop using a standing frame
for a certain period:

There certainly will be an intervention where two identical children, one had an hour, one has half an
hour and see what the difference is. So rather than none at all just reduce the amount of therapy.
Would that provide an answer? I don’t know.
Clinician group – co-applicant KM

TABLE 16 Suggestions for trial comparators and intervention

Participant
group Comparator Intervention
Parents Increased/reduced time in standing frame per day Standing frame use according
Education staff to prescription
Physiotherapists
Clinicians
Parents Use standing frame in summer holiday period/school breaks
Physiotherapists
Clinicians
Parents No standing framea
Education staff
Clinicians
Parents Delayed start and other therapy
Physiotherapists
Clinicians
Parents New/different model of standing frame
Education staff
Parents Other therapies (e.g. physiotherapy, botulinum toxin injections,
Education staff stretching, massage rebound therapy)
Parents Powered/mobile standing frame
Physiotherapists
Parents Standing frame plus physiotherapy
Hydrotherapy
Other equipment (e.g. seating systems, sleep systems, power chair)
Physiotherapists Supine board
Night-time positioning
Sleep system
Abducted standing frame
Suspended standing – sling or hoist
Clinicians Contracture correction device
a If there are regions where standing frames are not prescribed.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

Increased time spent in a standing frame compared with the standard prescribed time was a more popular
option with the parent focus group, who thought that this would assuage any guilt parents may feel
about delaying standing frame use. However, the issue of whether or not the child would be able to
tolerate the recommended time was raised. Rather than a specified time, some in the parent focus group
thought that a trial of frequency of standing frame use for a time that the child could tolerate may be
more acceptable to parents:

So you could say to a parent . . . ‘You do once a day of your maximum toleration’ and another parent,
‘do twice a day at the maximum toleration’. I think that’s the only way you could get the benefit of
. . . a standing frame.
Parent group

Although not raised as an intervention by the education staff group, they did comment that standing for
40 minutes ‘must be uncomfortable’. They said that while some children do enjoy standing, particularly the
pressure from being strapped in and held securely (also raised by the parent group), others do not. Some
children are visibly tired at the end of the specified period. One also thought that certain children say it is
painful as an excuse for being taken out of the standing frame:

He just wants out. He doesn’t like being in it so everything will hurt because he knows that that’s a
way of getting down.
Education staff group

Other issues were raised about the feasibility of adhering to a prescribed frequency of standing. For
example, parents mentioned that periods when the child is in hospital for surgery and is not able to stand
as a result of this would interfere with such an intervention. In addition, one parent felt that not having
the freedom to get their child into a standing frame when they thought that they had been sitting for too
long would be a struggle for parents. Moreover, as another parent pointed out, when the standing frame
is used to facilitate other functions a specified frequency of standing could be a problem:

If [child] needed to open her bowels I’m not going to say, ‘Oh she’s been in this morning, I’m not
going to put her in.’ How would you control it? I’d have to put her in then say, ‘She’s been in
twice today’.
Parent group

Parents’ focus was primarily on the practical implications of the proposed trial intervention occurring in the
home setting. They commented that time (to lift and position the young person in the standing frame)
was an issue, particularly when juggling other demands and with the need for ‘several hands’ to do it
effectively. Another area of concern was lifting and handling with only one parent or carer present because
of the risk of injury to the child and difficulty in attaining the correct positioning. Space was also an issue as
many parents are unable to have a standing frame in the home because of its size. Some parents thought
that this could have an impact on quality of life, particularly on the time they have available should they
want to take their child out. It was also considered too burdensome and impractical for families:

Prescribing to parents that [children] have to go in it this many times, actually that could be really hard.
If someone’s ill or something else has happened, I just think there are enough pressures on parents.
Parent group

There was mention in the parent group that the trial could be conducted in a home setting with younger
children (2–7 years of age), but recruiting parents to it could be problematic and they would have to fully
understand the rationale for the study.

The parent group introduced the idea of conducting the intervention in a school setting because of these
difficulties. However, the education staff group raised a number of problems with standing frame use in

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schools. Apart from the shortage of equipment, there was the extra time and manpower required to get
the child into the frame, which could interfere with class activity. In addition, there was the fact that the
frame may have been adjusted to meet the needs of the last child who used it and would then need
to be readjusted for the next user. Although not averse to the idea of running a trial in the school setting,
education staff stressed there would have to be adequate support and resources in place to do so.
Clinicians thought that teachers and teaching assistants may struggle to find the time to put a child in
their standing frame, and that adherence to study protocol may be difficult.

Standing frame use outside the school term

Most parents said their child was not able to use a standing frame in the school summer break as they
did not have the equipment at home. This period of non-use of standing frames was considered to cause
problems with chest infections, bowel functions and returning to standing frame use when back to school.
This view was shared by the physiotherapist group, who mentioned the difficulties of getting children back
to using a frame. However, they thought that increased standing would only make a difference to a
certain proportion of children with CP:

For some children who are on a fine line of maintaining function – and we’ve all probably got
them – that you just know that they’re going to go one way and then you’ll never get then back on
[standing]. Those types of children I feel are the ones that 6 weeks without a standing frame . . .
have secondary complications that cause a big effect.
Physiotherapist group

One physiotherapist had experience of providing a standing frame for a child over the summer period and
it was not used. The education staff group mentioned using the half term and/or six week summer break
as an opportunity for children to continue to use a standing frame ‘if there was somewhere they could go
to use a stander’ and ‘see the difference before and after summer’.

Current standing frame versus other equipment/therapies

Non-static standing
Parents asked if the future trial could explore the impact or benefits of different types of standing frames
rather than concentrate solely on the current standard in a delayed or increased frequency intervention.
There was discussion around a non-static or motorised standing frame and the idea that this would make
standing a more pleasurable experience and potentially improve compliance in standing:

My son hated standing for a long time and we realised it was because we took him from his
wheelchair that he could self-propel, put him in a standing frame where he couldn’t move so we were
taking away his independence . . . So when we found a standing frame with big wheels he loves it.
His default is now standing and he sits for his change of position. Sometimes I think that the whole
culture needs to be changed. Who picked sitting as the standard?
Parent group

Parents wondered if factors, such as boredom, rather than solely pain, may explain why children do not
enjoy their time in a standing frame. One parent used videos to distract their child from the fact he was in
a standing frame. Being able to control movement while in the standing frame was said to make them
forget that ‘they are trussed up in a standing frame’. It was considered that this would make a difference
to their children in terms of emotions, including their levels of happiness:

You can actually get wheels for the EasyStand as well, or you can get the motorised ones. You can
get different additions to it, which would obviously help with greater independence if they’re able
to move around the home in a standing position because they can choose their own position.
Parent group

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

Non-static standing frames or ‘walkers’ were also mentioned by physiotherapists when asked what other
therapies could be compared with current standing frames in a future trial. One had experience of
reviewing one of these with children in her care:

I think walking frames would be a good comparison because then you’re still getting the upright
posture, you can still get quite a lot of support but then it’s more of an active intervention rather
than a passive stretch.
Physiotherapist group

A lot of the improvements were parents felt [the child had] looser bladder and bowels but the fun
they had out of it was fantastic . . . it was wonderful seeing the child moving and the child loved it
as well. So on that participation and function, on normality it was fantastic.
Physiotherapist group

Non-static standing frames were also mentioned in the physiotherapist focus group when discussing the
children’s enjoyment of being in a standing frame. The group believed that mobile standing frames could
enhance participation in a number of ways:

It gives them more participation and it gives them more function and a bit of freedom and they can
go around the playground with the others.
Physiotherapist group

Clinicians also commented that, in contrast to a static standing frame where a child may feel isolated in
the classroom, participation may be improved if children are in ‘that sort of rabbit walker thing, yes, maybe
you can engage more’. However, the cost of mobile standing frames was mentioned by both parents and
physiotherapists as being prohibitive. Physiotherapists added that training in how to secure the child in the
mobile standing frame would be required to ensure that they were safe.

Supine positioning
Physiotherapists also discussed supine positioning as a comparator to static standing, but the choice of
this within a trial context would depend on what outcome was being measured. They considered supine
boards, which can be tilted from flat to upright, which would be suitable if the outcome of interest was
trunk and pelvis alignment. This was felt to be important in maintaining the ‘range of movements at the
pelvis and the trunk in order to sit and function’. It was said also to help with respiratory function and as
a way of stretching without standing. Supine positioning is suitable for children with poor head control
whereas standing frames often are not:

If you brought them from supine all the way up they wouldn’t be able to lift their heads up. So they
are children who are from say between 9 and 12, 13. They still get that benefit of stretching out and a
couple of them really struggle to tolerate sitting for longer periods, they become really uncomfortable,
so they like to come out.
Physiotherapist group

Continuing with the discussion of maintaining alignment, hip integrity was thought by other physiotherapists
in the group to be important, but with the end point being the prevention of surgical intervention.
Night-time positioning and sleep systems were thought to help with hip integrity and were raised as other
potential comparators to standing frames:

There’s an Acheeva® [Ledbury, UK] bed which is like a sleep system but you use it during the daytime
and you can put an incline on it. You can use it prone or supine . . . though for some kids it doesn’t
hold their posture quite as firmly as a standing frame does.
Physiotherapist group

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The physiotherapists said they would be happy to recruit to this type of intervention and there was a
discussion around whether or not this could be introduced in term time and then continued throughout
the 6-week summer break. There was some anxiety around the withdrawal of standing frames for the
group who would be randomised to supine positioning and it was stressed that it would have to be for a
‘limited period’.

Other standing frames and therapies

Abducted standing frames and suspended standing were also mentioned by physiotherapists. The former
were said to have been around for years but do not appear to have been popular or commonly available
among school equipment.

Target population in a trial of standing frame use

Apart from clinicians, the general view across the stakeholder groups was that the target sample should
be younger children, ideally aged around 2–7 years. Education staff commented that the use of standing
frames is easier with younger children because they can be distracted by play activities, and moving and
handling take less time. Parents mentioned that, with younger people, the prevention of hip contractures
and the delay of surgery is something that it would be feasible to measure. Clinicians considered age to be
unimportant, unless the intervention was to delay the introduction of a standing frame, yet recognised
that it would be an impacting variable.

For the physiotherapists the exceptions were if the intervention was ‘all year’ standing frame use
(i.e. including the summer break) versus treatment as usual, in which case a suitable group would be
children aged 14 or 15 years, where maintaining function is critical.

Time and again the issue of the variability of how children are affected by CP was raised. Parents commented
on the heterogeneity of children with CP and how this could be problematic in a trial as there are ‘no two
children the same’:

Cerebral palsy affects them in so many different ways. My son’s a GMFCS V so he’s the most severe
but then he doesn’t have dystonia, he’s got the other type where he gets stiff.
Parent group

The physiotherapy group demonstrated that standing frames were prescribed for different reasons and this
was very much dependent on the child:

What am I using this piece of equipment for? Am I trying to . . . Is it the only way they’re going to get
any weight bearing? So even if I don’t think it’s the best way to strengthen their bones it might be the
only way available. Or do I want them to be able to stand with their family in the kitchen and cook?
Then it’s your goals around participation.
Physiotherapist group

Education staff believed that further inclusion criteria would have to be children who (1) could tolerate
the standing position, (2) did not have problems with their vision and (3) were able to communicate.
Parents concurred and commented that to compare increased standing ‘may skew results’ if children
who could and could not tolerate increased standing were included. Although they did not suggest this
in the context of which children to include in a trial, education staff contrasted children who have used a
standing frame from a very young age with those, where it has been introduced later, who ‘struggle a
bit more’:

Kids who have come in from being 3 years old and they’ve been put in the little standing frames . . .
they’ll accept it as part of the day because that’s what you do, like washing your hands . . . whereas
the other kids they haven’t got their head around it as much.
Education staff group

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 FIRST STAGE FOCUS GROUPS: SINGLE STAKEHOLDER

Other challenges
The challenges identified were around the ‘noise’ from other therapies and interventions and the ‘fidelity’
of an intervention. That is, most groups talked about the fact that children would be having other
interventions, not solely a standing frame, and how can you determine what results were caused by the
standing frame?:

Because of all the input that children have I think it’d [be] very difficult to define what is exclusively
because of the stander.
Parent group

It was considered unreasonable to stop these other interventions. It was also said that some parents
do more at home with their children than others do and it would be difficult to expect them to stop.
Parent participants noted that they were not particularly concerned with the lack of research evidence for
standing frames. They would always choose the option that may benefit their child, and if they could see a
positive outcome, they would continue to do what they think is best:

I think we do a lot of things for our children where there’s very limited evidence, because they are so
complex. As parents, we’re used to a stab in the dark. If a therapist says ‘We think this will help,
anecdotally this kind of helps’ then we’ll try it. It’d be lovely if there was clear evidence, because it
would help with funding, getting consistent provision.
Parent group

Similarly, physiotherapists focused on the needs of the individual young person, and suggested that
standing and/or walking was not always the best way to promote positive outcomes for them:

I think there is an emphasis in paediatric physiotherapy very much on the walking and the standing of
the child and it’s this goal that we have to achieve walking – even [though] we know now that many
children GMFCS IV and V will not achieve independent functional walking, and yet we strive for that in
maintaining, in particular, hip extension at the cost of everything else . . . I think we sometimes really
need to re-focus . . . We need to look at each child individually and what they’re actually doing and
how it functions.
Physiotherapist group

There was some discussion in the clinician group around dependency on the ‘operator’ during a trial and
the need to ensure that the child is correctly positioned and secured in the standing frame or whatever is
used. Education staff also mentioned a lack of confidence in knowing they had done this correctly with the
current standing frames they use in schools. There was the view that the physiotherapists were the most
skilled at this. Comments were also made about the design of fastenings when hook and loop fasteners
could creep out, or that the child’s family might loosen them if they felt they were too tight.

What did the single stakeholder focus groups add?

The single stakeholder focus groups added greater understanding to the survey 1 results, including
highlighting some issues not identified through the survey responses. They provided vital information
about potential designs of and the feasibility of a standing frames trial. The main findings are outlined
in Chapter 5.

Emotional equipoise was an issue across all groups apart from the clinician group. Orthopaedic surgeons and
physiotherapists had a strong belief that without standing frames there may be progressive deterioration in
young people with CP. The views of parents in particular were entrenched in the idea that standing frames
are good, which was not surprising as most had invested time and effort over the years in using them
with their children. This would have to be managed in a future trial when recruiting participants.

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Parents themselves raised the issue of educating other parents to help them make an informed decision in
the context of a trial.

Parents across both the Northern and Southern groups suggested more potential benefits of standing frame
use compared with other stakeholders. It was a surprise to parents that there was no robust evidence for
standing frame use. Health professionals had a greater awareness of what can/cannot be altered or
improved in the condition and mentioned fewer potential benefits of standing frames. A number of the
proposed outcomes would require a longitudinal study in order to answer the question about the impact of
standing frames. Some would be feasible to measure in some children but not in others, depending on their
GMFCS level.

The type of intervention was in some ways determined by the outcome of interest. Physiotherapists stressed
that if the goal is to maintain hip integrity the child should be able to move; if the goal is to stretch then the
child should not be able to move. The most popular intervention by far, and the one considered to have an
impact on participation and probably compliance in standing, was the non-static standing frame, but there
would be significant cost implications for this to be a comparator in a trial.

There was no consensus about how long the intervention should last and this would be dependent on the
choice of intervention and the outcome of interest.

How did the single stakeholder focus groups inform the next step?

The single stakeholder focus groups provided essential information about potential benefits and challenges
of standing frame use. This informed the topic guides for the subsequent interviews and multistakeholder
focus groups.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
37
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 5 Interviews

Objectives

The objective of the interviews was to explore the attitudes of young people with CP to standing frame use.

Methods

Population
Young people were identified as potential participants by their parents, who had completed the survey 1
questionnaire, or through the clinical services of members of the co-applicant group. Young people were
eligible to take part if they were aged 8–18 years and currently used or had used a standing frame.

Topic guide development and conduct of interviews

The young person was given the option to have a communication support person of their choice. At times,
the choice of the young person’s communication support was crucial to the success of the interview, as it
enhanced the young person’s understanding of the questions and as well as the interviewer’s understanding
of their response. A number of steps were taken to ensure the trustworthiness of the interview data. The
interviewer (JG) was experienced and confident in communicating with young people. This was enhanced
through regular visits to a local specialist school to spend time with young people with CP and learn about
their communication methods and equipment use. The interviewer built up a rapport with the young people
to enable her to feel confident that they understood the questions and were giving their honest answers,
rather than the answers that they felt the researcher would like to hear. Building a rapport took a variety of
forms, including playing games, singing, sitting in on classroom activities, chatting about the young person’s
toys, playing with family pets and generally trying to make the situation informal and fun. Importantly, the
interviewer emphasised that she did not know much about standing frames, and as such, it was helpful for
the young person to explain both what they liked and disliked about them; they would not get in trouble for
anything they said. Furthermore, the interviewer was creative about how they talked to the young people.
Answering direct questions was not always possible; alternatives were used such as showing pictures of
standing frames, and asking the young person to show the interviewer their own standing frame. Following
each interview, the researchers were debriefed to determine whether or not the topic guide should be
amended. Only minor changes were deemed necessary to capture aspects of the experience not initially
considered; for example, whether or not the young peoples’ opinions on standing frames had changed over
time and how they would feel if they were not allowed to use a standing frame any more. See Appendix 6
for the topic guide.

Based on the developmental and cognitive level of the young people we interviewed, discussion about
participating in a hypothetical trial was an idea that was too complex and abstract. However, we explored
the idea of randomisation by asking the young people about choice in standing (e.g. ‘if this group of
young people used a standing frame and that group didn’t, which group would you rather be in? Should
young people be able to choose which group they are in?’).

Procedure
Parents of potential participants were contacted via telephone or e-mail to explain the study. Following this,
an information sheet for both parent and young person were sent out. There were two versions of the young
people’s information sheet to accommodate different methods of communication and cognitive ability.
The parents then received a follow-up phone call and if the young person was interested, an interview was
arranged. Each young person was offered an opportunity to meet the interviewer for familiarity and topic
planning prior to the interview. Recruitment continued until data saturation, defined as three consecutive

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 INTERVIEWS

interviews not returning new themes,25 by agreement among the research team. The young people were
purposively selected to ensure that there was representation from a range of ages, GMFCS levels, gender,
educational settings and regions of the UK.

Assent to participate from the young person and consent from the young person’s parent was obtained.
The two participants aged 18 years consented for themselves, although this decision was made in
collaboration with their parents. All interviews were audio-recorded for transcription and transcribed
verbatim. Pseudonyms have been used to preserve anonymity.

Findings

Participants
Participants were 12 young people with CP who were currently using or had used standing frames at some
point in the past. Their characteristics and experience with standing frames are outlined in Table 17. For the
participant given the pseudonym Tiffany we have included her mother’s quotes as she spoke for her and
Tiffany indicated agreement by enthusiastically nodding. Tiffany’s mother made comments about Tiffany’s
experience, then checked whether or not Tiffany agreed. The interviewer then re-confirmed with Tiffany.
Although Tiffany had the opportunity to disagree with her mother’s statements, it is important to note that
she may have felt unable to do this because of her rapport with the interviewer or her relationship with her
mother. However, the interviewer was confident that Tiffany could express her opinion comfortably because
of conversations unrelated to the interview content; for example, when the interviewer commented that
Tiffany must be excited to return to school after holidays, she strongly disagreed.

Interview format
Interviews were conducted between June and November 2016 at a location of the young person’s or
carer’s choosing. All elected to be interviewed at school or home. These settings were primarily chosen for
the participants’ comfort and ease of access. At the beginning of the interview, the young people’s study
information sheet was provided to each participant (and their support people) and the researcher talked
them through it, particularly emphasising that they did not have to answer any questions they did not
want to, and could stop the interview at any time. Written consent and assent was obtained. Interviews
ranged between 10 minutes and 38 seconds and 35 minutes and 11 seconds in length. As a gesture of
goodwill, participants were offered a £10 Amazon voucher.

