J Pain Manage 2017;10(1):23-30 ISSN: 1939-5914

© 2017 Nova Science Publishers, Inc.

A scoping review of psychosocial interventions for informal

caregivers of palliative cancer patients

Leone L Sutanto*, MBChB, Fiona M Ying, Abstract

MBBS, Arnav Agarwal, MD(C),
Michael Lam, BMSc(C), Edward Chow, To explore available psychosocial interventions for
informal caregivers of palliative cancer patients. Methods:
MBBS, and Blair Henry, MTS (Bioethics) We conducted a scoping review of studies examining
Rapid Response Radiotherapy Program, Department of psychosocial interventions among informal caregivers of
Radiation Oncology, Odette Cancer Centre, Sunnybrook palliative cancer patients. Following a search conducted in
Health Sciences Centre, University of Toronto, Toronto, MEDLINE, Embase and Cochrane Central, screening was
Ontario, Canada conducted by paired reviewers to identify eligible studies,
and data extraction was subsequently completed by paired
reviewers. Findings were qualitatively summarized.
Results: Nine eligible studies were identified from 157
identified articles based on a priori eligibility criteria. Six
intervention models were identified based on these studies.
Findings from the included studies generally showed
improvements across a number of caregiver needs and
quality of life domains, largely supporting the efficacy of
the interventions across the different models. Conclusions:
The evidence suggests a notable increase in the number and
directionality of robust intervention studies, with an
expansion of range of models in relation to caregivers’
needs and preferences. More psychosocial intervention
models and studies evaluating their efficacy are warranted.

Keywords: Caregiver; informal caregiver; cancer;

palliative; psychosocial

Introduction
Informal caregivers are defined as any relative, friend,
or partner who has a significant relationship with and
provides assistance (i.e., physical, emotional) to a
patient with a life-threatening, incurable illness (1).
The role of an informal caregiver in cancer and
palliative care can be a challenging and overwhelming
one (2). The extensiveness and complexity of the role
combined with the anticipatory grief and sense of loss
*
associated with their families’ impending death can be
Correspondence: Leone Lok-Hei Sutanto, MBChB, Faculty
of Medicine, Choh-Ming Li Basic Medical Sciences overwhelming and cause significant psychological
Building (Room G07, G/F), The Chinese University of and emotional distress to the caregivers (3). The
Hong Kong, Shatin, New Territories, Hong Kong. caregiver burden and distress experienced also tends
E-mail: [email protected]
24 Leone L Sutanto, Fiona M Ying, Arnav Agarwal et al.

to increase over time in a non-linear fashion, as Methods

revealed from a study by Guerriere and colleagues
(4). It has even been suggested that caregivers have Studies were identified using a systematic search of
considerably more unmet psychosocial needs than the MEDLINE, Embase and Cochrane Central, with
cancer patients they provide care to (5). The distress additional manual searching of relevant journals and
and unmet needs experienced by caregivers, when citations of published papers. The literature search
unresolved, may translate into care-associated used the following keywords and boolean strategies:
decrease in functioning across several domains of psychosocial intervention AND caregivers/familial
physical and mental health, including sleep, anxiety, carer/informal carer AND palliative care/oncology.
depression, day-time energy, function and social Studies evaluating any type of intervention that
involvement (6). It is therefore imperative to explicitly aimed to improve outcomes for informal
conceptualize the construct of psychosocial distress to caregivers published in peer-reviewed journals were
facilitate design of various interventions to improve considered eligible. The following criteria were
the psychosocial care of families, and in particular the applied the searched results: 1) English language
caregivers, in the palliative care setting (7). publication; 2) population involving adult family
There are a number of factors that determine the caregivers of adult palliative care patients; and 3) title
degree of impact caregiving has on the cancer or abstract must explicitly state an intervention of
caregiver. These include the patient’s condition, the interest directed at caregivers. Studies were excluded
caregiver’s personality characteristics and the coping if they: 1) originated from countries with significant
style adopted (6). The caregivers’ ability to tend to cultural disparities to Western countries; or 2)
their needs therefore is dependent on these factors, included only bereavement interventions.
and often is negatively impacted when the patients’ Articles were screened at the title and abstract
needs and dependence on the caregiver increase (5). and full-text level by paired reviewers. Data was
Indeed, it is within the World Health Organization’s subsequently abstracted by paired reviewers from
definition that palliative care encompasses care to articles deemed eligible after the two screening
both patients and their families (8). Regardless, while stages. Discrepancies in screening or extractions were
caregivers are increasingly recognized for the critical resolved by discussion between the reviewers, with a
role they role in the assistance and support of third reviewer involved as an adjudicator as
palliative patients, there remains a limited knowledge necessary.
regarding the types of efficacious interventions in
meeting their complex needs (9).
As studies continue to highlight the importance of
Results
different facets of informal caregivers’ health,
psychosocial interventions have been modelled to
A total of 157 articles were identified from the initial
improve outcomes for caregivers in cancer and
electronic database search, with 131 results from
palliative care by ameliorating distress experienced by
MEDLINE, 17 results from Embase, and 9 from
caregivers and patients. Present findings suggest that
Cochrane Central. Additional articles were identified
interventions targeting communication and education
by manual search for relevance from articles citations.
have a positive impact on various caregivers
After removal of duplicates and a manual search for
outcomes, especially caregiver quality of life (QoL)
relevance according to the pre-established criteria,
(6).
nine articles were finally deemed eligible
The purpose of this scoping review is to explore
(see Figure 1).
the various unmet needs of informal caregivers
supporting oncology patients in the palliative care
setting, and identify and evaluate available
Study characteristics
psychosocial interventions intended to support these
caregivers in fulfilling these unmet needs and
Included studies comprised a total of 873 informal
strengthening their resilience.
caregivers at baseline, ranging from 12 (10) to 300
 Psychosocial interventions for informal caregivers 25

