Cheng 2014 Stroke Family Caregivers and Stroke Survivors
description
Transcript of Cheng 2014 Stroke Family Caregivers and Stroke Survivors
Patient Education and Counseling 95 (2014) 30–44
Review
The effectiveness of psychosocial interventions for strokefamily caregivers and stroke survivors: A systematic reviewand meta-analysis§
Ho Yu Cheng *, Sek Ying Chair, Janita Pak-Chun Chau
The Nethersole School of Nursing, The Chinese University of Hong Kong, Hong Kong Special Administrative Region
Contents
1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2. Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2.1. Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2.2. Study selection and appraisal. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2.2.1. Population . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.2.2. Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.2.3. Comparison . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.2.4. Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.2.5. Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.2.6. Exclusion criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.3. Data extraction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.4. Data synthesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
3.1. Search results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
3.2. Methodological quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
A R T I C L E I N F O
Article history:
Received 23 August 2013
Received in revised form 17 December 2013
Accepted 7 January 2014
Keywords:
Stroke
Family caregivers
Psychosocial interventions
Systematic review
Meta-analysis
Physical health
Psychosocial wellbeing
Quality of life
A B S T R A C T
Objective: To evaluate the effectiveness of psychosocial interventions for family caregivers on their
psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke
survivors.
Methods: Electronic English and Chinese bibliographic databases were searched (inception to January
2012) for clinical trials. Two reviewers independently selected and appraised study quality. When
possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative
summary was used.
Results: Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of
two individual psychoeducation programs showed a small effect on improving family functioning (SMD:
�0.12; 95% CI: �0.23 to �0.01; p = 0.03). Caregivers receiving psychoeducation that aimed at equipping
caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more
positive influence on the caregivers’ psychosocial wellbeing and a reduced use of healthcare resources by
stroke survivors.
Conclusion: Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted
psychoeducation programs are needed to further examine the optimal dose and format.
Practical implications: To support caregivers across the stroke trajectory, the core skills of problem-
solving and stress-coping should be included in the psychosocial interventions.
� 2014 Elsevier Ireland Ltd. All rights reserved.
§
Contents lists available at ScienceDirect
Patient Education and Counseling
jo ur n al h o mep ag e: w ww .e lsev ier . co m / loc ate /p ated u co u
‘‘I confirm all the patient/person(s) have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of
the story.’’.
* Corresponding author at: The Nethersole School of Nursing, 8/F, Esther Lee Building, The Chinese University of Hong Kong, Shatin, N. T., Hong Kong Special Administrative
Region. Tel.: +852 3943 433; fax: +852 2603 5935.
E-mail addresses: [email protected], [email protected] (H.Y. Cheng).
0738-3991/$ – see front matter � 2014 Elsevier Ireland Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.pec.2014.01.005
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 31
3.3. Study characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
3.4. Details of the interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
3.4.1. Psychoeducation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
3.4.2. Social support group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.5. Effects of interventions on family caregivers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.5.1. Psychosocial wellbeing: burden . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.5.2. Psychosocial wellbeing: caregiving competency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.5.3. Psychosocial wellbeing: depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.5.4. Psychosocial wellbeing: anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
3.5.5. Psychosocial wellbeing: social support. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.5.6. Family functioning. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.5.7. Physical health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.5.8. Quality of life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.5.9. Intervention satisfaction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
3.6. Effects of interventions on stroke survivors: use of healthcare resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
4. Discussion and conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
4.1. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
4.2. Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
4.3. Practical implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
1. Introduction
Stroke is a major cause of disability worldwide. Its abrupt onsetand long-term neurological or cognitive impairments imposevarious challenges on the life situations of stroke survivors andtheir family members [1,2]. Stroke not only calls for readjustmentsin a caregiver’s life, but also requires modifications of theinterfamilial relationships [3].
The new role of being a stroke caregiver comes unexpectedly tothe family members [4]. The amount and duration of care, theresponsibility to stroke survivors, and the lack of time to devote totheir own health behaviors and social activities drain the physical,psychological and social resources of family caregivers [5], and alsoaffect their quality of life (QOL) [6]. The actual and perceivedimbalance between the demands of caregiving and the support forcaregivers is linked to psychological morbidities, including burden,psychological distress, and depressive symptomatology. Approxi-mately 30–68% of stroke family caregivers were found to haveanxiety or depressive symptoms [7,8]. In one study, the caregiversof stroke survivors were found to have higher levels of depressionand anxiety compared to caregivers of other neurological diseases[9]. The strain experienced by caregivers increases their risk ofcardiovascular diseases and their mortality risk by 23% and 63%,respectively, when compared with non-caregivers [10,11]. Thesenegative impacts on the caregivers’ wellbeing could result in thebreakdown of care and the institutionalization of stroke survivors,which imposes a substantial cost on healthcare systems [12,13].Thus, improving the family caregivers’ ability to provide quality ofcare without detriment to their own health, and empowering thefamily caregivers to have a life of their own are indispensable [14].
A meta-analysis of information provision interventions ofstroke knowledge and practical caregiving skills was found to havea small effect on improving the caregivers’ knowledge, but not ontheir psychological health [15]. Different types of psychosocialinterventions, such as counseling, psychoeducation or supportgroups, showed mixed effects on the psychological and socialaspects of caregivers in previous systematic reviews [16–18]. Arecent systematic review of eight studies of non-pharmacologicalinterventions for stroke family caregivers showed that psychoso-cial interventions had no significant effect on reducing thecaregivers’ strain and their level of depression [18]. Visser-Meileyet al. [17] also examined the effectiveness of interventions forstroke family caregivers and reported that counseling interven-tions appeared to have the most positive outcome on thecaregivers’ psychological health. Besides, Brereton et al. [16]
suggested that the teaching of problem-solving techniques and thetraining in caregiving skills could improve the caregivers’ QOL andwellbeing. However, the evidence was based on one to two studiesin these reviews. There was insufficient evidence on which optimalformat, type and essential components of the psychosocialinterventions should be provided to the stroke family caregivers.There was also no synthesized evidence of the effect on thecaregivers’ physical health [17,19], despite the fact that thepresence of psychological distress might contribute to a deterio-ration in the caregivers’ physical health [20].
Today, we are facing the challenge of the increasing prevalenceof stroke-related disability because of the growth of the agingpopulation and the prolonged life span [21]. Therefore, supportingthe needs of stroke family caregivers at the right time, right placeand in the right format throughout the transition of care is timely.The aim of this systematic review is to identify the best availableevidence related to the effectiveness and dose of caregiverpsychosocial interventions on the psychosocial wellbeing, physicalhealth and QOL of family caregivers, and the use of healthcareresources by the stroke survivors.
2. Methods
We followed the guidelines recommended by the Joanna BriggsInstitute when we conducted this review.
2.1. Search strategy
Clinical trials were searched from electronic English and Chinesebibliographic databases from their inception to January 2012, byusing title, abstracts, keywords, MeSH, and index terms (Table 1).Besides, a manual search of relevant journals, gray literatures, onlinedatabases search and websites was also performed. Reference listsand bibliographies of all relevant articles were also reviewed.Appendix A shows a typical searching strategy.
2.2. Study selection and appraisal
Two independent reviewers (HYC and SYC) screened the titlesof all identified papers for their relevance. If the title wasinconclusive, the abstracts or full texts of the study were retrievedfor further analysis. Both reviewers independently assessed allabstracts or full texts of the potential studies by using the studyeligibility verification form developed for this systematic review.Any discrepancies between the reviewers were resolved by
Table 1Data sources for the review.