Attitudes to standing frames

Understanding standing frame use

Participants were asked why they used their standing frames. The young people thought that standing
frames were primarily used for improving aspects of body structure and body function. In particular, they
suggested that standing frames were beneficial for bone strength, leg strength, growth, posture and
general physical health:

[Standing frames help you] to stand up tall and make your legs get straight and not bendy. Make your
body stronger, not weaker.
Fred

Another reported physical benefit was an extended stretch of their muscles. Some participants said they
really enjoyed this sensation, especially after sitting for long periods. They believed it helped with their
overall comfort, particularly in relation to their range of movement (or ‘flexibility’) and contracture
prevention. The standing frame was perceived to be the only way to properly stretch their muscles:

I’m getting a stretch at every part, your hip flexors, your knees, your hamstrings and because there’s
no other way . . . where you can get a better stretch.
Will

40
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for

DOI: 10.3310/hta22500
TABLE 17 Interview participant characteristics

Currently
Age of first using a Standing
Age Predominant standing frame standing frame Support person Communication method in
Name Sex (years) GMFCS motor pattern use (years) frame? setting Standing programme in interview interview

Connor Male 8 IV Spasticity 2 Yes School More than three times per Class teacher Speech, some comments/
week for 30–60 minutes probing from support person

Olivia Female 9 IV Spasticity 1 Yes Home Every day for Mother and sister Speech, some comments
30–60 minutes from support people

Kyle Male 11 V Dystonia 1 No, stopped N/A N/A Mother and Limited speech, comments
aged 9 years teaching and probing from support
assistant people

Brooke Female 12 IV Mixed 2 Yes Home More than three times per Mother Speech, a little input from
week for 30–60 minutes support person

Will Male 13 IV Spasticity 6 No, stopped N/A N/A N/A Speech

aged 11 years

HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Tiffany Female 13 V Dystonia 1 Yes Home More than three times per Mother and Voice output communication
week for 30–60 minutes respite carer aid. Comments from support
person, Tiffany indicated
agreement or disagreement

Fred Male 14 IV Spasticity 3 Yes Home More than three times per Mother Limited speech, some
week for 30–60 minutes comments and probing from
support person

Sophia Female 14 IV Spasticity 6 or 7 Yes Home Not known Friend Speech, a little input from
support person

Gemma Female 15 IV Mixed 5 Yes School One per week, < 30 mins N/A Speech

Robert Male 17 IV Spasticity 3 Yes School More than three times per Mother Speech, some comments/
week for 30–60 minutes probing from support person

Maddie Female 18 IV Spasticity 6 Yes School More than three times per School Speech, a little input from
week for 30–60 minutes physiotherapist support person

Bart Male 18 IV Mixed 4 Yes School Once per week for N/A Speech
30–60 minutes
N/A, not applicable.
41
 INTERVIEWS

Standing frames gave the participants an opportunity for a change of position, which could be enjoyable
for a variety of reasons, including having a ‘different view of surroundings’, ‘being in the upright position’
and ‘the feeling of being tall’. The importance of a position change was also related to pain management.
Although participants enjoyed the mobility and independence of their wheelchairs, sitting for long periods
was reported to be ‘uncomfortable’ and could make the young people ‘achy and hurty’:

I know that if I sat in here 24 hours a day, 7 days a week I would get quite tight and I would get
probably a lot more pain than I do if I wasn’t in the standing frame.
Bart

Despite these benefits pain was an issue for many of the participants. General pain, knee pain and foot
pain were all reported, especially after standing for ‘a while’ or ‘too long’:

I can’t, like, wait there for too long because otherwise it hurts my foot.
Gemma

Pain did not necessarily dissuade the young people from using (or asking to use) their standing frame.
Rather, they were pragmatic about their pain and believed it was something to be endured in order to
obtain positive outcomes for their physical health. Participants tolerated the discomfort of standing frames
and focused instead on the advantages they believed that standing might give them in the long term:

I had an operation on my hip and they said, ‘Not many people get to 17 without needing the hip
done.’ . . . For me to get to this age with only needing one [hip operated on] is all to do with standing,
so there are benefits to go with the pain.
Bart

Bart also commented that he did not always feel this way. When he was younger, he never wanted to be
put in his standing frame. His understanding of the (perceived) importance of standing frame use had
developed with age:

. . . When I was much younger I never wanted to be going in it. I always used to complain . . . Then I
would have to go in. Now that I’m older, I feel the benefit of it.
Bart

Experience of standing frame use

Being in a standing frame could allow the young people to participate in activities that would otherwise
be impossible. Compared with a wheelchair, the standing frame gives the young person a different
perspective on the world, and thus they have the freedom to independently engage in different tasks:

I had a bit more independence as well because I could actually wash the dishes or stand up . . . That is
incredible how a stand can change how independent a person is.
Will

On the other hand, standing frames could also be quite restrictive and inhibited independence. As Olivia
commented: ‘I cannot get around in the stander like everyone else can. [The powered wheelchair] is ‘sort
of my legs’’. A static standing frame limits the young people’s mobility and forces them to rely on others
for help:

There’s not many things you can do in the stander that involves you by yourself . . . I do a lot of
independent things inside my wheelchair that I can’t do in the standing frame.
Bart

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

One participant mentioned that using the standing frame was an activity in itself and thus did not facilitate
her ability to engage in other tasks. Standing required a lot of effort and concentration, much like going to
the gym. Brooke did not see the need to do additional activities while in her standing frame:

I don’t like to do something. I just feel like it’s already doing something and I’d rather be in my
wheelchair or on the floor when I’m doing anything else.
Brooke

In addition, standing frame use could be associated with discomfort and pain for a variety of reasons
beyond standing for too long (as mentioned previously). Sometimes this was perceived to be caused
by the general way the young person’s CP presents:

He tends to pull at everything. That is why in those frames he would extend and pull and twist. That is
probably why it ended up being uncomfortable.
Kyle’s mother

Other times, it was related to a specific body part or injury which the standing frame could aggravate.
For example, Gemma had particular trouble with her foot, and as such found it difficult to bear weight:

I don’t want to really force myself to use the stander at the moment, because my foot – it doesn’t
know how it’s going to react to it. Because obviously it is getting really, really painful for me to
do anything.
Gemma

Several participants also mentioned how frightening being in a standing frame could be. Because they
spent the majority of their life in a wheelchair, standing was an unusual position for them. Sophia
commented that standing frames were too high, and she was ‘scared of heights’. The fears could persist
despite the fact that they knew logically they did not need to be scared while in the standing frame:

I must seem like a big baby or scaredy-cat to some people, but I am actually genuinely frightened and
nervous. No matter how much people say I’m safe, that doesn’t help me because I know I’m safe,
but a part of my brain just tells me I’m not safe.
Brooke

Although standing could feel quite strange and scary, some young people suggested that it is possible to
become accustomed to the sensation. For young people using a standing frame for the first time they
emphasised the importance of self-pacing:

It is very weird standing at first. But I would say, ‘if you’re uncomfortable just take your time.’ It does
take time to get used to one, so I’d say, ‘just take your time and build up the confidence.’
Robert

Impact on peer interaction

Participants often used their standing frames for specific (sometimes solitary) tasks, such as school work.
However, their positioning also had an impact on their social interactions, both positively and negatively.
Connor found standing frames problematic particularly for peer interaction, describing time in his standing
frame as ‘boring’ and ‘stinky’. Using his standing frame at school meant he was much higher/taller than
his peers, who sat at desks. This meant it was difficult to engage socially:

Connor’s teacher: I think that you like your chair better than your stander because . . . when you’re in
your stander you’re a bit higher than everyone else . . . You don’t like standing up, separate.

Connor: It’s really boring, isn’t it?

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Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 INTERVIEWS

However, another participant felt that being in a standing frame improved her peer interaction, particularly
when she had attended a mainstream school. Standing allowed her to ‘fit in’:

The able-bodied children would relate to her differently and she was more like them because she was
upright. It’s strange just changing position meant that.
Tiffany’s mother

Play
Olivia used her standing frame routinely for many tasks, such as toileting, eating and drinking. However,
it also featured regularly in her play, especially with her sister, Olga:

I do painting and colouring and marking, like playing schools.

Olivia

Olivia stood in her frame to give herself a more dominant role in games, such as pretending to be a school
teacher in front of her ‘class’. Her sister sometimes ‘wants to be disabled’ during play, so puts herself into
the standing frame. Their mother noted that play between the sisters naturally incorporated the standing
frame which, as a by-product, then teaches Olga about Olivia’s care needs. For example, as part of their
role-playing games, Olga would strap Olivia in her hoist or position her in the standing frame.

Choice in standing
The young person’s choice about if and when they use their standing frame was a particularly salient issue.
One young person was very keen to use a standing frame but did not have access to one. Others were
frustrated about having to stand even though they did not want to. Some young people were happy not
to have a choice about their standing:

I don’t mind what they say. I just go in the stander.

Fred

Although some participants technically had a choice about when they used their standing frame (e.g. they
were asked whether or not they want to stand rather than being told they have to), they experienced
negative reactions when they chose not to stand:

It is just the fact that we have to stand it for quite a long time . . . I can say no, but I always get
moaned at for saying no because it is what is best for me.
Sophia

Many young people preferred the comfort and independence of their wheelchair over being stationary in a
standing frame. Several participants commented on how society has dictated ‘normal’ postural positioning,
which did not suit them as individuals:

I’m not a big fan of standing and I call it ‘the fault of life’ because I’m like, ‘Why do we have to?’
It’s like, ‘Why was this even invented and why did the world turn out this way?’.
Brooke

Interestingly, when asked if young people should have a choice about using a standing frame, one
participant suggested that they should not:

Even though it’s pretty horrible to say, it’s probably the best thing for them, because when I was much
younger I never wanted to be going in it . . . [but] now that I’m older, I feel the benefit of it.
Bart

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Bart emphasised the need to explain the potential benefits of using a standing frame, even to very young
children. This type of pragmatism was again evident when young people thought about long-term goals,
rather than the discomfort of standing. They could weigh up the positive and negative aspects and make
their choice about whether or not to stand:

I ask to go in it because I know it will help me with standing, but I’m reluctant to actually. I don’t
really feel like the whole of me wants to go.
Brooke

Although the young people discussed many obstacles, one factor that actually helped them to use their
standing frame was emotional support. It was important to have an opportunity to complain every so
often, even if the young person was generally willing to use their standing frame:

My mum is very good. She listens to me. Even though she might be tired about it and heard it five
million times, she still goes, ‘OK,’ and still tries to talk me through it because she’s my mum and she’s
very supportive. All my family are really supportive.
Brooke

Challenges of standing frames

A major challenge for standing frame use was the manual lifting and handling it requires. Generally,
two people were needed to make it possible for the young person to be positioned properly in their
standing frame:

It’s a right job to get you transferred from the chair into the standing frame, and then out the standing
frame into the chair.
Robert

The person or people positioning the young person not having the requisite skills could also be problematic,
affecting the young person’s ability to use their standing frame. The carers required comprehensive training
to ensure that the young person is comfortable and has their needs met:

It hurts because some people ping it so hard and I feel like saying, ‘Do you want to hurt me? Do you
want to . . .?’ But I don’t . . .
Olivia

This issue was exacerbated for Tiffany, who had to have her VOCA adjusted with the change of position.
If it was not set up correctly, she could not communicate the way she needed to while standing:

I think the challenge is with the people helping her need to know the equipment well and need to
know how to position the communication equipment for her.
Tiffany’s mother

Another challenge when using the standing frame was interference from siblings. Parts of the standing
frame (e.g. the angle adjustments) were at an accessible height for siblings, which could leave the young
person in the standing frame vulnerable:

You used to happily be standing in it and then [your brother] used to adjust it and you used to be at a
funny angle. Or he would take all your toys away.
Kyle’s mother

Standing frame design

The young people were particularly concerned with the type of standing frame they were using. It was
important for them to feel safe and comfortable. As it was also desirable to be able to distract themselves

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Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 INTERVIEWS

from the pain, the young people tried to engage themselves in activities to keep themselves occupied.
Some types of standing frame enhanced their ability to do this because of the size or attachments. For
example, standing frames with tray attachments enabled them to enjoy particular activities independently:

The older ones have a tray or bowl in the middle so you could put cake mixture in it. There was a
plastic tray that goes on top of the bowl . . . it’s the world’s best invention.
Will

Participants suggested that having a TV or music player connected to the frame would be beneficial.
Aesthetics were thought to be important too and it was felt that young people would be more
enthusiastic about using their standing frames if they could choose the colours and patterns. It would
make standing less ‘boring’:

[I’d] change the colour of the standing frame because it’s boring . . . It would look colourful and look nice.
Maddie

Flexibility of the standing frame was also valued. Tiffany’s sit-to-stand frame was favoured because the
level of stretch she received could be adjusted depending on her tolerance each day. An added benefit
of this type of standing frame was that Tiffany had the independence to control her own standing
(and comfort) using the levers:

She can say when it’s a comfortable stretch. Different days can be different, so she could have a
bigger stretch one day and a smaller stretch another day . . . when she’s had enough she can let
herself back down for the sitting position.
Tiffany’s mother

Size: lack of space

Another challenge of standing frames is their physical size. Standing frames take up a lot of space,
and this causes difficulty in the home. It also means that the standing frame cannot always be used
as intended. For example, Kyle was not able to move around in his dynamic stander:

The stand was at the back and the back legs came out so far that we couldn’t actually move me in it
that well.
Kyle

Some young people overcame this issue by storing and using their standing frame at a place that is big
enough, for example, school:

I tend to use it at school because we really haven’t got the space at home to accommodate it, have we?
Robert

What did the interviews add?

The interviews provided essential information regarding young people’s perceptions and experiences of
using standing frames. Based on PPI advice and the experience of the co-applicant team, this was the
most appropriate way to gain young people’s views (as opposed to the surveys and focus groups that were
used for other stakeholders). Therefore, these interviews were a proxy for the stages of the Understanding
Frames study that were inaccessible for young people with CP. The interviews have shown that young
people have clear opinions but do not often get the chance to express them. Feelings about standing
frames are unique to the individual; however, we now know that participation and activity engagement are
particularly important to young people.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

How did the interviews inform the next step?

The interviews informed the co-applicant team’s understanding of how a research trial might feasibly be
designed, keeping in mind the issues that are most important to the users themselves (e.g. participation).
This was particularly useful in the final stages of the study, when different trial designs were being considered.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 6 Multistakeholder focus groups

Objectives

The objective of the multistakeholder focus groups was to explore views on the acceptability and feasibility
of potential trial designs to examine the clinical effectiveness of standing frame use in young people with
CP. Mixed groups were chosen to allow for rich and meaningful discussions between different stakeholders.

Methods

Population
Eligibility was the same as for the single stakeholder focus groups, for parents and professionals. None of
the single stakeholder focus group participants were approached as we did not want the group to be
influenced by previous discussions. Again, potential participants were sought from survey 1 who were
willing to take part in further stages of the research (with priority given to those approached for the
single stakeholder focus groups who had expressed keen interest but were unable to attend) and
personal contacts.

A shortlist of potential participants was created by Jill Cadwgan, Sarah Crombie, Jan Lecouturier and
Jane Goodwin to ensure a sample with representation from a variety of stakeholders, including, but not
limited to, physiotherapists, parents, paediatricians, orthopaedic surgeons and education professionals.

Topic guide development and conduct of focus groups

A topic guide was developed based on the previous stages to examine the stakeholders’ perceptions of
standing frames research. Topics included (1) perceptions of research priorities, (2) acceptable periods
of non-use and (3) support needs to ensure that a standing frame is used as prescribed. A brief PowerPoint
presentation of the study results thus far was made at the start of the focus groups to inform the participants
and frame the discussion of pertinent issues. See Appendix 7 for the PowerPoint presentation and topic guide.

Procedure
Two multistakeholder focus groups were conducted. One focus group was held in the north and the other
was held in the south of England to allow for a representative sample without requiring too much travel
for participants. Multistakeholder focus groups were convened to allow for discussion between different
stakeholder groups.

The process of contacting and recruiting participants was identical for each of the focus groups. Potential
participants were contacted via telephone or e-mail to explain the study, then an information sheet was
e-mailed or posted to them if they expressed an interest. Written consent was obtained on the day of the
focus groups before discussion commenced. Focus groups were digitally recorded with the permission of
the participants. Sound files were transcribed verbatim and anonymised.

Findings

Participants
Two focus groups were convened in December 2016, one in the north and one in the south of England.
In the Northern group, participants were two education professionals (mainstream – classroom support
assistants), one parent, one orthopaedic surgeon, one neurodisability paediatrician, one paediatric neurologist,
one research occupational therapist and one physiotherapist. In the Southern group, participants were

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 MULTISTAKEHOLDER FOCUS GROUPS

five physiotherapists, one community occupational therapist, one paediatrician and one education professional
(early years key worker). Although we invited three–five parents to each of these focus groups and had
confirmed attendance, many cancelled at the last minute because of their child’s health. Therefore, we only
had one parent participant across both groups.

Focus group format

Focus groups were scheduled for 2 hours and refreshments were provided. Participants were offered a
£10 Amazon voucher as a gesture of goodwill. At the beginning, the study information sheet was
provided to each participant and they were given time to read it through. Written consent was obtained
and the ground rules were agreed. Before the discussion, and to set the scene, a member of the research
team gave a 10 minute presentation. This presentation covered results to date from survey 1, the single
stakeholder focus groups and interviews, potential PICOTS for a standing frames trial, the purpose of the
focus groups and the topic questions.

The findings are outlined here in the PICOTS framework, to provide a clear outline of how the data from
these multistakeholder focus groups could be incorporated into a standing frames trial. A section about
the participants’ reservations for a trial has also been added to highlight the potential challenges,
particularly regarding ethics issues of research in this population.

Population
Throughout the focus group discussions and the exploration of the most appropriate group to participate
in a future trial, it was clear that the age, GMFCS level and cognitive ability would determine the choice of
intervention and/or the outcome. Participants also noted that age, school setting and cognitive ability may
have an impact on standing frame perceptions.

Age
It was thought that an intervention to introduce standing frame use in the 6-week summer break would
be problematic in the preschool-age young people who tend to have a standing frame in the home. This
would require those randomised to the control group to stop using their standing frame at home, which
was considered ‘tricky’ and unlikely to be acceptable to parents. However, older young people usually
do not have a standing frame at home because of the lack of space and could be a suitable group for
such a design. In addition, it was recognised that preschool children generally enjoy being in their standing
frames; it is the older children who often are reluctant and this could have implications for compliance in
a future study. Nevertheless, participants in the South felt that a range of ages should be included and
divided into preschool, primary and secondary school children, but the issue of conducting a trial in mainstream
schools was acknowledged as something that would have to be thought through. Issues highlighted in the
single stakeholder groups about the potential for children or young people in mainstream schools to feel
isolated if they are the only people standing in the classroom were also raised.

Gross Motor Function Classification System level

Gross Motor Function Classification System level was an important consideration for all focus group
participants. The groups reported that some young people were put in standing frames unnecessarily,
for example, with GMFCS II, because the activities they could do, such as walking, were likely to have
more impact on bone density and hip migration than passive standing. This means that GMFCS I and II
would be considered groups to exclude from a standing frame study. Owing to the variation in how
children are affected by CP across and within the GMFCS levels, selection of the most appropriate level for
any research study was felt to be crucial. Alternatively, if a range of levels was included then they could
potentially be separated at the analysis stage:

I think even within one level you can get so much variation that you’re going to find it really difficult
to show significant differences unless that group is really, really narrow.
Southern group – physiotherapist

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

The intervention of the use of standing frames in the summer break was also thought to be more appropriate
for GMFCS IV and V. This group of children ‘would be the ones who would probably deteriorate’ if they were
not using a standing frame and a difference could be detected in those who continue standing throughout
the break. Participants commented that the selection of GMFCS level would also determine the type of
equipment used in a trial:

So like for the GMFCS level IV and maybe some of the Vs you could look at, for example, a kid walker
versus a standing frame.
Southern group – physiotherapist

If the outcome of interest is participation, this could look very different, as the activities would vary
considerably depending on GMFCS level. If hip dislocation is the selected outcome then participants were
not convinced that the standing frame would help young people with more severe CP, such as GMFCS V:

I think a lot of parents have a lot of guilt and . . . the last thing we want to do as therapists is add to
that guilt. So if they think, ‘if my child isn’t in their standing frame twice a day for 30 minutes then
now they’ve got contractures or their hip is dislocated, this is all my fault.’ Well, the evidence quite
strongly shows us that’s not the case and that that was going to happen regardless of whether they
were in the standing frame or not.
Southern group – physiotherapist

Cognitive ability
The fact that some children do not enjoy being in a standing frame, and find standing painful, was raised.
One suggestion for future research was to explore whether or not the standing frame is useful for the
individual and whether or not they choose to use it. In the Southern group, cognitive ability was raised
as a potential barrier to measuring participation if it were chosen as an outcome, particularly if the means
of measurement was feedback from the child or young person or an interview. This was picked up in the
Northern group, where there was some frustration about young people with severe learning disabilities
generally being excluded from research; differences in intellectual functioning may be related to standing
frame experiences, and a research trial must capture this:

I do struggle sometimes, because there’s so much research for children who can show an ability, or do
motor skills, or this, that and the other. It’s like, ‘oh, OK. Could you just try and find a way to help
those who can’t? Who haven’t got the motor skills, who can’t do a clear yes/no?’ But I absolutely
appreciate that it’s incredibly difficult to find a way to do it.
Northern group – parent

Both groups were particularly keen to make the study as inclusive as possible and a possible solution was
proposed that parents could act as a proxy to read the young person’s ‘signs’. For example, a smile can
mean they enjoy standing.

Intervention
The interventions discussed in the focus groups were: no standing versus standing, increased standing time
and comparison of different types of standing frames.

