SYSTEMATIC REVIEW

A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions Margarita Corry, Alison While, Kathleen Neenan & Valerie Smith Accepted for publication 9 August 2014

Correspondence to M. Corry: e-mail: [email protected] Margarita Corry MSc RGN RNT Assistant Professor/PhD Candidate Trinity College Dublin, School of Nursing, Ireland Alison While BSc MSc PhD Emeritus Professor of Community Nursing Kings College London, Florence Nightingale School of Nursing and Midwifery, UK Kathleen Neenan MSc RGN RNT Assistant Professor in Nursing School of Nursing and Midwifery, Trinity College Dublin, Ireland Valerie Smith PhD RGN RM Assistant Professor in Midwifery School of Nursing and Midwifery, Trinity College Dublin, Ireland

C O R R Y M . , W H I L E A . , N E E N A N K . & S M I T H V . ( 2 0 1 5 ) A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions. Journal of Advanced Nursing 71(4), 718–734. doi: 10.1111/jan.12523

Abstract Aim. To evaluate the effectiveness of interventions to support caregivers of people with selected chronic conditions. Background. Informal caregivers provide millions of care hours each week contributing to significant healthcare savings. Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. Design. A systematic review of systematic reviews of interventions to support caregivers of people with selected chronic conditions. Data sources. The electronic databases of PubMed, CINAHL, British Nursing Index, PsycINFO, Social Science Index (January 1990–May 2014) and The Cochrane Library (Issue 6, June 2014), were searched using Medical Subject Heading and index term combinations of the keywords caregiver, systematic review, intervention and named chronic conditions. Review methods. Papers were included if they reported a systematic review of interventions for caregivers of people with chronic conditions. The methodological quality of the included reviews was independently assessed by two reviewers using R-AMSTAR. Data were independently extracted by two reviewers using a pre-designed data extraction form. Narrative synthesis of review findings was used to present the results. Results. Eight systematic reviews were included. There was evidence that education and support programme interventions improved caregiver quality of life. Information-giving interventions improved caregiver knowledge for stroke caregivers. Conclusion. Education, support and information-giving interventions warrant further investigation across caregiver groups. A large-scale funded programme for caregiver research is required to ensure that studies are of high quality to inform service development across settings. Keywords: caregivers, chronic condition, nursing, review of reviews, systematic review

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Why is this research or review needed? ● There is limited understanding of the impact of interventions on caregiver outcomes. ● It is important to identify which interventions have the potential to promote optimal physical and or psychological health for caregivers of people with selected chronic conditions. ● An overview of the state of knowledge of interventions for caregivers is necessary to inform decision-making. ● A synthesis of evidence evaluating the effectiveness of interventions for caregivers of people with selected chronic conditions provides a foundation for future research.

What are the key findings? ● Despite much research evaluating a range of interventions for caregivers, in general their overall impact is limited. ● Active information provision is effective for improving quality of life (QoL) and caregiver knowledge for caregivers of people with stroke. ● No evidence of benefit was found to support the use of psychosocial interventions for caregivers of people with stroke. ● None of the reviews provided evidence of benefit for interventions to improve caregiver social functioning.

How should the findings be used to influence policy/ practice/research/education? ● Policy makers can use the review findings when making decisions about the implementation of interventions for caregivers of people with chronic conditions. ● The findings can inform funding bodies in determining what carer intervention research merits further exploration.

A systematic review of systematic reviews of interventions for caregivers

care from secondary to primary-care settings and increasing healthcare reliance on informal caregivers including family members, it is essential that funding for research and practice is targeted towards interventions that potentially improve the lives of both family members/caregivers and care recipients. It is therefore important to identify which interventions have the potential to promote optimum physical and/or psychosocial health for caregivers of people with chronic conditions. Chronic conditions are long-term conditions lasting more than 6 months, are non-communicable, involving some functional impairment or disability and are usually incurable (Department of Health and Children (Ireland) 2008). Examples include cardiovascular disease, musculoskeletal conditions and mental disorders (Department of Health & Children (Ireland) 2008). An initial scoping search of the literature revealed that, in addition to a wide range of primary studies, several systematic reviews evaluating interventions for caregivers have been published. Where reviews already exist, conducting a systematic review of these reviews enables researchers to give an overview of the available evidence on a topic (Smith et al. 2011). For this reason, a systematic review of reviews was deemed the most appropriate approach for bringing together the available evidence on all of the interventions for caregivers of people with selected chronic medical conditions. This paper also evaluates the quality of the included reviews using a revised instrument for the assessment of multiple systematic reviews (R-AMSTAR) (Kung et al. 2010). The challenges encountered when attempting to bring together reviews that evaluate multiple interventions on the same topic are also discussed.