Databases searched for English publicationAcademic Search Alumni Edition
Academic Search Premise
British Nursing Index and Archive
CINAHL Plus
ERIC
Controlled Clinical Trials Database
Cochrane Library
EMBASE
Global Health
Stroke Trials Registry (www.strokecenter.org)
Ovid MEDLINE1
PsycINFO
SCOPUS
Stroke Registry in Cochrane Stroke Group
Web of Science-with conference proceedings
Databases searched for Chinese publicationChina Journal Net
Chinese Biomedical Literature Database
Chinese Medical Current Content,
HyRead
Taiwan Electronic Periodical Services
WanFang Data
Databases searched for gray literature or unpublished studiesAgency for Healthcare Research and Quality,
Academic Archive On-line
Chinese Electronic in Thesis and Dissertation Service
Digital Dissertation Consortium
Gray Literature Report (via New York Academy of Medicine)
Index to Thesis
Lancashire Care Library and Information Service
MEDNAR
National Library of Medicine Gateway
Netting the Evidence
ProQuest Dissertation and Thesis
The Networked Digital Library of Theses and Dissertations
WanFang Data: Chinese Dissertation Database
Searching terms used(stroke* OR ((cerebrovascular OR cerebro vascular OR cerebral vascular OR
brain vascular) AND (accident* OR event* OR stroke* OR disorder* OR
disease* OR infarct OR apoplex*)) OR CVA OR apoplexy*)
AND (Caregiver* OR care giver* OR carer* OR ((family OR informal OR
primary OR spous*) AND (caregiver* OR carer* OR care giver*)))
AND (Psychotherap* OR counsel* OR cognitive therapy OR behavio?ral
therapy OR ((psychosocial OR cognit* OR behavio?r* OR cognitive
behavior?ral OR peer OR problem solving) AND (intervention* OR therap* OR
support* OR partnership*)))
AND (health OR quality of life OR depression* OR anxiety* ((physical OR
psychosocial OR psychological OR care* OR social) AND (wellbeing* OR
health* OR stress* OR strain* OR burden OR Burthen OR support OR
condition* OR network* OR competenc*))
Chinese search terms were based on the terminology used in Taiwan and
China, included: ‘‘ ’’ (cerebral stroke), ‘‘ ’’(stroke), ‘‘ / ’’
(cerebrovascular accident/diseases), ‘‘ ’’ (intervention), ‘‘ ’’
(primary caregiver), ‘‘ ’’(support), ‘‘ ’’ (psychological), ‘‘ ’’ (social
activities), ‘‘ / ’’ (quality of life), ‘‘ ’’ (family), ‘‘ ’’
(rehabilitation).
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–4432
discussion with the third reviewer (JPC). The eligible studiesshould have the following features:
2.2.1. Population
Adult patients (�18 years old) with a clinical diagnosis ofischemic or hemorrhagic stroke and who were community-dwelling with their family caregivers post-stroke. Adult familycaregivers (�18 years old) were the family members of strokesurvivors and they were the primary caregivers. In this review, the
primary caregiver was defined as the person who spent either themost time in providing care to stroke survivor or who wasidentified as such by the stroke survivor.
2.2.2. Intervention
In this review, ‘psychosocial interventions’ referred to thoseinterventions applying the cognitive, behavioral and/or socialmechanisms of action (e.g., counseling, psychoeducation, behav-ioral or cognitive interventions, social support group) [22] thataimed to improve the psychosocial and physical wellbeing ofcaregivers and the outcomes of stroke survivors. There was norestriction on the formats (individual, group, telephone or web-based), setting (hospital, home or community), duration andfrequency of intervention.
2.2.3. Comparison
The comparator group could either be ‘usual care’ or ‘withoutany active intervention’.
2.2.4. Outcomes
The primary outcomes of interest included (a) psychosocialwellbeing (specific outcomes of interest included but were notlimited to anxiety, depression, caregiving burden and strain,caregiving competency, and social support), (b) physical health,and (c) the QOL of family caregivers. The secondary outcomes ofinterest included family functioning, intervention satisfaction,hospital re-admissions, the placement to a residential or nursingcare home of the stroke survivors, outpatient service contacts bythe family caregivers and the stroke survivors.
2.2.5. Studies
The review included all experimental studies that allocatedparticipants randomly (RCTs) and those that were not trulyrandom in their allocation of participants (quasi-RCTs). Prospec-tive observational studies which observed the entire course ofpsychosocial interventions and the outcomes of participants werealso considered.
2.2.6. Exclusion criteria
(a) Interventions that were targeted exclusively on improvingpractical caregiving skills, for example, caregiver training on liftingand transferring skills [23], as the improvement in psychosocialwellbeing might be indirect, (b) interventions that provided purelystroke-related information to caregivers or focused on liaison withother services [24,25], (c) studies that described only thepsychosocial intervention of stroke family caregivers and withoutan analysis of the intervention outcome, (d) case studies, non-English and non-Chinese studies.
Two independent reviewers (HYC and SYC) assessed themethodological quality of all eligible studies by using The CriticalAppraisal Checklists from the Joanna Briggs Institute-MetaAnalysis of Statistical Assessment and Review Instrument (JBI-MAStARI) [26] for randomized and pseudo-randomized studies,cohort/case control studies, and descriptive/case series studies.Any disagreement was resolved through joint assessment anddiscussion with the third reviewer (JPC).
2.3. Data extraction
Two reviewers (HYC, JPC) independently extracted the precisedetails of the included study (e.g., the study’s setting and method;characteristics of participant and intervention; the outcomemeasures and the results) by using the modified version of theJBI-MAStARI data extraction form. Five potential articles were usedin pilot testing to ensure the consistency of data extraction. Whenthe studies were evaluating two interventions (e.g., education vs.
Citations ident ifi ed thro ugh databases sea rching (n = 8,039)
English citations: 7,332; Chinese citations: 707
Removal of duplica tes and irrelevant citations
(n = 7,884)
English citations: 7,199; Chinese citations: 685
Citation potential ly rele vant and ful l text retrieved (n = 155 )
English citation s: 133; Chinese citation s: 22
Addition al citations identifi ed from
references and bibliographies of retrie ved
full text (n = 12 English citations)Studies excluded due to irrele vance to the
systematic review (n = 125)
English citations: 114; Chinese citation s: 11
Ful l Text ass essed for eligib ility and appraisal of methodologic al
quality (n = 42 )
English citations: 3 1; Chinese citation s: 11
Stud ies included: 24 citations of 18 studies in English
No citations in Chinese
Studies excluded (n = 18)
English citations:
- No sub -group an alysis on stroke caregiver (n = 5)
- Insu fficient information on interven tion (n = 1)
- No publi cation ide ntified (n = 1)
Chinese citations:
- Insuffici ent infor mation on the type s and
componen ts of interven tion, the
socio-de mograph ic da ta of the parti cipants an d/ or
the method s of outcome measu remen ts (n = 1 0)
- No sub group an alysis on stroke c aregivers (n = 1)
Fig. 1. Flow diagram of study retrieval and selection.
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 33
counseling [27], and information provision vs. cognitive behavioralintervention [28]), only the data from counseling/cognitivebehavioral intervention and the no-treatment control groupswere extracted. Besides, if the study consisted of two controlgroups [29] (the attention-control group and the concurrentcontrol group), only the data from the attention-control groupwere extracted.
2.4. Data synthesis
The included studies were categorized in accordance with thetypes and formats of the interventions being conducted. Resultsfrom comparable groups of studies were pooled in a statisticalmeta-analysis using RevMan 5.1 [30]. In this review, an a prioriselection plan of outcome measures was used. The most commonlyused measure (e.g., the Caregiver Strain Index for caregiver burden)was selected for data synthesis when there was more than oneinstrument measuring the same outcome in order to minimize thepotential bias in selecting an outcome measure that achievedbetter results. For the Medical Outcome Short Form-36, if thecalculation of the physical component score and the mentalcomponent score was not possible [29,31], the domain scores ofphysical functioning and mental health were selected; this wasbecause they were the most valid measures of physical health andmental health, respectively [32]. For any missing data from thepublished reports, the principal investigators were contacted in anattempt to obtain the original data. No imputation of missingvalues was attempted in this review.