No standing versus standing

With a treatment versus no treatment trial, participants noted the difficulty of measuring outcomes such as
body structure and body function outcomes because treatment would need to be withdrawn for too long
to see any difference:

You’d have to remove it for long enough to actually believe there could be a difference. If you were
going to be thinking about ‘does using the standing frame help constipation?’ ‘Does using the standing
frame make a child less stiff or reduce their tone?’ . . . You’d have to remove it for quite a long period.
Southern group – physiotherapist

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 MULTISTAKEHOLDER FOCUS GROUPS

Withdrawing standing frames when they are already used in routine practice was considered problematic
(and potentially unethical), and other 24-hour postural management may have an effect on a study’s
outcome measures. It was thought that families would be uncomfortable with withdrawing standing
frames as an intervention, as some believe ‘that it’s really making a difference to their child’. Even if
parents did accept withdrawal, what would parents consider an acceptable period? What they think is
acceptable may not be sufficient time to measure any changes.

Increased standing time versus current standing time

Based on the experience of a number of participants in the Southern group who have cared for young
people with CP who disliked standing, there was a slightly more negative view of standing frames. They
felt compliance with increased standing could be a major problem. There were certain young people for
whom standing improved things like function, integration and communication, and compliance would
not be a problem; it would be possible to select such young people, but this would have implications for
trial design. On the other hand, in the Northern group standing duration was considered to be a viable
option, but the most appropriate outcome would be difficult to determine, practical issues were identified
and it may not be feasible in practice:

In terms of looking at an outcome like bone density – frames are already widely used, you’re not
looking at a study that would be no use of the standing frame over 6 years. So it’s going to be
a difference in time. So we have to say, ‘how much more would they have to do to be different
from what is used now, and closer to where they need to be?’ It’s then very difficult to power the
difference, and it may not be practical. Although it may be something that we all want to know
the answer to . . . it’s just too difficult to detect the difference, because we can’t go back to zero,
we can’t go back in time and not use standing frames.
Northern group – orthopaedic surgeon

The practicalities of implementing an increased standing time intervention in schools were also raised.

Another option, rather than increased time standing per day, would be to continue standing for a group
of young people over the 6-week summer break. A number of participants in the Northern group
expressed views on the impact of the 6-week break in standing:

A lot of physios will tell you that children who haven’t stood over the 6-week holiday do come back
to school more contracted, less head control . . . it may be that you could look at that side of things
for some children.
Northern group – physiotherapist

However, one person in the group asked whether or not this deterioration over the holiday period was
‘retrievable’:

Hey, we can get back there, and actually they’ve had some mental space during their holiday.
Northern group – paediatric neurologist

It was generally agreed that this intervention would be more suitable with older children who are unlikely to
have and use a standing frame in the home. Then there would be no need to ask certain families to stop
using the standing frame if they were randomised into the control group. The logistics were discussed, in
particular where young people would go to use a standing frame in the summer break; several suggestions
were made, including specialist schools’ facilities, although this could result in a long distance to travel for
some families.

Delayed standing
Delaying the introduction of a standing frame at the time when the young person was diagnosed with
CP was discussed in the groups. Some participants thought that delaying standing frame use would be

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acceptable from a clinical perspective but not to parents. The parent perspective was that the point when
parents receive the diagnosis is too stressful a time to make such a decision:

At an early stage you’re just bombarded. You’re in this new world and you just don’t know what to
do, where to turn and to be faced with a decision like ‘Are you happy for your child to be delayed
starting?’ It’s a massive, massive decision to take.
Northern group – parent

This led to a discussion about equipoise and that ‘many therapists and many clinicians will perceive
(standing frames) as best practice’. Furthermore, standing frames are already used and being prescribed.
Both of these factors make it difficult for parents to believe that they may not be of benefit.

In the Southern group, delayed standing was not discussed in any depth. However, during the discussion of
the results of survey 1, one participant expressed reservations about the early introduction of standing frames:

The ages that we are recommending, so we are going down sometimes even young than a year to
start standing up and I’m not always sure parents are ready for that equipment to be in their lives
because they have not really had time to come to terms with their child’s diagnosis.
Southern group – physiotherapist

Similarly, in the Southern group a discussion about equipoise ensued. This was in relation to therapists and
the need for honesty when explaining to parents the reasons a standing frame is being prescribed
and the lack of evidence for their use.

Comparison of different standing frames

There was also discussion about the type of standing frame a research trial could and should use. Rather
than withdraw standing, one preference was to introduce something different. The Southern group
thought that it would be worthwhile comparing static standing versus a supportive walker (or equipment
such as trikes). The intervention might be more enjoyable if it was more active, because the young person
and their family might be more motivated to use it. There might need to be different comparators for each
GMFCS level, and it would be challenging to do such a study:

It means it would be easier to do a comparison, I think, with supported walkers instead. It depends.
I still think that the outcome should be about child activity and participation. It’s not going to be easy.
Southern group – physiotherapist

Participants in the Northern group concluded that the type of frame probably does not matter as long as
the young person is as perpendicular as possible:

I do not know whether it makes such a huge difference once the child’s standing. If they are in the
most appropriate frame for them, then I would not think that would make a huge difference.
Northern group – physiotherapist

However, participants in the Southern group noted challenges with this approach; different needs were
met for young people with CP in terms of standing frame type, positioning and alignment. This was seen
as creating difficulties for standardising standing frame practice for the purposes of a research trial, and
impacting on outcome variables related to activity and participation:

There does not seem to be consensus as to the best, the right way – not only the best standing frame,
but the best way of positioning and placing a child and that may, again, impact on the activity and
participation that’s possible, the comfort that’s possible, you know, how are they going to deal with
that, that there is some children who are more difficult to position than others? What’s your best
possible alignment? What do we mean by that?
Southern group – physiotherapist

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
53
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 MULTISTAKEHOLDER FOCUS GROUPS

Participants in the Southern group suggested choosing a specific standing frame for a trial because
‘otherwise you’re not comparing like with like’.

Although driven primarily by the outcome of participation, a comparison of standing versus sitting was
suggested. This would involve the young person carrying out an activity they enjoy (tailored for each
person) in their standing frame and in their wheelchair. It may require qualitative methods, observing
whether or not the young person seems happier if they are not able to express this themselves, and
quantitative, for example, measuring whether or not they can engage in the activity for longer. Outcomes
could be determined for each individual, rather than having an overall outcome measure across
participants. That is, using an individualised, goal-oriented outcome.

Comparator
A number of the controls or comparators have been described in relation to the intervention: standing
frame as currently prescribed (treatment as usual). The Southern group also suggested identifying a place
where standing frames are not prescribed to compare with groups who do use standing frames. Certain
variables related to activity and participation may be compared in this way:

I think it’s a really interesting idea is finding a natural group where people do not stand, so using
countries where people perhaps cannot access . . . You could measure the same, from a participation
point of view.
Southern group – physiotherapist

However, the other participants pointed out that the trial would then need to consider confounders such
as culture, diet and medication differences.

Outcome
Participants believed that it is important to have information about the body structure and functional
benefits of standing frames as primary evidence for their use. The parent participant commented that
the standing frame helped with digestion and bowel movements, and if these are not managed correctly,
there is an effect on the rest of the young person’s functioning (and the family’s happiness). The young
person’s quality of life is also extremely important. Although these are potential outcome variables, it is
difficult for parents to isolate each benefit of standing frame use, as they all overlap:

If I picked one, I cannot single them, but two. The first one that has an impact on lots of other things
[is] his digestion and bowel movement. If he gets constipated, that has a real knock-on effect on
everything he can do. So helping his bowel and digestion actually facilitates him doing lots of other
things. Then the second one is just his enjoyment. He just absolutely loves standing up.
Northern group – parent

What came across quite strongly in the groups was the importance participants placed on measuring
activity and participation in activities as outcomes of standing frame use. When considering the benefits
of standing frames, the views of equipment users are most important. Participants believed that what is
measured should be guided by what young people want. It was suggested that we need to investigate
whether or not standing is a positive experience for the young person, and if so, in what way. The young
person’s motivation for standing must be considered, especially if they did an activity they particularly liked
or disliked in a standing frame:

I think we need to focus on the users of that equipment . . . regardless of what it provides for
everyone else. Because an added benefit . . . would be improved alignment or reduced bone density or
reduced joint contractures. But their actual ability to participate with their friends does much more for
their confidence and their self-esteem.
Southern group – physiotherapist

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Professionals monitor . . . the body structure and function, and then there is more what I call a
subjective benefit, related to the participation and the activity, and then there’s the question of the
environment. I call that subjective, because I believe what the family feeds back to me, or the physio
feeds back to me.
Northern group – orthopaedic surgeon

Throughout the discussion, participants commented that outcome variables for a trial would also depend
on the young person’s age, GMFCS level and school setting. They felt that it would be difficult to design a
trial because therapies were tailored to the individual, and there would be challenges investigating each
potential benefit. Each benefit might require a different approach to investigation and different resource
depending on the intervention and outcome. For example, the ‘change of position’ identified by parents
as important was considered likely to be part of pain management. Other comparator positions might be
painful (e.g. lying on their stomach), so this would need to be considered when designing a trial:

Yes, but they do not like that [lying on their stomach], and also most young children, especially the
ones that have got poor head control, hate going on their tummy.
Northern group – physiotherapist

Participants suggested that a mixed-methods approach would be appropriate to explore the clinical
effectiveness of standing frames because, although functional assessments are important, qualitative
research can provide rich insights on life:

You can do both quantitative and qualitative. So you can use your health-related quality-of-life
measures. You can use your CP child, you can use elements of functional assessment, functional
outcome. But I think it would be a strongly important thing to have a reflection running alongside . . .
Southern group – paediatrician

Timing
Owing to the in-depth discussion and focus on the most appropriate intervention and outcome, the
duration of a potential trial and data collection time points were not discussed in great depth. Where this
was discussed was in relation to withdrawal of standing frame. Apart from the fact this may not be
popular with parents, one participant commented that a 6-week to 3-month withdrawal period would be
required for a difference in body structure to become noticeable. Another person felt that up to 3 months’
withdrawal was too short and indicative of the problem with previous research:

All the bad evidence that is out there is because it’s done for too short a period of time with too little
follow-up. Imagine if you, fundamentally, really want to look at something, it’s got to be a long trial
and it’s got to have a long-term follow-up. A lot of decisions are being made . . . on poor quality data
short period and it’s not appropriate.
Southern group – paediatrician

In the Southern group, the importance of study duration and follow-up was emphasised. It was expressed
that 2 years might not be long enough to determine the impact of using/not using a standing frame. In
terms of securing a research grant, it was thought that funding for a 2-year intervention study was feasible
but ideally, there should be scope to follow participants up over a further 2 years. This led the group to
suggest a cohort study rather than a trial:

This is not some sort of thing that you can get a big difference quickly by doing something. This is
almost a cohort trial rather than anything that is more specifically interventional. So you are probably
going to be having to look at relatively high numbers.
Southern group – paediatrician

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
55
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 MULTISTAKEHOLDER FOCUS GROUPS

Also, if it was a cohort you could follow the same children through that age range as well instead of
having different children, which would be a helpful thing to do.
Southern group – physiotherapist

Setting
Participants perceived that few young people use standing frames in mainstream schools, especially
secondary school, as a result of logistics, such as changing classrooms, stairs and young people wanting to
sit like their peers. Therefore, a standing frames trial should focus on young people at specialist schools.

The intervention to extend standing frame use in the summer break could be challenging because there
may not be enough caregivers or physical space for the young person to use their standing frame.
Furthermore, a lot of other things change during this period (e.g. therapy), and it would be difficult to
determine what impact was caused by the standing frame:

We see a lot of the children who come up for surgery, who have interventions. They always want to
come in the holidays to kind of deal with it, that’s another confounding – how do you exclude people
from the study. So do you exclude people who are having botulinum toxin injections or surgery . . .
Southern group – physiotherapist

Reservations about a trial

Participants acknowledged that a trial would be difficult because of the variation in CP presentation and the
individual benefits the standing frame has. Furthermore, some benefits are unlikely to be anticipated during
prescription, such as ‘feeling tall’. The young person’s well-being is important, and careful consideration
must be given to the priorities in their life at the time. Standing frames should not be used at the cost of all
other activities:

When there is a split placement, it’s more important that they are doing the things that they are
coming to a mainstream school for. Well, I think it is, than actually being in a standing frame at
that time. There are other opportunities to be in a standing frame.
Northern group – physiotherapist

There were a number of issues highlighted that should be explored. First, withdrawing treatment may not
be acceptable to parents, young people or health professionals. It is important to know what it means for
the young person to not be able to access their standing frame. Furthermore, if not standing results in loss
of function, can it be regained?

Secondly, parents may question delaying standing frame use when it is considered best (or at least routine)
practice. Along with this, when considering a trial with younger children (e.g. delayed start), participants
emphasised that it would be essential to be mindful of the parents’ journey with CP. Parents are bombarded
with information at the time of diagnosis and rely on people to help them navigate. They may not be able
to consent and fully understand the implications of participation. Seeing their child standing can be very
emotional for parents. It remains a salient memory even years later. Therapists in the Southern group spoke
of their responsibility to be honest in the way they introduce standing frames. They wanted to work towards
honest goals with families to avoid adding guilt and burden. Open communication is required so families
understand that therapies can be adapted and adjusted. Potential benefit needs to be balanced with what is
possible and comfortable:

I think that’s one of the challenges isn’t it, working long term, is to be open and honest and to say,
‘we are working together on this. And if it’s not working for you or your child, you must tell us, so
that we can adapt it or adjust it.’ As you said, be honest and say, ‘these are the reasons we are
using it.’
Southern group – physiotherapist

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Similarly, despite the perceived need for evidence, focus group participants from the South particularly
warned of creating unnecessary emotional distress for families through a trial. Tension may arise between
parents and young people if the young person was forced to use the standing frame even if it was
uncomfortable. Parents can also feel guilty for not using the standing frame if they believed that they
were effective:

They also have that guilt of not knowing [who] to listen to when their children is complaining in pain.
And they still feel obliged to put their child in a standing frame, because they believe all of these
things will go wrong, if they do not. And I think we do not help parent and child relationships in that
instance, because we have got a child who’s saying they do not want to do it and we are causing a
level of conflict between the parent and the child, which in any other situation, where the child did
not have a disability we would not necessarily accept. So I think we open ourselves up to affecting
that sort of family relationship.
Southern group – physiotherapist

Finally, in order to take part in a standing frame trial, the people positioning the young person would need
to have adequate training to achieve the optimum effect. This could be feasible using technology:

You could make little videos on iPads [Apple Inc. Cupertino, CA, USA] that the school have.
Northern group – occupational therapist

What did the multistakeholder focus groups add?

The multistakeholder focus groups added more in-depth clinical insight into potential trial designs for
different stakeholder groups and reinforced some of the findings from the single stakeholder groups.
The variety of participants allowed for rich discussion of the different priorities for each stakeholder group.
Participants delineated appropriate parameters for each section of the PICOTS. There would be interaction
between each aspect; for example, the chosen outcome would affect the type of participants (in terms of
age, GMFCS level and cognitive ability) and vice versa. A mixed-methods design was repeatedly suggested
in order to adequately capture the outcomes and experiences of young people with CP.

Generally, both focus groups from the North and South were in agreement, with a few exceptions. The
Northern group believed that the type of standing frame used would not affect the study (as long as it was
prescribed appropriately for the individual), whereas the Southern group felt that the type of standing
frame would need to be the same to properly compare the young people. However, this would reduce the
potential participant pool, as only some young people would be suitable for a specified standing frame.

For a trial, there would be barriers to overcome for all stakeholders as each person brings their unique
experiences and biases to their perceptions of the value of standing frames. Professionals, parents, and
young people are not in emotional equipoise despite understanding the evidential equipoise. Standing
frames are currently regularly used as part of postural management, and some participants believed that
this indicates they are clinically effective.

How did the multistakeholder focus groups inform the next step?

Overall, there was a strong theme throughout the multistakeholder focus groups of participation and/or
the young person’s well-being. All stakeholders emphasised how important it is to consider the individual,
because young people with CP are different in many ways. This is a major challenge to a standing frames
trial. Studies related to long-term body structure outcomes are unlikely to be feasible or funded. This is
because of difficulties with timelines (e.g. length of time required to show differences in body structure),
populations (e.g. variation in young people with CP), and confounders (e.g. other therapies). Therefore,

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
57
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 MULTISTAKEHOLDER FOCUS GROUPS

innovative thinking is required to design a research study that is feasible. It is important to give insight into
the clinical benefit of standing frames beyond body structure and body function, including participation
and quality of life. A mixed-methods design, with a qualitative process evaluation, alongside a RCT and
economic evaluation, is likely to be most appropriate to capture the broader experiences of the young
people, their families and professionals (health care and education), as well as the clinical effectiveness and
cost-effectiveness end points. The information provided by the multistakeholder focus groups informed the
questions for survey 2, which explored the acceptability and feasibility of a research trial.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 7 Survey 2: research trial acceptability

and feasibility

Objectives

A survey was conducted from April to May 2017 to explore the perceived value of standing frames
research. Opinions were gathered on a specific research design as well as the practicalities of conducting
the research more generally, including feasibility and acceptability. Owing to the anonymous nature of the
questionnaires, it was impossible to determine how many participants took part in both survey 1 and
survey 2 or to link responses across the two surveys.

Methods

Population
Three populations in the UK were sampled for this study:

l Health professionals: physiotherapists and paediatricians who work or have worked with young people
with CP who use standing frames.
l Education professionals: teachers who work or have worked with young people with CP who use
standing frames.
l Parents: parents of young people with CP who currently use or have used a standing frame.

Young people with CP who currently use or have used a standing frame were not participants in this stage
of the study because completing a survey was not an appropriate way to collect their data. This is because
young people with CP GMFCS III–V have a variety of communication methods, and reading and writing
are less likely to be an accessible communication style for this particular group. However, we included
young people’s voices in the interview stage, and used parents as a proxies (surveys, focus groups and PPI).

Questionnaire development: research trial acceptability and feasibility

Survey 2 was developed using the same procedure as survey 1. The questionnaire was devised based
on the information gathered in the previous stages of the study. Separate versions of the questionnaire
were designed for the three participant populations to ensure that the questions were relevant and used
appropriate language, although all versions explored similar concepts.

The questions related to the perceived value of standing frames research and opinions about how a
research study could be conducted (e.g. Which age group of young people with CP do you think would
be most suitable for a standing frames research study?). Furthermore, an example research study was
presented, and participants were asked to provide their views about its feasibility and factors that would
prevent them from recruiting to, or participating in, such a study. Most questions had fixed-choice
responses with a free-text box to explain the response (see Appendices 8–10).

Procedure
Survey 2 followed the same procedure as survey 1 (see Chapter 3) and was conducted from April to May
2017. As per protocol, ethics approval was sought and approved for the final version of survey 2, as it was
dependent on the results from all previous stages of the study.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
59
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 2: RESEARCH TRIAL ACCEPTABILITY AND FEASIBILITY

Results

Participants
Numbers included in the final analysis are presented here. Figure 3 indicates participant flow through the
study from responses received to responses included in the final analysis. In survey 2, we did not distinguish
between prescribers and non-prescribers as per survey 1 (current UK standing frame practice; see Chapter 3):

l Health professionals – physiotherapists and paediatricians who work with young people with CP who
use standing frames, n = 467.
l Education professionals – teachers who work with young people with CP who use standing
frames, n = 44.
l Parents – parents of young people with CP who currently use or have used a standing frame, n = 74.

Unfortunately, during recruitment, we identified that there was a sudden significant increase in responses
over a 12-hour period. The responses did not seem genuine; for example, false postcodes and unusual
e-mail addresses were provided, there were odd responding patterns (e.g. participants identifying as
physiotherapists and parents and paediatricians and speech pathologists), and answers were in Chinese
script. Following urgent co-applicant discussion, the surveys were closed. On the next working day,
Jill Cadwgan sought advice from the HTA and the chair of the steering committee. It was decided that
further recruitment should be discontinued for the following reasons:

1. Genuine responses were reviewed. Participants provided the first two letters of their postcode, and we
could see that there was already a spread across the UK.
2. A detailed examination of the responses, including the open-ended answers, revealed a consistent
message. It seemed unlikely that new participants would add new information.
3. We analysed the data using descriptive statistics only. Therefore, we did not need a certain amount of
participant numbers to meet the assumptions of any statistical tests.
4. It would have required a significant amount of resources, may have delayed study progress and may
have only resulted in an extra few responses.
5. We felt that our resources in the closing months of the study would be better spent engaging with key
stakeholders to inform our recommendations.