● Educators can use the review to highlight the challenges faced by researchers when attempting to synthesis findings

Aim

from reviews that include studies that evaluate a wide range of interventions.

To synthesize the findings from systematic reviews that evaluate the effectiveness of any intervention developed for caregivers of people with chronic conditions.

Introduction Advancing the knowledge base for nursing requires researchers and practitioners to move beyond descriptive and exploratory research to developing and testing practices that strengthen the evidence base of nursing (Richards & Borglin 2011). In the UK and Republic of Ireland (ROI) family caregivers provide millions of hours of care each week contributing an annual estimated national saving of £119bn in the UK (Brindle 2011) and €5bn in the ROI (Care Alliance Ireland 2013). Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. With the shift in the provision of health © 2014 John Wiley & Sons Ltd

Review question What interventions are effective in promoting optimum health (physical and psychosocial) in caregivers of people with chronic conditions?

The review Design A systematic review of systematic reviews of interventions for caregivers of people with selected chronic conditions 719

M. Corry et al.

was undertaken. Smith et al.’s (2011) methodology for systematic reviews of systematic reviews was used to guide the conduct of this review. The reporting of this review adheres to the PRISMA checklist (Preferred Reporting Items for Systematic reviews and Meta-Analysis) for the reporting of systematic reviews (Moher et al. 2009). Scope of the review The following criteria defined the scope of the review: Participants: Informal caregivers of people with chronic conditions living in the community. Informal caregivers are unpaid people who support people with chronic conditions. This includes family members, caregivers who may receive a caregiver allowance or other person who provides support but is not paid to do so. Problem: Chronic conditions (as defined in the introduction) and, additionally, progressive, constant or relapsing/ episodic (Rolland 1987) in the adult population but excluding mental illness and those not listed in the inclusion criteria below. To meet the review’s aim and be manageable, the review was limited to caregivers of select chronic conditions (see below) which were considered to similarly impact on caregivers’ physical and psychological outcomes. Interventions: Interventions targeted at informal caregivers to assist or support them in their role in caring for a person with a chronic condition. Outcomes: The physical and psychological health of caregivers was of interest in answering the review question. The primary outcome of interest was caregiver quality of life (QoL). Secondary outcomes of interest were caregiver burden, depression, anxiety, family functioning, caregiver competence, stress and social activities. Caregiver competence included the additional embedded outcomes of preparedness to care and knowledge. Inclusion/exclusion criteria To be included in this systematic review, the original systematic review had to meet a minimum set of inclusion criteria: (i) reported on an intervention for caregivers of people with a selected chronic condition; (ii) comprised of RCT designs which evaluated the interventions; and (iii) focused on caregivers of people with a selected chronic condition, namely, stroke, Parkinson’s disease, multiple sclerosis, motor neurone diseases, cystic fibrosis, kidney failure, heart disease, asthma, chronic pulmonary disease (COPD) and/or head injury. The conditions were selected because of the similarity of the impact of the condition from a physical and psychological perspective on the person with the condition and the consequent likelihood of similarity of experience for the caregiver. 720

Search method The electronic databases searched were: CINAHL, PubMed, PsycINFO, BNI, Social Science Index (January 1990–1 May 2014) and The Cochrane Library (Issue 6, June 2014), limited to English language publication. Search strings were developed and adapted for use across databases, combining the MESH and index terms of the keywords of caregiver, systematic review, meta-analysis, named chronic conditions (e.g. stroke), chronic disease and intervention. Search terms in strings were combined using the Boolean operand ‘OR’ and across strings using the Boolean operand ‘AND’ (see Table S1 for sample search strategy).

Search outcome The search yielded 224 citations following removal of duplicates. Titles and abstracts were independently screened by two reviewers (MC & KN). The full texts papers of 13 systematic reviews were selected for further examination. Five were subsequently rejected after reading the full text leaving eight reviews meeting the inclusion criteria. The full text papers were rejected for the following reasons: outcomes were not reported separately for persons with cystic fibrosis and carers (Glasscoe & Quittner 2003), an updated version of the review was published (Forster et al. 2001, Smith et al. 2008), the outcome criteria were not relevant to the review selected outcome criteria (Bensink et al. 2006) and the findings were not separately reported for acute and chronic conditions (Atherton et al. 2012). Figure 1 provides a flow diagram of the results of the search and selection process.