For the RCTs, the standardized mean difference or meandifference, and a 95% confidence interval (95% CI) were calculatedfor the summary effect of continuous data measured by differentscales and the same scale, respectively. Data from each RCT werepooled as appropriate by using a fixed effect model, except wheresubstantial heterogeneity existed according to the I2 statistic(I2 > 50%) [33]. When I2 > 50%, the studies were combined byusing random-effects meta-analysis models if the studies wereconsidered to be clinically similar. Otherwise, a narrative summarywas used.
3. Results
3.1. Search results
A total of 8039 English and Chinese citations were identifiedfrom the search (Fig. 1). Of these, the full texts of 155 potentiallyrelevant studies were retrieved for more detailed review. Twelvemore articles were identified and retrieved after reviewing thereference lists and bibliographies of the retrieved articles. A total of125 studies were excluded because they were irrelevant to thereview. Among the 42 studies which underwent a full assessmentof eligibility and appraisal of methodology, seven relevant studiespublished in English were excluded because there was noinformation of the intervention effects on the subgroup of strokeparticipants, and attempts made to contact the authors to seekfurther information were unsuccessful [34–40]. In addition, 11citations of eight studies published in Chinese were excluded [41–51] due to insufficient information on the design of interventionsand/or the methods of outcome measurement were provided.Thus, 24 articles of 18 studies that met the inclusion criteria wereincluded in this review.
Of these 18 included studies, we attempted to contact elevenauthors for further details on the outcome data and subgroupanalysis on stroke caregivers, of which four were not contactable[29,52–54]. For the remaining seven successful attempts, theauthors of three studies provided further details of their studies[55–57].
3.2. Methodological quality
The methodological quality of the 13 RCTs or quasi-RCTs issummarized in Table 2. Incomplete details on methods of randomassignment and lack of allocation concealment were the concernson the risk of selection bias among these studies. Besides,participants actually knew about their group allocation becausethey received active intervention when compared with theparticipants of the no-treatment control group [31,52,53,58–60]or the waitlist control group [61,62]. Thus, the blinding ofparticipants was not feasible among eight included randomizedstudies which caused concern about the risk of performance bias.In addition, detection bias may also be present because theevaluations of psychosocial outcomes in these studies were mainlysubjective and reported by the participants. There were only twostudies [29,53] which clearly stated the method of blinding to theassessor. The risk of attrition bias due to insufficient informationabout the missing data (including the number and reasons of drop-out of participants in the intervention group and the control group,the statistical method used in dealing with missing data) was alsonoted. On the other hand, two studies [29,54] employed anattention-control group, in which performance bias might beminimized. Also, two studies [61,62] adopted a waitlist controlgroup, so that the effects of delayed treatment and participantexpectancy could be investigated [63].
Of the remaining studies, two of them were non-RCTs [56,60],two were historical cohort studies [28,64], and one was a pre- andpost-test study [57]. The inclusion criteria were clearly stated ineach study, yet there was insufficient information related to thesample characteristics in relation to the study population andthe sample size calculation. Although these non-randomizedstudies imposed the risk of selection bias, the historical cohortstudies employed a matched cohort group to deal with theconfounding factors, such as age, gender and depression level.
Table 2Methodological quality of the 13 RCTs/quasi-RCTs according to the criteria of JBI critical appraisal (‘‘H’’ = ‘‘Yes’’; ‘‘�’’ = ‘‘No’’; ‘‘?’’ = ‘‘unclear’’).
Bakas
et al.
[54]
Clark
et al.
[52]
Draper
et al.
[61]
Evans
et al.
[27]
Forster and
Young [65]
Grant
et al.
[29]
Grasel
et al.
[58,75]
Hartke and
King [66]
Johnston
et al. [53]
Marsden
et al. [62]
Perrin
et al.
[67]
Pierce
et al.
[59]
Shyu
et al.
[55,31]
1. Was the assignment to
treatment group
truly random?
H H ? H H ? � ? H H H ? ?
2. Were participants
blinded to
treatment allocation?
H � � � � H � � � � � � ?
3. Was allocation to
treatment groups
concealed from
the allocator?
? H ? H H � � � ? H H � �
4. Were the outcomes of
people who withdrew
described and included
in the analysis?
� � � � � ? � � H H � � �
5. Were those assessing
outcome blind to the
treatment allocation?
? ? � H ? H ? ? H � ? ? �
6. Were the control and
treatment groups
comparable at entry?
H H H H H � H H H H ? H H
7. Were groups treated
identically other
than for the named
interventions?
? ? H ? H H H H ? H ? ? H
8. Were outcomes measured
in the same way for
all groups?
H H H H H H H H H � H ? H
9. Were outcomes measured
in a reliable way?
H ? ? ? ? H ? ? H ? ? ? H
10. Was appropriate
statistical analysis used?
H H H H H H H H ? H ? H H
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–4434
However, the reasons for selecting the confounders were notmentioned [28,64]. In addition, there was a risk of attrition biasamong these non-randomized studies, except for the study carriedout by van den Heuvel et al. [60], in which they conducted anintention-to-treat analysis which included participants who didnot complete the intervention. The overall inter-rater agreementbetween the two independent reviewers on the study appraisalwas good (Kappa statistic = 0.80).
3.3. Study characteristics
Eighteen studies involving 1723 family caregivers and 1836stroke survivors were included in this review. The important studycharacteristics are summarized in Table 3. Among these 18 studiesconducted between 1988 and 2010, six involved the participationof stroke survivors and family caregivers [52,53,56,60,62,65],whereas the remaining 12 studies involved the family caregiversonly.
Seven studies originated from North America[27,29,54,59,64,66,67], seven were from Europe [28,53,56–58,60,65], three were from Australia [52,61,62], and one was fromAsia [55]. The study settings varied from acute inpatient settings[55], home settings [27,29,52–54,56,59,65–67], community settings[28,60–62], and from inpatient to community settings [58,64].
The mean age of the caregivers ranged from 47.9 years [27] to71.3 years [52]. The majority of them were female and they werethe spouses of the stroke survivors, expect for the study of Shyuet al. (sons > daughters) [55]. The mean age of the stroke survivorsranged from 61.1 years [27] to 74.4 years [58], and 67% were male.For studies that considered the number of stroke episodes ofsurvivors, most of the stroke survivors were recovering from theirfirst stroke [28,53,55,56,59,60,62,65]. In addition, the time sinceonset of the stroke ranged from 17.57 days [55] to more than threeyears [60].
3.4. Details of the interventions
Of the 18 included studies, they were all multifaceted, and theyincluded information provision relating to stroke and its caregiv-ing. Sixteen studies were grouped as psychoeducation [27–29,52–56,58,60–62,64–67], which applies educational techniques andmethods in combination with psychotherapeutic strategies such ascounseling, to assist caregivers to understand the process of thedisease, as well as to acknowledge and cope with their emotionsand reactions [68]. The remaining two studies [57,59] were ofsocial support groups. No studies on the effects of psychodynamicinterventions for family stroke caregivers were identified. Table 4summarizes the type, format, conceptual framework and dose ofintervention of all the included studies.
3.4.1. Psychoeducation
Of 16 studies of psychoeducation, general information aboutstroke, its care, and its community resources were providedthrough the following means: an information package[29,52,54,60,64,65,67]; individual education (face-to-face interac-tion [55,56,62]; telephone contact [53]); or group education (class[27,28,58,61]; telephone conference [66]). Besides, two studies[55,58] also provided individual hands-on caregiving skill trainingto caregivers.
