Intervention studies for caregivers of stroke survivors: a critical review

Patient Education and Counseling 56 (2005) 257–267

Review

Intervention studies for caregivers of stroke survivors: a critical review Anne Visser-Meily a,b,∗ , Caroline van Heugten c,d , Marcel Post a,b,c , Vera Schepers a,b , Eline Lindeman a,b a b

Rehabilitation Centre De Hoogstraat, Rembrandtkade 10, 3583 TM Utrecht, The Netherlands Rudolf Magnus Institute of Neuroscience, University Medical Centre, Utrecht, The Netherlands c iRv, Institute for Rehabilitation Research, Hoensbroek, The Netherlands d Institute Brain and Behaviour, Maastricht, The Netherlands

Received 15 September 2003; received in revised form 8 February 2004; accepted 27 February 2004

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. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Caregivers; Stroke; Interventions; Review

1. 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,

∗ Corresponding author. Tel.: +30-2561211. E-mail address: [email protected] (A. Visser-Meily).

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

0738-3991/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.02.013

258

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

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.

2. 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 study for stroke patients and their caregivers, if the intervention for the caregivers was described. • Studies designed as randomized clinical trial, clinical trial or uncontrolled trial with pre- and post-test measurement. • Use of outcome measures for caregivers (burden, psychosocial outcome, knowledge on stroke, satisfaction with care, quality of life, emotional state). • Language: English, German or Dutch. For the selected studies the design, content of the intervention, outcome domains and reported effects on caregivers were considered by two authors (JMAV, CMvH). The overall results of each trial were summarized as either ‘+’ (positive for the experimental group), ‘0’ (no differences), or ‘−’ (negative for the experimental group) according to the results presented in the original articles. Positive and negative results on every measure were defined as being statistically significant using a P < 0.05. An attempt was made to identify a relationship between the reported effects and the following variables: time since stroke (subacute versus chronic phase), study designed for caregiver alone or for stroke pa-

tient and caregiver, and content of the intervention (such as information or counselling).

3. Results A total of 22 studies [10–32] 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. 3.1. Study design Most studies (Table 1) had a randomized clinical trial design (RCT on intervention for patients and caregivers, n = 14, RCT on intervention for caregivers, n = 4). Not always the withdrawal/drop out rate was described. In one study [29] it appeared that only 42% of the randomized caregivers and patients attended the intervention. The sample size of carers in the experimental group ranged from 20 [16] to 170 (two experimental groups) [18,19]. The moment of inclusion into the study varied from immediately after the occurrence of the stroke [14,26] to a few years after stroke [11,18]. 3.2. Participant characteristics Most trials (n = 12) did not report age or other characteristics of the caregivers. If caregiver characteristics were described, the mean age of the caregivers was much lower than the mean age of the patients, because most studies included both spouses and adult children. None of these studies analysed possible differences between spouses and children. Patients were at least 60 years old and most studies reported a mean age of the patients of more than 70 years. 3.3. Description of the intervention Interventions varied in terms of focus, content and timing. Most of the studies focussed on the stroke patients as well as on the caregivers (Tables 1 and 2). Only six studies [11,13,16–18,28] focussed only on the caregivers. Four different main intervention approaches could be distinguished (Table 2): providing specialist services, (psycho)education, counselling and social support by peers. Many interventions (n = 12) were directed at improving and facilitating discharge from hospital (i.e. providing specialist services). These interventions typically involved a stroke nurse or a stroke organizer at home, giving information about health services and therapies in the community and giving advice and emotional support to both the stroke patient and caregiver. Some of the interventions (n = 5) emphasized (psycho)educational aspects. Education was directed at gaining general knowledge about

Table 1 Characteristics and methodological aspects of the stroke caregiver intervention studies Caregivers

Patients

Design

Time post-stroke

Intervention

Outcome domains (measures) for caregiversa

Follow up time

Reported effect on caregiversb

Authors conclusions

Anderson, 2000

24 E/15 C, mean age ?

42 E/44 C, mean age 72 (E) to 71 (C), BI 17 (E and C)

RCTc intervention for patient and caregiver

14 days after stroke

E: early hospital discharge and home based rehabilitation (adaptations to the home, therapy sessions at home, emphasis on self-learning, and adjustment to disability, problem solving approach for patient and caregiver) focusing mainly on recovery of patients; C: inpatient rehabilitation

Health-related quality of life (SF-36), emotional state (GHQ), burden (CSI), family functioning (McFAD), activities daily life (AAP), satisfaction with care

6 months

SF-36—mental health: –, others: 0, GHQ: 0, CSI: 0, McFAD: 0, AAP: –, satisfaction: 0

Early hospital discharge and home based rehabilitation gives a potential risk of poorer mental health on a part of the caregivers. In future more focus on emotional support for caregivers and specific goal setting related to their own needs

Braithwaite, 1993

37 E, mean age 61, selected group: stroke clubs

?