Health professionals

Reasons for exclusion

Responses received • Suspected spam, n = 9 Final analysis
(n = 512) • No response after (n = 467)
consent, n = 30
• Not working in the UK,
n=4
• Completed the survey
twice, n = 2
Education professionals

Reasons for exclusion

Responses received • Suspected spam, n = 72 Final analysis
(n = 124) • No response after (n = 44)
consent, n = 8

Parents

Reasons for exclusion

Responses received • Suspected spam, n = 41 Final analysis
(n = 161) • No response after (n = 74)
consent, n = 14
• Child did not have CP,
n = 32

FIGURE 3 Survey 2: participant flow through the study from responses received to responses included in the final analysis.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Table 18 outlines the respondent characteristics. Most health-care respondents were physiotherapists (83.5%)
and most education respondents were classroom teachers or support assistants (77.3%). The majority of
health professionals worked in community settings: at home (n = 300), in specialist education (n = 299), and/or
in mainstream education (n = 272) (multiple responses were allowed). Education professionals tended to work
in specialist schools (79.9%). Seventy-four per cent of parent respondents had a child who currently used a
standing frame and most had a child who attended a specialist school (64.8%).

TABLE 18 Characteristics of the two professional groups, and the children whose parents responded

Health professionals, Education professionals, Parents,

Characteristic n (%) n (%) n (%)

Rolea
Physiotherapist 390 (83.5) – –
Paediatrician 24 (5.1) – –
Therapy assistant or technical instructor 21 (4.5) – –
Occupational therapist 15 (3.2) – –
Other 10 (2.1) 4 (9.2) –
Orthopaedic surgeon 4 (0.9) – –
Classroom teacher or support teacher 2 (0.4) 34 (77.3) –
Parent 1 (0.2) – 74 (100)
Health professional – 7 (15.9) –
Missing 0 0 0
Education setting
Specialist school (private/other e.g. charity funding) – 28 (63.6) 26 (35.1)
Specialist school (state funded) – 7 (16.3) 22 (29.7)
Mainstream (state funded) – 4 (9.1) 13 (17.6)
Other – 3 (6.8) 8 (10.8)
Mainstream school with additional resource for SEND – 1 (2.3) 2 (2.7)
Mainstream (private) – 0 2 (2.7)
Missing – 1 (2.3) 1 (1.4)
a
Current working environment
Community – home 300 (64.2) – –
Community – special education centre 299 (64) – –
Community – mainstream education centre 272 (58.2) – –
Child development or family centre clinic 237 (50.7) – –
Outpatients 138 (29.6) – –
Inpatients 79 (16.9) – –
Other 36 (7.7) – –
Missing 70 (14.9) – –
SEND, Special Education Needs and Disability.
a Participants could choose more than one option.
‘–’ indicates that the item was not a response option for that group of participants.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
61
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 2: RESEARCH TRIAL ACCEPTABILITY AND FEASIBILITY

Importance of a research study

The majority of respondents in all participant groups suggested that further research into standing frames
was needed but one-quarter of education professionals were not sure, and their open-ended responses
indicated that this was because they were not aware of the findings from existing standing frames
research. Most respondents in each participant group thought that standing frames should be used
for non-ambulant young people with CP, and 78.2% of health professionals believed that they are
clinically effective.

There were mixed responses as to whether or not health and education professionals would agree to
young people with CP ceasing standing frame use if there was good-quality evidence showing that
standing frames were not beneficial. The open-ended responses indicated that health professionals do
not believe that there is any point in continuing with ineffective interventions, but research demonstrating
that that was the case would need to be supported by professional bodies. Other health professionals did
not routinely use standing frames in their practice anyway and as such felt that the state of the research
would not change their practice. Those who disagreed with, or were unsure about, stopping standing
frame use, even if there was good-quality evidence to do so, cited reasons such as the importance of
giving young people an opportunity for a change of position, not being confident enough to make the
decision themselves, perceptions of benefits regardless of evidence, and difficulty persuading parents to
stop anyway. Many health professionals also commented that there would need to be evidence that
standing frames caused harm, not simply that there were no benefits; the research would need to be
extremely robust and conclusive. Education professionals also noted that there was no need to continue
an intervention, such as a standing frame, if it proved not to be beneficial, but they would primarily follow
advice from their health professional colleagues (e.g. physiotherapists). Others did not agree or were
unsure because they felt that the young person’s preference and individual needs, rather than research
evidence, should dictate standing frame use. Professional experience was in support of the positive effects
of a change of position through standing frame use.

Most respondents indicated that young people ≤ 11 years of age were most suitable to be recruited to
standing frame research. Approximately half of each professional group said they would be willing
to change their standing frame practice for a research trial compared with 63.6% of parents. It was
considered acceptable by most participants to suspend or delay standing frame use for up to 12 weeks
(Table 19).

TABLE 19 Perceptions regarding the importance of a standing frame research study

Health professionals, Education professionals, Parents,

Perception n (%) n (%) n (%)

Standing frames should be used for children with CP GMFCS III–V

Yes 415 (88.9) 34 (77.3) 62 (83.8)

No 2 (0.4) 0 (0) 1 (1.4)

Did not know 12 (2.6) 2 (4.5) 6 (8.1)

Missing 38 (8.1) 8 (18.2) 5 (6.8)

I personally believe that standing frames are clinically effective

Yes 365 (78.2) – –

No 8 (1.7) – –
Did not know 56 (12) – –

Missing 38 (8.1) – –

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 19 Perceptions regarding the importance of a standing frame research study (continued )

Health professionals, Education professionals, Parents,

Perception n (%) n (%) n (%)

Further research into standing frames is necessary

Yes 400 (85.7) 26 (59.1) 62 (83.8)

No 3 (0.6) 0 1 (1.4)

Did not know 29 (6.2) 11 (25) 6 (8.1)

Missing 35 (7.5) 7 (15.9) 5 (6.8)

I would agree to change my practice for a research study

Yes 237 (50.7) 23 (52.3) 35 (63.6)

No 26 (5.6) 6 (13.6) 1 (1.8)

Did not know 154 (33) 5 (11.4) 18 (32.7)

Missing 50 (10.7) 10 (23.7) 1 (1.8)

If there was good-quality evidence that standing frames were not beneficial, I would agree for children with CP to stop
using them
Yes 159 (34) 21 (47.7) –

No 35 (7.5) 4 (9.1) –

Did not know 221 (47.3) 10 (22.7) –

Missing 52 (11.1) 9 (20.5) –

a
Suitable age groups (years) for a standing frames research study

0–5 341 (73) 18 (40.9) 42 (56.8)

6–10 363 (77.7) 26 (59.1) 49 (66.2)

11–15 248 (53.1) 18 (40.9) 37 (50)

16–18 151 (32.3) 12 (27.3) 28 (37.8)

No age groups are suitable 4 (0.9) 3 (6.8) 0

Missing 51 (10.9) 9 (20.5) 11 (14.9)

Longest possible time to delay/suspend standing frame use (weeks)

<2 21 (4.5) – 10 (18.2)

2–6 117 (25.1) – 13 (23.6)

7–12 76 (16.3) – 7 (12.7)

13–18 20 (4.3) – 1 (1.8)

19–24 12 (2.6) – 0

> 24 10 (2.1) – 0

It is not appropriate to delay or suspend use of a 27 (5.8) – 7 (12.7)

standing frame for a research study

Did not know 49 (10.5) – 14 (25.5)

Other 68 (14.6) – 0

Missing 67 (14.3) – 3 (5.5)

a Participants could choose more than one option.
‘–’ indicates that the item was not a response option for that group of participants.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 SURVEY 2: RESEARCH TRIAL ACCEPTABILITY AND FEASIBILITY

Feasibility of a research study

Over 55% of health professionals suggested that they would be willing to recruit participants to a standing
frames trial, although only 22% thought that they would have time to do this in their current role and
only 19% currently have good clinical practice training (Table 20). Open-ended responses indicated that
health professionals who were willing to recruit participants in principle believed in the importance of
research, were happy to be of help and were interested and/or invested in the topic. Those who were not
willing or were unsure cited reasons such as time limitations; case loads (including heavy case loads and
case load mix) and/or professional roles (e.g. believing young people on their case load would be too
young or old to take part in a research study); the need for team support and/or decisions; perceived
reluctance from parents and other staff; and the need for more information about the study.

TABLE 20 Health professionals’ perceptions regarding the feasibility of a standing frames research study

Perception Health professionals, n (%)

a
Appropriate person to recruit participants

Physiotherapist 383 (82)

Occupational therapist 65 (13.9)

Therapy assistant or technical instructor 106 (22.7)

Paediatrician 95 (20.3)

Orthopaedic surgeon 81 (17.3)

I do not know 5 (1.1)

Other (please specify) 22 (4.7)

Missing 72 (15.4)

In principle, I would be willing to recruit participants

Yes 261 (55.9)

No 43 (9.2)

I do not know 89 (19.1)

Missing 74 (15.8)
In reality, I could recruit participants

Yes 195 (41.8)

No 63 (13.5)

I do not know 135 (28.9)

Missing 74 (15.8)

I would have time to recruit participants to a research study in my current role

Yes 102 (21.8)

No 112 (24)

I do not know 177 (37.9)

Missing 76 (16.3)

I have relevant clinical training which allows me to consent participants to a research study

Yes 89 (19.1)

No 246 (52.7)

I do not know 62 (13.3)

Missing 70 (15)

64
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 20 Health professionals’ perceptions regarding the feasibility of a standing frames research study (continued )

Perception Health professionals, n (%)

I would be prepared to do relevant training which allows me to consent participants to a research studyb

Yes 188 (61)

No 37 (12)

I do not know 83 (26.9)

Missing 0

I would be prepared for a research physiotherapist to be involved in the child’s care for the duration of the study
Yes 322 (69)

No 19 (4.1)

I do not know 47 (10.1)

Missing 79 (16.9)
a Participants could choose more than one option.
b Percentages are calculated out of 308. That is, the number of participants who responded ‘no’ or ‘I do not know’ to the
question ‘I have relevant clinical training which allows me to consent participants to a research study’.

Health professionals who indicated that they could recruit participants thought that they had appropriate
case loads and could persuade parents to participate, had previously been involved in research, and believed
in the importance of research. Those who thought that they could not recruit participants did not have
appropriate case loads, lacked time, or did not think that they could convince parents to take part. Health
professionals who were unsure whether or not they could actually recruit participants for a trial gave reasons
such as the decision would not be made by them (e.g. management would have to choose whether or not to
take part), it would depend on the time commitment, limited resources, inappropriate work setting, changing
professional roles, and perceptions that the families they work with would not be willing to take part.

More than half of the education professionals would be happy for young people at their school to take
part (regardless of their allocation to an intervention or control group), would agree to a research
physiotherapist visiting the school, and would find it easy to keep a diary of standing frame use, bowel
functions, medications and pain.

Table 21 shows that although only 43% of parents expressed a willingness in principle for their child to
take part in a research study regardless of their allocation, 25.7% were unsure. Open-ended responses
indicated that parents who were willing believed that there was no negative difference between
intervention and control groups, the study findings would benefit their child anyway by contributing to
knowledge about young people with CP, and their child prefers not to use a standing frame over summer
anyway. Those who would not be willing to have their child randomised (13.5%) or were unsure (25.7%)
cited the following reasons: needing more information about the study, their child’s tolerance and/or pain,
fear of putting their child at risk, going against advice they have received, belief in the benefits of standing
frames, uncertainty about what interventions the control group would receive and their child did not
currently use a standing frame anyway. Similar to education professionals, parents reported that they
would find it relatively easy to keep research diaries.

Parents were also willing to be approached by health professionals about a standing frame research study
(64.9%), as well as to provide medical information (71.6%), to complete questionnaires (66.2%) and to
have detailed physiotherapy assessments (66.2%) of their child (Table 22).

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 SURVEY 2: RESEARCH TRIAL ACCEPTABILITY AND FEASIBILITY

TABLE 21 Education professionals’ and parents’ perceptions regarding the feasibility of a standing frames
research study

Perception Education professionals, n (%) Parents, n (%)

I would be happy for children at my school/my child to take part regardless of whether or not they were in the
experimental or control group

Yes 25 (56.8) 32 (43.2)

No 2 (4.5) 10 (13.5)

I do not know 4 (9.1) 19 (25.7)

Missing 13 (29.5) 13 (17.6)

I would agree to a research physiotherapist visiting children at school for assessments

Yes 27 (61.4) –

No 0 –

I do not know 3 (6.8) –

Missing 14 (32.6) –

Keeping a daily diary of standing frame use would be

1 (impossible) 2 (4.5) 7 (9.5)

2 1 (2.3) 7 (9.5)
3 2 (4.5) 7 (9.5)

4 8 (18.2) 12 (16.2)

5 (easy) 17 (38.6) 26 (35.1)

Missing 14 (31.8) 15 (20.3)

Keeping a detailed diary of bowel functions, medication and pain would be

1 (impossible) 3 (6.8) 4 (5.4)

2 2 (4.5) 7 (9.5)
3 5 (11.4) 13 (17.6)

4 11 (25) 13 (17.6)

5 (easy) 9 (20.5) 22 (29.7)

Missing 14 (31.8) 15 (20.3)

Preferred method to keep a diarya

Electronic (e.g. iPad, phone, computer) 1 (2.3) 13 (17.6)

Hard copy (e.g. a book) 14 (31.8) 20 (27)

Either hard copy or electronic 10 (22.7) 20 (27)

I would not keep a diary 0 3 (4.1)

Other 5 (11.4) 3 (4.1)

Missing 14 (31.8) 15 (20.3)

I would agree to work with a research physiotherapist

Yes 22 (20) –

No 2 (4.5) –
I do not know 6 (13.6) –

Missing 14 (31.8) –

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

TABLE 21 Education professionals’ and parents’ perceptions regarding the feasibility of a standing frames
research study (continued )

Perception Education professionals, n (%) Parents, n (%)

It would matter if children in the same class were in different groups for the research study
Yes 2 (4.5) –

No 21 (47.7) –

I do not know 7 (15.9) –

Missing 14 (31.8) –
a Participants could choose more than one option.
‘–’ indicates that the item was not a response option for that group of participants.

TABLE 22 Parents’ perceptions regarding the feasibility of a standing frames research study

Perception Parents, n (%)

I would be prepared to/for my child to be asked by a health worker if we would be interested in taking part in a research
study
Yes 48 (64.9)

No 7 (9.5)

I do not know 6 (8.1)

Missing 13 (17.6)
a
I would be prepared for me/my child to
Provide medical information for the purpose of research 53 (71.6)

Complete questionnaires about their participation and activities 49 (66.2)

Allow them to have a detailed assessment by the research physiotherapist 49 (66.2)

I would not agree to any of these 4 (5.4)

Missing 14 (18.9)
a
The best location for assessments during a research study would be

School 40 (54.1)

Home 38 (51.4)

A clinic or centre where my child receives care usually 29 (39.2)

A different clinic or hospital to where my child usually visits 13 (17.6)

Missing 18 (24.3)
a Participants could choose more than one option.

Barriers to a research study

The most common ethical reason identified by each participant group for not recruiting or participating in
a standing frames research study was fear that stopping standing frame use could cause irreversible harm
to the young person. Health professionals also reported that a research study would be too labour-intensive
to be feasible (56.2%), whereas 29.5% of education professionals and 35.1% of parents did not believe
any of the practical issues were applicable (Table 23).

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 SURVEY 2: RESEARCH TRIAL ACCEPTABILITY AND FEASIBILITY

TABLE 23 Difficulties that would prevent survey respondents from recruiting to or participating in a standing
frame research study

Health Education
professionals, professionals, Parents,
Difficulties n (%) n (%) n (%)

Practicala
A research study would be too resource intensive to be feasible 129 (27.6) – –
A research study would be too labour intensive to be feasible 150 (56.2) – –
Children with CP are individual. It is impossible to research the impact 44 (9.4) 4 (9.1) 1 (1.4)
of standing frames
Some benefits of standing frames cannot be measured (e.g. ‘feeling tall’) 107 (22.9) 8 (18.2) 6 (8.1)
It would be too difficult to get children and parents to participate in a 79 (16.9) 0 –
research study
It would be too difficult to get professionals to participate in a research 41 (8.8) – –
study
I would not have the support in my workplace to take part in a 64 (13.7) – –
research study
There would not be enough space for children’s standing frames – 0 7 (9.5)
Other 76 (16.3) 7 (15.9) 21 (28.4)
None of these apply 0 13 (29.5) 26 (35.1)
Missing 141 (30.2) 18 (40.9) 20 (27)
a
Ethical or personal choice

It is not right to withdraw standing frame treatment for a research study 51 (10.9) 3 (6.8) 6 (8.1)
Stopping standing frame use for a research study could cause harm 186 (39.8) 13 (29.5) 16 (21.6)
that could not be reversed
Participating in a research study about standing frames may affect the 102 (21.8) 6 (13.6) 4 (5.4)
child’s quality of life negatively
The child’s choice, rather than a research study, should dictate their 107 (22.9) 7 (29.5) 7 (9.5)
standing frame use
I would feel guilty if I could not do everything I needed to do for the study – – 14 (18.9)
It is an emotionally significant moment to see my child stand; it is more – – 2 (2.7)
important to me than a research study
Other 55 (11.8) 2 (4.5) 10 (13.5)
None of these apply 0 9 (20.5) 19 (25.7)
Missing 164 (35.1) 18 (40.9) 22 (29.7)
a Participants could choose more than one option.
‘–’ indicates that the item was not a response option for that group of participants.

What does survey 2 add?

Survey 2 demonstrated that the majority of participants believe that more standing frames research is
necessary. Most respondents suggested that they were willing in principle to engage in a trial. For example,
most parents were willing to be approached by health professionals about participating in a research study,
have their child randomly allocated to experimental or control groups and change how their child uses a
standing frame for the purposes of a research study. Furthermore, approximately 50% of health and
education professionals would agree to change their standing frame practice for a research study.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

In addition, the results of survey 2 provided vital information about ‘deal breakers’ in a standing frames
research study. The maximum amount of time most health professionals and parents would agree to
suspend/delay standing frame use is 12 weeks. There are factors that would stop a relatively small proportion
of professionals and parents participating in a standing frames study, such as fear, that suspending use
would cause irreversible damage. Although these may not appear to be major issues at this stage, they are
important factors for consideration when calculating the number of potential participants that would need to
be approached.

Survey 2 has also showed that stakeholders have different perceptions regarding challenges to a research
study. Feasibility is a major issue. For example, a higher proportion of health professionals than parents
indicated that there were issues that would stop them recruiting for, or participating in, a study. Health
professionals are clearly invested in standing frames, and education and resource may be required to
enhance engagement in a research study.

How has survey 2 informed the next step?

Survey 2 allowed us to see if the discussions in our qualitative work were generalisable to a wider population.
It also enabled us to explore ‘deal breakers’ in a trial for potential participants.

Large numbers of data were collected throughout the study. It was essential to record, analyse and share
this information in order to understand it. Therefore, the next phase of the study was engaging stakeholders
in sense checking and interpreting the findings. A secondary outcome of this was engagement of potential
future participants and dissemination of findings.

Analysis of the results led the co-applicants to consider and ask stakeholders the following questions in
two design workshops (see Chapter 8):

l What are the research priorities as related to standing frames?

l What are the pros and cons of different research study designs?
l Should a standing frames research trial be explanatory or pragmatic?

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 8 Robustness of results: stakeholder

involvement and patient and public involvement

Objectives

The collated study results (survey 1, single stakeholder focus groups, interviews, multistakeholder focus
groups, survey 2) were taken to two multistakeholder design workshops in June 2017. The aims of these
design workshops were to discuss (1) the study’s findings, (2) priorities for research studies, (3) potential
trial designs and (4) produce conclusions and recommendations. Potential research designs that were
discussed were (1) standing frame use versus no standing frame use and (2) treatment as usual standing
frame use (i.e. participants would continue to use their standing frame as they usually would) versus
‘super standing’ [i.e. extra support provided to use the standing frame as generally prescribed (five times
per week for 30–60 minutes)]. The design workshops were also to ensure that the results were robust and
the co-applicants’ ideas were staying true to the data.

Attendees at the design workshops included co-applicants, steering group members and various
stakeholders, such as physiotherapists, orthopaedic surgeons, paediatricians, parents and a young person
with CP. Stakeholders were identified through the PPI group, clinical connections or participants who had
expressed interest and consented to further contact either via the survey or after the focus group. Three of
the physiotherapists had been focus group attendees but none of the other stakeholders had taken part in a
focus group. A medical professional who was naive to the study took notes on the discussion. Jill Cadwgan
and Jane Goodwin were particularly mindful not to lead the conversation based on their own biases
because they had been immersed in the data from the outset and throughout. The discussions are
summarised here.

Design workshop: various stakeholders

Co-applicants Jill Cadwgan, Allan Colver, Anna Basu, Denise Howell, Sarah Crombie, Jan Lecouturier
and Johanna Smith were in attendance, along with a member of the steering group (paediatrician),
five physiotherapists and an orthopaedic surgeon.

Research priorities
A detailed discussion of research priorities revealed that participation should be a primary outcome with
body function as a secondary outcome. That is:

1. Primary outcome: quality of participation (including, but not necessarily limited to, interaction,
communication, vision, using upper limbs/motor abilities). Related to this, it is important to examine
what elements of participation are associated with being upright.
2. Secondary outcome: body function (including, but not limited to, bowel function, speech, breath
control, feeding).