For the psychotherapeutic techniques, stress-coping andproblem-solving skills were commonly used in the psychoeduca-tion. Eight studies focused on enhancing stress-coping skills[52,53,55,58,60–62,66], five studies focused on improving prob-lem-solving abilities [27,29,56,65,67], whereas the remainingthree studies focused on both techniques [28,54,64]. Stress CopingTheory [69] and Cognitive Behavioral Theory [70] were the mostcommon theoretical underpinnings of psychoeducation [27–29,53,54,60,64,66]. Overall, there was no exact match betweenthe duration and dosage of the intervention.
Table 3Characteristics of the included studies.
Study
(Year/Country)
Study setting/
Type of study
Participants/
Intervention provider
Interventions Outcome measure
(a) short-term follow-up
(b) long-term follow-up
Treatment group Control group
Psychoeducation (individual format)Bakas et al. [54,73]
(2009/USA)
Home/
RCT
Caregivers (mean age
57.1; female: 72.5%;
spouse: 57.5%)/
Nurse
Telephone psychoeducation (N = 21)- Information provision: TASK notebook: 38
written tip sheets on five areas of skill building, a
stress management workbook and a brochure on
family caregiving from the American Stroke
Association
- Telephone contact: 8 weekly calls by a nurse to:
(1) facilitate caregiver’s weekly assessment of
skill needs using the CNCC (2) provided
individualized interventions that addressed
priority skill needs identified by the caregivers
Attention-controlgroup (N = 19) and
a brochure on
family caregiving
from the American
Stroke Association
(a) Outcomes measured
immediately, 1-month post-
intervention
Caregivers:Burden (Task difficulty
subscale of OCBS, Appraisal of
Caregiving Threat Subscale),
Depression (PHQ-9),
Intervention satisfaction
(self-developed rating form)
Bjorkdahl et al. [56]
(2007/Sweden)
Home/
Sub-study nested
in a larger RCT
Caregivers (spouse: 94%)
and stroke survivors
(median age: 53; male:
83.3%)/
Physiotherapist and
occupational therapist
Home-based psychoeducation and physicalrehabilitation training (N = 17)- Counseling: information provision related to
stroke, its consequences and how to deal with
problems commonly experienced by caregivers
and patients
- Physical Rehabilitation Training: a top-down
approach of individually tailored training based
on patients’ needs and desire, focus the activities
in the natural context
Usual care: (N = 15)Physical
Rehabilitation
Training
(a) Outcomes measured
immediately post-
intervention
Caregivers: Caregiver burden
(CBS)
Clark et al. [52]
(2003/Australia)
Home/
RCT
Caregivers (mean age:
70.3; female: 61.3%;
spouse: 100%) and stroke
survivors (mean age: 72.3
and/
Social worker
Family-based psychoeducation (N = 32)- Information package related general
information on stroke and its consequences,
measures for reducing the risk of further stroke,
practical coping suggestions, community services
and support structures
- Structured but not standardized family
counseling on stroke-related stresses during
home visit: Advising how to obtain appropriate
assistance and reinforcing the information from
the package
No-treatmentcontrol (N = 30)
(a) Outcomes measured
immediately post-
intervention
Caregivers: Family
functioning (FAD), QOL (SF-
36)
Forster and Young [65]
(1996/UK)
Home/
RCT
Caregiver and stroke
survivors (age: median:
73; male: 52.9%)/
Specialist nurse
Home-based psychoeducation (N = 120)- Information pack: detailed lists of locally
available services booklets published by the
Stroke Association and information on benefits
was given to patients and families in the first visit
- Six home-based counseling: included (1) goal
setting, (2) problem-solving, (3) advice on social
support, benefits, driving and holiday, (4) reviews
of patients’ needs, (5) providing information and
support to improve patients’ satisfaction and
relief for caregivers (6) review of progress.
- In addition to usual treatment
Usual care(N = 120)
(a) Outcome measured
immediately post-
intervention
Caregivers: Distress (GHQ-
28)
Grant et al. [29]
(2002/USA)
Home/
RCT
Caregivers (female: 90.5%;
spouse: 39.5%)/
Nurse
Social problem-solving telephone partnership- One face-to-face session at home and taught to
use positive problem orientation and 4
systematic steps in solving care-giving problems.
Application of the social problem-solving skills to
problem of safety and 2 additional problems
identified by the caregivers
- Eight telephone contact for developing and
maintaining the skill
Attention-controlgroup
(a) Outcome measured
immediately post-
intervention
Caregivers:Competency (Preparedness
for Caregiving Scale), Burden
(difficultly subscale of the
CBS), Depression (CES-D),
QOL (SF-36), Intervention
satisfaction (Client
satisfaction questionnaire)
Johnston et al. [53]
(2007/UK)
Home/
RCT
Caregivers (mean age:
61.7; female: 65.6%) and
stroke survivors (mean
age: 69.0; male: 61.1%)/
Nurse
Workbook-based behavioral intervention(N = 75)- Workbook contained information related to
stroke and recovery, guidance on coping skills
and self-management instructions which was
drew on cognitive behavioral techniques; diary
sheets; an audio relaxation cassette tape that
describes simple body relaxation and breathing
exercises
- Five contacts by workbook implementer to
present the workbook and instruction in its use,
answer questions, provide encouragement, offer
more information on stroke risk factors, monitor
goals and achievement, provide encouragement,
and record the number of completed quizzes and
tasks, diary days and set goals
No-treatmentcontrol (N = 85)
(a) Outcomes measured
immediately and 4-months
post-intervention
Caregivers: Competency
(RLOC), Intervention
satisfaction (10-point rating
scale)
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 35
Table 3 (Continued )
Study
(Year/Country)
Study setting/
Type of study
Participants/
Intervention provider
Interventions Outcome measure
(a) short-term follow-up
(b) long-term follow-up
Treatment group Control group
King et al. [64]
(2007/USA)
Inpatient to community/
Historical cohort design
Caregivers (mean age
62.5; female: 66.7%;
spouse: 3.3%)/
Nurse
Caregiver Problem-solving intervention(N = 15)- Combination of problem-solving (problem
orientation and problem-solving skill) and
cognitive behavioral techniques (relaxation
training, reframing negative thoughts)
- A manual containing the contents of each
session and exercises to tailor the content to each
caregiver and a stress management booklet was
given to caregivers
- In each session: participants identified their
most difficult problem with the counselor and
developed plans to solve them using the problem-
solving steps
- Home assignments e.g., apply problem-solving
to problems, rating their mood, and practicing
relaxation
Historical cohortgroup (N = 15)matched on
baseline CES-D
score, gender, age,
race and caregiving
relationship)
(a) Outcome measured
immediately and at 2-months
post-intervention
Caregivers:Anxiety (tension anxiety
subscale of Profile Mood Scale
short form), Burden
(difficulty subscale of CBS),
Intervention satisfaction
(Self-developed measure),
Competency (Caregiver
Competency and Confidence
Scale, Preparation for
Caregiving Scale)
Perrin et al. [67]
(2010/USA)
Home/
RCT
Caregivers (mean age:
58.5; female: 91.8%;
spouse:
70.5%)/
A master level
physiotherapist or a
doctoral-level nurse
practitioner
Telephone psychoeducation- Providing information about stroke, stroke
caregiving, and an overview of the recovery
experiences of individuals post-stroke and
common experience of stroke
- Review of current caregivers’ issues related to
the stroke survivors’ recovery and caregiver tasks
and activities
- Refer caregivers to the relevant guidebook
section and engage in supportive problem-
solving
Usual care (a) Outcomes measured
immediately post-
intervention
Caregivers:Burden (CSI), Depression
(CES-D), Intervention
satisfaction
Shyu et al. [31,55]
(2010, 2008/Taiwan)
Acute inpatient setting/
Cluster RCT
Caregivers (mean age:
47.8; female: 60.8%;
children: 41.1%)/
Nurses
Caregiver-oriented discharge planning andcounseling: (N = 72)- Provide information and skill training focused
on health education and caregiving task at home
in the individualized intervention and counseling
aimed at improving ability of caregiver to balance
competing needs before patient was discharged
- In addition with usual care
Usual care (N = 86) (a) Outcomes measured at
immediately, 2-months and
5-months post-intervention
Caregivers:Competency (Preparedness