Quality appraisal Included reviews were independently assessed for methodological quality by two reviewers (MC & KN) using R-AMSTAR, a validated quality assessment instrument purposively developed for assessing the quality of systematic reviews. Any disagreements on quality ratings were discussed and a consensus reached.

Data abstraction A predesigned data extraction sheet was developed to extract the relevant data from the included reviews. Data of interest to the review included, chronic medical condition, type of intervention, comparator and data on outcomes of interest to this review. Two reviewers (MC & KN) independently extracted data which was then cross-checked. © 2014 John Wiley & Sons Ltd

M. Corry et al.

one study that evaluated a psychosocial intervention demonstrated no statistically significant difference between the groups in caregiver competence (SMD 0
326, 95% CI 0
095 to 0
747, P = 0
129, 86 participants, 1 trial). No positive benefit was reported in the narrative summary of findings in Allison et al. (2011).

Stress Two reviews reported on the outcome of caregiver stress (Legg et al. 2011, Forster et al. 2012). Forster et al. (2012) reported no effect (Odds Ratio (OR) 1
13, 95% CI 0
65– 1
97, P = 0
65, 498 participants, 4 trials), however, Legg et al. (2011) reported a positive benefit for non-pharmacological interventions in one trial (MD 8
67 (95% CI 11
30 to 6
04, P < 0
0001, 155 participants, 1 trial), but not in trials on other interventions (SMD 0
29, 95% CI 0
86 to 0
27, P = 0
11, 219 participants, 2 trials; MD 0
34 (95% CI 1
64 to 0
96, P < 0
61, 183 participants, 1 trial); MD 2
02 (95% CI 6
58 to 2
54, P < 0
39, 28 participants, 1 trial). Similar to Forster et al. (2012), a variety of instruments were used to measure stress including the relative stress scale, carer strain index, General Health Questionnaire-28 and an original devised measurement instrument.

Social functioning One review reported on the outcome of social functioning (Forster et al. 2012). Active information interventions, provided with the intention of improving caregiver social functioning, were not found to be effective (median score at 1 year: intervention 27 (23–30), control 26 (24–30), 266 participants, 1 trial; no statistics reported, 39 participants, 1 trial).

Anxiety Two reviews reported on the outcome of anxiety (Brereton et al. 2007, Legg et al. 2011). Caregiver training was found to be of benefit in favour of the intervention (P < 0
01, 300 participants, 1 trial) (Brereton et al. 2007). No benefit was reported by Legg et al. (2011) (Risk ratio 0
42, P = 0
13, 271 participants, 1 trial).

Physical health In a review that reported on physical health, it was unclear whether the results pertained to the caregiver or the care recipient (Allison et al. 2011).

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Discussion This is the first systematic review of published systematic reviews, of which the authors are aware, that brings together the evidence relating to interventions supporting caregivers of people with chronic conditions. This review synthesizes the evidence from eight reviews. Despite the relatively small number of reviews, when the wide range of chronic conditions is considered, the findings from this review are informative as they give an overview of level 1a evidence on interventions for caregivers. Level 1a evidence is the highest level of evidence from which researchers and clinicians can make strong recommendations for practice (Burns et al. 2011). The findings provide evidence of benefit for education and support programmes for improving caregivers’ QoL and for information giving interventions for improving caregiver competence when a caregiver knowledge outcome measurement instrument was used. Results from individual trials suggest that active information interventions may also be helpful for improving depression and care burden scores, but there were insufficient trial data to pool findings on these outcomes and further research is needed to substantiate these findings. Psychosocial interventions were not found to have any effect on depression, family functioning, caregiver competence or burden. Similarly, no evidence of benefit was reported for any intervention for improving social functioning. Some benefit was reported for interventions reporting on stress, family functioning and caregiver competence as expressed by problem-solving and preparedness to care. These findings must be interpreted with caution, however, as the findings from reviews receiving lower quality ratings were not always supported by reviews that received higher quality ratings (e.g. positive results for family functioning in Brereton et al. (2007) with a quality rating of 27 compared with Cheng et al. (2014) with a quality rating of 38). Of note in this review was the lack of systematic reviews of interventions for caregivers other than those caring for people with stroke, highlighting an overall lack of evidence on interventions for caregivers of people with other chronic conditions. This may reflect the few trials evaluating interventions for caregivers resulting in few systematic reviews of interventions for carers of people with chronic conditions, other than stroke, or that the completed studies are of insufficient quality for inclusion in a systematic review. There were only 66 original trials in the eight systematic reviews which is a relatively modest number. Furthermore, these trials tested a variety of interventions with relatively small samples. For example, the sample sizes across the © 2014 John Wiley & Sons Ltd