Throughout this, it would be important to ensure that everyone involved understands the concepts of
evidential and emotional equipoise. It would also be important to shift from the value of body structure to
the importance of participation. Both of these would require significant education for professional and
parent stakeholders.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 ROBUSTNESS OF RESULTS: STAKEHOLDER INVOLVEMENT AND PATIENT AND PUBLIC INVOLVEMENT

Trial design
In principle, it was agreed that a trial would need to be pragmatic rather than explanatory. Intervention
versus no intervention was preferable to standing versus an increased dose of standing because of
the perception that it would be impractical and prohibitively expensive to introduce ‘super standing’.
Furthermore, it would be more difficult to show a significant difference between two slightly different
doses. Useful comparators include walkers, standing slings, supported lying positioning and powered
chairs. A qualitative component would be required to adequately capture experiences. However, any type
of research study in this population would require significant resources, even to facilitate adherence to the
prescribed standing frame use. Therefore, trial settings (e.g. specific specialist schools) and stakeholder
engagement would need to be established as early as possible.

Reservations about a trial

Design workshop attendees had several reservations about a standing frames research study. Some major
concerns centred on the ethics of conducting research that may demonstrate standing frames do not
achieve certain outcomes. This has implications for commissioners, and there were fears that standing
frames may not be funded in future, even though many families and young people with CP enjoy using
their standing frames (regardless of any body structure, body function, participation or activity benefits).
Some people have such strong beliefs about the benefit of standing frames on the body that they are
likely to continue to use them, despite any evidence that is produced. Commercial companies are likely to
continue to market their products as helpful for body structure, and this may have more of an influence
on professionals and families than the results of a scientifically robust research study. Furthermore, the
intrinsic perception regarding the body structure benefits of standing is difficult to overcome because it is
virtually impossible to design research that isolates the impact of standing frames alone.

The design workshop highlighted a number of topics for discussion. The importance of clinically relevant
outcomes was raised. For example, is bone density worthwhile exploring if it does not affect the risk
of fractures? Exploring the idea of reducing sedentary time and increasing metabolic rate may also be
worthwhile. The physiotherapists were particularly concerned that a research study (and potential findings)
could increase parental guilt and create additional practical difficulties. If participation outcomes are being
measured, the standing frame should be used to access existing activities, not new activities, because
otherwise we will be enhancing participation by default.

Design workshop: parents

A second design workshop was held with five parents and one young person who uses a standing frame
because we were unable to get representation from these groups at the first workshop. It was facilitated
by co-applicant Johanna Smith and research associate Jane Goodwin. The aims were the same as the first
workshop, and the discussions from the day are summarised here. It is important to note that parents
were reacting to the information given to them on the day from a lay perspective; therefore, some of
their ideas had previously been explored. The summary reports the parents’ views only, and we have not
further justified and analysed them in this section. However, these ideas have contributed to the final
recommendations in Chapter 9 in combination with the synthesis of all the results of the study.

Research priorities
Parents suggested that the research priority should be the change of position that comes with standing
frames, because they believe that it gives their child access to, for example, eye contact, general
participation and life in a different position:

l Primary outcome: change of position (including, but not necessarily limited to, access, stretch, comfort,
functional ability, interaction, being like other young people and enjoyment).

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l Secondary outcomes:

¢ Physiological measures (including, but not limited to, bowel function and breathing). Parents
believed that it was important to have a medical reason for using standing frames so that they
could continue to use the standing frame for participation. They suggested that body structure/
function and participation cannot be separated, and, as such, neither should be neglected. Parents
also perceived that it would be easier to persuade schools to use standing frames if there was
physiological science behind it, rather than simply parents’ beliefs about what is best for their child.
¢ Young person’s quality of life (including, but not necessarily limited to, how the standing frame
affects how they feel about themselves and being disabled, and their self-awareness). Parents
commented that young people often realise in their teen years that their disabilities are permanent,
and that this realisation can cause major psychological distress.

Parents also believed that standing frames research did not necessarily have to be about progress (e.g.
improving function). It could be about maintaining existing skills or preventing any deterioration and this
would be enough to justify the use of standing frames.

Trial design
Attendees at this workshop had alternative suggestions for standing frame research designs. For a study
regarding change of position, they recommended monitoring young people to see how much they get to
move. Parents believed that there was an evidence base for the health benefits of changing positions.
They also suggested a retrospective study could be conducted with older young people, investigating body
structure outcomes (e.g. bone density) then examining their medical records to see how much they had
used their standing frame. Finally, parents proposed conducting a study with a group of young people
who do not already use a standing frame and have them use one for 12 weeks to see the results. This
way, nobody ‘loses out’ on using a standing frame. Some of these ideas are not likely to be feasible
(discussed in Chapter 9) or scientifically robust, and as such highlight the need to educate families at
recruitment about the trial’s research priorities and methods.

They suggested sit-to-stand wheelchairs (which allow the young person to keep up with friends and
siblings without manual lifting) as a potential comparator.

Pros and cons of trial designs

Parents generally agreed that 12 weeks was acceptable for delaying or suspending standing frame use,
especially if the study was built into the school holidays. However, one parent commented on the struggle
between wanting research and her child’s individual needs. She is desperate for research that might help
her child but she would not feel comfortable withdrawing her child’s standing frame for the purposes of a
study because her child enjoys standing so much.

Parents were also worried about one of the potential trial designs presented to them. That is, standing
treatment as usual versus ‘super standing’. They did not think that it was right to introduce an intervention
(such as an enhanced standing programme) then take it away, especially if the young person really
enjoyed it. They would want a guarantee that the intervention would still be available after the research
study. This would not be feasible in current UK practice according to our survey 1 results. Likewise, the
parents expressed concern that if a young person is not used to standing five times per week, it may be a
shock. However, the young person who attended the workshop indicated that it would be acceptable to
stand that often. Another concern was the variability in function of young people with CP. Energy levels
and muscle tone can vary on an hourly or daily basis and parents felt that as a result it would be difficult
to determine what changes were caused by the standing frame use.

Parents had some recommendations for a research study with standing frames. First, it may be more
feasible to do with younger children because it is physically easier and they can engage in activities like
painting. Older young people find the use of a standing frame more difficult (especially at mainstream

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 ROBUSTNESS OF RESULTS: STAKEHOLDER INVOLVEMENT AND PATIENT AND PUBLIC INVOLVEMENT

schools) because of room changes, space and wanting to fit in with peers. It would be better to have
young people participating in a research study standing at the same time in a classroom so that they can
be the same as their peers. Lots of activities can be done in a group if everyone is in a standing frame.

Reservations about a trial

Parents were ‘disappointed with science’. They have learnt that health professionals use their best guess,
and that parents receive anecdotal evidence (which is useful) from other families. It had been surprising
and disappointing to learn about the lack of evidence for the many treatments their children undergo
(e.g. postural management), even if they do make logical sense. Therefore, they do believe that there is
a need for research, yet they worry that studies may demonstrate that standing frames have no clinical
effect, which could mean they are no longer funded. This would be very distressing because many families
believe that the standing frame is worthwhile, especially if their child enjoys using it. They wondered
whether or not their child’s enjoyment would count for anything with commissioners.

In terms of practicalities of a study, parents suggested that the best way to achieve compliance would be
if it was carried out at school. It is asking a lot of parents to meet study requirements, such as standing
five times per week. However, it is difficult for parents to know what is being done at school. They noted
that the child receives a prescription for standing frame use which may be different from what is actually
happening at school, and parents may not be included in any part of this process.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Chapter 9 Discussion

Introduction

The overall purpose of this study was to answer the question: what is the likely acceptability of a trial to
determine the clinical effectiveness of standing frames? To do this, we undertook two surveys, focus
groups and in-depth interviews.

Summary of findings

The range of clinical indications and benefits described by all participants throughout the study included body
structure and body function, such as bladder or bowel functions, activity, such as improved motor abilities,
and participation, such as interaction with peers. They also reported other benefits, such as improvement in
BMD and prevention of hip dislocation. They noted challenges related to environmental and personal factors
such as physical space and the child’s pain. With respect to body structure and body function, participants
perceived benefits despite the lack of evidence in the literature. For example, 73.8% of prescribing clinicians
in survey 1 (current UK standing frame practice) (see Table 12) reported a belief that frames improve bladder
and bowel functions, yet we found only one single-case study in a child with CP and chronic constipation.26
Furthermore, although using a standing frame to support hip joint development has some scant evidence,
participants identified this as a benefit of standing frames. More research is needed for guidance on
positioning, as well as the duration and frequency of standing.5

Participants also perceived standing frames to help with participation, enjoyment and communication.
Physical assistance and environmental adaptations improve participation in children with CP,27 but to our
knowledge, there is no research relating specifically to standing frames. Being at standing height may
be advantageous for social interaction and independence, but this is dependent on the position and
activities of other individuals. When a person is using a wheelchair, a standing companion receives more
eye contact from third parties, giving the impression that the wheelchair user depends on their standing
companion.28 In terms of activity, upper limb function can be affected by positioning. Self-feeding may be
enhanced by standing, but picking up small objects is easier if sitting.29 The young people with CP who
were interviewed (Chapter 5) also commented on the importance of independence. Young people have
previously reported that independence is essential for self-sufficiency and making choices.30 Some young
people in the current study thought that the standing frame limited their mobility and independence
because they had to rely on others for help while in the standing frame. Static standing frames take away
the young person’s ability to move freely and can isolate them from their peers. Therefore, they preferred
their powered wheelchairs. This is similar to previous research that highlighted the positive effect of
powered wheelchairs in terms of social activities and being able to engage in the environment without
constant supervision and assistance from others.31 However, others thought that their standing frame
allowed them to participate more in activities such as cooking.

There are significant challenges with regards to standing frame use. Participants in survey 1 (current UK
standing practice) and the qualitative studies identified physical space as a particular difficulty. Huang
et al.32,33 also found space to be a major factor restricting assistive device use (including standing frames)
by parents and teachers in their study in Taiwan. Other barriers in their study included inadequate teacher
training and personal factors such as feeling pressured to use equipment at school but not at home.32
Huang et al.32,33 did not report on carer availability for moving and handling, which was a reported
difficulty in our study.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DISCUSSION

What have we found?

The results from survey 1 (UK standing frame practice) and the focus groups, along with discussions at
design workshops and PPI events, showed that standing frames are largely prescribed to ameliorate
difficulties or potential difficulties of body structure and body function. Other benefits (e.g. participation and
activity) are considered to be useful by-products rather than primary aims. Despite the lack of supporting
evidence, the majority of stakeholders have strong beliefs about the benefits for body structure and body
function. Prescription is based on clinical experience and pragmatism.

Thus, there is not universal emotional equipoise about whether or not standing frames work.

What would not be feasible in a trial?

Despite the emphasis on body structure and body function in the prescription and use of standing frames,
we found that body structure outcomes would be challenging as the focus of a trial. We outline the
reasons for this view:

l Timelines: responses from parents and professionals suggest that 12 weeks is the maximum amount of
time they would delay starting or withdrawing standing frame use. An intervention would need to be
longer than this to have an effect on body structure.
l Carry over effects: although a crossover study was used as a potential study design for survey 2,
it was decided (based on co-applicant discussions and the design workshops) that this was impractical
because of carry over effects.
l Co-interventions: standing frames are just one aspect of young people’s postural management. Other
health and therapeutic interventions, such as walkers, are likely to impact on the same outcomes that
standing frames might influence. Co-interventions would also be problematic in a trial with a short
intervention period and long-term follow-up.
l Type of standing frame/position: as a result of the different types of standing frames and positioning
within them, there are too many variables which may impact on the outcome being measured, such as
bone density. For example, prone standing may provide a different level of weight bearing compared
with being upright.

What might be feasible in a trial?

If young people are not being prescribed standing frames, or are not using their standing frames solely to
improve body structure, we should examine the other indications for use that have been identified in our
study. That is, body functions (e.g. bowel function) and other benefits (e.g. choice, change of position,
participation, enjoyment and communication).

These ‘other benefits’ are broad, including aspects of quality of life, participation and subjective well-being,
and could be explored in a trial as patient-reported outcomes. The World Health Organization defines
‘quality of life’ as an individual’s perception of their position in life in the context of the culture and value
systems in which they live and in relation to their goals, expectations, standards and concerns.34 It is a
broad-ranging concept, affected in a complex way by the person’s physical health, psychological state,
personal beliefs, social relationships and their relationship to salient features of their environment.
Participation is involvement in a life situation19 and subjective well-being is self-reported well-being,
including happiness, pleasure and fulfilment.

To the authors’ knowledge, there is no published research into the clinical effectiveness of standing frames
with respect to patient-reported outcomes. A potential study design is proposed in Chapter 10.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Limitations of our study

It is likely that the study attracted participants who were interested, engaged and had strong opinions,
whether positive or negative, about standing frames. Therefore, they may not be representative of the
general population of people who work with standing frames, have a child who uses or has used a
standing frame, or of young people who use standing frames. A limitation of the parent groups was that
their children had all used a standing frame for a number of years. We were not able to explore views on
delayed start with parents who were within a year or two of diagnosis when that could be an option.

Furthermore, because of the nature of recruitment and the anonymity of surveys 1 and 2, we could not
calculate response rates or determine non-response bias. There were also challenges in engaging education
staff and parents. It is likely that education staff were difficult to recruit for face-to-face events (e.g. focus
groups) because there are no other people to cover their duties during the day and after school hours they
have further work and personal commitments. This reflects what we would anticipate in trial. Therefore,
a trial would need to specifically target schools for recruitment and arrange the study in a way that was
acceptable to and convenient for education staff. Parents were also hard to recruit for face-to-face events,
with many cancelling just prior to the focus group. This is not surprising because they have significant
caregiving responsibilities. Therefore, the education staff and parents who were able to participate in the
Understanding Frames study may not be representative of the underlying populations.

Professionals’ experiences of standing frames may be coloured by a variety of factors including their
training, the region of the UK they work in, and the population of young people they work with. As the
study progressed, we realised that education professionals would be major stakeholders in a trial. Therefore,
it would have been helpful to have a separate survey 1 for this participant group to give more information
on use of standing frames within the school context, which would have been useful considering the
proposed trial within the school context. Parents’ experiences are likely to be influenced by demographic
factors (e.g. socioeconomic factors), their emotional journey with having a child with CP, the support they
receive, and the way their child reacted (and continues to react) to their standing frame use.

In terms of participation in research, different factors may influence parents and young people. This has
been highlighted in our current study and is relevant in future trials. For example, depending on their level
of education a visit to a university may be intimidating, or, as a result of previous experiences, hospital
visits may be upsetting. Lack of interest in research, time to participate and the priority of the research
question in relation to the family’s own interests and priorities are also important factors to consider. The
young people’s experiences may be affected by their cognitive and communicative abilities. Although we
aimed to include participants with a variety of experiences and abilities, the sample is more representative
of young people with CP who have the capacity to provide assent, and understand relatively complex
questions about their standing frame use. Five out of the 12 participants attended mainstream school
(including one mixed placement), and only one participant used a VOCA. Although the qualitative findings
may not be representative of all standing frame stakeholders, they contribute to the body of knowledge
surrounding young people, CP and standing frames, by highlighting both positive and negative impacts on
these participants.

Strengths of our study

We received rich data from a variety of stakeholders. Mixed methods has given us confidence in our
research findings because of the holistic examination. Data from survey 1 (current UK standing frame
practice) informed us of the wide range of perceived benefits and challenges to standing frame use, but
in-depth understanding of these could only be extracted during the focus groups and interviews. Young
people in particular added understanding of the complexities of how using frames may affect participation,
activity, interaction and emotional well-being. Survey 1 also contributed to our understanding of study
designs (e.g. delayed or suspended use) that could be explored in the qualitative phase of the study.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
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 DISCUSSION

Ideas produced in the qualitative stage gave us priorities for research and potential trial designs. The
qualitative aspect allowed for in-depth examination of what was acceptable for various stakeholders and
the reasoning for their comments. Final feasibility of these trial designs was then tested in a wide
population through survey 2 (research trial acceptability and feasibility). The benefits of mixed-methods
design have been outlined in Chapter 2.

There were a large number of survey participants from all over the UK. We had representation from
professionals who work in a variety of settings. We also had strong PPI from the outset and throughout.
PPI advisory group members (as well as informal PPI) provided feedback on the initial application, study
documents (e.g. information sheets), surveys (1 and 2), potential trial designs, the co-applicants’
interpretation of the data and dissemination. Furthermore, having a parent of a young person with CP on
the co-applicant team was a great strength of this study. The PPI allowed the research to be grounded
in the practicalities of conducting research with families affected by CP (e.g. holding focus groups in the
middle of the day because of commitments before and after school hours, allowing time for introductions
to make parents more comfortable), as well as remaining accessible (e.g. avoiding overloading participants
with information) and respectful (e.g. type of language used).

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Chapter 10 Conclusions

Recommendations for research

Current research priorities

We found that patient-reported outcomes (e.g. quality of life, participation and subjective well-being)
are important to young people, parents and professionals (both health and education professionals) and
feasible for a trial with a short intervention. This was recognised in each stage of the study, particularly
the design workshops held after the study data had been collated. Body structure and body function
characteristics are also important and would be of interest to a variety of stakeholders, but we found they
would be difficult to use as primary outcomes. We have proposed body structure as a secondary outcome.
Despite the clinical impression that long-term effects on body structure (e.g. bone density and preventing
the need for surgery) may take several years to evaluate, our study showed that parents and professionals
are worried that harm may occur from not using a standing frame relatively quickly (e.g. loss of joint range
of movement over a summer holiday). Using body structure as a secondary outcome would allow any
harms to be identified.

We recommend trials that focus on the following outcomes:

l Primary outcome:

¢ selected from patient-reported outcomes (e.g. participation).

l Secondary outcomes:

¢ patient-reported outcomes not included as a primary outcome (e.g. quality of life, subjective
well-being)
¢ body function (e.g. bowel function, speech, breath control and feeding)
¢ body structure (e.g. loss of range of movement).

Recommendation of, and rationale for, particular trial designs

We recommend a mixed-methods design. A qualitative process evaluation alongside the quantitative data
collection could help understand the complexity of the intervention and social contexts, and the clinical
effectiveness of the intervention.35 Qualitative data could also capture the experience of young people
when they are (or are not) using standing frames, as well as all stakeholders involved in standing
frame use.

As we found that ‘prescribed’ standing frame use was generally not achieved because of a variety of factors,
a trial should be pragmatic (i.e. able to work in everyday practice) rather than explanatory (i.e. work in
ideal circumstances). Survey 1 (current UK standing frame practice) and focus group results showed that
physiotherapists were not monitoring as often as they would have liked to because of lack of resources.
Therefore, a trial should also include a health economic evaluation.

We present our recommendations for a research trial using the PICOTS framework.

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Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 CONCLUSIONS

Population: young people with cerebral palsy (Gross Motor Function Classification
System III–V)
A study in those children of infant and primary school age (4–11 years) is likely to be the most practical
with respect to ease of facilitation of standing frame use in school, size of standing frames and the typical
age at which most young people with CP start using standing frames. A study with preschool children was
considered, but we decided against it because of such factors as the developmental age of the child and
preparedness of families to be recruited to a trial when their child had been recently diagnosed with
CP (as advised by parent participants and co-applicant Johanna Smith reflecting on their past experiences).
Using standing frames at secondary school age, particularly in school, is a challenge because of environmental
considerations, and young people and professionals may be less able to adhere to a trial protocol.

The commissioned call suggested research into young people with CP GMFCS IV and V; however, our
survey shows that standing frame use in younger people with GMFCS III is widespread, in keeping with
our clinical experience, and we therefore recommend that inclusion criteria should include young people
with CP GMFCS III. Classification of young people on the basis of their pattern of motor impairment
(e.g. dystonia vs. spasticity vs. mixed) would be difficult because it is clinically difficult for clinicians and
parents to distinguish. Both boys and girls should be included. Data capture for the current study was
predominantly in England, but there is no reason why study sites in Scotland, Wales and Northern Ireland
should not be included.

Intervention: standing frame use (3 days per week)

We found that recommended standing frame use was 30–60 minutes daily for 5 days or more each week,
but that this was not usually achieved. Pragmatically, a standing frame intervention for a duration tolerated
(for longer or shorter periods) by the young person for 3 days per week would be an appropriate dosage
based on the results from survey 1 (UK standing frame practice).

Adherence to a trial regime greater than this would be likely to require significant resource to ensure
implementation and may be susceptible to reduced compliance and fidelity. Some young people use
standing frames at home, and there would need to be consideration of a standardisation of standing
frame use at home.

Many types of standing frames are used and prescription should be appropriate to the individual young
person. Because the primary outcome will be selected from patient-reported outcomes (e.g. participation),
the specific type of standing frame is less important. It would be unfeasible to recommend exactly which
standing frame the young person should use. More important is consideration of the suitability and
availability of the standing frame to the individual child. Angle and position may need to be considered
and could be examined in the qualitative component of the trial. For example, if a young person is looking
up in the air or down at the floor, participation and activity may be more limited.