(11) caregivers across studies. (see Table 1). Different determination theory (n=1) and meaning-based
modalities of intervention were utilized, as were coping models (n=1) (13). Six formats of intervention
different methods of delivery. Most studies were models were identified: couple-based, psychological,
grounded upon specific working theoretical web-based psycho-education, meaning-centered
frameworks, with Lazarus and Folkman’s transaction psychotherapy, psycho-education and telephone-
model of stress and coping being the most popular on based (see Table 1).
(12). Other theoretical models adopted include self-

Table 1. Characteristics of included studies and summary of main findings

Theoretical Intervention and control Sample size

Author, year Primary outcomes Main findings
model arms (at baseline)

Statistically significant
a. One-to one home
outcomes included
based
Transaction Preparedness, improvements in
Hudson, psychoeducation a. 298
Model of competence, rewards, preparedness,
2014 b. Group home based b. 156
Stress and unmet needs, competence, positive
(11) psychoeducation c. 125
Coping psychological distress emotions, psychological
c. Group hospital based
wellbeing and reduction
psychoeducation
in unmet needs
Transaction Preparedness, mastery, Increase in caregiver
Hudson, Home based
Model of self-efficacy, rewards despite being
2005 psychoeducational 54
Stress and competence, rewards, immersed in challenging
(10) intervention
Coping anxiety circumstances
Significant decrease in
Transaction
Northouse, emotional distress,
Model of Web-based
2014 44 Emotional distress, QoL increase in QoL, and
Stress and psychoeducation
(21) perception of increased
Coping
benefits of caregiving.

Self- Psychological Significant improvement

Badr, 2015 Phone-based dyadic
determination 20 functioning, caregiver in depression, anxiety
(17) psychosocial intervention
theory burden and caregiver burden
Significant improvement
Competence, in preparedness,
Hudson,
Group home based preparedness, optimism, caregiving competence,
2008 NR 74
psychoeducation rewards, social support, caregiving rewards and
(23)
burden information needs in
caregivers.
Significant improvement
McLean, Marital functioning,
Emotionally focused in marital functioning
2008 NR 16 symptoms of depression,
couple Therapy and symptoms of
(15) and hopelessness
depression
Significant improvement
McLean, Marital functioning, in marital functioning,
Emotionally focused
2013 NR 22 depression, hopelessness, (similar to empirical
therapy
(16) and caregiver burden studies in non-cancer
literature)

Telephone based No statistically

Shaw, 2016 QoL, unmet supportive
NR supportive care 64 significant
(25) care needs
intervention improvements

Reduced existential
Meaning-centered
Applebaum, Meaning- N/A (case distress by exploration of
psychotherapy (group + Existential crisis
2015 (22) based coping study) critical sources of
individual)
meaning
26 Leone L Sutanto, Fiona M Ying, Arnav Agarwal et al.