Uncontrolled study, pre- and post-test intervention caregivers only

Time since stroke: 3,8 year

E: seminar, 2 h, to improve knowledge about prevalence, risk factors, treatment, stress and resources available to caregivers

Knowledge (scale, 13 items)

Direct afterwards seminar

Knowledge: +

Knowledge after the seminar was best predicted from pre-seminar knowledge and age. Older caregivers were less well-informed afterwards, although they did not differ from younger in scores initially. The emotional state of the caregiver did not affect how much the caregiver learned

Dennis, 1997

119 E/127 C, mean age ?

210 E/207 C, mean age 67 (E) to 68 (C), no difference in stroke severity

RCT intervention for patient and caregiver

Within 30 days after stroke

E: stroke family care worker: to identify unmet needs and fulfilling these using any available resources; health services, social services and voluntary agencies, offering counselling herself (average fewer than five clients contacts); C: usual care, no contact with a stroke family care worker

Emotional state (HADS, GHQ, CHS), satisfaction with care activity in daily life (FAI)

6 months

HADS: 0, GHQ: +, CHS: 0, Satisfaction: +, FAI: 0

Carers in the treatment group were less depressed, and possibly less hassled and anxious (borderline significance), carers expressed greater satisfaction with care

Evans, 1988

64 E1/61 E2/63 C, mean age 49 (E1), 48 (E2) and 51 (C)

64 E1/61 E2/63 C, mean age 62 (E1), 61 (E2) and 63 (C), BI 11 (E1), 10 (E2) and 10 (C)

RCT intervention caregivers only

Third week in hospital

E1: education condition, two 1 h classes, information about consequences of stroke and family’s situation; E2: first E1 and additional seven individual 1 h counselling sessions with social worker. First counselling session before discharge, six afterwards; C: usual care, no education class or counselling

Knowledge (SCIT), family functioning (FAD), activity in daily life and emotional state (PARS)

6 and 12 months

SCIT: E1+, SCIT: E2+, FAD: E1+, FAD: E2+, PARS: E1 0, PARS: E2 +, 6 and 12 months

Both interventions were effective at 6 months and gains were maintained for 1 year. Counselling was consistently more effective than education alone. Caregiver education would facilitate and maintain adaptive changes in family function

Forster, 1996

71 E/68 C, mean age ?

120 E/120 C, median age 73 (E and C), BI 17 (E) to 16 (C)

RCT, patients intervention for patient and caregiver

As soon as possible after stroke

E: specialist nurse visits at home, a minimum of seven visits the first year, provide information, advice and support, goal setting, problem solving; C: usual care, no visits

Emotional state (GHQ)

3, 6 and 12 months

GHQ: 0

Specialist nurse visits did not prove to address the psychosocial difficulties of caregivers of stroke patients

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

Author, year

259

260

Table 1 (Continued ) Caregivers

Patients

Design

Time post-stroke

Intervention

Outcome domains (measures) for caregiversa

Follow up time

Reported effect on caregiversb

Authors conclusions

Goldberg, 1997

21 E/20 C, mean age ?

21 E/20 C, mean age 72 (E and C)

RCT intervention on patients and caregivers

Discharge from rehabilitation centre (2–12 weeks after stroke)

E: case-managed home based care, attending to psychosocial stressors, affecting patient and caregiver; C: standard outpatient follow-up services (medical follow-up visits, and when indicated, outpatient rehabilitation services)

Burden (QRS), emotional state (CES-D), activity daily life (SFE), social support (OARS-SR)

6 and 12 months after discharge

QRS: 0, CES-D: 0, SFE: 0, OARS-SR: 0

No differences, perhaps because of the small group, it would be of interest to examine a young group of stroke survivors. The exit interviews suggested that phone contact was perceived to be as effective as in-home visits

Grant, 1999

10 E1/10 E2/10 C, mean age 56

Mean age 71

RCT, intervention on caregivers

Discharge from hospital

E1 telephone intervention: 2 days before discharge a 3 h social problem solving training, followed by scheduled telephone contacts; E2 home intervention, same as E1 but home visits instead of telephone intervention; C: placebo telephone contacts, same schedule

Health-related quality of life (SF-36), satisfaction (CSQ), problem solving skills (PSI), emotional state (CES-D), burden (CBS), caregiver preparedness (PCS)

5 weeks after discharge (during the intervention) and 13 weeks after discharge (end of the intervention)

Reported effect of E1—SF-36: 0, CSQ: 0, PSI: 0, CES-D: 0, CBS: 0, PCS: 0 13 weeks

Compared to the home and control groups, the telephone group showed a significant reduction in depression, more positive-solving skills and greater caregiver preparedness during the intervention, but not post-intervention, although there were improved scores

Grant, 2002

74 caregivers divided in three equal groups, mean age 56

Mean age 74

RCT, intervention on caregiver

Discharge from hospital

E: telephone intervention on social problem solving training program. 2 days before discharge a 3 h social problem solving training, followed by scheduled telephone contacts; C1: placebo, same number of telephone contacts, asking to identify professional and skilled health services; C2: no telephone contacts