JAN: SYSTEMATIC REVIEW Atherton H., Sawmynaden P., Sheikh A., Majeed A. & Car J. (2012) Email for clinical communication between patients/ caregivers and healthcare professionals. Cochrane Database of Systematic Reviews 11, CD007978. Bensink M., Hailey D. & Wootton R. (2006) A systematic review of successes and failures in home telehealth: preliminary results. Journal of Telemedicine and Telecare 12(Suppl 3), 8–16. Breakwell G.M., Hammond S. & Fife-Schaw C. (2000) Research Methods in Psychology. Sage Publications, London. Brereton L., Carroll C. & Barnston S. (2007) Interventions for adult family carers of people who have had a stroke: a systematic review. Clinical Rehabilitation 21(10), 867–884. Brindle D. (2011) Unpaid carers save £119 billion a year. The Guardian. Retrieved from http://www.theguardian.com/society/ 2011/may/12/carers-save-uk-119bn-a-year on 3rd December 2012. Burns P.B., Rohrich R.J. & Chunc K.C. (2011) The levels of evidence and their role in evidence-based medicine. Plastic and Reconstructive Surgery 128(1), 305–310. Campbell N.C., Murray E., Darbyshire J., Emery J., Farmer A., Griffiths F., Guthrie B., Lester H., Wilson P. & Kinmonth A.L. (2007) Designing and evaluating complex interventions to improve health care. British Medical Journal 334, 455–459. Care Alliance Ireland (2013) Family Caring in Ireland. Care Alliance Ireland, Dublin, Ireland. Cheng H.Y., Chair S.Y. & Chau J.P.-C. (2014) The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: a systematic review and meta-analysis. Patient Education and Counseling 95(1), 30–44. Clarke M. (2008) Standardising outcomes in paediatric clinical trials. PLoS Medicine 5(4), 0521–0522. Corry M. & While A. (2009) The needs of carers of people with multiple sclerosis: a literature review. Scandinavian Journal of Caring Sciences 23(3), 569–588. Corry M., Clarke M., While A.E. & Lalor J. (2013) Developing complex interventions for nursing: a critical review of key guidelines. Journal of Clinical Nursing 22(17–18), 2366–2386. Department of Health and Children (Ireland) (2008) Tackling Chronic Disease: A Policy Framework for the Management of Chronic Disease. Department of Health and Children, Ireland. Eldred C. & Sykes C. (2008) Psychosocial interventions for carers of survivors of stroke: a systematic review of interventions based on psychological principles and theoretical frameworks. British Journal of Health Psychology 13(Pt 3), 563–581. Ellis G., Mant J., Langhorne P., Dennis M. & Winner S. (2010) Stroke liaison workers for stroke patients and carers: an individual patient data meta-analysis. Cochrane Database of Systematic Reviews 5, CD005066. Forster A., Smith J., Young J., Knapp P., House A. & Wright J. (2001) Information provision for stroke patients and their caregivers. Cochrane Database of Systematic Reviews 3, CD001919. Forster A., Brown L., Smith J., House A., Knapp P., Wright John J. & Young J. (2012) Information provision for stroke patients and