Records identified through

database searching
(n = 157)
Identification

Additional records identified

through other sources
(n = 2)
Screening

Records screened
(n = 131)

Records excluded
(n = 114)
Eligibility

Full-text articles assessed

for eligibility
(n = 17)

Full-text articles excluded

(n = 8)
Included

Studies included in
analysis
(n = 9)
(n = 9)

Figure 1. PRISMA flow chart.

Couple-based interventions These findings were further substantiated by latter

studies by McLean and colleagues in 2013, where
Two studies were built upon couple-based 50% of intervention group caregivers had clinically
intervention models: one randomized controlled trial improved RDAS score, compared to 11% in control
and one pilot study (14, 15). The couple-based group (16). There were no significant changes in the
intervention was derived from the practice of improvement in RDAS score from T1 (immediately
emotionally focused therapy (EFT) delivered in 8 post-intervention) to T2 (3 month post-intervention)
sessions of structured couple therapy with the confers stability of the intervention effect (16) (see
intention of addressing the particular issues that Table 1).
challenge couples plagued with cancer (14). Results
from McLean and colleagues from their pilot study
revealed that subjects’ marital functioning, as Psychological interventions
measured by Revised Dyadic Adjustment Scale
(RDAS), demonstrated statistically significant One particular study examined the feasibility and
improvement, with 87.5% of couples showing some efficacy of a telephone-based dyadic psychosocial
improvement (0.5 – 5 points) or significant intervention. In this, Badr and colleagues highlighted
improvement (>5 points) in the RDAS score (15). the feasibility of such interventions, and their results
 Psychosocial interventions for informal caregivers 27

showed significant improvements in depression, Psycho-educational interventions

anxiety and caregiver burden in the intervention group
in comparison to usual medical care (17). In Five studies were reported that used various
measuring the Patient Reported Outcomes models of psycho-educational intervention delivery.
Measurement Information System (PROMIS), the Three studies used randomized controlled trial
intervention group showed a mean decrease of 4.95 designs, and two used a before-after design (10, 11,
points in depression, 5.3 points in anxiety and 2.95 23). These psycho-educational interventions were
points in caregiver burden domains. For caregivers delivered in either individual or group settings
with high depression levels (n = 23), 2 of the 11 in the (see Table 1).
control group showed improvement (i.e., their T-score Overall, psycho-educational interventions were
moved from >1 SD to <1SD), while 10 of the 12 from found to be useful in improving caregivers’ outcomes.
the intervention group improved (p = 0.01) (17) (see Hudson and colleagues reported that it is possible to
Table 1). increase caregiver rewards despite the challenging
circumstances by implementation of the intervention
(10). After intervention, caregivers reported higher
Web-based psychoeducation interventions levels of rewards (3.01 to 3.09) as measured by the
Rewards of Caregiving Scale, whereas those placed
Northouse and colleagues examined the feasibility of under standard experienced a decrease in experience
translating the FOCUS program, an efficacious nurse- of rewards (3.12 to 2.82) (10). These interventions
delivered, psycho-education program that was tested might also enhance the feasibility for health
in three prior randomized clinical trials (18-20), onto professionals to discuss emotive topics such as
a tailored web-based format. In a subsequent phase II impending death with caregivers without adverse
study, it was shown that significant decrease in effects. A latter intervention study by Hudson and
emotional distress, increase in QoL, and perceived colleagues in 2008 also demonstrated that a group
benefit of caregiving were observed (21). Emotional education program was accessible, applicable and
distress as measured by the 30-item Profile of Mood effective as reported by an overwhelming majority of
States (POMS) showed significant decrease in the participants (23). The measures analysis of
caregivers, with the mean score dropping from 58.4 to variance on measureable variables (social support –
54.3 (p < 0.05). QoL showed a change in similar amount/satisfaction, preparedness, competence, brief
magnitude, as measured with the Functional assessment scale for caregivers, rewards, outlook on
Assessment of Cancer Therapy (FACT-G), increasing life, family inventory of needs- importance/needs
from 85.8 to 88.3 (p < 0.05). Most participants met) was also performed. Multivariate effects within
were satisfied with the program usability, but groups was found for time, F (18, 142) = 4.37,
recommended more content (21) (see Table 1). P < 0.001). Rewards, for instance, increased from
23.11 to 25.41 post-intervention (23) (see Table 1).
Similarly, the Melbourne Family Support
Meaning-centered psychotherapy Program which outlines the rationale and pilot works
in the developing of a program of intervention
Only one study reported this model, where research has examined different methods of delivery
Applebaum and colleagues borrowed meaning- of the psychoeducation program. Their findings
centered psychotherapy from experience in other reported statistically significant outcomes, including
palliative contexts (22). The study showed significant improvements in family caregivers’ preparedness,
areas of growth in participants’ ability to explore competence, positive emotions, more favorable levels
critical sources of meaning (22). While the results of psychological wellbeing, and a reduction in unmet
were optimistic, the study was only a case study, and needs (11). General distress as assessed by the
future studies are needed to quantitatively evaluate the General Health Questionnaire (GHQ) in the post
efficacy of such intervention in an oncology context intervention groups of one of the pilot studies either
(see Table 1). fell (-0.15) or rose non-significantly (0.17) relative to
28 Leone L Sutanto, Fiona M Ying, Arnav Agarwal et al.

