403 Blueprint
Patients recovering from the critical illness and their family members can suffer significant psychological
distress affecting activity of daily living, family relationship, social participation and professional life.
There are few initiatives where the psychological interventions were provided to patients and family
group which have shown significantly beneficial impact on psychological health.
Admission in ICU is usually stressful and affects patients, family members, and the bereaved family
members (Fergé et al., 2018; Kleinpell et al., 2018; Tang et al., 2021). Report from the Scottish Intensive
Care Society reveals that the annual admission of the patients in Scottish intensive care unit (ICU) is
greater than 15,000 (Hall, 2020). Approximately 65% of patients survive to hospital discharge, however
discharge is not an endpoint (Rosenberg & Kalhan, 2011). It is increasingly acknowledged that survival is
associated with significant burden of psychological morbidity (Hatch et al., 2018) that has been
repeatedly identified as a problem (Parker et al., 2015; Nikayin et al., 2016)
Reported benefits of psychological support on patients, FMs and BFMs There are reported evidence on
the benefits of psychological support to other patient populations such as cancer patients (Beesley et al.,
2020) , patients with long-term illness (Thabrew et al., 2018) and cardiac patients (Richards et al., 2017);
however there remains few studies showing the impact of psychological interventions to ICU patients’
outcomes. Meanwhile, looking at the research on psychosocial interventions among FMs and BFMs also
provides generally positive evidence of the alleviation of psychological distress, improved quality of life
and enhanced coping (Erikson et al., 2019; Naef et al., 2020; White et al., 2018). A qualitative study
carried out by Beesley et al., (2020) described the impact of counselling on FMs of cancer patients and
the outcome was that the FMs reported of getting emotional and individualised support. However,
currently there is little evidence of impact of counselling intervention on critical care population. We
would like to find out if psychological support, in the form of counselling, would be helpful for former
ICU patients and their FMs.
How do people feel after being treated in an intensive care unit?
Patients and their families have significant psychological problems following critical illness. To date,
very few intensive care units have specialist psychological services to help with the aftermath of the
illness experience. There are promising simple therapeutic interventions, such as intensive care unit
diaries, that may be beneficial, but which require further research at present.
Being critically ill is a physically and emotionally overwhelming experience.
Naturally, given the scale of what you have been through, it takes time to
recover. How you feel, and how long it takes to recover will depend on what
type of illness you had, and how long you were unwell. Some very common
experiences after discharge from an intensive care unit (ICU) include:
Feeling physically weak. Even doing simple things like getting
dressed, moving about, or getting out of the bath can take enormous effort.
Fatigue. You might feel exhausted, and may feel the need to sleep
more than normal.
Numbness or other changes in how parts of your body feel.
Feelings of breathlessness upon mild exertion, like walking up the
stairs.
Changes in your appearance which might include changes in how
your hair, skin, or fingernails look and feel. You might also be recovering
from surgical scars.
Hoarse voice, especially if you had a breathing tube.
Effects on how you feel mentally. You may feel more forgetful, or
struggle to read more than a few sentences. It’s natural to feel like you have
a ‘foggy’ brain and struggle to concentrate on anything or get anything
done.
Emotional changes including feeling irritable, depressed, or anxious.
You might not feel like going out, or when you do you might feel
overwhelmed in crowded places.
Overwhelming worries such as concern about getting ill again, or worrying
you will never recover. You may worry what some of your critical care
experiences mean for your mental health: for example worrying about
hallucinations that you may have had when in hospital.
Summary of the Study- Counselling support for critically ill patients and their families
following a critical care experience: A qualitative study Sharad Rayamajhi February 2022
A qualitative study was conducted to explore perspectives of patients, family members and bereaved
family members with critical care experience on counselling provision, using individual qualitative
interviews with an independent researcher. Counselling sessions were offered by certified counsellor
with critical care experience and expertise. Semi-structured interviews were conducted to participants
at six weeks after the final counselling session where the participation was on voluntary basis. This
interview was done to explore experiences of accessing counselling (the self-referral process);
expectations and experiences of the counselling sessions, acceptability and recommendations for future
development. Thematic analysis was done to analyse the interview of the participants which was
reported based on COREQ checklist. The Consolidated Criteria for Reporting Qualitative Studies
(COREQ) covers the reporting of studies using interviews and focus groups. It is the only
reporting guidance for qualitative research to have received other than isolated endorsement
although it applies to only a few of the many qualitative methods in use. The COREQ checklist
was developed to promote explicit and comprehensive reporting of interviews and focus groups.