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A systematic review of systematic reviews of interventions for caregivers their caregivers. Cochrane Database of Systematic Reviews 11, CD001919. Glasscoe C.A. & Quittner A.L. (2003) Psychological interventions for cystic fibrosis. Cochrane Database of Systematic Reviews 3, CD003148. Kung J., Chiappelli F., Cajulis O.O., Avezova R., Kossan G., Chew L. & Maida C.A. (2010) From Systematic Reviews to Clinical Recommendations for Evidence-Based Health Care: Validation of Revised Assessment of Multiple Systematic Reviews (RAMSTAR) for Grading of Clinical Relevance. The Open Dentistry Journal 4, 84–91. Lee J., Soeken K. & Picot S.J. (2007) A meta-analysis of interventions for informal stroke caregivers. Western Journal of Nursing Research 29(3), 344–356. Legg L.A., Quinn T.J., Mahmood F., Weir C.J., Tierney J., Stott D.J., Smith L.N. & Langhorne P. (2011) Nonpharmacological interventions for caregivers of stroke survivors. Cochrane Database of Systematic Reviews 10, CD008179. Moher D., Liberati A., Tetzlaff J. & Altman D.G. (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Annals of Internal Medicine 151(4), 264–269. Mulrow C.D. (1994) Rationale for systematic reviews. British Medical Journal 309(6954), 597. Parahoo K. (2006) Nursing Research: Principles, Process and Issues. Macmillain, London. Richards D.A. & Borglin G. (2011) Complex interventions and nursing: looking through a new lens at nursing research. International Journal of Nursing Studies 48(5), 531–533. Rolland J.S. (1987) Chronic illness and the life cycle: a conceptual framework. Family Process 26, 203–221. Shepperd S., Lewin S., Straus S., Clarke M., Eccles M.P., Fitzpatrick R., Wong G. & Sheikh A. (2009) Can we systematically review studies that evaluate complex interventions? PLoS Medicine 6(8), e1000086. Smith J., Forster A., House A., Knapp P., Wright J. & Young J. (2008) Information provision for stroke patients and their caregivers. Cochrane Database of Systematic Reviews 2, CD001919. Smith V., Devane D., Begley C.M. & Clarke M. (2011) Methodology in conducting a systematic review of systematic reviews of healthcare interventions. BMC Medical Research Methodology 11, 15. Treweek S., Lockhart P., Pitkethly M., Cook J.A., Kjeldstrøm M., Johansen M., Taskila T.K., Sullivan F.M., Wilson S. & Jackson C. (2013) Methods to improve recruitment to randomised controlled trials: cochrane systematic review and meta-analysis. BMJ Open 3(2), 1–107. doi:10.1136/bmjopen-2012-002360. Watson J.M. & Torgerson D.J. (2006) Increasing recruitment to randomised trials: a review of randomised controlled trials. BMC Medical Research Methodology 6(1), 34. While A. & Dewsbury G. (2011) Nursing and information and communication technology (ICT): a discussion of trends and future directions. International Journal of Nursing Studies 48 (10), 1302–1310.

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Ellis et al. (2010) RCTs

Eldred and Sykes (2008) RCTs

Lee et al. (2007) RCTs

Brereton et al. (2007) RCTs

Author (date) & research design

To evaluate the impact of a healthcare worker or volunteer whose multi-dimensional roles have been grouped under the title ‘stroke liaison worker’

Closest informal carer of stroke patient, 1775 caregivers

Education package plus family counselling (Family systems theory) • Education package plus counselling (cognitive behavioural therapy) • Telephone psycho-educational group support (stress coping model) • Telephone or home visit social problem-solving partnerships (SPSP) (social problem-solving theory) • Eight weekly one-hour sessions • Group support or individual home visit (stress coping model) (n = 2) Stroke Liaison worker

•

Normal care or alternative service

No information/counselling/ group support delivered (n = 4) Written stress management information and description of carer stress and stroke (n = 1) Sham telephone calls (n = 1)

8 trials 40

7 trials 26

4 trials 30

Does not provide detail of the control intervention

Support and education interventions which varied as follows: one education program, two support programs, one in-home meeting with follow-up telephone sessions. Psychosocial interventions that provide counselling, support or training.

Caregivers of elderly stroke patients (N = 718)

Informal adult carers (age 16 years and above) of a survivor of stroke living in the community where the interventions provided to the carer or to the patient and their carer

8 trials 32

Most were usual care or conventional support training (one trial was unclear as to what the control group comprised).

Caregiver training, psycho-education telephone support group, home and telephone problem-solving telephone partnership, a nurse-led support and education programme, a support programme and a combination of education and counselling.

Adult family caregivers of people with stroke (N = 1290)

Determine what interventions specifically designed for caregivers are effective in improving outcomes and if there is an association between the presence of a conceptual basis and the effectiveness of an intervention. Examine the effectiveness of the interventions for improving mental health of caregivers of people with stroke by synthesizing individual studies Analyse interventions that target psychosocial functioning in carers of stroke survivors to understand how such interventions can reduce the burden of caring.

Number of studies & R-Amstar rating

Control

Interventions

Participant

Aim

Table 1 Characteristics of the included reviews.

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723

724 Psychosocial interventions (interventions applying the cognitive, behavioural and or social mechanisms of action that aimed to improve the psychosocial and physical well-being of caregivers and the outcomes of stroke survivors.

Family caregivers of adult patients post stroke 1723 family caregivers

Cheng et al. (2014) RCTs and quasiexperimental studies.

