Review
Intervention studies for caregivers of stroke survivors: a critical review

https://doi.org/10.1016/j.pec.2004.02.013Get rights and content

Abstract

The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.

Introduction

After stroke, burden for caregivers is common [1]. High levels of burden are related to deterioration of the caregivers’ own health status, social life and well-being. Caregiver depression can worsen the depression of a stroke survivor and predict poor response to rehabilitation [2].

Providing caregivers with support, may therefore not only improve their own health but also the quality of life of the stroke patients [3]. Minimization of stress on and distress of the family is therefore an important aim of rehabilitation after stroke. Interventions might help to mobilize networks, create new sources of support, decrease conflicts and enhance the quality of support. Intervention programs which have already been developed vary in methods, like education, support services, behavioural and psychotherapeutic techniques, self-help groups, and respite care.

The National Clinical Guidelines for Stroke, UK (updated 2002) [4] present four guidelines on carers. The guidelines are: (1) the needs of the family to be given information, to be involved and to be given support must be considered from the outset, (2) stroke services must be alert to the likely stress on carers, (3) information should be given to families on the nature of the stroke and on relevant local and national services, and (4) family-support workers should be involved to help reduce carer distress. Guidelines about stroke rehabilitation (2001) [5] were also published in the Netherlands. Besides needs for information and counselling (like in the UK guidelines), assessment of the social situation, burden and sexual functioning are advised. The importance of giving information to the spouse about possible cognitive problems is underscored.

Despite the existence of many caregiver support programs, their effectiveness remains to be established. The information provision for stroke patients and their caregivers has been studied in two reviews (2001 [6] and 2002 (Cochrane review) [7]). The results of these reviews are limited by the variable quality of the trials and the wide range of outcome measures used. The effectiveness of information provision could not be conclusively demonstrated. Another review [8] concerned the effectiveness of health services provision for caregivers of stroke patients. This review showed mixed results on psychological and social aspects and little information was given about demographic characteristics and sample sizes. In 1993 a meta-analysis of interventions for caregiver’s emotional distress [9] was published. It included caregivers of patients with all kinds of diagnoses. The results demonstrated a moderate effect for individual psychosocial interventions and for respite care programs. Social and health services other than respite care seemed to have no consistent impact on caregiver distress. All reviews were based on small series of studies and many studies suffered from small sample sizes. For this reason, the effectiveness of interventions directed at caregivers remains unclear.

Recently a number of studies have been published in stroke literature in which the effect of various interventions for caregivers alone or for patients and caregivers has been evaluated. The main object of the present review is therefore to study the evidence of the effectiveness of interventions for caregivers of stroke patients. The second objective is to relate possible differences in results between interventions to differences in timing after stroke and the content of the intervention. Incorporating the evidence, practical and concrete advice can be given concerning the management of stroke caregivers.

Section snippets

Methods

A literature search in Medline from 1966 to March 2003, PsychINFO (1984 to March 2003), AMED (1985 to March 2003) and CINAHL (1982 to March 2003) was carried out. For the search, the keywords ‘stroke AND caregiver(s)’, and ‘stroke AND carer(s)’ were used. Selection of articles was based on the title and the abstracts. In case of uncertainty, the entire text of an article was read. The following inclusion criteria were applied:

  • Intervention study for caregivers of stroke patients.

  • Intervention

Results

A total of 22 studies [10], [11], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23], [24], [25], [26], [27], [28], [29], [30], [31], [32] was found to meet the inclusion criteria (Table 1). These studies were all published in English. They were conducted in Europe (N=14), USA (N=5), Australia (N=1), Canada (N=1) and New Zealand (N=1). The studies were fairly recent: the oldest study included data from 1990.

Discussion and conclusion

Former reviews on intervention for caregivers of stroke patients [6], [7] were focussed on effectiveness of only information provision for stroke patients and caregivers [6], [7] or on effectiveness of stroke services on quality of life of stroke caregivers as part of a review on the impact of stroke on informal carers [8]. Our review included four different types of interventions and the effectiveness was considered only for the caregivers of the stroke patients.

Conclusions

We could not identify sufficient evidence from the reviewed studies to confirm the efficacy of interventions on caregivers of stroke patients. Counselling programs appear to have the most likely positive outcome. These programs focus on the problems of the caregiver instead of on the problems of the patient. Further research is required taking the needs of caregivers into account.

Acknowledgements

This project has been supported by the Netherlands Organisation for Health Research and Development (grant: 014-32-042 and 3206.0162).

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