Health-related quality of life (SF-36), satisfaction (CSQ), problem solving skills (PSI), emotional state (CES-D), burden (CBS), caregiver preparedness (PCS)

5, 9 weeks (during intervention) and 13 weeks (end of the intervention) after discharge

SF-36—vitality: +, social funct: +, mental health: +, role limitations: +, other: 0, SCQ: –, PSI: +, CES-D: +, CBS: 0, PCS: +, 13 weeks

Compared with sham intervention and control, the E group had better problem solving skills, greater caregiver preparedness, less depression and improvement in measures of vitality, social functioning, mental health and role limitations related to emotional problems. No differences in burden

110 E1/60 E2/42 C, mean age 66 (E1), 63 (E2), 61 (C)

Mean age ? male 72–75%, <3 year after stroke, 41 (E1), 47 (E2), 51 (C)

RCT, intervention on caregiver

>6 months after stroke

E1: group program, 8-weeks providing 16 h of education, knowledge about stroke and learning problem solving strategies; E2: home visit program, 8–10 weeks, providing 8–h of education, content as E1; C: no intervention

Knowledge (confidence in knowledge), coping (S-UCL), health-related quality of life (SF-36), social support (SSL), burden (CSI)

Within 1 month after completion of the program (short term effect) and 6 months later (long term effect)

Effect on both interventions knowledge: + (1), + (2), S-UCL: + (1), 0 (2), SF-36: 0 (1,2), SSL: + (1), 0 (2), CSI: 0 (1,2); 1 = short term 2 = long term

Short term: both interventions increase in confidence in knowledge about care, use of active coping strategy and seeking social support. No significant differences in effect comparing the groups and home visits. Long term: both interventions contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. Younger females benefit most from the interventions

Heuvel, 2002

2000,

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

Author, year

E and C: 56, mean age 69

41 E/40 C, mean age 72

RCT intervention on patient and caregivers

5–7 days after stroke

E: home rehabilitation group, task- and context-orientated approach focusing on both caregiver and patient with the accent on the patient. The rehabilitation service was delivered by a team of therapists. The care continued for 3–4 months; C: usual care: rehabilitation in stroke unit, as inpatients and/or in day-care

Health-related quality of life (SIP), hours spent by spouses helping

6 months after stroke

SIP: 0, hours help: 0

No differences were found in impact on family caregivers in the form of time devoted to helping the patient or health status of spouses (SIP)

Jones, 2000

81 E, mean age ?

125 E, mean age 72, mean BI at the start 13

Uncontrolled, preand post-design. Intervention patients and caregiver

Mean of 26 days after stroke

E: early discharge by a generic community rehabilitation team supported by stroke nurses. She/he facilitates early safe discharge and supports the rehabilitation process in the community. She tired to address the social functioning of the carers

Burden (RSS)

After completing community rehabilitation, mean 41 days of rehabilitation

RSS: +

Despite the support of the nurses, who visited patients and carers at home, carer stress scores remained high throughout community rehabilitation but showed a small significant fall during treatment. Strategies to address carer stress should be present in community services providing early stroke rehabilitation

Kotila, 1998

125 E/70 C, mean age ?

181 E/140 C, mean age 70 (E and C) for females, 67 (E and C) for males

Non-randomized, comparative study intervention on patients and caregivers

Admission to the hospital for stroke

E: active after-hospital discharge program, extra physiotherapy for a group of stroke patients. Patients and caregivers were active encouraged to participate in social activity program of the Finnish Heart Association (FHA); C: physio- and speech therapy after discharge at health centre

Emotional state (BDI)

3 and 12 months

BDI: 0 (1,2); 1 = 3 months, 2 = 12 months

Depression was common (at 3 months) among caregivers and its rate did not decrease at follow-up. No difference in the depression rate of caregivers with and without active program. However at 12 months there were more severely depressed caregivers in districts without active program

Lincoln, 2003

82 E/77 C, mean age ?

126 E/124 C, mean age 69 (E) to 70 (C), mean BI start of the study: 10

RCT intervention on patient and caregivers

<4 weeks after stroke

E: family-support organizer (FSO), initial contact in hospital with patient and caregiver. Provide information, explain support offered and identify unmet needs. After discharge the FSO visits the patient and caregiver at home, to offer information, emotional support and to direct them to appropriate services (till 9 month after stroke); C: no FSO

Burden (CSI), emotional state (GHQ), knowledge, satisfaction activity of daily life (EADL)

9 months after stroke

CSI: 0, GHQ: 0, knowledge: +, Satisfaction: 0, EADL: 0

The FSO service had no effect on mood, independence of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge

Mant, 1998

29 E/20 C, mean age 61 (E) to 61(C)

37 E/34 C, mean age 70 (E) to 76 (C), BI 17 (E and C)

RCT intervention on patients and caregivers

5–9 days after admission to stroke unit

E: a collection of eight leaflets published by the Stroke Association, and leaflets giving local and national contact names and addresses of support groups and services, sent at home 1 week after randomization; C: collection not sent