The COREQ checklist consists of 32 criteria, with a descriptor to supplement each item. This
chapter discusses how best to use the guideline, development process, evidence of the
effectiveness of guideline, endorsement and adherence, cautions and limitations, and key
features of the COREQ. It is important that researchers provide sufficient detail on their
methods of data analysis and the relationship between the analysis and the findings in the
research report so that reviewers can assess the rigor of the analysis and the credibility of the
findings.
The findings from the study suggest that the counselling provision was feasible and acceptable to
patients’ family and bereaved relatives. Four major themes were identified: perceived benefits,
feasibility, appraisal and context of care.
Perceived benefits Conduit to resilience
The theme ‘Perceived benefits’ encompasses the overall benefit of the counselling support experienced
by participants. It is determined by analysing how the counselling support was helpful in gaining
resilience, relief through disclosure, coping, individualised support and maintaining family relationship.
Relief through disclosure
This theme is derived from the particular feature of the counselling service by which respondents were
motivated to continue the counselling service. The identified attributes of counselling are individualised
support, nurse counsellors’ expertise background, and public acknowledgement.
Context of care This theme comprises of the recommendations and negotiation in the context of care
from the perspectives of participants. Recommendations such as publicity, and continuity of group
sessions were made while negotiations regarding physical setup and availability were made.
Feasibility Feasibility is defined as the practicability of the counselling service for future implications. It is
measured by analysing the accessibility of counselling service to respondents and their completion rates.
In addition, overall experience of the respondents was also considered to determine the feasibility of
the counselling service.
There were different viewpoints from the participants along with some similar viewpoints. For instance,
for all three group of participants counselling provision was found to be a conduit for resilience. Where
patients group found the counselling sessions mostly helpful in enhancing self-efficacy and most of the
female family members including the bereaved family members found counselling was important in
maintaining family relationship. In addition, the benefits such as enhanced coping, reduction in PTSD
symptoms, controlled anxiety and individualised support were also recorded. Participants valued the
nurse counsellor’s expertise and background during to build the trust and vent out the feelings. While
some recommendations on the context of care were also made that includes continuation of counselling
in routine care, its availability 40513818 86 according to the participants demand, and nature of
counselling. In conclusion, the counselling support provided to patients, FMs and BFMs was feasible and
acceptable intervention as per the analysis. Although this study was a pilot study that included small
population but the positive outcome of this study on the patients, family and bereaved family couldn’t
be ignored. Hence, it can be taken as an evidence base for the future implication in context of
healthcare system. A full scale randomised controlled trial is required to determine the impact of
counselling provision on patients, FMs and BFMs.
Aim of the study To explore patients, family members and bereaved family members experiences of
counselling provision.
Objectives The aim of this study was to explore patients’, family members’ and bereaved family
members’ experiences of counselling provision.
Methods We conducted a qualitative study in three Scottish Intensive care units (ICU) between 2015-
2017. Counselling service was provided to former ICU patients and their family members, including
those bereaved following a critical illness experience by a qualified, professionally accredited counsellor
who had a background in Intensive Care nursing. Participants selfreferred to the service. Semi-
structured interviews were conducted to explore participants’ experience of accessing the counselling
service, their expectations and experiences of the counselling sessions, and their recommendations for
future development. Thematic analysis was used to analyse the data. Data reporting was done using
Consolidated Criteria for reporting qualitative research checklist (COREQ). Results All twelve participants
(Patients n= 3, Family members n = 7 and Bereaved family members n=2) considered their overall
experience of the counselling support positive. Four key themes were identified: perceived benefits,
feasibility, appraisal and context of care. Conduit to resilience, enhanced coping, relief through
disclosure, maintaining family relationship and individualised support were the main perceived benefits
experienced by participants. The nurse-counsellor’s counselling expertise and critical care background
was appreciated by the majority of the participants.