Comparator: no standing frame use

Standing frame use versus no use, or versus alternative therapy or equipment (e.g. hydrotherapy or
disability exercise bike) has been discussed in detail throughout the study. Consensus suggests that
standing frame use versus no use would be most likely to detect change and be feasible. All young people
would be likely to have other therapy, orthotics and activities regardless of whether they were in the
intervention or non-intervention group (‘treatment as usual’) but randomisation should lead to a balance
with respect to these factors across trial groups. Careful consideration of trial design will be necessary in
order to control for these, or to define and standardise ‘treatment as usual’ for the duration of the trial.
This may be a consideration for the final population or setting; for example, control of ‘treatment as usual’
may be easier in one particular location or setting.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Outcomes: selected patient-reported outcomes (e.g. quality of life, participation,

subjective well-being), body function and structure

l Primary outcome:

¢ selected patient-reported outcome (e.g. participation).

l Secondary outcomes:

¢ patient-reported outcomes not included as a primary outcome (e.g. quality of life, subjective
well-being)
¢ body function (e.g. bowel function, speech, breath control and feeding)
¢ body structure (e.g. loss of range of movement).

Measures should address the primary and secondary outcomes of the study. Selected patient-reported
outcome measures could assess quality of life, participation, and subjective well-being. All measures should
ideally be adaptable to the young person’s communication level and cognitive ability. There may be a need
for parent- and/or education staff-proxy reports of the child’s patient-reported outcomes (e.g. quality of
life, participation and subjective well-being), although the ideal would be young people’s self-report. It will
also be important to assess impact on parents and family life. Secondary outcome measures of body
function may include respiratory function, bowel function and pain, and of body structure may include
clinical measures of joint range of movement and growth.

Adherence to trial protocol would need to be carefully monitored as our survey highlights that ‘treatment
as prescribed’ is not always achieved. Both quantitative and qualitative methods should be included. This is
particularly important when considering young people’s voices and the individuality of standing frame
prescription (i.e. what works for one child may not work for another, and quantitative research may not
capture this variation).

Timing: 6–12 weeks

We found through survey 1 and the qualitative work that young people often have a break from standing
frame use during school holidays. Survey 2 demonstrated that suspending or delaying standing frame
use would be acceptable and ethical for a period of 6–12 weeks. However, qualitative data from parents
reflecting on their experiences revealed that delayed use (i.e. a waiting list control design) would not be an
acceptable trial design. It must be noted, however, that we did not have any parent participants who had
a child who had recently been diagnosed with CP to confirm whether or not a delayed start would be
acceptable. Therefore, we recommend suspended use for 6–12 weeks. Furthermore, there may be other
variables (e.g. other therapies and activities) that need to be taken into account in the school holidays
compared with school term time.

Anxieties highlighted by stakeholders regarding deterioration in body structure for longer durations of
‘non-use’, could be alleviated by including clinical assessments at the time of the outcome assessments.

Setting: specialist school environment

We recommend that standing frame use should be explored in the specialist school environment, because
this is where most young people with GMFCS III–V are educated; furthermore, specialist schools would
be better equipped to support standing frame use for the purposes of a trial, as they tend to be used in
this environment anyway. There may be challenges with education, training and support of educational
professionals in conducting a trial in that setting. Although our survey 2 data suggested that education
staff would be willing, and find it acceptable, to recruit to a trial, our focus group data from a single
specialist education school highlighted issues with staff confidence and achieving prescribed standing in a
classroom because of conflicting interests between therapy and education. Furthermore, we experienced
difficulties with education staff recruitment to both focus groups and the surveys, likely because they do

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 CONCLUSIONS

not have other people to cover their duties and they have other work and personal commitments. This
may have implications for trial buy-in from education staff, and adherence to treatment as prescribed in
the school setting.

For adequate statistical power, a trial would need multicentre recruitment. Describing, and potentially
balancing or adjusting for ‘treatment as usual’ would need to be considered. For example, young people
are more likely to receive a similar therapy or orthotic programme in one school, but these interventions
are likely to vary between schools.

Potential challenges
Our study identified significant challenges for a research trial but we believe that they are surmountable
with careful planning. PPI (including young people with CP) would be required from the development of a
funding application for a future trial through to the dissemination of the results. This level of PPI could be
achieved by allowing members to take part flexibly (e.g. via online forums) and having representatives on
the co-applicant team (parent and/or young person with CP) as well as on the Trial Steering Committee
and/or a separate PPI RAG.

Recruitment and attrition

Allied health professionals, particularly physiotherapists, were the main professional stakeholders (in terms
of prescribing, monitoring, and supporting standing frame use) for standing frames. Physiotherapists would
therefore be the most appropriate professionals to recruit participants.

We had problems finding education staff willing and able to participate in our study, which might mean
there will be difficulties engaging schools in a full trial, although it is the preferable setting. However, for
the purposes of our study, we were asking education staff to leave the school setting and participate in
research that was beyond their role. If the setting for a trial was in a specialist school, education staff
would be asked to position their students in a standing frame, which is something they often do anyway.

Consent and assent

We found that young people with CP may have different opinions to their parents about their standing
frame. This has implications for the young people’s assent to a trial. Furthermore, if young people have
strong feelings (positive or negative) about using a standing frame, their allocation to intervention or
control could have a significant confounding effect on the outcome measures, including quality of life and
subjective well-being. It would be important to note reasons for non-recruitment of screened population
including lack of assent from the young person for trial. Legal and ethics frameworks around consent and
assent would also need consideration.

Engagement in a trial
We found that engagement of stakeholders in a trial may be challenging because of the emphasis
currently placed on body structure. Professionals may be unaware of how their conversations with families
may lead to families sharing the same views about frames. Shifting the framework to patient-reported
outcomes (e.g. quality of life, participation and subjective well-being) and body function outcomes will
require education to engage professionals and families in a trial and to inform thinking in clinical practice.

Moreover, young people with CP may have multiple comorbidities and/or general health issues which may
prevent them from participating in a trial.

Need for equipoise

In one sense standing frames work because they do make the young person stand. What we need to ask
is ‘what is the standing for?’. Professionals, parents and young people entering the trial should think that
the trial is worthwhile because it is an open question whether or not standing frames have benefit. If they
are certain of benefits, they may not consent to the trial. Personal preferences for standing frame use may
thus affect recruitment.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Implications for health care and the need for a pilot phase

Although there is no strong evidence that standing frames are beneficial, they still might be. We found
that it will be difficult to develop a robust evidence base. We also found that many stakeholders (including
physiotherapists, parents and young people) are invested in standing frames despite the paucity of evidence
for their use. Therefore, standing frames may continue to be prescribed and used even if a future trial
demonstrates that they are not effective with respect to selected patient-reported outcomes (e.g. quality
of life, participation and subjective well-being) and body function. Participants suggested that there would
need to be evidence that standing frames cause harm for people to stop using them.

For all of the above challenges identified, it is not feasible or cost-effective to progress to a full multicentre
RCT. This leaves a question regarding the logical next step. There are two possibilities:

1. A randomised feasibility study – an external stand-alone pilot.

2. A randomised feasibility study – an internal pilot with clear progression criteria to a full trial.

We would recommend a randomised feasibility study (an internal pilot phase with clear progression criteria
to a full trial), and summarise the reasons:

l To determine that physiotherapists have the capacity to recruit, especially for a trial in the specialist
school setting.
l To explore the extent to which parents and professionals are agreeable to the primary outcome of a
selected patient-reported outcome (i.e. participation). What people say they will do may be quite
different from what they do when confronted with a real-life decision.
l To establish whether or not education staff in specialist schools are prepared to ‘buy in’ to the study,
and to facilitate the prescribed standing programme.
l To establish that sufficient staff and families are in equipoise.
l To establish that the proposed outcomes can be collected.

The researchers considered a randomised feasibility study (an external stand-alone pilot), that is, data
would be collected on the feasibility of a future trial (e.g. recruitment, retention and choice of outcomes),
but would not be used in the definitive trial. However, they decided against it for the reasons summarised:

l It would be at least 8–10 years before any definitive conclusion about standing frames could be
obtained. The current study has highlighted that families would value evidence about the benefits of
standing frames as soon as possible, and may object to waiting for this amount of time.
l With recruitment and power concerns, data captured in a pilot would be valuable.
l A pilot would require much effort and commitment from staff, young people and parents. It might be
considered unethical to then omit them from the main study if the design was feasible.

Therefore, there is a strong argument for an internal pilot (i.e. data collected at this stage would be included
in a main trial). Although the internal pilot reduces waste, there would need to be consideration of how to
manage the data collected if the trial design was adjusted to improve feasibility of the main trial.36

Concluding statement

Our findings suggest that a trial could examine standing frame use in young people with CP GMFCS III–V.
The primary outcome of the trial should be a selected patient-reported outcome (e.g. participation), with
other selected patient-reported outcomes (e.g. quality of life, subjective well-being body function and body
structure) as secondary outcomes. There would be multiple factors to consider in the trial design including
the heterogeneity of the population, significant challenges to recruitment and retention and adherence to
protocol. These challenges can be overcome by clinical understanding of the population and careful trial

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
83
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 CONCLUSIONS

design to include a randomised feasibility trial (i.e. an internal pilot). Consideration of issues including
knowledge of treatment as usual, other postural management approaches and outcome measures will be
required. A mixed-methods approach, which captures quantitative and qualitative data about users’
experience, is necessary.

Standing frames are one part of postural management for young people with CP GMFCS III–IV. Many of
our findings are relevant to potential trials of many interventions for young people with neurodisability.
We have shown that it is possible to obtain young people’s views, which are highly valuable with respect
to their engagement in clinical intervention and research.

Parents and professionals engaged in the qualitative aspect of this research, and stakeholders who took
part in the design workshops understood the concept of evidential equipoise and appreciated the lack
of clinical evidence. However, our surveys and qualitative information (and PPI) demonstrated that most
people are not in a position of individual emotional equipoise and have strong beliefs regarding the clinical
effectiveness of standing frames.

Despite the publication of the International Classification of Functioning, Disability, and Health in 2001
(and the ICF-CY in 2007),37 research and clinical focus still tends to be based only on body structure and
body function. To engage stakeholders in a trial, there needs to be explanation of why patient-reported
outcomes (e.g. quality of life, participation, and subjective well-being) are important clinical outcomes.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Acknowledgements
Contributions of authors

Dr Jane Goodwin (Research Associate, Psychology) developed the survey materials, ran the survey and
analysed the data; conducted and analysed the interview data; cofacilitated the focus groups and analysed
the data; prepared the results from survey 1 and the interviews for publication; and contributed to writing
the report and approved the final version.

Ms Jan Lecouturier (Senior Research Associate and Deputy Director, NIHR, Research Design Service
North East and study co-applicant) was involved in the design of the study; led the qualitative research,
cofacilitated the focus groups and supported the research associate with the conduct of the qualitative
research and analysis of the data; and was involved in preparing the report and approved the final version.

Dr Anna Basu (NIHR Career Development Fellow and Honorary Consultant Paediatric Neurologist and
study co-applicant) was involved in the design of the study. She commented on results from all stages of
the research as they emerged. She was an author on papers published from the research. She contributed
to the final report and approved the final version.

Professor Allan Colver (Professor of Community Child Health and study co-applicant) was involved in the
design of the study. He commented on results of all stages of the research as they emerged. He was an
author on papers published from the research. He contributed to the final report and approved the
final version.

Dr Sarah Crombie (Clinical Specialist Physiotherapist and study co-applicant) was involved in the design
of the study. She was involved in participant recruitment. She commented on results of all stages of the
research as they emerged. She was an author on papers published from the research. She contributed to
the final report and approved the final version.

Mrs Johanna Smith (Parent and study co-applicant) was involved in the design of the study. She was PPI
lead during the project, recruiting parents to the RAG, facilitating and comoderating the RAG Facebook
group and disseminating information to wider parent groups. She cofacilitated the parent focus group
(Northern England). She commented on results of all stages of the research as they emerged. She was an
author on papers published from the research. She drafted the Plain English summary, contributed to the final
report and approved the final version.

Ms Denise Howel (Senior Lecturer in Epidemiological Statistics and study co-applicant) was involved in
the design of the study. She led the quantitative research and supported the research associate with the
conduct of the quantitative data analysis. She commented on results of all stages of the research as they
emerged. She was an author on papers published from the research. She contributed to the final report
and approved the final version.

Professor Elaine McColl (Professor of Health Service Research and study co-applicant) was involved in
the design of the study and provided particular expertise in respect to survey methods and trial design.
She commented on results of all stages of the research as they emerged. She was an author on papers
published from the research. She contributed to the final report and approved the final version.

Dr Jeremy R Parr (Clinical Senior Lecturer/Honorary Consultant and study co-applicant) was involved in
the design of the study and the analysis of results. He commented on results of all stages of the research
as they emerged. He was an author on papers published from the research and approved the final version
of the report.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
85
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 ACKNOWLEDGEMENTS

Dr Niina Kolehmainen (Senior Clinical Lecturer and Honorary Consultant Allied Health Professional and
study co-applicant) supported the design of the study and the analysis of results. She was an author on
papers published from the research and approved the final version of the report.

Mr Andrew Roberts (Consultant Orthopaedic Surgeon and study co-applicant) supported the design of
the study and the analysis of results. He was involved in participant recruitment. He was an author on
papers published from the research and approved the final version of the report.

Mr Keith Miller (Rehabilitation Engineer) supported the study design and the analysis of results. He was
an author on papers published from the research and approved the final version of the report.

Dr Jill Cadwgan (previously Kisler; Consultant Paediatrician and Associate Clinical Researcher) was lead
applicant and was ultimately responsible for the conduct of the study, including design, ethics approval,
analysis, and dissemination. She was the corresponding author on papers published from the research.
She contributed to the final report and approved the final version.

Dissemination

Publications
Goodwin J, Lecouturier J, Crombie S, Smith J, Basu A, Colver A, et al. Understanding frames: a qualitative
study of young people’s experiences of using standing frames as part of postural management for cerebral
palsy. Child Care Health Dev 2018;44:203–11.

Goodwin J, Colver A, Basu A, Crombie S, Howel D, Parr JR, et al. Understanding frames: a UK survey of
parents and professionals regarding the use of standing frames for children with cerebral palsy. Child Care
Health Dev 2018;44:195–202.

Conferences
Crombie S, Goodwin J, Cadwgan J. Understanding Frames: A UK Survey of Parents and Professionals
Regarding the Use of Standing Frames for Children with Cerebral Palsy. The Association of Paediatric
Chartered Physiotherapists Conference, Cardiff, 3–4 November 2017.

Cadwgan J, Goodwin J. Understanding Frames: Evaluating ‘Inherited’ Clinical Practice in Children and
Young People with Cerebral Palsy. Royal College of Paediatrics and Child Health Annual Conference,
Birmingham, 24–6 May 2017.

Goodwin J, Lecouturier J, Crombie S, Smith J, Cadwgan J. Understanding Frames: Young People’s

Experiences of Using Standing Frames as Postural Management in Cerebral Palsy. European Academy of
Childhood Disability Annual Meeting, Amsterdam, 17–20 May 2017.

Goodwin J, Lecouturier J, Crombie S, Smith J, Cadwgan J. Understanding Frames: Implementation of

Standing Frames as Part of Postural Management for Children with Cerebral Palsy in the Classroom.
European Academy of Childhood Disability Annual Meeting, Amsterdam, 17–20 May 2017.

Goodwin J, Colver A, Basu A, Crombie S, Howel D, Parr J, et al. Understanding Frames: A UK Survey of
Parents and Professionals Regarding the Use of Standing Frames for Children with Cerebral Palsy. European
Academy of Childhood Disability Annual Meeting, Amsterdam, 17–20 May 2017.

Goodwin J, Lecouturier J, Crombie S, Smith J, Cadwgan J. Understanding Frames: Young People’s

Experiences of Using Standing Frames as Postural Management in Cerebral Palsy. Great North Children’s
Research Community Conference, Newcastle upon Tyne, 10 March 2017.

86
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Goodwin J, Lecouturier J, Crombie S, Smith J, Cadwgan J. Young People’s Experiences of Using Standing
Frames as Postural Management in Cerebral Palsy. Young Person’s Advisory Group – North England. Young
People’s Voices: Shaping the Future of Research and Healthcare, Newcastle upon Tyne, 1 December 2016.

Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to anonymised
data may be granted following review.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
87
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

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Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Appendix 1 Survey 1: parents

Survey 1 Standing frames for parents and carers

1. Introduction and Consent

We would like to invite you to participate in this national research study “Standing frames as
postural management for children with spasticity, what is the acceptability of a trial to assess
the efficacy of standing frames?’ This study is being carried out by a research team from
Newcastle University and is funded by The National Institute for Health Research Health
Technology Assessment (NIHR HTA) Programme.

You are invited to participate in this study because you are a parent or carer of a child with
cerebral palsy who may use a standing frame.

The purpose of this research study is to understand the current use of standing frames in
children with cerebral palsy in the UK. If you agree to take part in this study, you will be
asked to complete the survey on the next page. This survey will ask about your experience of
standing frame use, and current postural management using standing frames for children with
cerebral palsy. It will take you approximately 15 minutes to complete.

You may not directly benefit from this research; however, we hope that your participation in
the study may improve understanding of current practice in standing frame use in the UK, to
inform future research into standing frames as part of postural management for children with
cerebral palsy. Your answers in this study will remain anonymous.

You do not need to give us any contact information; however at the end of the survey we will
ask if you would like to be contacted regarding further research into standing frames; if you
do provide us with your contact information at this stage; this information will be separated
from your survey responses and kept securely by the research team. It will not be used for any
other purpose than contacting you about further research. We will not give these details to any
other parties. Your participation in this study is completely voluntary and you can withdraw
at any time. If you have questions about this project or if you have a research-related
problem, you may contact the researcher(s).

By clicking on “I agree” to the survey/questionnaire below you are indicating that you are at
least 18 years old, have read and understood this consent form and agree to participate in this
research study. Please print a copy of this page for your records. Please ONLY input your
contact details on the survey/questionnaire if you agree to future contact from the research
team and ONLY on the page indicated.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
93
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

1. I am over 18 years of age and have read and understood the consent paragraph above
regarding this survey

I agree to continue and complete the survey.

I do not wish to continue with the survey.

2. About you

Many parents and carers may also have a professional role working with children with
cerebral palsy who use standing frames.

2. My experience of using standing frames for children with cerebral palsy is based on
my role as:

(please tick all that apply)

Parent/carer

Classroom Support/Teacher

Physiotherapist

Occupational Therapist

Therapy Assistant or Technical Instructor

Paediatrician

Orthopaedic Surgeon

Other (please specify)

If you do have an alternative professional role working with children with cerebral palsy who
use standing frames:

Please complete this survey as a parent/carer.

However, we would be delighted if you also access the website link at the end of the survey to
complete our survey for professionals who work with children with cerebral palsy.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

3. Details of your child

3. Please tell us the age of your child

4. My child has cerebral palsy

Yes

No

I don’t know

If No or I don’t know, please write in the box below if they have another named diagnosis

5. Their cerebral palsy affects

One side of their body only

Both sides of their body but mainly legs rather than arms

Their whole body

6. My child’s level of mobility (please tick all the answers that apply to your child)

My child can walk independently without a walking aid

My child can walk with a walking aid (frame or stick)

My child uses a walking aid (frame or sticks) indoors only

My child uses a walking aid (frame or sticks) both in and outdoors

My child uses a walking aid (frame or sticks) in therapy sessions only

My child can sit independently

My child can weight bear to transfer independently

My child can weight bear to transfer with carer support

My child needs lifting or hoisting for transfer

My child can maintain head position in supportive seating independently

My child is unable to maintain head position without support

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
95
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

4. Your child’s standing frame use

7. Which type(s) of standing frame(s) do you and your child have experience of using?
(Please tick all that apply)

Please refer to the pictures below.

Fixed prone standing frame

Upright standing frame

Supine standing frame

Dynamic frame

Sit to stand frame

If you are not sure about the type(s) of standing frame(s) you have used, you can enter a
description of the frame(s) or name(s) below.

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Fixed Prone Standing Frame Upright Standing

Frame

Supine Standing Frame Dynamic Standing

Frame

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
97
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

Sit to Stand Frame

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5. Your child’s standing frame

8a. How have your child’s standing frame(s) been funded? (Please tick all that apply)

Statutory services (health, social care or education)

Charity funding

Private or self funding

I don’t know

If you have sought charity funding or privately funded a standing frame for your child, please
state why in the box below.