for caregiving scale-
caregivers perspective),
Burden (Competing Needs
Scale), Intervention
satisfaction (caregiver
discharge needs satisfaction
scale)
(b) Outcomes measured at
11-months post-intervention
Caregivers: QOL (SF-36)
Psychoeducation (group format)Draper et al. [61]
(2007/Australia)
Outpatient or
day hospital/
RCT
Caregivers (mean age:
62.5)/
Speech therapist, social
worker and clinical
psychologist
Group psychoeducation (N = 17)- 6–11 caregivers/group
- Each session involved an element of education
and support, skill training, stress management
and group dynamics
- Cover impact of stroke, managing the resulting
life changes, communication strategies,
relaxation and stress management, managing
emotions, accessing community service and
relapse prevention strategies
- Caregivers were encouraged to join a self-help
group after the intervention
Waitlist control(N = 11)
(a) Outcomes measured
immediately, 3-months post-
intervention of experimental
and waitlist control group
Caregivers: Distress (GHQ-
28), Burden (Relative Stress
Scale)
Hartke and King [66]
(2003/USA)
Home/
RCT
Caregivers (mean age:
69.7; female: 76.1%;
spouse: 100%)/
Nurse, social worker or
psychologists
Telephone group psychoeducation (N = 43)- Topics of discussion: ‘Facts about stroke and
caregiving’, ‘Communicating with your spouse’,
‘Dealing with your spouse’s problematic feelings
and behavior’, ‘Your stress as a caregiver’, ‘Taking
care of yourself as a caregiver’, ‘Resources for you
in the community as a caregiver’
- An audiotape of a relaxation procedure and a
publication on stress management were given to
participants. A list of the stressful problems in
caregiving that participant had identified was
given during the initial assessment
- Peer support was emphasized
No-treatmentcontrol (N = 45)
(a) Outcomes measured
immediately and 4-months
post-intervention
Caregivers: Burden (Burden
Interview, Pressing Problem
Index), Depression (CES-D)
Competency (Caregiver
Competency Scale)
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–4436
Table 3 (Continued )
Study
(Year/Country)
Study setting/
Type of study
Participants/
Intervention provider
Interventions Outcome measure
(a) short-term follow-up
(b) long-term follow-up
Treatment group Control group
Marsden et al. [62]
(2010/Australia)
Community/
RCT
Caregivers (mean age:
68.0; female: 88.2%;
spouse: 82.4%) and stroke
survivors (mean age:
71.6; male: 76.0%) and/
Multi-disciplinary team
CLASSiC program (N = 9) consisted of 3 parts:
1 h physical activity training on lower limb
functional task, strength training and balance
training
1/2 h ‘healthy option’ morning tea for teaching on
healthy eating, to share recipes, and engage in a
social activity
1 h psychoeducation about health-related goal
setting, secondary prevention of stroke,
management of fatigue and stress, relaxation
activity, memory and talking to a health
professional. A separate session was organized by
a social worker for caregivers to vent their
feelings and discuss issues related to being carers
Waitlist controlgroup (N = 8)
(a) Outcomes measured
immediately and at 3-months
post-intervention
Caregivers: Physical
functioning (6-min walk test,
Timed Up and Go), Burden
(CSI), QOL (Health Impact
Scale)
Wilz and Barskova [28]
(2007/Germany)
Community/
Historical cohort design
Caregivers (mean age:
62.1; female: 73.0%;
spouse/partner: 100%)/
Clinical
psychologist � public
nurse
Cognitive behavioral intervention group(N = 38)- Each group with 4–8 spouses
- Four main goals: expressing emotions and social
sharing; comprehension and acceptance of a
changed post-stroke life situation; improving
competence in active problem-solving;
encouraging healthy behavior: learning of
relaxation techniques, awareness of own burden,
acceptance of relief through professional support
Historical cohortgroup (N = 51)- matching on
selection criteria,
time points, and
measurement
instruments
Outcomes measured (a)
immediately and (b) at 6-
months post-intervention
Caregivers: Anxiety (BAI),
Depression (BDI), QOL (World
Health Organization Quality
of Life Questionnaire-BREF)
Psychoeducation (mixed format)Evan et al. [27]
(1988/USA)
Inpatient to home/
RCT
Caregivers (mean age:
49.3; female: 90.3%;)/
Occupational therapist
and social worker
Inpatient group education and individualoutpatient counseling (N = 61)- Two sessions of group education: (1)
Lecture + video tape ‘‘living with stroke’’ (basic
information about the consequence of stroke); (2)
Explained treatment unique to family’s situation
and respond to questions
- Seven sessions of individual counseling: To
apply the knowledge learnt in the class, to
develop coping and problem-solving strategies
post-discharge
Usual care (N = 63) Outcomes measured at (a) 1–
2 months and (b) 7–8 months
post-intervention
Caregivers: Family
functioning (FAD), Use of
social resources (ESCROW
profile)
Grasel et al. [58,75]
(2005, 2006/Germany)
In-patient setting
to community/
Quasi RCT
Caregivers (mean age:
59.6; female: 74.2%;
spouse: 71%)/
Not mentioned
Intensified transition support: (N = 33)- Psychoeducation seminar: information giving
related to caregiving at home, burden and
outpatient service care, self- help group
- Individual bedside caregiving skill training
- Therapeutic weekend care: home leave before
discharge to allow the family caregiver to show
their competence in caregiving and to receive
assistance in checking to what extent adaptation
of the home environment was necessary
- Telephone follow-up: providing assistance if
problem had arisen
- In addition with usual care
Usual care (N = 29) (a) Outcomes measured
immediately and 3-months
post-intervention
Caregivers: Burden (Burden
Scale for Family Caregivers),
Depression (Zerssen
Depression Scale), Somatic
complaint (Short version of
Giessen Symptom List)
(b) Outcome measured at 28-
months post-intervention
Stroke survivors: Use of social
resources (readmission or
deterioration of general
condition, use of outpatient
care service, institutionalized
to nursing home)
van den Heuvel et al.
(2000, 2002) [60,72]
Schure et al. (2006) [74]
Netherland/
Community/
non-RCT
Group program:Caregiver only (mean age:
66.4; female: 74.5%);
Individual home visits:Caregiver (mean age:
63.2; female: 71.7%) and
stroke survivors (male:
71.7%)/
Nurses
Information pack + individual (N = 60) or group(N = 110) psychoeducation- Information pack: information material
compiled by the stroke patient association
- Individual or group psychoeducation: same
content (use of education and counseling
strategies for helping family caregivers to deal
with emotional and practical problems of
caregiving, active coping and problem-solving
skills)
For group program: telephone network between
caregivers were developed
For home visit: patient was not present at the
session that dealt with problems experienced by
caregivers in caring for the patient and patient’s
behavior
No-treatmentcontrol (N = 42)
(a, b) Outcomes measured at
1-month and 7-months post-
intervention
Caregivers: Burden (CSI),
Competency (instrument for
confidence of knowledge and
perception of self-efficacy),
Social support (Adapted
version of Social Support List-
interaction, discrepancy),
Intervention satisfaction
(mechanisms of change
questionnaire)
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 37
Table 3 (Continued )
Study
(Year/Country)
Study setting/
Type of study
Participants/
Intervention provider
Interventions Outcome measure
(a) short-term follow-up
(b) long-term follow-up
Treatment group Control group
Social support groupsPierce et al. (2009) [59]
Steiner et al. [71] (2008)
USA/
Home/
RCT
Caregivers (mean age
54.5; female: 75.3%;
spouse: 68.5%)/
Nurse and assistance from
rehabilitation team
(therapists, pharmacist,
dietitian, social worker
and physician)
Caring�Web: (N = 36)-Web-based education and support in home
settings
- Four interrelated components:
1) linked web-sites about stroke and caring
2) customized educational information or tips
specific to caregivers’ needs
3) an email forum to ask a nurse specialist and a
rehabilitation team (therapists, pharmacist,
dietitian, social worker and physician) any
questions in private
4) a non-structured email discussion amongst all
participants facilitated by the nurse
No-treatmentcontrol (N = 37)
(a) Outcome measured
immediately post-
intervention
Caregivers:Perceived health status (5-
point Likert scale),
Depression (CES-D), Social
support (emotional support
and physical help from family
members or friends).