the control group, suggesting no substantial change in and they are generally well accepted by patients
distress levels (24) (see Table 1). and caregivers (28). While these preliminary
findings have been encouraging, further studies are
warranted to further evaluate the efficacy and target
Telephone-based supportive care interventions selection.
The findings of our scoping review should be
Shaw and colleagues (25) utilized the Family Connect interpreted recognizing several limitations. One
intervention, which comprised a series of standardized observation that is of note, is that a number of eligible
telephone calls to deliver primarily emotional caregivers refused to participate in at least one
supportive care. While caregivers showed fewer included study during their recruitment phase due to
concerns about financial issues and greater perceived lack of interest, or perhaps more importantly, because
family support, the intervention failed to demonstrate they “had too much going on” (17). Another study
statistically significant improvements in caregiver excluded caregivers of patients with more advanced
mental well-being (25) (see Table 1). staged cancers (21). These caregivers may potentially
suffer from greater caregiving burden and stress, and
therefore, may benefit more from the multiple models
of interventions. The exclusion of these caregivers
Discussion
from studies underestimate the benefit yielded from
Our scoping review summarizes the findings of interventional models in caregivers with greater
previous studies, and highlights the significant growth distress.
in the number of numbers of interventional studies on Outcomes assessed were also notably
caregivers’ psychosocial welfare and the increasing heterogeneous across studies, ranging from
recognition across many disciplines of healthcare in measurements of marital functioning (n =2), QoL
recent years (2, 6, 26). Consistent with previous (n =2), preparedness and rewards (n=3), and other
analyses, our findings seem to support the empirical aspects of emotional distress. Studies that had the
evidence suggesting that intervention models improve same primary outcomes also tended to differ in the
psychosocial welfare of caregivers of cancer palliative assessment tools used for objective quantification
patients in a number of domains. despite assessing the same outcomes (e.g., GHQ vs.
An earlier methodological attempts to synthesize FACT-G). These disparities impaired the degree to
the evidence in this area empirically concluded that which the findings of these studies could be compared
the study of effective modalities to provide and interpreted together. Nonetheless, there remains
psychosocial support to informal caregivers was still some degree of specificity of aims and outcomes in
in its infancy (27). While the scale of our review is these study designs.
more limited and our findings demonstrate significant
growth in the area, our findings by extrapolation still
concur with their initial conclusion. Conclusion
Nonetheless, it is encouraging to observe the
branching in terms of the variety of intervention Our review covers a wide spectrum of psychosocial
models and the theoretical frameworks they are built intervention and recent evidence evaluating their
upon. The transition of the medium of intervention efficacy in meeting informal caregiver needs. Overall,
delivery from individual or group settings to the evidence suggests a notable increase in the
electronic delivery could increase the feasibility and number and directionality of robust intervention
accessibility of these interventions by including those studies, with an expansion of range of models in
who are at higher risks and increasing the ease and relation to caregivers’ needs. Nevertheless, more
convenience of access, while simultaneously reducing interventional models and studies evaluating their
the resources needed. In fact, studies have suggested efficacy are warranted to assist health providers in
the feasibility of incorporation of interactive health addressing the needs of caregivers of cancer patients
communication technologies in such interventions, with reliable empirical evidence.