Health-related quality of life (SF-36), burden (CSI), knowledge

6 months after stroke

SF-36—mental health: +, others: 0, CSI: 0, knowledge: 0

Information leaflets may lead to improved knowledge about stroke several months after they have been distributed

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

Holmqvist, 2000

261

262

Table 1 (Continued ) Caregivers

Patients

Design

Time post-stroke

Intervention

Outcome domains (measures) for caregiversa

Follow up time

Reported effect on caregiversb

Authors conclusions

Mant, 2000

130 E/137 C, mean age 65 (E) to 54 (C)

156 E/167 C, mean age 75 (E) to 73 (C), BI: 24 h after stroke: 6-8

RCT intervention on patients and caregivers

<6 weeks after stroke

E: family-support organizer, provides information, emotional support and liaison with other services. The nature and frequency of interaction was at the discretion of the FSO and depend on the difficulties and requests of the families. Contacts: average of one hospital visit, one home visit and three telephone calls; C: no family-support worker

Burden (CSI), knowledge emotional state (GHQ), activity daily life (FAI), health-related quality of life (SF-36, COOP) satisfaction

6 months after stroke

CSI: 0, knowledge: 0, GHQ: 0, FAI: +, SF-36—energy, mental health, physical function, pain, general health perception: +, others: 0, COOP: 0, satisfaction: 0

Family-support was significantly beneficial to carers, although what brought about these psychosocial benefits is unclear

McKinney, 2002

81 E/81 C, mean age ?

112 E/116 C, mean age 71, BI 9

RCT intervention on patients and caregivers

Patients were included as soon as possible after stroke

E: cognitive assessment, followed by detailed feedback of personalized results and recommendations to the patient, carer and rehabilitation staff; C: only cognitive screening

Burden (CSI), emotional state (GHQ-28)

3 and 6 months after stroke

CSI: 0 (1,2), GHQ: 0 (1,2); 1 = 3 months, 2 = 6 months

There were no significant differences between groups on psychological distress or strain. However there was a trend for levels of strain to be lower in the assessment group. The provision of information about cognitive assessment in stroke rehabilitation may decrease carer strain

Pain, 1990

?

21 E/15 C, mean age ? mean BI (discharge hospital) 16 (E) to 17 (C)

RCT intervention on patient and caregivers

Discharge from hospital

E: extra individualized booklets with specific information concerning the person’s persisting difficulties and how activities were to be undertaken at home, description exercises, addresses, contacts for support; C: normal care and information

Satisfaction and knowledge questionnaire (SKQ)

3 months after stroke

SKQ: 0

Individually tailored booklets are appreciated by carers. No difference in outcome measure. The cognitive and behavioural effects of stroke need to be more clearly explained

Printz-Feddersen, 1990

17 E/19 C, mean age 64

? mean age 71

Comparative study, peer group, intervention caregivers only

>6 months after stroke

E: stroke club involvement, attended at least one stroke club event <6 months; C: non-involvement in stroke club

Burden (CADET, PCRI), emotional state (GDS)

CADET: 0, PCRI: 0, GDS:0

The stroke club group provided friendship and emotional support as primary benefits. No differences on the outcome measures

Rodgers, 1999

107 E/69 C, mean age 58 (E) to 60 (C)

121 E/83 C, mean age 74 (E) to 76 (C), mean BI at 7 days 9–11

RCT intervention on patient and caregivers

5–9 days after stroke

E: one 1 h small-group educational session in hospital, six 1 h educational sessions after discharge for patient and carer (knowledge, information about services, opportunity to ask questions and gain support within an informal group setting); C: no educational program

Health-related quality of life (SF-36), knowledge emotional state (GHQ), satisfaction

6 months after stroke

SF-36—social funct: –, others: 0, knowledge: +, GHQ: 0, satisfaction: 0

Although the intervention improved informal carer knowledge about stroke, this was not associated with an improvement in their perceived health status. The social functioning of the informal carers randomized to the intervention was less than in the control group

Rudd, 1997

75 E/59 C, mean age ?

167 E/164 C, mean age 70 (E) to 72 (C), BI 0–14: 41%, 15–19: 47%, 20: 12%

RCT intervention on patient and caregivers

Randomization 22 (mean) days after stroke

E: community therapy team to facilitate discharge (home adaptation, social services for patient and carer, planned course domiciliary therapy, individual care plan, weekly team meeting, care from this team) up to a maximum of 3 months; C: conventional care

Burden (CSI), satisfaction

1 year after stroke

CSI: 0, satisfaction: 0

Early discharge from hospital after stroke is feasible without an increase in stress of carers

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

Author, year

?