18 trials 39

21 trials (only 11 included caregivers) 41 Given patient education packet (4 trial) Usual care (13 trials) Usual care plus discussion on blood results (1 trial) Received nothing (1 trial) Wait control group (1 trial) Did not provide detail (1 trial) Usual care or without any active treatment

Interventions that provided information with the intention of improving the outcome of patients or their caregivers or both. 9 trials of active information giving 12 trials of passive information giving

Caregivers of patient with a clinical diagnosis of stroke or TIA. 1290 carer participants

Evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial well-being, quality of life and use of healthcare resources by stroke survivors

8 39

No care or routine care

Informal caregivers of stroke survivors 1007

Evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor Assess the effectiveness of information provision strategies in improving the outcome for stroke patients and/or their identified caregivers

Legg et al. (2011) RCTs

Forster et al. (2012) RCTs only

9 trials (only 2 included caregivers) 25

Not stated

Interventions that included a review of medications, an assessment of longer-term disability and care-giver needs, as well as the provision of information and signposting to other services. Any non-pharmacological intervention targeted towards the caregiver or the care-giving working conditions or any interventions that target the combination of caregiver and care-giving working conditions

Stroke survivors of stroke and their caregivers (379 caregivers)

To systematically review studies reporting the effectiveness of various models of follow-up in primary care on a range of outcomes

Allison et al. (2011) RCTs

Number of studies & R-Amstar rating

Control

Interventions

Participant

Aim

Author (date) & research design

Table 1 (Continued).

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Brereton et al. (2007)

No significant difference (100 participants, 1 trial)

Outcome

QoL

Table 2 Results.

MWES 0
277 (P < 0
01) 95% CI 0
118–0
435, (718 participants, 4 trials). Education programs: MWES 0
354 (P < 0
01) 95% CI 0
087–0
621, (338 participants, 2 trials). Support programs: MWES 0
234 (P = 0
02) 95% CI 0
037, 0
432 (330 participants, 2 trials). Theory-based intervention studies: MWES 0
253 (P < 0
09) 95% CI 0
036 to 0
542 (275 participants, 2 trials). Atheoretical intervention studies: MWES 0
287 (P < 0
01) 95% CI 0
098 to 0
477 (443 participants, 2 trials).

Lee et al. (2007) SF 36 Mental: SMD: 0
307, 95% CI 0
194 to 0
808, P = 0
230) (62 participants, 1 trial) SF 36 Physical: SMD 0
093, 95% CI 0
405 to 0
591, P = 0
714) (62 participants, 1 trial)

Eldred and Sykes (2008) Ellis et al. (2010) Greater QoL for carers in intervention group (112 caregivers, 1 trial) for mental health component of SF 36

Allison et al. (2011) MD 11
97 (95% CI 15
59 to 8
35, P < 0
001 (268 participants, 1 trial) MD 3
64 (95% CI 3
51 to 10
79, P = 0
32 (91 participants, 1 trial) Significant improvement reported in 5 of 8 subscales of SF- 36 in favour of information and support intervention (173 participants, 1 trial, no statistical results reported in original paper)

Legg et al. (2011) Active information studies: IQR at 1 year: intervention 80 (70–90), control 70 (60–80), P < 0
0001 (268 participants, 1 trial) No significant difference except for social functioning of SF36MD: 11
3 95% CI 0
09–22
7 (106 participants, 1 trial) No significant difference in groups over time (91 participants, 1 trial) Passive information studies: No significant difference in groups over time (49 participants, 1 trial)

Forster et al. (2012)

–

Cheng et al. (2014)

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725

726

Brereton et al. (2007)

Significant difference between groups at 2 and 5 weeks (P < 0
05 and 0
001), 30 participants, 1 trial Significant improvement in interventions group compared to control (P < 0
01, 74 participants, 1 trial) Significant reduction depression for intervention group with caregiver training at 3 and 13 months (P < 0
01, 300 participants, 1 trial)

Global family functioning (P < 0
01,188 participants, 1 trial)

Significant reduction in caregiver burden for intervention group with caregiver training at 3 and 13 months (P < 0
01, 300 participants, 1 trial)

Outcome

Depression

Family functioning

Burden

Table 2 (Continued). Eldred and Sykes (2008) –

–

–

Lee et al. (2007) –

–

–

SMD 0
04 (95% CI 0
05 to 0
14, P = 0
37, 1775 participants, 15 trials)