Stroke survivors:
Use of social resources
(number of hospital
readmissions, visits to
emergency department,
institutionalized to nursing
home)
Torp et al. [57]
(2008/Norway)
Home/
Pre- and post-test design
Caregivers (mean age:
74.4; female: 42.9%;
spouse/partner: 100%)/
Nurse
Web-based social support group- Computer-based information provision on
topics of stroke, care for patients, nutrition and
social services
- 3-h training on the use of internet several
months after the commencement of intervention
- Online discussion forum: direct visual and
verbal contact with each other using videophone
- Telephone contacts with nurses via videophone
or telephone in answering question related to
caring situation or the use of ICT
- Social group gathering: formal meeting on every
alternate month with an agenda directing
discussion about the progress of the project and
suggestions for future improvement; lectures by
professionals on the topics of interest to the
caregivers
Not applicable (a) Outcomes measured
immediately post-
intervention
Caregiver: Burden (Relative
Stress Scale), Distress (GHQ-
20), Social functioning
(Family and Friendship
contacts scale)
BAI: Beck Anxiety Inventory; BDI: Beck Depression Inventory; CBS: Caregiver Burden Scale; CES-D: Center for Epidemiological studies depression; CSI: Caregiver Strain Index;
FAD: McMaster Family Assessment Device; GHQ-20: 20-item General Health Questionnaire; GHQ-28: 28-item General Health Questionnaire; NHP: Nottingham Health
Profile; PHQ-9: Patient Health Questionnaire-9; OCBS: Oberst Caregiving Burden Scale; QOL: Quality of Life; RCT: Randomized control trial; RLOC: Recovery Locus of Control;
RSS: The Relative’s Stress Scale; SF-36: Short Form 36 Health survey Questionnaire.
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–4438
3.4.2. Social support group
The two studies of social support group [57,59] were conductedthrough the use of videophone and Internet with differentconceptual underpinnings. In addition, with the stroke informationprovision via the Internet or computer, both studies promoted thesharing of experiences and feelings between participants throughonline discussion forums facilitated by nurses. Besides, Torp et al.[57] also included a face-to-face caregiver group gathering.
3.5. Effects of interventions on family caregivers
Data of seven RCTs was sufficiently reported and was pooled inmeta-analyses [27,52,53,58,61,62,66]. For the remaining studies,narrative summaries of the findings are presented.
3.5.1. Psychosocial wellbeing: burden
Twelve studies (individual psychoeducation: seven [29,54–56,60,64,67]; group psychoeducation: four [58,61,62,66]; socialsupport group: one [57]) investigated the effects on the caregivers’burden. The pooled analysis of three studies of group psychoe-ducation [58,62,66], where sufficient data were available, demon-strated a small but not significant effect on reducing the caregivers’burden (SMD: 0.18, 95% CI: �0.13 to 0.48, p = 0.25) (Fig. 2). Inaddition, five studies of individual psychoeducation and one studyof group psychoeducation [61] showed that the level of burden ofthe caregivers in the intervention group was similar to that in thecontrol group [29,54–56,64].
In the study of the social support group, caregivers had asignificant reduction of their burden level when compared withtheir baseline data [57]. Also, the caregivers who receivedproblem-solving skill training via telephone contacts experienceda significantly lower level of burden when compared with thecaregivers in the control group [67].
3.5.2. Psychosocial wellbeing: caregiving competency
Caregiving competency refers to the self-perceived adequacy ofown performance as a caregiver in this review. Six studies ofpsychoeducation (individual format: four [29,53,55,64]; groupformat: two [60,66]) investigated the immediate post-interventioneffect upon it. The two studies included in the pooled analysisshowed no beneficial effect on improving caregiving competency(SMD: �0.09, 95% CI: �0.49 to 0.31, p = 0.12) (Fig. 3).
Of the remaining studies, three out of the four studiesdemonstrated significant effects on improving the caregivingcompetency of family caregivers [29,60,64]. The duration of thesesinterventions lasted for two to three months, and aimed to equipcaregivers with stress-coping strategies and problem-solvingskills.
3.5.3. Psychosocial wellbeing: depression
Eleven studies (individual psychoeducation: six[29,53,54,64,65,67]; group psychoeducation: four [28,58,61,66];social support group: one [59]) investigated the effects ondepression. Sufficient information was available in three studies
Table 4Type, dose and conceptual framework of the psychosocial intervention.
Authors Approaches Format Conceptual
framework
Intervention time Intervention dose
(minutes/sessions/interval)
PsychoeducationBjorkdahl et al. [56] Face-to-face Individual Not mentioned 180 min/session, 3 sessions/week for 3 weeks 180 min/session/week
Clark et al. [52] Face-to-face Individual
family
Family System
Theory
60 min/session, 3 sessions in 5 months 9 min/session/week
Draper et al. [61] Face-to-face Group Not mentioned 120 min/session, 4 sessions in 4 weeks 120 min/session/week
Evan et al. [27] Face-to-face Mixed Cognitive
Behavioral Theory
2 group education sessions and 7 individual
psychoeducational sessions/from 3 weeks of
hospitalization to 3-months post discharge
Insufficient information
Forster and Young [65] Face-to-face Individual Not mentioned 7 home visits within 12 months Insufficient information
Marsden et al. [62] Face-to-face Group Not mentioned 150 min/session, 7 sessions in 7 weeks 150 min/session/week
Bakas et al. [54,73] Telephone Individual Lazarus’s
Transaction
Theory of stress
1 call/week, 8 calls in 8 weeks (average:
236.8 min in 8 calls)
29.6 min/session/week
Grant et al. [29] Telephone Individual Social Problem-
Solving Theory
1� 3 h home visit before hospital discharge
8 telephone calls post discharge: 1st month:
weekly
2nd and 3rd month: bi-weekly
Insufficient information
Hartke and King [66] Telephone Group Stress Coping
Theory
60 min/session, 8 sessions in 8 weeks 60 min/session/week
King et al. [64] Telephone Individual Social Problem-
Solving Theory and
Cognitive
Behavioral
Theory
Each session: 45–60 min
During inpatient period: 2–3 in-person
sessions
Post-discharge: 7–8 weekly telephone
sessions
Telephone sessions:
45–60 min/session/week
Grasel et al. [58,75] Face-to-face and
telephone contact
Mixed Not mentioned 1� 1-h psychoeducation seminar
3 � 45–60 min individual training course
1� therapeutic weekend care
1� telephone follow-up at 3rd month
post discharge
From hospitalization to 3rd month post
discharge
Insufficient information
Johnston et al. [53] Face-to-face and
telephone contact
Individual Behavioral Theory 3 home visits and 2 telephone contacts
over 5 weeks
Insufficient information
Perrin et al. [67] Face-to-face and
telephone
Individual Not mentioned Prior to discharge: 25 min individual
interview
Post-discharge:1st and 2nd week: 30 mins/videophone call,
one phone call/week
4th to 6th week: 30 min/videophone call, one
call/2 weeks
Telephone sessions:
20 min/session/week
Shyu et al. [31,55] Face-to-face and
telephone contact
Individual Transitions
Theory
Face-to-face education(30 min/4–5 sessions/inpatient period)
Counseling(telephone: 30–45 mins/1 session/1st week of
discharge)
(home visit: 30–60 mins/2 sessions/every
2 weeks)
Insufficient information
van den Heuvel
et al. [60,72]
Face-to-face Individual
or group
Stress Coping
Theory
Home visit: 120 min/session, 4 sessions in
8 weeks
Group support: 120 min/session, 8 sessions in
8 weeks
Home visit: 60 min/session/
week
Group support: 120 min/
session/week
Wilz and Barskova [28] Face-to-face Group Cognitive
Behavioral
Theory
90 min/session, 2 session/month, 15 sessions
in 7 months
45 min/session/week
Social Support GroupPierce et al. [59] Web-based Group Friedman’s
Framework
of Systematic
Organization
Duration: 12 months, the use of internet was
in accordance with the participants’ needs,
average 1–2 h/week
Insufficient information
Torp et al. [57] Web-based,
videophone and
face-to-face
Group Temporal Model of
Family Caring
Duration: 12 months
Social support group: monthly face-to-face
meeting
Frequency of the use of internet is not
mentioned
Insufficient information
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 39
of group psychoeducation [58,61,66] for a pooled analysis, and itdemonstrated a small but not significant effect on reducing thelevel of depression (SMD: 0.19, 95% CI: �0.11 to 0.48, p = 0.22)(Fig. 4).