8b. Please tell us the type of school your child attends. If your child has split placement,
please tick all that apply:

Mainstream school

Local Authority (maintained) (including voluntary aided faith schools)

Academy

Independent or voluntary sector

Local Authority school with additionally resourced provision (ARP) or centre (ARC)

Special school

Local Authority school or 6th form college

Academy

Independent or voluntary sector

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
99
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

Post 16 placement

Mainstream 6th Form

Local Authority school or 6th form college

Academy

Independent or voluntary sector school or 6th form college

Special School

Local Authority school

Independent or voluntary sector school or 6th form college

College of Further Education

Mainstream course of study

Specialist curriculum (Learning Difficulties and/or Physical Disabilities)

Specialist College (independent or voluntary sector)

Day pupil

Residential placement

If other (e.g. EOTAS [education other than at school], PRU [pupil referral unit] etc) please
specify in the box below.

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6. Assessment and monitoring of your child and their standing frame use

9. Who assessed and fitted your child’s current or most recent standing frame? (Please
tick all that apply)

Physiotherapist

Occupational Therapist

Paediatrician

Orthopaedic Surgeon

Frame Manufacturer/Representative

Therapy Assistant

I don’t know

Other (please specify)

10. Who has monitored your child’s current or most recent standing frame? (Please tick
all that apply)

Physiotherapist

Occupational Therapist

Paediatrician

Orthopaedic Surgeon

Frame Manufacturer/Representative

Therapy Assistant

I don’t know

Other (please specify)

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
101
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

7. The current recommendation for your child regarding using a standing frame

Not all children with cerebral palsy are prescribed a standing frame at all ages.

11. At what age did your child first use a standing frame?

12. The current recommendation for using a standing frame for your child

A standing frame has previously been recommended and used by my child; but is not
recommended at the current time

A standing frame is currently recommended for my child

If a standing frame has previously been recommended and used by your child; but is not
recommended at the current time, please go to QUESTION 13, SECTION 8.

If a standing frame is currently recommended for your child, please go to QUESTION 15,
SECTION 9.

8. Your child’s experience of previously using a standing frame

13. Please tell us the age your child stopped using a standing frame

We are an experienced team of clinicians and researchers and have developed this survey
with parents and young people who have used standing frames.

We recognise that there are lots of practical reasons why using standing frames can be
difficult. Please help us to understand more about your experience of using standing
frames in the following questions.

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14. Have you or your child experienced any of these recognised difficulties of using a
standing frame?

There was sometimes not enough time for my child to use a standing frame at home

We have had difficulties with other equipment (e.g. a hoist) to use to position our
child into the standing frame

My child sometimes wanted a rest from using a standing frame

There were sometimes moving and handling difficulties at home for my child (e.g.
safety concerns)

There was limited space to use or store the standing from

There were not always enough people (parents or carers) to position my child in the
standing frame

My child disliked standing in their standing frame

My child experienced pain when standing in their standing frame

Other (please specify)

Please go to QUESTION 24, SECTION 14

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
103
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

9. Using standing frames at home

We are an experienced team of clinicians and researchers and have developed this survey
with parents and young people who have used standing frames.

We recognise that there are lots of practical reasons why using standing frames at home
can be difficult. Please help us to understand more about your experience of using standing
frames at home in the following questions.

15. Does your child use a standing frame at home?

Yes – and they continue to use a standing frame at home

No – a frame is available for use at home but it is not currently being used

No – they do not have a standing frame at home at present but they have used a
standing frame at home previously

No – they have never used a standing frame at home

If a standing frame is used at home, please go to QUESTION 13, SECTION 8.

If a standing frame is not used at home, please go to QUESTION 20, SECTION 12.

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10. Using standing frames

16. Does your child use a standing frame during the school/nursery holidays?

Yes

No

I don’t know

If Yes, where do they use a standing frame?

17. Please tell us the reason(s) why your child does not use a standing frame at home
currently (please tick all that apply)

Using a standing frame at home has not been recommended for my child

There is not enough time for my child to use a standing frame at home

We do not have a standing frame at home

We do not have access to equipment (e.g. a hoist) to use to position our child into the
standing frame

My child wants a rest from therapy at home or in school holidays

There are moving and handling difficulties at home for my child (e.g. safety concerns)

There is not enough space at home to use or store the standing frame

There are not enough people (parents or carers) at home to position my child in the
standing frame

My child dislikes standing in a standing frame

My child experiences pain when standing in a standing frame

Other reasons (please specify)

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
105
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

11. Your child’s current standing programme

We know that not all children are able to stand in their frames as much as it is
recommended – please try to answer the following questions as honestly as possible – we
need to understand how easy or difficult it is for families to use standing frames.

18. Firstly we’d like to know how often your child stands in their frame

At school At short break care or other location

Every day Every day

How often is it More than 3 times each week More than 3 times each week
recommended that your More than once each week More than once each week
child stands in their Once each week Once each week
standing frame Less than once each week Less than once each week
currently? Not recommended in this location Not recommended in this location
I am not sure I am not sure

At school At short break care or other location

Every day Every day

More than 3 times each week More than 3 times each week
How often does your
More than once each week More than once each week
child manage to stand
Once each week Once each week
in their standing frame
Less than once each week Less than once each week
currently?
Not recommended in this location Not recommended in this location
I am not sure I am not sure

Is there a difference between how often it is recommended that your child uses their frame
and how often they manage to use it, please can you tell us the reasons why?

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19. Secondly, we’d like to know how long your child stands in their frame – each time
they stand
At school At short break care or other location

More than 2 hours More than 2 hours

How long is it 1 to 2 hours 1 to 2 hours
recommended that your 30 minutes to 1 hour 30 minutes to 1 hour
child stands in their Less than 30 minutes Less than 30 minutes
standing frame Not recommended in this location Not recommended in this location
currently? I am not sure My child does not attend short break
care or stay at another location
I am not sure

At school At short break care or other location

How long does your More than 2 hours More than 2 hours
child manage to stand 1 to 2 hours 1 to 2 hours
in their standing frame 30 minutes to 1 hour 30 minutes to 1 hour
currently? Less than 30 minutes Less than 30 minutes
Not recommended in this location Not recommended in this location
I am not sure My child does not attend short break
care or stay at another location
I am not sure

Is there a difference between how often it is recommended that your child uses their frame
and how often they manage to use it, please can you tell us the reasons why?

Please go to QUESTION 24, SECTION 14.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
107
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

12. Using standing frames at home

20. When does your child use their standing frame at home (please tick all that apply)

On weekdays outside school/nursery hours

At weekends

During school holidays

21. Have you or your child experienced any of these recognised difficulties with using
standing frames at home in the last 6 months? (please tick all that apply)

There is sometimes not enough time for my child to use a standing frame at home

We have had difficulties with other equipment (e.g. a hoist) to use to position our
child into the standing frame

My child sometimes wants a rest from therapy at home

There are sometimes moving and handling difficulties at home for my child (e.g.
safety concerns)

There is limited space at home to use or store the standing frame

There are not always enough people (parents or carers) at home to position my child in
the standing frame

My child dislikes standing in their standing frames

My child experiences pain when standing in their standing frame

Other reasons (please specify)

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13. Your child’s current standing programme

We know that not all children are able to stand in their frames as much as it is
recommended – please try to answer the following questions as honestly as possible – we
need to understand how easy or difficult it is for families to use standing frames.

22. Firstly we’d like to know how often your child stands in their frame

At home At school At short break or other

location

Every day Every day Every day

More than 3 times each More than 3 times each More than 3 times each
week week week
How often is it More than once each More than once each More than once each
recommended that your week week week
child stands in their Once each week Once each week Once each week
standing frame Less than once each week Less than once each week Less than once each week
Not recommended in this Not recommended in this Not recommended in this
currently?
location location location
I am not sure I am not sure I am not sure

At home At school At short break or other

location

Every day Every day Every day

More than 3 times each More than 3 times each More than 3 times each
week week week
How often does your More than once each More than once each More than once each
child manage to stand week week week
in their standing frame Once each week Once each week Once each week
currently? Less than once each week Less than once each week Less than once each week
Not recommended in this Not recommended in this Not recommended in this
location location location
I am not sure I am not sure I am not sure

Is there a difference between how often it is recommended that your child uses their frame
and how often they manage to use it - please can you tell us the reasons why?

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
109
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

23. Secondly, we’d like to know how long your child stands in their frame – each time
they stand
At home At school At short break or other
location

More than 2 hours More than 2 hours More than 2 hours

1 to 2 hours 1 to 2 hours 1 to 2 hours
30 minutes to 1 hour 30 minutes to 1 hour 30 minutes to 1 hour
How often is it Less than 30 minutes Less than 30 minutes Less than 30 minutes
recommended that your Not recommended in this Not recommended in this Not recommended in this
child stands in their location location location
standing frame I am not sure I am not sure My child does not attend
short break care or stay at
currently?
another location
I am not sure

At home At school At short break or other

location

More than 2 hours More than 2 hours More than 2 hours

How often does your 1 to 2 hours
1 to 2 hours 1 to 2 hours
child manage to stand 30 minutes to 1 hour 30 minutes to 1 hour 30 minutes to 1 hour
in their standing frame Less than 30 minutes Less than 30 minutes Less than 30 minutes
currently? Not recommended in this Not recommended in this Not recommended in this
location location location
I am not sure I am not sure My child does not attend
short break care or stay at
another location
I am not sure

Is there a difference between the time it is recommended that your child stands in their frame
and how long they manage to stand – please can you tell us the reason why there is a
difference?

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14. Benefits for children with cerebral palsy using standing frames

There are many reported benefits of using standing frames for children with cerebral palsy.
Below some of them are listed. You will see the list twice.

In the first question, we would be grateful if you could tick all the benefits that you may
have seen. In the second question, please only tick 3 benefits that you feel have been most
important to your child.

24. How do you think your child benefits or has benefited from using a standing frame?
(please tick all that apply)

To participate in activities

To enjoy activities

To help my child communicate

To be at the same level as his/her peers and to interact/play with them

To give my child an opportunity for a change of position

To help my child use their vision

To improve breathing

To improve bladder and bowel functions

To help my child stand independently in future

To help my child walk in future

To improve my child’s motor abilities e.g. trunk control

To improve my child’s motor abilities e.g. head control

To improve my child’s motor abilities e.g. using their hands

To reduce risk of joint contractions (keep their legs straight as they grow)

To reduce risk of hip dislocation or damage

To improve my child’s bone strength

To reduce risk of fractures

Other reasons (please specify)

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
111
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

25. Please indicate from the repeated list below the 3 most important benefits to your
child

To participate in activities

To enjoy activities

To help my child communicate

To be at the same level as his/her peers and to interact/play with them

To give my child an opportunity for a change of position

To help my child use their vision

To improve breathing

To improve bladder and bowel functions

To help my child stand independently in future

To help my child walk in future

To improve my child’s motor abilities e.g. trunk control

To improve my child’s motor abilities e.g. head control

To improve my child’s motor abilities e.g. using their hands

To reduce risk of joint contractions (keep their legs straight as they grow)

To reduce risk of hip dislocation or damage

To improve my child’s bone strength

To reduce risk of fractures

Other reasons (please specify)

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26. In our experience there are often delays in starting a standing programme, or
replacing equipment for children who use standing frames. Please indicate the waiting
times your child has experienced below

The shortest time that my child has waited for standing frame after it has been recommended:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

The longest time that my child has waited for standing frame after it has been recommended:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

27. Please add any other comments regarding you and your child’s experience of using
standing frames that you have not included in the questions above

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
113
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

15. Further research – invitation for parents and carers to participate in focus
group discussions

As part of this research project we will be arranging some further group discussions for
parents and individual interviews for young people with cerebral palsy to give us their views
about using standing frames.

If you would like to hear more about this further research or you and/or your child are
interested in taking part – please fill in details below. Please note your contact details will
be stored securely (according to Trust and University regulatory guidance) and will not be
shared with any other parties.

28. Please indicate below if you are a parent who would like further information to
participate further in this research

I am a parent/carer and I would be interested in participating in focus group

discussions
regarding the use of standing frames for young people with cerebral palsy and
potential
future research projects

I am not interested in participating in focus group discussions regarding the use of

standing frames for young people with cerebral palsy and potential future research
projects

16. Contact details for parents and carers interested in participating in focus
groups

Thank you very much for your input with the survey so far and your interest in
participating further in the study.

We have invited a large number of parents and carers to complete the survey; and will only
be inviting 15-20 parents to focus groups. Please don’t be too disappointed if you’re not
invited.

Please note that by providing your contact details you are not committed to attending the
focus group, we will contact you with more information and you can choose not to
participate at any time, without needing to give us a reason.

We will, of course, keep you updated with the progress of this research and results of the
survey.

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29. Please leave your contact details below for us to contact you regarding further
information on the research and participation in focus groups

Name

Address

Address 2

City/Town

Postcode

Country

Email address

Phone number

17. Further research – invitation for young people to attend an interview about
using standing frames

As part of this research project we will be arranging some individual interviews for young
people age 8-18 years with cerebral palsy to give us their views about using standing
frames.

If you would like to hear more about this further research or you and/or your child are
interested in taking part – please fill in details below. Please note your contact details will
be stored securely (according to Trust and University regulatory guidance) and will not be
shared with any other parties.

30. Please indicate below if you would be interested in further research and
participation of your child in individual interviews to give us their views about standing
frames

My child is 8-18 years and I am happy to provide my child’s information and to be

contacted with more information about interviews

I do not wish to provide my child’s information or be contacted about my child

participating in interviews

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
115
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 1

16. Contact details for information regarding your child’s participation in an

interview

Thank you very much for your input with the survey so far and your interest in
participating further in the study.

We have invited a large number of parents and carers to complete the survey; and will only
be inviting 15-20 parents to focus groups. Please don’t be too disappointed if you’re not
invited. Please note that by providing your contact details you are not committed to
attending the focus group, we will contact you with more information and you can choose
not to participate at any time, without needing to give us a reason.

We will, of course, keep you updated with the progress of this research and results of the
survey.

31. Please leave your contact details below for us to contact you regarding further
information on the research and participation of your child in interviews or focus
groups

Name

Address

Address 2

City/Town

Postcode

Country

Email address

Phone number

32. What is your child’s name?

33. What is your child’s date of birth?

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Appendix 2 Survey 1: prescribing clinicians

Survey 1 Standing frames for Prescribers

1. Introduction and Consent

We would like to invite you to participate in this national research study “Standing frames as
postural management for children with spasticity, what is the acceptability of a trial to assess
the efficacy of standing frames?’ This study is being carried out by a research team from
Newcastle University and is funded by The National Institute for Health Research Health
Technology Assessment (NIHR HTA) Programme.

You are invited to participate in this study because you are a professional who works with
children with cerebral palsy who may use a standing frame.

The purpose of this research study is to understand the current use of standing frames in
children with cerebral palsy in the UK. If you agree to take part in this study, you will be
asked to complete the survey on the next page. This survey will ask about your experience of
standing frame use, and current postural management using standing frames for children with
cerebral palsy. It will take you approximately 15 minutes to complete.

You may not directly benefit from this research; however, we hope that your participation in
the study may improve understanding of current practice in standing frame use in the UK, to
inform future research into standing frames as part of postural management for children with
cerebral palsy. Your answers in this study will remain anonymous.

You do not need to give us any contact information; however at the end of the survey we will
ask if you would like to be contacted regarding further research into standing frames; if you
do provide us with your contact information at this stage; this information will be separated
from your survey responses and kept securely by the research team. It will not be used for any
other purpose than contacting you about further research. We will not give these details to any
other parties. Your participation in this study is completely voluntary and you can withdraw
at any time. If you have questions about this project or if you have a research-related
problem, you may contact the researcher(s).

By clicking on “I agree” to the survey/questionnaire below you are indicating that you are at
least 18 years old, have read and understood this consent form and agree to participate in this
research study. Please print a copy of this page for your records. Please ONLY input your
contact details on the survey/questionnaire if you agree to future contact from the research
team and ONLY on the page indicated.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
117
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

1. I am over 18 years of age and have read and understood the consent paragraph above
regarding this survey

I agree to continue and complete the survey.

I do not wish to continue with the survey.

2. Your role

2. My experience of using standing frames for children with cerebral palsy is based on
my role as:

(please tick all that apply)

Parent/carer

Classroom Support/Teacher

Physiotherapist

Occupational Therapist

Therapy Assistant or Technical Instructor

Paediatrician

Orthopaedic Surgeon

Other (please specify)

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3. My current role includes:

Working with children (0–18 years) who use standing frames – but not leading or
prescribing on monitoring their use

Prescribing and monitoring standing frame use for children (0–18 years)

This survey is designed for professionals who lead on prescribing and monitoring the use of
standing frames for children with cerebral palsy.

There is an alternative survey for professionals who work with children with cerebral palsy
who use standing frames.

3. Experiences of standing frame use

4. For how many years have you prescribed standing frames for children with cerebral
palsy?

Less than 2 years

2 – 5 years

6 – 10 years

More than 10 years

5. Please indicate your current working environments (please tick all that apply)

In-patient (hospital)

Out patients (clinics)

Community - home

Community – school

Other (please specify)

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
119
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

6. Please indicate below your employment information (please tick all that apply)

Employed by NHS or I am a clinical academic (university employed – but work in

clinical practice)

Employed via education or social care provider

Work in private practice only

Other (please specify)

PLEASE NOTE:

IF YOU WORK IN BOTH PRIVATE PRACTICE AND FOR ANOTHER

ORGANISATION PLEASE ANSWER THE SURVEY BELOW IN YOUR ROLE AS
EMPLOYED BY THE OTHER ORGANISATION.

IF YOU WORK ONLY IN PRIVATE PRACTICE THEN CONTINUE TO ANSWER THE

SURVEY IN THIS ROLE.

4. Children using standing frames

7. Which groups of children with cerebral palsy do you prescribe frames? (Please tick
all that apply)

GMFCS I

GMFCS II

GMFCS III

GMFCS IV

GMFCS V

I am not familiar with GMFCS (Gross Motor Function Classification Score)

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

8. How many children with cerebral palsy on your current case load are prescribed
standing frames?

< 10 children

11 – 20 children

21 – 30 children

> 30 children

9. How many new prescriptions of standing frames for children with cerebral palsy have
you completed in the last 12 months?

< 10 children

11 – 20 children

21 – 30 children

> 30 children

5. Types of standing frames

10. Which type(s) of standing frame(s) do you have experience of using? (Please tick all
that apply)
Please refer to the pictures below.

Fixed prone standing frame

Upright standing frame

Supine standing frame

Dynamic frame

Sit to stand frame

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
121
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

Fixed Prone Standing Frame Upright Standing Frame

Supine Standing Frame Dynamic Standing Frame

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Sit to Stand Frame

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
123
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

6. Choice of standing frame

11. Have you experienced external factors that have influenced the choice of standing
frame for children with cerebral palsy in your practice? (Please tick all that apply)

Availability of standing frames

Cost of standing frames or funding pathways

Physical space

Parent or young person choice of standing frame

Other (please specify)

7. Challenges to prescribed use of standing frames in children with cerebral palsy

12. There are some recognised challenges to standing frames prescribed use for children
with cerebral palsy. Please indicate below any of these that you have experienced in your
practice in the last 12 months (Please tick all that apply)

Allocation of resources or funding for frame

Allocation of resources for staff to prescribe/monitor use

Physical space in home

Availability of parents or carers at home to help position the child in the frame

Physical space in school

Availability of staff/carers in school to help position the child in the frame

Transportation of equipment

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Please tell us of any other challenges to standing frame prescribed use in the box below

13. Please indicate below the current waiting times for children with cerebral palsy in
your area, from identification of need (prescribers’ recommendation) to commencing a
programme of standing in a standing frame

The shortest time for standing frame programme in last year:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

I don’t know

Average waiting time for standing frame programme in last year:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

I don’t know

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
125
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

Longest waiting time for standing frame programme in last year:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

I don’t know

8. Prescribing frames for children with cerebral palsy GMFCS IV and V

Please note:

This study is to consider current UK practice and the feasibility of a trial of standing frame
use in children with cerebral palsy GMFCS IV and V

Please answer the following questions thinking of these groups only

14. At what age would you first consider starting standing frame use for children with
CP GMFCS IV and V?

Less than 6 months

7 – 12 months

13 – 18 months

19 – 24 months

25 – 30 months

More than 30 months

What factors may influence your decision to delay starting standing frame use in children
GMFCS IV or V?

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

15. Please indicate the frequency that you would IDEALLY recommend that children
with cerebral palsy GMFCS IV or V stands in their standing frame?

Every day

More than three times each week

More than once each week

Once each week

Less than once each week

Other (please specify)

9. Standing programme for children with cerebral palsy GMFCS IV and V

16. Please indicate the IDEALLY recommended duration of standing, each time a child
with cerebral palsy GMFCS IV or V stands in their frame?