62 E/59 C, mean age 74, mean BI 5

RCT intervention on patient and caregivers

<2 weeks after stroke

E: integrated care pathways (coordinated by a stroke nurse), key goals, time management, all defined in advance; C: multidisciplinary team care: (coordinated by the consultant, assessment of caregiver needs, caregiver training), weekly meetings, goals were changed on the basis of progress

Burden (CSI), satisfaction, assessment of caregiver needs

6 months after stroke

CSI: 0, satisfaction: 0, assessment of caregiver needs: –

Care of conventional multidisciplinary team gives greater attention to caregiver needs, there was a tendency to lower caregiver strain index (but not significant) in the multidisciplinary group

Teng, 2003

58 E/56 C, mean age ?

58 E/56 C, mean age 70, mean BI 17

RCT intervention on patient and caregivers

<28 days after stroke

E: early supported discharge, home group, 4-week, tailor-made home program of rehabilitation and nursing services (for patient and carer); C: current practices for discharge planning and referral for follow-up services

Burden (B-I)

3 months after stroke

B-I: 0

Caregivers in the early supported discharge group scored consistently lower (but not significantly) on the Burden index than caregivers in the usual care, even caregivers of persons with major functional limitations

E: experimental group, C: control group, BI: Barthel index, CSI: caregiver strain index, SF-36: short form medical outcome study health survey, GHQ: general health questionnaire, MFAD: McMaster family assessment device, AAP: Adelaide activities profile, FAI: Frenchay activity index, HADS: hospital anxiety an depression scale, CHS: caregiving hassles scale, 4-NS: neurosis and social environment, SCIT: stroke care information test, FAD: family assessment device, PARS: personal adjustment and role skills scale, QRS: questionnaire on resources and stress, CES-D: Center for Epidemiologic Studies-Depression Scale, SFE: social functioning examination, OARS-SR: older American resources and services scale-social resources, CSQ: client satisfaction questionnaire, PSI: problem solving inventory, CBS: caregiving burden scale, PCS: preparedness of caregiving scale, S-UCL: short version of the Utrecht coping list, SSL: social support list, CADET: communication, ambulation, daily activities, excretion and transfer, PCRI: physical caregiving responsibility inventory, GDS: geriatric depression scale, EADL: extended activity of daily life, SIP: sickness impact profile, B-I: burden index, RSS: relatives stress scale, BDI: Beck’s depression inventory. ?, no information available. a Outcome measures not concerning the caregivers are omitted. b Results are summarized as reported in the original studies (see Section 2). ‘+’ refers to a positive difference in favour of the experimental group, ’0’ means no difference between the groups, and ‘−’ refers to a negative difference in adverse of the experimental group. c RCT: randomized controlled trial.

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

Sulch, 200

263

264

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

Table 2 Relation between overall effect on caregivers and content of intervention

Overall effect

Specialist services

(Psycho)education

Counselling

Social support by peers

+

Dennis, Jones, Lincoln, Mant (2000)

0 −

Forster, Goldberg, Holmqvist, Kotila, Rudd, Teng Anderson, Sulch

Braithwaite, Evans (E1), Mant (1998) McKinney, Pain Rodgers

Evans (E2), Grant (2002), Heuvel Grant (1999)

Printz–Feddersen

stroke [11,13,24,27,29] or more specific knowledge about cognitive aspects [26]. Only a few studies (n = 4) included counselling elements: learning of goal setting, problem solving or coping strategies. Only one study described the effect of participation in a stroke club (peer support) [28]. Most interventions started during or shortly after discharge from hospital. Only three studies [11,18,28] (Table 3) took place in the chronic phase (more than 6 months after stroke). 3.4. Outcome measures In most studies, more than one outcome measure was applied (Table 1). Many different outcome domains and a variety of measures were used. The nine outcome domains for caregivers were quality of life (SF-36, SIP, Darmouth COOP charts), emotional state (GHQ, HADS, CHS, CES-D, GDS, BDI), burden (CSI, CBS, QRS, CADET, PCRI, B-I, RSS), family functioning (McFAD), social activity in daily life (AAP, FAI, PARS, SFE, EADL), coping (PSI, UCL, PCS), satisfaction with care (CSQ), knowledge (SCIT) and social support (OARS-RS, SSL). Most frequently used outcome measures were the CSI (eight studies), SF-36 (seven studies) and the GHQ (seven studies). 3.5. Outcome Out of 22 studies, 10 reported positive results on one or more of the outcome measures. Of these 10 studies there was significant reduction of depression [12,17], improvement of knowledge [11,13,18,23,29] improvement in satisfaction with care [12], improvement in family functioning [13], improvement in quality of life [17,24,25], better problem solving skills [17,18], more social activities in daily life [13,25], more social support [13,18] and less burden [13,21]. Three studies [10,29,31] reported a negative result on caregiver outcome. Early discharge with a community rehabilitation team [10] led to a worse state of general health among caregivers in the intervention group although a prob-