Conclusion In conclusion, the counselling support provided to patients, family members and bereaved
family members was considered a feasible and acceptable intervention.
Relevance to future research: A full-scale randomised control trial is required to measure the impact of
counselling service on patient and family outcomes.
Keywords: Critical care, counselling, patients, family members, and bereaved family members.
Based on the PICO framework, the research question is outlined below: -
a. What is the impact of a counselling intervention on psychological distress of patients, family
members and bereaved family members post critical care experience?
b. Is the counselling support feasible and acceptable to patients, family members and bereaved family
members? 1.5
This chapter of the study deals with the approaches carried out to evaluate the study. This section
explains the research design, nature, sampling techniques and inclusion/exclusion criteria of participants
for the study. In similar way, details of the setting of the study, data collection procedures, instruments
used for data collection are also provided. Furthermore, the details of data analysis and ethical
considerations are given for qualitative methods.
3.2 Design This study is a prospective pilot study of a counselling service for ICU patients and their family
members, including those bereaved during the ICU or subsequent hospital stay. A qualitative approach
was implemented to meet the aims of this study. The intervention was designed and implemented as
part of a feasibility study funded by the Edinburgh and Lothian Health Foundation, which aimed to
evaluate the impact of the counselling service on psychological outcomes of former critically ill patient,
and family members in order to build a business case for implementation in the NHS. This thesis will
report only on the exploration of experiences of the participants who used the service using a qualitative
approach. The primary and secondary endpoint of the study are mentioned below: -
Primary and secondary endpoints
Primary: Six weeks after the final counselling session
Secondary: Twelve weeks after the final counselling session
3.3 Participants The participants of the study were the patients and family members including the
bereaved relatives who stayed in ICU in three hospitals in Scotland more than 24 hours and received
40513818 43 counselling support from this study during 2015 to 2016. The participants self-referred to
the counselling sessions. 3.4 The intervention
The intervention of this study was provision of counselling sessions which were offered to patients, and
their family members, including those bereaved during the ICU or subsequent hospital stay. Participants
were provided a counselling session (lasting approximately 1 hour each, approximately weekly) with a
qualified, professionally accredited counsellor who had a background in Intensive Care nursing. The
approach of counselling was based on patient and family centered (PFCC) approach where the
counselling sessions were coordinated and tailored according to need of patient, FM and BFM by a
nurse counsellor in our study. The average session attended by the participant was 13 where the
number of the sessions were determined by the need of the participants. These sessions took place in
NHS facilities.
Recruitment of participants The advertisement of pilot counselling service was done in each of the 3
general ICUs across Lothian, using a combination of posters, leaflets and business cards. Also,
advertisement of the counselling service was done with the ICU Bereavement Support Team at the
Hospitals, none of whom were trained counsellors. With the agreement of senior clinicians at each site,
a leaflet or business card to the ICU discharge booklets were attached which were provided as part of
routine care. A series of information seminars were provided to inform and engage clinical staff in all
three ICUs prior to the start of the study. Participants referred themselves and contacted the designated
counsellor using the telephone number provided in the business cards, leaflets and posters. It is evident
from various studies that psychological distress can be a complication of critical illness for some patients
and family members and that they may reach a decision about participation after hospital discharge
(Chung et al 2017 ; Milton et al., 2017). Potential participants who contacted the counsellor were
provided with an information sheet and given as much time as they required to decide their
participation (with a minimum of 24 hours).
Description of the participants The participants in this study were former critically ill patients and their
family members including the bereaved family members who were admitted to three hospitals in
Scotland. They received the counselling support from the nurse-counsellor, which was offered as a part
of this intervention study. In total, 12 respondents participated in this study where three were patients,
and nine were family members of critically ill patients. Two participants were bereaved family members
of deceased critically ill patients. Nine participants were female, and three were male. The mean age of
the participants was 49 years. Average counselling sessions they received was 13. Also, seven of the
participants had previous counselling experience; however, five participants did not have counselling
experience before.
Qualitative analysis Four main themes emerged from the transcribed data in the context of the research
objectives: (a) Perceived benefits, (b) Feasibility, (c) Appraisal and (d) Context of care Table 4 .2. Themes
are operationalized and described in Table 4.3. The thematic map of the participants is detailed in Figure
4.1.