–

–

Ellis et al. (2010)

No significant findings reported (5 studies individually reported) Trend for less strain for carers in interventions group (1 of the 5 studies)

–

–

Allison et al. (2011)

SMD 0
01 (95% CI 0
34 to 0
36, P = 0
94, 125 participants, 2 trials)

SMD 0
61 (95% CI 0
85 to 0
37, P < 0
001), 173 participants, 5 trials SMD 0
06 (95% CI 0
31 to 0
18, P = 0
62, 256 participants, 2 trials SMD 0
20 (95% CI 0
17 to 0
57, P = 0
28), 116 participants, 2 trials)

Legg et al. (2011)

Active information studies: Median score at 12 months (IQR): intervention 32 (27–41), control 41 (36–50); P = 0
0001. (251 participants, 1 trial). No significant difference (no statistics reported, 39 participants, 1 trial)

Passive information studies: (mean depression score at six months (SD): intervention 5
8 (5
2), control 5
1 (3
2), 105 participants, 1trial). (Mean SD: intervention 5
7 (4
3), control 4
8 (3
9) 172 participants, 1 trial) Active information studies: (IQR): intervention 2 (1–3), control 3 (2–5); P < 0
0001, 300 participants, 1 trial)

Forster et al. (2012)

SMD 0
12, 95% CI 0
23 to 0
01, P = 0
3) (186 participants, 2 trials) SMD 0
18, 95% CI 0
13 to 0
48, P = 0
25) (167 participants, 3 trials)

SMD 0
19, 95% CI 0
11 to 0
31, P = 0
48) (n = 3 studies, 178 participants)

Cheng et al. (2014)

M. Corry et al.

© 2014 John Wiley & Sons Ltd

Lee et al. (2007) –

Brereton et al. (2007)

Intervention group (significant improvement in carer knowledge about stroke at 6 months and 1 year, (P < 0
01, 188 participants,1 trial) Intervention group (significant improvement in carer competence (P < 0
05, 88 participants, 1 trial) Intervention group (significant improvement in carer confidence of knowledge, of patient care (P < 0
01) and carer self-efficacy (P < 0
01) and seeking social support at 6 months only (P < 0
01) 257 participants, 1 trial) Problem-solving, communication (P < 0
01, 188 participants, 1 trial) Significant difference between groups in preparedness to care at 2 and 5 weeks (P < 0
05 and 0
001), 30 participants, 1 trial Significant difference between groups in preparedness (P < 0
001), and 3 of 4 elements of problem-solving (P < 0
01), 74 participants, 1 trial

Outcome

Caregiver competence (to include knowledge, preparedness to care)

Table 2 (Continued).

SMD: 0
326, 95% CI 0
095 to 0
747, P = 0
129) (86 participants, 1 trial)

Eldred and Sykes (2008) –

Ellis et al. (2010) No significant differences report (379 participants, 2 individual trials)

Allison et al. (2011) MD 8
67 (95% CI 11
30 to 6
04, P < 0
001) 155 participants, 1 trial

Legg et al. (2011) SMD: 0
74, 95% CI 0
06–1
43, P = 0
03 (336 participants, 4 trials). No subgroup analysis for effects of active/passive information interventions separately

Forster et al. (2012)

SMD: 0
09, 95% CI 0
49 to 0
31, P = 0
12) (260 participants, 2 trials)

Cheng et al. (2014)

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727

728 –

–

–

MD, mean difference; SMD, standardized mean difference; RCT, randomized controlled trial; RR, risk ratio; OR, odds ratio.

Physical health

–

–

–

Anxiety

Significant reduction caregiver anxiety for intervention group receiving caregiver training at 3 and 13 months (P < 0
01, 300 participants, 1 trial) –

–

–

Ellis et al. (2010)

Social functioning (includes social activities)

Eldred and Sykes (2008) –

Lee et al. (2007) –

Brereton et al. (2007)

Stress

Outcome

Table 2 (Continued).