lem solving approach was used by the team. The authors concluded that their model of care focused too much on recovery of patients and too little on goal setting related to the needs of caregivers. In the study on use of integrated care pathways [31] the caregivers expressed more dissatisfaction with provision of information and there was a higher caregiver burden in the experimental group. The authors concluded that the use of integrated care pathways may lack the flexibility required to adjust for variations and complexities of stroke rehabilitation for patients and caregivers. Participation in a stroke education program (SEP) [29] (one 1 h small group educational session for inpatients followed by six 1 h sessions after discharge) improved informal carer knowledge about stroke but the social functioning of carers randomized to the SEP was less favourable than in the control group. According to the authors, the SEP may have increased carers’ awareness of the consequences of the stroke and as a result, they may have reduced their social activities to spend more time with the patient. 3.6. Effects of type of intervention Twelve studies investigated the provision of services aimed at facilitating and improving discharge. Either a stroke nurse or a social worker offered information or therapy in the community. Only four of these studies [12,21,23,25] found significant improvement for the caregiver. Dennis et al. [12] evaluated a stroke family care worker, who tried to identify unmet needs and aimed at fulfilling these needs accordingly. The worker also offered counselling. How many contacts the family care worker would receive, was left for the worker to decide and depended on the assessment of needs. Positive effects were measured in emotional state and satisfaction with care. Lincoln et al. [23] studied early discharge with the assistance of a family-support organizer (FSO). The appointment of a FSO had no effect on mood, strain or activities of daily living but did increase knowledge. In the study of Mant et al. [25], a family-support organizer provided information and

Table 3 Relation between overall effect on caregivers and timing intervention

Overall effect

+ 0 −

Acute phase caregiver

Acute phase caregiver and patient

Chronic phase caregiver

Evans, Grant (2002) Grant (1999)

Dennis, Lincoln, Mant (1998), Mant (2000), Jones Forster, Goldberg, Holmqvist, Kotila, McKinney, Pain, Rudd, Teng Anderson, Rodgers, Sulch

Braithwaite, Heuvel Printz–Feddersen

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

265

emotional support and served as liaison to other services. Also, in this study the frequency of interaction was at the discretion of the family-support organizer. Positive results were found in health-related quality of life and social activities of daily life. Jones et al. [21] also reported a positive effect on burden. In this uncontrolled study early discharge was facilitated by a generic community team supported by stroke nurses. A positive effect was reported in four [11,13,24,29] of the six (psycho)education interventions. Only in three studies [11,13,29] the caregivers gained knowledge about stroke. In the study of Mant et al. [24] there was an improvement of knowledge (but not significant), and improvement in mental health. Rodgers et al. [29] described increased knowledge but worse social functioning in the experimental group as described herein before. In three of the four counselling studies [13,17,18] a positive effect was reported. The studies of Grant et al. [16] showed a positive outcome during but not post-intervention. In the studies counselling was given at a fixed schedule, not depending on questions of the caregiver. It was found to be a time consuming intervention (in all studies about 8 h of individual counselling). The only study about peer support [28] found no difference in burden or emotional state in comparison to a control group.

not identify specific interventions being clearly beneficial for caregivers of patients with stroke. Use of a large number of heterogeneous outcome domains and a great variety of measures makes it difficult to compare the studies. Even within one study, it was usually difficult to rate the overall effect due to mixed results on the different outcome domains and measures used. For example, Grant (2002) (Table 1), found positive effects on 4 out of 8 SF-36 scales and no effects on the other 4 scales of the SF-36, and found negative effects on the CSQ. On the CSI, the SF-36 and the GHQ, the most frequently used outcome measures, only respectively 0 out of 8, 3 out of 7 and 1 out of 7 studies found a positive and statistically significant effect of the caregiver intervention. It seems very difficult to change strain, wellbeing or emotional status of the caregivers in a positive way. The absence of the effects may be due to insufficient interventions, or incorrect timing of the intervention in the rehabilitation process, but it is also possible that the measurements used were not sensitive enough to detect relevant changes in the status of caregivers [33]. A final shortcoming of the literature reviewed is that in most studies the caregivers were spouses as well as adult children of the stroke patients, and that the results were not presented separately for these two groups.

3.7. Focus of the study

Two recent studies on needs of caregivers of stroke patients [39,40] underscore the importance of information provision and counselling (dealing with stroke survivor’s emotions and behaviours, physical and instrumental care, and personal responses). Many interventions in the current review do have the patients’ outcome as target goal. These studies did not focus sufficiently on the problems of caregivers. In the future, it is important to use studied needs of caregivers for developing intervention programs.

Most studies were focussed both on the caregiver and on the patient. Interventions orientated at stroke patients and caregivers took place in the acute phase. The caregiver orientated interventions took place in the acute and chronic phase.