More than 120 minutes (2 hours)

91 minutes to 120 minutes (2 hours)

61 minutes to 90 minutes

31 minutes to 60 minutes (1 hour)

Less than 30 minutes

17. What influences the standing programme care pathway for children with cerebral
palsy GMFCS IV and V in your area? (Please tick all that apply)

Individual practice of practitioners

Written local (trust or employer) guidelines

Written regional guidelines

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
127
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

If you use local or regional guidelines we would value your sharing of these guidelines.
Please provide contact information

10. Monitoring standing frame use in children with GMFCS IV and V

18. For a child with CP GMFCS IV or V in whom you have prescribed a standing
frame:
In current practice (i.e. what is achievable?)
In an ideal world

More than once a week More than once a week

How often would you Weekly Weekly
or one of your team Fortnightly Fortnightly
routinely monitor the Monthly Monthly
suitability of this Every 3 months (or termly) Every 3 months (or termly)
equipment for the Less frequently than termly Less frequently than termly
child? When requested When requested

In current practice (i.e. what is achievable?)

In an ideal world

More than once a week More than once a week

Weekly Weekly
How often would you
Fortnightly Fortnightly
or one of your team
Monthly Monthly
review the standing
Every 3 months (or termly) Every 3 months (or termly)
programme for the
Less frequently than termly Less frequently than termly
child?
When requested When requested

Other (please specify)

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

19. If it is not always you who reviews the suitability of the standing frame for the child
or changes the prescription of the standing programme, please tell us the role/title of the
person who would do this

11. Indications for standing frames in children with cerebral palsy GMFCS IV and
GMFCS V

There are many different stated indications of standing frame use in children with cerebral
palsy GMFCS IV and V at different ages.

20. Please consider below the indications for standing frame use in children with
cerebral palsy GMFCS IV and V at different ages; and indicate in which group the
indications are relevant at different ages
Less than 5 years old 5-11 years old 12 years and above

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve bone GMFCS IV and V GMFCS IV and V GMFCS IV and V
density/strength Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To reduce risk of GMFCS IV and V GMFCS IV and V GMFCS IV and V
fractures Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To reduce risk of join
GMFCS IV and V GMFCS IV and V GMFCS IV and V
contractures Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To reduce risk of hip GMFCS IV and V GMFCS IV and V GMFCS IV and V
dislocation or damage Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
129
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To participate in GMFCS IV and V GMFCS IV and V
GMFCS IV and V
activities Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To enjoy activities GMFCS IV and V GMFCS IV and V GMFCS IV and V
Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve breathing GMFCS IV and V GMFCS IV and V GMFCS IV and V
Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve bladder and GMFCS IV and V GMFCS IV and V GMFCS IV and V
bowel functions Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To help the child stand GMFCS IV and V GMFCS IV and V GMFCS IV and V
independently in future Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To help them walk in GMFCS IV and V GMFCS IV and V
GMFCS IV and V
future Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve motor
GMFCS IV and V GMFCS IV and V GMFCS IV and V
abilities e.g. targeted Never/not indicated Never/not indicated Never/not indicated
training or trunk control I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve motor GMFCS IV and V GMFCS IV and V
GMFCS IV and V
abilities e.g. head Never/not indicated Never/not indicated Never/not indicated
control I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

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GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve motor
GMFCS IV and V GMFCS IV and V GMFCS IV and V
abilities e.g. use of Never/not indicated Never/not indicated Never/not indicated
upper limbs/hand I don’t know/I am not I don’t know/I am not I don’t know/I am not
function sure sure sure

To give the child an GMFCS IV only GMFCS IV only GMFCS IV only

opportunity for a GMFCS V only GMFCS V only GMFCS V only
GMFCS IV and V GMFCS IV and V GMFCS IV and V
change of position Never/not indicated Never/not indicated
Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve or support GMFCS IV and V GMFCS IV and V
GMFCS IV and V
communication Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve or support GMFCS IV and V GMFCS IV and V
GMFCS IV and V
vision Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve or support GMFCS IV and V GMFCS IV and V
GMFCS IV and V
peer interaction Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

Are there any definite contradictions to standing frame use in children with cerebral palsy
GMFCS IV and V? If so please write below.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
131
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 2

21. Please add any other comments on standing frame use for children with cerebral
palsy in the space below

12. Further research – invitation for prescribers to participate in focus group discussions

As part of this research project we will be arranging some further group discussions for
professionals prescribing standing frames for children with cerebral palsy to give us their
views about using standing frames and future research into standing frame use.

We will also be completing a further survey in 2017 to consider potential trial designs of
standing frames for children with cerebral palsy.

If you would like to hear more about this further research or are interested in taking part –
please fill in details on the next pages. Please note your contact details will be stored
securely (according to Trust and University regulatory guidance) and will not be shared
with any other parties.

22. Please indicate below if you would like further information regarding participation
in focus groups to contribute further in this research

I would be interested in participating in focus group discussions regarding the use of

standing frames for young people with cerebral palsy and potential future research
projects

I am not interested in participating in focus group discussions regarding the use of

standing frames for young people with cerebral palsy

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13. Contact details for participants interested in participating in focus groups – 2016

Thank you for your interest and providing us with your contact details. We will keep you
updated with the progress of the study.

Please note that there will be limited numbers of people who can be invited to the focus
groups, and we will be inviting people with a variety of experience.

23. Please leave your contact details below for us to contact you regarding further
information on the research and participation in focus groups

Name

Address

Address 2

City/Town

Postcode

Country

Email address

Phone number

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
133
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Appendix 3 Survey 1: non-prescribing

professionals

Appendix 3: Survey 1 – Non-prescribing professionals

Survey 1 Standing frames Survey for Professionals

1. Introduction and Consent

We would like to invite you to participate in this national research study “Standing frames as
postural management for children with spasticity, what is the acceptability of a trial to assess
the efficacy of standing frames?’ This study is being carried out by a research team from
Newcastle University and is funded by The National Institute for Health Research Health
Technology Assessment (NIHR HTA) Programme.

You are invited to participate in this study because you are a professional who works with
children with cerebral palsy who may use a standing frame.

The purpose of this research study is to understand the current use of standing frames in
children with cerebral palsy in the UK. If you agree to take part in this study, you will be
asked to complete the survey on the next page. This survey will ask about your experience of
standing frame use, and current postural management using standing frames for children with
cerebral palsy. It will take you approximately 15 minutes to complete.

You may not directly benefit from this research; however, we hope that your participation in
the study may improve understanding of current practice in standing frame use in the UK, to
inform future research into standing frames as part of postural management for children with
cerebral palsy. Your answers in this study will remain anonymous.

You do not need to give us any contact information; however at the end of the survey we will
ask if you would like to be contacted regarding further research into standing frames; if you
do provide us with your contact information at this stage; this information will be separated
from your survey responses and kept securely by the research team. It will not be used for any
other purpose than contacting you about further research. We will not give these details to any
other parties. Your participation in this study is completely voluntary and you can withdraw
at any time. If you have questions about this project or if you have a research-related
problem, you may contact the researcher(s).

By clicking on “I agree” to the survey/questionnaire below you are indicating that you are at
least 18 years old, have read and understood this consent form and agree to participate in this
research study. Please print a copy of this page for your records. Please ONLY input your
contact details on the survey/questionnaire if you agree to future contact from the research
team and ONLY on the page indicated.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
135
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 3

1. I am over 18 years of age and have read and understood the consent paragraph above
regarding this survey

I agree to continue and complete the survey.

I do not wish to continue with the survey.

2. Your role

2. My experience of using standing frames for children with cerebral palsy is based on
my role as:

(please tick all that apply)

Parent/carer

Classroom Support/Teacher

Physiotherapist

Occupational Therapist

Therapy Assistant or Technical Instructor

Paediatrician

Orthopaedic Surgeon

Other (please specify)

3. My current role includes:

Working with children (0–18 years) who use standing frames – but not leading or
prescribing on monitoring their use

Prescribing and monitoring standing frame use for children (0–18 years)

This survey is designed for professionals who work with children with cerebral palsy who use
standing frames.

There is an alternative survey for professionals who lead on prescribing and monitoring the
use of standing frames for children with cerebral palsy.

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

3. Experiences of standing frame use

4. For how many years have you worked with children who use standing frames?

Less than 2 years

2 – 5 years

6 – 10 years

More than 10 years

5. Please indicate your current working environments (please tick all that apply)

In-patient (hospital)

Out patients (clinics)

Community - home

Community – school

Other (please specify)

6. Please indicate below your employment information (please tick all that apply)

Employed by NHS or I am a clinical academic (university employed – but work in

clinical practice)

Employed via education or social care provider

Work in private practice only

Other (please specify)

PLEASE NOTE:

IF YOU WORK IN BOTH PRIVATE PRACTICE AND FOR ANOTHER

ORGANISATION PLEASE ANSWER THE SURVEY BELOW IN YOUR ROLE AS
EMPLOYED BY THE OTHER ORGANISATION.

IF YOU WORK ONLY IN PRIVATE PRACTICE THEN CONTINUE TO ANSWER THE

SURVEY IN THIS ROLE.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
137
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 3

4. Children using standing frames

7. Which groups of children with cerebral palsy do you see use standing frames? (Please
tick all that apply)

GMFCS I

GMFCS II

GMFCS III

GMFCS IV

GMFCS V

I am not familiar with GMFCS (Gross Motor Function Classification Score)

8. How many children with cerebral palsy on your current case load are prescribed
standing frames?

< 10 children

11 – 20 children

21 – 30 children

> 30 children

5. Types of standing frames

9. Which type(s) of standing frame(s) do you have experience of using? (Please tick all
that apply)
Please refer to the pictures below.

Fixed prone standing frame

Upright standing frame

Supine standing frame

Dynamic frame

Sit to stand frame

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Fixed Prone Standing Frame Upright Standing Frame

Supine Standing Frame Dynamic Standing Frame

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
139
be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science
Park, Southampton SO16 7NS, UK.
 APPENDIX 3

Sit to Stand Frame

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6. Standing frame use

10. Have you experienced external factors that have influenced the choice of standing
frame for children with cerebral palsy in your practice? (Please tick all that apply)

Availability of standing frames

Cost of standing frames or funding pathways

Physical space

Parent or young person choice of standing frame

Other (please specify)

7. Challenges to prescribed use of standing frames in children with cerebral palsy

11. There are some recognised challenges to standing frames prescribed use for children
with cerebral palsy. Please indicate below any of these that you have experienced in your
practice in the last 12 months (Please tick all that apply)

Allocation of resources or funding for frame

Allocation of resources for staff to prescribe/monitor use

Physical space in home

Availability of parents or carers at home to help position the child in the frame

Physical space in school

Availability of staff/carers in school to help position the child in the frame

Transportation of equipment

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 APPENDIX 3

Please tell us of any other challenges to standing frame prescribed use in the box below

12. Please indicate below the current waiting times for children with cerebral palsy in
your area, from identification of need (prescribers recommendation) to commencing a
programme of standing in a standing frame

The shortest time for standing frame programme in last year:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

I don’t know
Average waiting time for standing frame programme in last year:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

I don’t know

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Longest waiting time for standing frame programme in last year:

Less than 4 weeks

4 – 8 weeks

9 – 13 weeks

14 – 20 weeks

21 – 25 weeks

More than 26 weeks

I don’t remember

I don’t know

8. Prescribing frames for children with cerebral palsy GMFCS IV and V

Please note:

This study is to consider current UK practice and the feasibility of a trial of standing frame
use in children with cerebral palsy GMFCS IV and V

Please answer the following questions thinking of these groups only

13. At what age would you first consider starting standing frame use for children with
CP GMFCS IV and V?

Less than 6 months

7 – 12 months

13 – 18 months

19 – 24 months

25 – 30 months

More than 30 months

I don’t know – I would rely on the prescriber to advise

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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Park, Southampton SO16 7NS, UK.
 APPENDIX 3

What factors may influence your decision to delay starting standing frame use in children
GMFCS IV or V?

14. Please indicate the frequency that you would IDEALLY recommend that children
with cerebral palsy GMFCS IV or V stands in their standing frame?

Every day

More than three times each week

More than once each week

Once each week

Less than once each week

I don’t know – I would rely on the prescriber to advise

Other (please specify)

15. Please indicate the IDEALLY recommended duration of standing, each time a child
with cerebral palsy GMFCS IV and V stands in their frame?

More than 120 minutes (2 hours)

91 – 120 minutes (2 hours)

61 – 90 minutes

31 – 60 minutes (1 hour)

Less than 30 minutes

I don’t know – I would rely on the prescriber to advise

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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

16. What influences the standing programme care pathway for children with cerebral
palsy GMFCS IV or V in your area? (Please tick all that apply)

Individual practice of practitioners

Written local (trust or employer) guidelines

Written regional guidelines

If you use local or regional guidelines we would value your sharing of these guidelines.
Please provide contact information

9. Indications for standing frames in children with cerebral palsy GMFCS IV and GMFCS
V

There are many different stated indications of standing frame use in children with cerebral
palsy GMFCS IV and V at different ages.

17. Please consider below the indications for standing frame use in children with
cerebral palsy GMFCS IV and V at different ages; and indicate in which group the
indications are relevant at different ages
Less than 5 years old 5-11 years old 12 years and above

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve bone GMFCS IV and V GMFCS IV and V GMFCS IV and V
density/strength Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To reduce risk of GMFCS IV and V GMFCS IV and V GMFCS IV and V
fractures Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To reduce risk of join GMFCS IV and V GMFCS IV and V GMFCS IV and V
contractures Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 APPENDIX 3

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To reduce risk of hip GMFCS IV and V GMFCS IV and V GMFCS IV and V
dislocation or damage Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To participate in GMFCS IV and V GMFCS IV and V
GMFCS IV and V
activities Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

To enjoy activities GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
GMFCS IV and V GMFCS IV and V GMFCS IV and V
Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve breathing GMFCS IV and V GMFCS IV and V GMFCS IV and V
Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve bladder and GMFCS IV and V GMFCS IV and V GMFCS IV and V
bowel functions Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To help the child stand GMFCS IV and V GMFCS IV and V GMFCS IV and V
independently in future Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To help them walk in GMFCS IV and V GMFCS IV and V
GMFCS IV and V
future Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

To improve motor
GMFCS IV only GMFCS IV only GMFCS IV only
abilities e.g. targeted
GMFCS V only GMFCS V only GMFCS V only
training or trunk control GMFCS IV and V GMFCS IV and V GMFCS IV and V
Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

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GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve motor GMFCS IV and V GMFCS IV and V
GMFCS IV and V
abilities e.g. head Never/not indicated Never/not indicated Never/not indicated
control I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve motor GMFCS IV and V GMFCS IV and V GMFCS IV and V
abilities e.g. use of Never/not indicated Never/not indicated Never/not indicated
upper limbs/hand I don’t know/I am not I don’t know/I am not I don’t know/I am not
function sure sure sure

To give the child an GMFCS IV only GMFCS IV only GMFCS IV only

opportunity for a GMFCS V only GMFCS V only GMFCS V only
GMFCS IV and V GMFCS IV and V GMFCS IV and V
change of position Never/not indicated Never/not indicated
Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve or support GMFCS IV and V GMFCS IV and V
GMFCS IV and V
communication Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve or support GMFCS IV and V GMFCS IV and V
GMFCS IV and V
vision Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

GMFCS IV only GMFCS IV only GMFCS IV only

GMFCS V only GMFCS V only GMFCS V only
To improve or support GMFCS IV and V GMFCS IV and V
GMFCS IV and V
peer interaction Never/not indicated Never/not indicated Never/not indicated
I don’t know/I am not I don’t know/I am not I don’t know/I am not
sure sure sure

Are there any definite contradictions to standing frame use in children with cerebral palsy
GMFCS IV and V? If so please write below.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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Park, Southampton SO16 7NS, UK.
 APPENDIX 3

18. Please add any other comments on standing frame use for children with cerebral
palsy in the space below

10. Further research – invitation for professionals to participate in focus group discussions

As part of this research project we will be arranging some further group discussions for
professionals who use standing frames for children with cerebral palsy to give us their
views about using standing frames and future research into standing frame use.

We will also be completing a further survey in 2017 to consider potential trial designs of
standing frames for children with cerebral palsy.

If you would like to hear more about this further research or are interested in taking part –
please fill in details on the next pages. Please note your contact details will be stored
securely (according to Trust and University regulatory guidance) and will not be shared
with any other parties.

19. Please indicate below if you would like further information regarding participation
in focus groups to contribute further in this research

I would be interested in participating in focus group discussions regarding the use of

standing frames for young people with cerebral palsy and potential future research
projects

I am not interested in participating in focus group discussions regarding the use of

standing frames for young people with cerebral palsy

11. Contact details for participants interested in participating in focus groups – 2016

Thank you for your interest and providing us with your contact details. We will keep you
updated with the progress of the study.

Please note that there will be limited numbers of people who can be invited to the focus
groups, and we will be inviting people with a variety of experience.

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20. Please leave your contact details below for us to contact you regarding further
information on the research and participation in focus groups

Name

Address

Address 2

City/Town

Postcode

Country

Email address

Phone number

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Appendix 4 Single stakeholder focus groups:

topic guide

Standing frame Focus group schedule

Note: The focus group schedule is developmental. The questions will needto be
tailored to the discussion in the focus group and their level of experience/expertise. The
schedule given here is therefore a general topic guide.

Plan of interview

1. Introductions and setting the scene.

2. Consent
3. Participants experience of using a standing frame
4. Awareness of research into medical interventions in cerebral palsy
5. What we have found out about standing frame use in the for other young people with
cerebral palsy from the survey
6. What questions do you have about using standing frames and how they help young
people with cerebral palsy?
7. Designing a research study into standing frame use in children with cerebral palsy
8. Feedback

Setting
• Location determined by practicalities of bringing participants together (e.g. hospital,
school, meeting room)

Introduction

• Thank-you for attending.

• Introductions of everyone involvedin group: RA, other research team members and
their roles.

• Introductions of participants – acknowledge that some participants may know each

other in a personal or professional role. If this is the case – re-inforce confidentiality
issues and clarify that they are comfortable with continued participation.

• Explain purpose of project and this focus group:

o We are looking for feedback from all user of standing frames: professionals,
parent carers in focus groups and young people in interviews. We want to know
about their experiences of using standing frames, the practicalities – good and
bad.
o No right or wrong answers – not a test of knowledge

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 APPENDIX 4

• Ground rules of group.

• Consent – written – because we want to be reviewing content and analysing data.

• Explain group discussion recorded both with audio– to make sure that it is recorded
accurately but details will be confidential

• The RA is not a clinician, but the wider research team includes doctors and therapists
who do look after patients with cerebral palsy. If participants have any questions about
care of a relative or client the RA can try to direct the questions to someone who can
help, but would it be helpful if we use the focus group to try to find out more about your
questions and opinions, so please leave any questions until the end.

• Questions or concerns?

Ask participants to read and sign consent forms.

Participants experience of using a standing frame

• Do you use a standing frame?
o Where and when – setting of use ? School or home or other
o How long have you been using frames
o How many young people have you used frames with?
o Who prescribes frames
o What are the good things about using a standing frame – for the children/young
people? What do you enjoy ?
o What are the challenges to use? What do you not like?

• Why do you think children with cerebral palsy use standing frames?

• What other input do young people have with respect to thier movement and position at
home, school – daytime and night time?
o Equipment e.g. special chairs, sleep system,
o People e.g. physio, OT, teachers parents
o Activities – therapy, sport, leisure

Awareness of research into interventions in cerebral palsy

RA to explain concepts of treatments and how research is designed to develop evidence
Reasons why evidence is limited
Pictures can help with explanations
General aspects of how we go about research – at a level according to the audience
experience/profession.

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What we have found out about standing frame use in the for other young people with
cerebral palsy from the survey

Brief discussion of survey results – discuss variations in practice:

Age of starting
Duration of standing
Environment used – school, home, both, other
Practical barriers to use of frames

What questions do you have about using standing frames and how they help young
people with cerebral palsy?

Are you surprised by any of the information above from the survey?
If so – what is surprising?

Designing a research study into standing frame use in children with cerebral palsy

If you were going to design a research study to investigate standing frames – what would
it be about – and what would it be?

If there was a research trial in which you were allocated by chance to a different standing
frame of treatment programme – would you be interested in recruiting?
What would be the barriers to recruitment?
RA will prompt with examples if needed.
RA will present 2 or 3 study design ideas to generate discussion.

Feedback

• Thank you

• Are we asking the right questions?

• Do these questions relate to your own experience?

• Do these questions allow you to talk about what is important for you?

• Is there anything else you think it would be useful for us to know?

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Appendix 5 Single stakeholder focus groups:

PowerPoint presentation

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Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 APPENDIX 5

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Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 APPENDIX 5

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© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 APPENDIX 5

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© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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 APPENDIX 5

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Appendix 6 Interviews: topic guide

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 APPENDIX 6

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© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should
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Park, Southampton SO16 7NS, UK.
 DOI: 10.3310/hta22500 HEALTH TECHNOLOGY ASSESSMENT 2018 VOL. 22 NO. 50

Appendix 7 Multistakeholder focus groups:

PowerPoint presentation with topic guide included

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Goodwin et al. under the terms of a commissioning contract issued by the Secretary of State for
Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional
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 APPENDIX 7

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 APPENDIX 7

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 APPENDIX 7

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Appendix 8 Survey 2: parents

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Appendix 9 Survey 2: health professionals

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Appendix 10 Survey 2: education professionals

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