Of the remaining studies, psychoeducation that aimed atequipping the caregivers with problem-solving skills and stress-coping techniques reduced the caregivers’ depression level
significantly [28,29,64]. Caregivers participating in the socialsupport group have a similar level of depression with those in thecontrol group [59].
3.5.4. Psychosocial wellbeing: anxiety
Three studies of psychoeducation (individual format: two[53,64]; group: one [28]) reported the anxiety level of caregivers.
Fig. 2. Forest plot of studies of group psychoeducation reporting caregiver burden immediately post-intervention.
Fig. 3. Forest plot of studies of psychoeducation reporting caregiving competence immediately post-intervention.
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–4440
Although the anxiety level of the caregivers in the interventiongroup was reduced, the difference did not reach a statisticalsignificance when compared to the caregivers in the control group[28,53].
3.5.5. Psychosocial wellbeing: social support
Three studies (group psychoeducation: one [60]; social supportgroup: two [57,71]) included social support as their outcomes. Theimmediate post-intervention effects on improving the socialsupport of caregivers were not significant. However, the face-to-face psychoeducation conducted in a group format demonstrated abeneficial effect on the seeking of and the satisfaction with socialsupport at 7-months post-intervention [72].
3.5.6. Family functioning
The pooled analysis of individual face-to-face psychoeducation[27,52] showed that there was a very small effect on improvingfamily functioning (SMD: �0.12, 95% CI: �0.23 to �0.01, p = 0.03)(Fig. 5). The intervention dose could not be determined becausethere was insufficient information about the duration of each
Fig. 4. Forest plot of studies of psychoeducation repo
Fig. 5. Forest plot of studies of psychoedu
session in Evan et al.’s study [27]. The whole intervention durationranged from seven sessions in three months [27] to three sessionsin five months [52].
3.5.7. Physical health
The psychosocial interventions did not show any effect onimproving the caregivers’ physical health (perceived health statusand somatic complaints) [29,31,54,58,60,71]. Psychoeducationwhich included three sessions of bedside caregiving skill training[31,58] also showed no significant effect on reducing thecaregivers’ somatic complaints.
3.5.8. Quality of life
The short-term effects both of individual psychoeducation[29,31,52] and group psychoeducation [28,62] on improving thephysical, psychological and social domains of QOL were notsignificant. However, a significant improvement in the caregivers’psychological and social domains of QOL was found in the grouppsychoeducation conducted via face-to-face interaction at6-months post-intervention [28], whereas no significant beneficial
rting depression immediately post-intervention.
cation reporting family functioning.
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 41
effects were found in the individual psychoeducation at 11-months post-intervention [31].
3.5.9. Intervention satisfaction
Caregivers in the psychoeducation group were more satisfiedthan those in the control group [29,73,74]. Caregivers rated theintervention as helpful irrespective of whether it was conductedindividually or in a group. Besides, group psychoeducation wasperceived as more helpful in the emotional support andinformational support than individual psychoeducation(p < 0.01) [74].
3.6. Effects of interventions on stroke survivors: use of healthcare
resources
Individual studies of psychoeducation and the social supportgroup demonstrated a significant effect on the survivors’ use ofhealthcare resources. For the short-term effects (within 6-monthspost-intervention), the stroke survivors in the social support group[59] had significantly fewer hospital readmissions (66%) than thosein the control group (p < 0.01). Also, significantly fewer strokesurvivors in the group psychoeducation visited the physicians at 3-months post-intervention (p < 0.01) [58], and fewer strokesurvivors in the social support group visited the emergencydepartment within the 12-months of intervention (p < 0.01) [59].However, neither the psychoeducation in individual format [31]and group format [75] nor the social support group [59] couldsignificantly reduce the number of placements in a residential ornursing care home of stroke survivors.
Two studies of psychoeducation examined the long-termeffects on the use of healthcare resources [31,75]. Stroke survivorsin the individual psychoeducation group had significantly fewerplacements in a residential or nursing care home (p = 0.03) at 11-months post-intervention [31], and also more stroke survivors inthe group psychoeducation remained at home, when comparedwith the control group (p = 0.04) at 2-years post-intervention[75]. Although there were fewer hospital readmissions amongstroke survivors of the individual psychoeducation group, thedifference was not statistically significant at 1-year post-intervention [31].
4. Discussion and conclusion
4.1. Discussion
Stroke is a family disease, and the breakdown of functioningof the individual family member can extend to the whole family[76]. This systematic review aims to evaluate the effects ofdifferent types and doses of psychosocial interventions inenhancing the psychosocial and physical wellbeing, as well asin evaluating the QOL of family caregivers and the use ofhealthcare resources by stroke survivors. This is the firstsystematic review to investigate the effect on the caregivers’physical health, including somatic complaints (e.g., pain, head-aches, exhaustion, heart complaints, and stomach complaints),and the effects on stroke survivors, as reported in studiespublished in English and Chinese.
In this review, synthesized evidence shows that equippingcaregivers with problem-solving skills and stress-coping strate-gies via face-to-face psychoeducation had a small beneficialeffect on the caregivers’ family functioning, as measured by theself-reported McMaster Family Assessment Device [77]. Besides,the significant reduction of the caregivers’ depression level byproblem-solving training that was underpinned by SocialProblem Solving Theory [78] also concurred with the previousreview [79]. One of the objectives of supporting family
caregivers was to reduce the use of healthcare resources bystroke survivors, but only limited studies examined this outcome[31,58,59,74]. The effect of psychosocial interventions withongoing support via telephone [31] or Internet [59] on reducingthe number of hospital readmission was encouraging. It isbelieved that the ongoing supports helped the caregivers indecision-making so that minor health issues could be dealt withbefore becoming major healthcare crises. Moreover, psychoe-ducation that was composed of stress-coping skill training andbedside caregiving skill training during the hospital stay ofstroke survivors appeared to have a partial benefit on remainingthe stroke survivors at home [31,74].