Key findings of the study
The qualitative exploration of the study identified the four major themes such as perceived benefits,
feasibility, appraisal, and context of care. The theme ‘Perceived benefits’ encompasses the overall
benefits of the counselling support experienced by the participants. The reported benefits of counselling
support were helpful in gaining resilience, enhancing coping, individualised support, relief through
disclosure and maintaining family relationship. Likewise, the theme ‘Feasibility’ presented the
practicability of the counselling service for future implications by analysing the overall experience,
accessibility, and completion rates. Another theme ‘Appraisal’ expressed about the features of the
counselling service that made participants motivated to continue counselling which included nurse
counsellors’ expertise background, public acknowledgement, and individualised support. Regarding
‘Context of care’, the participants suggested some areas of improvements with negotiations. They
shared the concerns on the physical setup and availability of the counselling service. Also, suggestions
were made such as making counselling service part of routine care in ICU setup, 40513818 71 including
group session along with one-to-one session in counselling support structure and standard offering for
patients, FM and BFM with critical care experience.
1 Benefits of counselling There are five main benefits of the counselling support reported by the
participants in the current study which are namely conduit to resilience, enhance coping, maintain
family relationship, relief through disclosure and individualised support.
a Conduit to resilience Resilience refers to the positive adaptation, or the capacity to retain or regain
mental health, despite experiencing adverse situation (Herrman et al., 2011). The importance of the
resilience in reducing psychological distress of the patients and caregiver with ICU experience has
received considerable attention in the literature (Meyers et al., 2020). The finding from the current
study revealed that the counselling service acted as a conduit in gaining resilience of the patients, FMs
and BFMs. It is identified that the factors such as therapeutic alliance, and the strengthening of attitudes
and behaviours known to facilitate resilient outcomes (Herrman et al., 2011) which is provided in the
process of the counselling support in this study as well. After the counselling experience, participants in
the current study reported enhanced self-efficacy and self-care, reduction in PTSD symptoms, and
controlled anxiety which were considered as indicator to gain resilience.
5.3.1.b Individualised support In the last decade, the focus of Patient-Family-Centered Care (PFCC) (Yoo
& Shim, 2020) in context of health care system has gained utmost importance due to its broad benefits
which recognizes that patients, families and staff are central to the delivery of better healthcare
(Mitchell et al., 2016). Our counselling service was also based on this principle and in our study majority
of the female participants (patients and family members) appreciated the counsellor’s approach to
address their needs and unique circumstances. They felt that their emotional needs were taken care off
and got the individual specific approach to solve their issue. Thus, the incorporation of PFCC principle in
counselling service might act as a good catalyst in having positive outcome on the service user.
5.3.1.c Relief through disclosure Another important benefit that the participants reported was the relief
through disclosure which was reported mostly by the female family participants and male patients.
Patients expressed that having counsellor to listen to their concerns, they were immensely relieved
since they had vague mixed feelings and stress due to ICU experience. Whereas the female family
members appreciated the non-judgemental environment to vent their feeling since they felt that sharing
their stress to other member of the family would increase stress to them as well. Overall, patients,
family members and the bereaved family members benefited from the 40513818 75 sharing their
feelings.
5.3.1.d Coping Counselling support helped to develop healthy coping mechanisms to the patients, FMs
and BFMs. Even if the participants had the previous experience of counselling, they mentioned that they
found new ways of approaching and solving the problem. It is often reported in the literature as well
that the psychological intervention helps in improving the coping strategies of a person
5.3.1.e Family relationship In the current study, the patients expressed that they had frustrations and
doubt in selfidentity after the critical care experience. Whereas for the BFMs, they reported that loss of
the family member resulted in the existence of hopelessness and feeling of isolation. Similar feeling was
reported by the family members as well along with the increase in the anger and loneliness. Due to
above mentioned changes after critical care experience participants reported having decreased
communication and harmony among their family members. However, the participants reported that
having counselling support helped them in acknowledging and accepting the current situation and
maintaining the family relationship.