4.2. Caregiver needs

4. Discussion and conclusion 4.3. Further research 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. 4.1. Limitations of studies reviewed Our review of the interventions for caregivers of stroke patients included 18 RCTs, 2 non-randomized comparative studies and 2 uncontrolled studies. Ten studies reported significant positive effects on one or more outcome measures; however two of these were uncontrolled studies. A few studies reported a trend towards lower burden, without reaching statistical significance [26,31,32]. Unfortunately, we could

More and better intervention studies of caregiver support should be conducted to establish the effectiveness of programs. These interventions should be targeted at caregivers’ problems and needs, after caregiver needs assessment is done. Such assessment can cover the nine outcome domains which are presented in this review. Future interventions should be targeted to compare (1) caregivers at risk for burn out and caregivers with a lesser risk profile; (2) different types of counselling (a more personal and telephone form, an individual and group form) and (3) interventions in different phases (acute, subacute and chronic phase). Intervention studies of respite care showed positive effects on caregiver distress in multidiagnostic groups [9,41] and this approach can also be explored in stroke. In future research, groups of caregivers should be investigated separately (spouse versus other family members). Research should include booster sessions because in the reviewed interventions the results

266

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

did not remain stable over time. Further research should not only focus on the effects on the caregiver, but also on the possible effects of the caregiver intervention on the stroke patient. A positive patients’ result would be a strong argument to implement a caregivers’ program.

problems of the patient. Further research is required taking the needs of caregivers into account.

4.4. Practice implication

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

Although this review does not enable a definite conclusion of the effectiveness of interventions for caregivers of stroke patients, it does help to focus on interventions and therapies with a positive effect. Counselling has been studied only a few times so far, but this approach seems promising, because 3 out of 4 studies showed a positive overall effect. The counselling interventions focussed only on caregivers and on their problems and thus not on the stroke patients. The aim of these interventions was to teach caregivers coping strategies to reduce stress. A disadvantage of this kind of interventions is that it is time consuming. Grant et al. [17], described an intervention, using a less time consuming method: counselling by telephone after initial problem solving training in hospital. In any case, it seems logical to offer counselling shortly after stroke [13,17] because at that moment family life changes dramatically and stress levels for caregivers are high. But even up to 3 years after stroke counselling [18] increased confidence in knowledge about patient care and increased the use of the active coping strategies. It is questionable whether counselling should be recommended for all caregivers of stroke patients at this stage (considering lack of undisputable effectiveness, time consuming and prospective number of caregivers) but it seems the first choice for those caregivers at risk of becoming stressed or depressed or socially and functionally dependent [34–37]. The consequences of the three studies with a negative outcome are that more emphasis should be placed on individualized needs of the caregivers instead of offering a pre-structured programme. Service provision, including home visits with the emphasis on listening, reassuring, and giving advice does not have a univocal positive effect on the caregiver. Emotional support for caregivers will in the first place increase their insight; however this should not be the final aim of the intervention. Instead, active problem solving strategies and support seeking behaviour should be promoted. Many studies [35,38] conclude that services providing emotional support might be effective in the reduction of caregiver strain. Our review sheds doubt on these conclusions.

5. 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

Acknowledgements

References [1] Scholte op Reimer WJM, Haan de RJ, Rijnders PT, Limburg M, Bos van den GAM. The burden of caregiving in partners of long-term stroke survivors. Stroke 1998;29:1605–11. [2] Carnwath TCM, Johnson DAW. Psychiatric morbidity among spouses of patients with stroke. Br Med J 1987;294:409–11. [3] Draper BM, Poulos CJ, Cole AMD, Poulos RG, Ehrlich F. A comparison of caregivers for elderly stroke and dementia victims. J Am Geriatr Soc 1992;40:896–901. [4] Royal College of Physicians. National clinical guidelines for stroke. The Intercollegiate Working Party for Stroke, 2002. [5] Commissie CVA-revalidatie. Revalidatie na een beroerte, richtlijnen en aanbevelingen voor zorgverleners. Den Haag Nederlandse Hartstichting [Committee stroke-rehabilitation. Rehabilitation after stroke. Guidelines and recommendations. Den Haag: Dutch Heart Association], 2001. [6] Rodgers H, Bond S, Curless R. Inadequacies in the provision of information to stroke patients and their families. Age Ageing 2001;30:129–33. [7] Forster A, Smith J, Young J, Knapp P, House A, Wright J. Information provision for stroke patients and their caregivers (Cochrane Review). The Cochrane Library, 2002. [8] Low JTS, Payne S, Roderick P. The impact of stroke on informal carers: a literature review. Soc Sci Med 1999;49:711–25. [9] Knight BG, Lutzky SM, Macofsky-Urban F. A meta-analytic review of interventions for caregiver distress: recommendations for future research. Gerontologist 1993;33:240–8. [10] Anderson CS, Rubenach S, Mhurchu CN, Clark MS, Spencer C, Winsor A. Home or hospital for stroke rehabilitation? Results of a randomized controlled trail. I. Health outcomes at 6 months. Stroke 2000;31:1024–31. [11] Braithwaite V, McGown A. Caregivers’ emotional well-being and their capacity to learn about stroke. J Adv Nurs 1993;18:195–202. [12] Dennis M, O’Rourke S, Slattery J, Staniforth T, Warlow C. Evaluation of a stroke family care worker: results of a randomized controlled trial. Br Med J 1997;314:1071–6. [13] Evans RL, Matlock A, Bishop DS, Stranahan A, Pederson C. Family intervention after stroke: does counselling or education help? Stroke 1988;19:1243–9. [14] Forster A, Young J. Specialist nurse support for patients with stroke in the community: a randomized controlled trial. Br Med J 1996;312:1642–6. [15] Goldberg G, Segal ME, Berk SN, Schall RR, Gershkoff AM. Stroke transition after inpatient rehabilitation. Top Stroke Rehabil 1997;4:64–79. [16] Grant JS. Social problem-solving partnerships with family caregivers. Rehabil Nurs 1999;24:254–60. [17] Grant JS, Elliott TR, Weaver M, Bartolucci AA, Newman Giger J. Telephone intervention with family caregivers of stroke survivors after rehabilitation. Stroke 2002;33:2060–5. [18] Heuvel van den ETP, Witte de LP, Nooyen-Haazen I, Sanderman R, Meyboom-de Jong B. Short-term effects of a group program and an