Similar to the results of the previous reviews, which looked atthe effects on the stroke family caregivers’ psychosocialwellbeing and QOL [16–18], the social and emotional cost onfamily caregivers exacted by caregiving did not appear to beminimized either by psychoeducation or by a social supportgroup alone. In addition, this review found no significant effectof psychosocial interventions on improving the caregivers’physical health. Concurring with the systematic reviews ofinterventions for family caregivers of dementia [80] andterminal illnesses [81], it was found that it was difficult toalleviate the burden imposed on caregivers by means ofpsychosocial interventions. The multi-dimensionality of care-giver burden, including physical, emotional, social and financialaspects, presents a great challenge for healthcare professions insupporting family caregivers. The highly individualized psycho-social intervention for stroke family caregivers increases theclinical heterogeneity among the included studies [82]. In orderto achieve the power of the synthesized evidence, the meta-analyses were performed in accordance with the format ofdelivery and it specific components. This might explain why nosignificant improvement in the caregivers’ mental health wasfound in this review, whereas a significant beneficial effect wasshown in another meta-analysis that pooled the results fromeducation groups and support groups together [83].
The total duration of psychosocial interventions ranged fromthree weeks [56] to seven months [28], with the average contacttime with participants ranging from 2.42 h [67] to 104 h [59].Although the effect of the intervention dose could not be analyzedowing to insufficient information from the included studies, thisreview suggests a 3-months psychoeducation with eight sessionsmight improve the caregivers’ family functioning, psychologicalwellbeing and sense of competence, and also enhance the chanceof the stroke survivors remaining at home. For the delivery ofpsychosocial interventions, in addition to traditional face-to-faceinteraction sessions, the use of the telephone or the Internetshould be considered, so that more caregivers can receivecontinuing support which is less time-consuming and lessexpensive [84].
Some limitations in this review need to be addressed. In thisreview, only the studies published in Chinese or English wereincluded and 18 relevant studies were excluded owing either to theinsufficient information on the effects of the intervention on thesubgroup of stroke caregivers, or to the insufficient information onthe specific component and outcome measurement of theinterventions. In addition, only a small number of studies (usually2 or 3) were included in the meta-analysis owing to the diversity ofthe intervention and its outcome measurement. Thus, thesubgroup analyses of the effect on the dosage, providers, anduse of the conceptual framework of intervention were not feasiblein this review. Beside, these 18 included studies were not of a highquality and a number of methodological weaknesses were foundand have been mentioned before. The summary of this reviewshould be interpreted with caution owing to the methodologicalheterogeneity among the included studies. Moreover, the lack of a
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–4442
precise definition of family caregivers and the caregiving conditionmight impose the risk of providing the psychosocial intervention toinappropriate participants and thus reduce the chance of detectingthe benefit of the intervention [18]. To improve the generalizabilityof the research findings, these methodological pitfalls should beconsidered when designing the RCTs. Inadequate reporting ofstudies was also another concern when conducting this systematicreview. Attempts were made to contact the authors for additionalinformation, yet only a few authors responded. The reporting ofclinical trials should follow the guidelines of the CONSORTstatement [85] to enable readers to determine their validity andreliability.
4.2. Conclusion
To conclude, the effectiveness of different types of psychosocialinterventions could not be drawn from this systematic reviewbecause there were only a limited amount of studies of each type ofinterventions. Synthesized evidence demonstrated that the effectof psychoeducation on improving the caregivers’ family function-ing was very small. There is a trend that psychoeducation,consisting of training in problem solving and stress coping, offeredby telephone, reduced the depression level and improved the senseof competency of caregivers, although the summary of the effectwas not statistically significant. In addition, equipping caregiverswith caregiving skills had a more favorable effect on reducing theuse of healthcare resources of stroke survivors. Future research onpsychosocial intervention in supporting stroke family caregivers isexigent.
4.3. Practical implications
The readjustment of a caregiver’s life occurs throughout thetrajectory of the stroke. To equip family caregivers to face thechallenges of caregiving, the core skills of problem-solving andstress-coping, stroke-related information, as well as caregivingskill training, are suggested to be included in the psychoeducationprogram. The duration of the psychoeducation program rangesfrom two to three months would have a better effect in improvingthe caregivers’ competency and reducing the use of healthcareresources by stroke survivors in the long term. For the delivery ofthe psychosocial interventions, in addition to traditional face-to-face interaction sessions, use of telephone or Internet should beconsidered as an alternative, so that more caregivers could receivecontinuing support; this is less time-consuming and lessexpensive [84]. More RCTs of multifaceted psychoeducationprograms, focused on problem-solving training, during thetransitions from hospital to home care, are needed beforerecommendations of the optimal time, format and dosage ofthe psychosocial interventions can be made to the healthcareprofessionals.
Role of funding
This systematic review was funded by the Joanna BriggsInstitute. The funding source has no involvement in the collection,analysis and interpretation of data, in the writing of this report, andin the decision to submit the paper for publication.
Conflict of interest
All authors state that there are no conflicts of interestconcerning financial, personal or other relationships with otherpeople or organizations within three years of beginning thesubmitted work that could inappropriately influence, or beperceived to inappropriately influence, their work.
Appendix A. An example of typical searching strategy
Ovid MEDLINE(R)
1. exp Stroke/2. (Brain Ischemia or cerebrovascular disorder* or cerebrovascu-
lar disease* or cerebral hemorrhage or stroke* or cva or CVAs orapoplex*).mp.
3. ((cerebrovascular* or cerebro vascular* or cerebral vascular* orbrain vascular) adj3 (accident* or event* or incident* or stroke*or disorder* or disease* or infarct* or apoplex*)).mp.
4. or/1-35. exp Caregivers/6. (caregiver* or care giver* or carer*).mp.7. ((informal or family or primary or spouse) adj3 (carer* or
caregiver* or care giver*)).mp.8. (5 or 6 or 7) and 49. exp Psychotherapy/
10. exp Cognitive Therapy/11. exp Behavior Therapy/12. exp Counseling/13. (rehabilitation* or intervention* or management* or treat-
ment* or psychotherap* or counseling* or cbt).mp.14. ((psycho* or psychosocial or social or cognitive or cognition or
behavioral or cognitive behavioral or peer or problem solving)adj2 (education or modification* or psychotherap* or inter-vention* or support* or therap*or partnership)).mp.
15. ((telephone* or phone* or computer or internet or web) adj3(intervention* or support or counseling*)).mp.
16. or/9-1517. 8 and 1618. exp Health/19. (health* or hlth* or wellness or physical health* or physical
condition* or fatique* or headache* or pain* or accident* orinjur*).mp.
20. ((psychosocial or psychological or caregiving) adj3 (wellbeing*or health* or stress* or strain* or burden or burthen)).mp.
21. exp Social Support/22. ((psychosocial or social) adj3 (support or network* or
system*)).mp.23. exp Depression/24. (depression* or sad*).mp.25. ((emotional or depressive or low or morose or feeling) adj3
(symptom* or illness* or mood or depression or sad*)).mp.26. exp Anxiety/27. (anxiet* or anxiety reaction or angst or anxiousness or
nervousness).mp.28. exp Quality of Life/29. (qualit* of life or life qualit* or quality of life satisfaction).mp.30. or/18-2931. 8 and 3032. 17 or 3133. clinical trial.mp. or exp Clinical Trial/34. placebo.mp.35. (rct or rct$).mp.36. random$.mp.37. (control$ adj3 (stud$ or trial$)).mp.38. ((singl$ or double$ or trebl$ or tripl$) adj (blind$ or
mask$)).mp.39. (comparison stud$ or comparison group$).mp.40. research design.mp. or exp Research Design/41. exp Follow-up studies/42. exp Prospective studies/43. or/33-4244. limit 43 to human45. 32 and 44
H.Y. Cheng et al. / Patient Education and Counseling 95 (2014) 30–44 43
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