Appraisal 5.3.2.a Nurse-counsellor specialist background The most appraised feature of this counselling
service the was nurse counsellor specialist background. In the present study, the counsellor was a
former ICU nurse with expertise in counselling practice. Participants reported that since the counsellor
had the background in ICU, it made them build trust and rapport easily.
Effective communication is one of the essential component of the health care system and is highest
rated family and patient’s needs (Adams et al., 2017). Researchers have elicited the importance of good
communication to improve family comprehension and decrease the family stress in context of ICU care
(Scheunemann et al., 2011). Given the importance of communication on reducing stress in the current
study also the participants appraised about the communication approach by a nurse counsellor.
Participants felt that the non-judgemental and confidential communication approach of counsellor
helped them to build trust and open up their thoughts. Thus, communication and maintenance of the
confidentiality can be considered as an essential component of the counselling service.
b Public acknowledgement Since the counselling service advertisement was done in the hospital setting,
participants stated that this facilitated them to utilise the service. Two of the male participants shared
about presence of the stereotype Scottish culture where it is thought that men are supposed to be
strong and getting psychological supports makes them weaker in the view of the society. 40513818 79
However, those participants appreciated the way the counselling was offered at hospital that created a
feeling of public acknowledgement and acceptance of need of counselling support.
3 Feasibility The overall experience of the participants in this study towards the counselling support
they received was positive. In addition, considering 75% of completion rates and sound experience of
accessibility; it is worth acknowledging that the counselling service provided was feasible could be
considered to inform larger multicentre studies to investigate impact of counselling provision after
critical illness to build a business case for implementation in the NHS. 5.3.4
Context of care In the context of care, there were few recommendations and negotiations made by the
participants. Most BFMs and FMs expressed that if counselling service was provided to other family
members a well, they could have benefited by the service. Literature also suggest that the admission of
loved one in ICU (Schmidt & Azoulay, 2012) or loss of someone one significant in the life affect the
family as a whole (Casey Jones et al., 2018). This creates the need for support to family members
(McCallum et al., 2018) and in current scenario various supports are available in the form of
psychological (Erikson et al., 2019; Wade et al., 2015) and non- psychological interventions (Castillo et
al., 2020; Schofield et al., 2021). However, there are confounding factors that might affect to avail those
support by service users. Thus, in present study also the participants recommended to have
improvement in counselling 40513818 80 service so that in future the similar group of patients, FMs and
BFMs would get benefited.
6.1 Conclusion A qualitative study was conducted to explore perspectives of patients, family members
and bereaved family members with critical care experience on counselling provision, using individual
qualitative interviews with an independent researcher. Counselling sessions were offered by certified
counsellor with critical care experience and expertise. Semi-structured interviews were conducted to
participants at six weeks after the final counselling session where the participation was on voluntary
basis. This interview was done to explore experiences of accessing counselling (the self-referral process);
expectations and experiences of the counselling sessions, acceptability and recommendations for future
development. Thematic analysis was done to analyse the interview of the participants which was
reported based on COREQ checklist. The findings from the study suggest that the counselling provision
was feasible and acceptable to patients’ family and bereaved relatives. Four major themes were
identified: perceived benefits, feasibility, appraisal and context of care. There were different viewpoints
from the participants along with some similar viewpoints. For instance, for all three group of participants
counselling provision was found to be a conduit for resilience. Where patients group found the
counselling sessions mostly helpful in enhancing self-efficacy and most of the female family members
including the bereaved family members found counselling was important in maintaining family
relationship. In addition, the benefits such as enhanced coping, reduction in PTSD symptoms, controlled
anxiety and individualised support were also recorded. Participants valued the nurse counsellor’s
expertise and background during to build the trust and vent out the feelings. While some
recommendations on the context of care were also made that includes continuation of counselling in
routine care, its availability 40513818 86 according to the participants demand, and nature of
counselling. In conclusion, the counselling support provided to patients, FMs and BFMs was feasible and
acceptable intervention as per the analysis. Although this study was a pilot study that included small
population but the positive outcome of this study on the patients, family and bereaved family couldn’t
be ignored. Hence, it can be taken as an evidence base for the future implication in context of
healthcare system. A full scale randomised controlled trial is required to determine the impact of
counselling provision on patients, FMs and BFMs.