A. Visser-Meily et al. / Patient Education and Counseling 56 (2005) 257–267

[19]

[20]

[21]

[22] [23]

[24]

[25] [26]

[27] [28] [29]

individual support program for caregivers of stroke patients. Patient Edu Couns 2000;40:109–20. Heuvel van den ETP, Witte de LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. Long-term effects of group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most. Patient Edu Couns 2002;47:291–9. Holmqvist LW, Koch von L, Pedro-Cuesta de J. Use of healthcare, impact on family caregivers and patient satisfaction of rehabilitation at home after stroke in southwest Stockholm. Scand J Rehabil Med 2000;32:173–9. Jones AL, Charlesworth JF, Hendra TJ. Patient mood and carer strain during stroke rehabilitation in the community following early hospital discharge. Disabil Rehabil 2000;22:490–4. Kotila M, Numminen H, Waltimo O, Kaste M. Depression after stroke. Results of the FINNSTROKE study. Stroke 1998;29:368–72. Lincoln N, Francis VM, Lilley SA, Sharma JC, Summerfield M. Evaluation of a stroke family support organizer. A randomized controlled trial. Stroke 2003;34:116–21. Mant J, Carter J, Wade DT, Winner S. The impact of an information pack on patients with stroke and their carers: a randomized controlled trial. Clin Rehabil 1998;12:465–76. Mant J, Carter J, Wade DT, Winner S. Family support for stroke: a randomized controlled trial. Lancet 2000;356:808–13. McKinney M, Blake H, Treece KA, Lincoln NB, Playford ED, Gladman JRF. Evaluation of cognitive assessment in stroke rehabilitation. Clin Rehabil 2002;16:129–36. Pain HSB, McLellan DL. The use of individualized booklets after a stroke. Clin Rehabil 1990;4:265–72. Printz-Feddersen V. Group process effect on caregiver burden. J Neurosci Nurs 1990;22:164–8. Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R. Randomized controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke 1999;30:2585–91.

267

[30] Rudd AG, Wolfe CDA, Tilling K, Beech RR. Randomised controlled trial to evaluate early discharge scheme for patients with stroke. Br Med J 1997;315:1039–44. [31] Sulch D, Melbourn A, Perez I, Kalra L. Integrated care pathways and quality of life on stroke rehabilitation unit. Stroke 2002;33:1600–4. [32] Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Cote R, Scott S. Costs and caregiver consequences of early supported discharge for stroke patients. Stroke 2003;34:528–36. [33] Visser-Meily JMA, Post MWM, Riphagen II, Lindeman E. Measures used to access burden among caregivers of stroke patients: a review, Clin Rehabil, accepted for publication. [34] Blake H, Lincoln NB. Factors associated with strain in co-resident spouses of patients following stroke. Clin Rehabil 2000;14:307–14. [35] Blake H, Lincoln N, Clarke DS. Caregivers strain in spouses of stroke patients. Clin Rehabil 2003;17:312–7. [36] Heuvel van den ETP, Witte de LP, Schure LM, Sanderman R, Meyboom-de Jong B. Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clin Rehabil 2001;15:669– 77. [37] Thommessen B, Wyller TB, Bautz-Holter E, Laake K. Acute phase predictors of subsequent psychosocial burden in carers of elderly stroke patients. Cerebrovasc Dis 2001;11:201–6. [38] Bugge C, Alexander H, Hagen S. Stroke patients’ informal caregivers. Patient, caregiver, and service factors that affect caregiver strain. Stroke 1999;30:1517–23. [39] Bakas T, Austin JK, Okonkwo KF, Lewis RR, Chadwick L. Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge. J Neurosci Nurs 2002;34:242–51. [40] Smagt-Duijnstee van der M, Hamers JPH, Huijer Abu-Saad H. Relatives of stroke patients-their experiences and needs in hospital. Scand J Caring Sci 2000;14:44–51. [41] Caradoc-Davies TH, Harvey JM. Do ’social relief’ admissions have any effect on patients or their care-givers. Disabil Rehabil 1995;17:247–51.