Unclear if findings relate to carer or care recipient

–

–

–

Allison et al. (2011)

–

RR: 0
42 (0
13–1
29, P = 0
13)), (271 participants, 1 trial)

Mean difference 8
67 (95% CI 11
30 to 6
04, P < 0
0001, (155 participants, 1 trial) SMD 0
29 (95% CI 0
86 to 0
27, P = 0
11, 219 participants, 2 trials). MD 0
34 (95% CI 1
64 to 0
96, P < 0
61, (183 participants, 1 trial) MD 2
02 (95% CI 6
58 to 2
54, P < 0
39, (28 participants, 1 trial)

Legg et al. (2011)

–

Active information studies: (median score at 1 year: intervention 27 (23–30), control 26 (24–30), 266 participants, 1 trial; no statistics reported, 39 participants, 1 trial). –

OR 1
13 (95% CI 0
65–1
97, P = 0
65, 498 participants, 4 trials)

Forster et al. (2012)

–

–

–

–

Cheng et al. (2014)

M. Corry et al.

© 2014 John Wiley & Sons Ltd

JAN: SYSTEMATIC REVIEW

Depression Four reviews reported on the outcome of depression (Brereton et al. 2007, Legg et al. 2011, Forster et al. 2012, Cheng et al. 2014). Cheng et al. (2014) reported no significant difference in depression between the intervention and control groups (Standardized Mean Difference (SMD): 0
18, 95% CI 0
13 to 0
48, P = 0
25; 167 participants, 3 trials) using different outcome assessment tools (Distress (GHQ), Zeressen Depression Scale and the CES-D). The included studies also had small sample sizes (n = 17, 62 and 88, respectively) suggesting a lack of power to detect any real differences. Legg et al. (2011) reported significant differences in favour of teaching procedural knowledge (SMD 0
61, 95% CI 0
85 to 0
37, P < 0
001, 173 participants, 5 trials), but no benefit for support and information interventions (SMD 0
06, 95% CI 0
31 to 0
18, P = 0
62, 256 participants, 2 trials) and psycho-educational interventions (SMD 0
20, 95% CI 0
17 to 0
57, P = 0
28, 116 participants, 2 trials). Forster et al. (2012) did not have sufficient trial data to pool data on depression. Results from one study that evaluated passive and active information on depression using the Hospital Anxiety and Depression Scale were significant for active information interventions (IQR: intervention 2 (1–3), control 3 (2–5); P < 0
0001 at 1 year; 300 participants, 1 trial). No significant differences between the intervention and control group were reported for two trials evaluating passive information interventions (mean depression scores (SD), intervention 5
8 (5
2), control 5
1 (3
2) at 6 months; 40 participants, 1 trial) and (P > 0
05, 172 participants, 1 trial). Brereton et al. (2007) reported significant differences for three individual trials reporting on telephone social problem-solving partnership and caregiver training interventions (P < 0
01).

Family functioning Two reviews reported on family functioning (Brereton et al. 2007, Cheng et al. 2014). Brereton et al. (2007) found a significant difference between the control and intervention groups on Global family functioning (P < 0
01, 188 participants, 1 trial). Pooled results in Cheng et al. (2014) found no evidence of benefit for a psychosocial intervention (SMD 0
12, 95% CI 0
23 to 0
01, P = 0
3, 186 participants, 2 trials).

Burden Cheng et al. (2014) found no statistically significant differences between the groups for caregiver burden (SMD 0
18, 95% CI 0
13 to 0
48, P = 0
25; 3 trials, 167 partici© 2014 John Wiley & Sons Ltd

A systematic review of systematic reviews of interventions for caregivers

pants). All three studies evaluated psychosocial interventions; however, all three used different burden measurement scales (the Burden Scale, the Caregiver Strain Index and the burden interview). In addition, the sample sizes in the studies were small (16–88 participants) limiting the generalizability of this result. Forster et al.’s (2012) review found that an active information intervention reduced caregiver burden both in the short (3 months) and long term (12 months), in one trial but not in a second trial (IQR at 12 months: intervention 32 (27–41), control 41 (36–50); P = 0
0001; 251 participants, 1 trial). Ellis et al. (2010) and Legg et al. (2011), respectively, found no benefit for stroke liaison worker interventions (SMD 0
04 95% CI 0
05 to 0
14, P = 0
37, 1775 participants, 15 trials) or for psychosocial interventions (SMD 0
01, 95% CI 0
34 to 0
36, 125 participants, 2 trials). Although Allison et al. (2011) reported a trend for less strain in the intervention group, these findings were not significant. Brereton et al. (2007) reported statistically significant differences in burden in favour of a combined home and telephone social problem-solving partnership compared to the control group at 3 and 13 months (P < 0
01, 300 participants, 1 trial).

Caregiver competence Six reviews reported on the outcome of caregiver competence (Brereton et al. 2007, Eldred & Sykes 2008, Allison et al. 2011, Legg et al. 2011, Forster et al. 2012, Cheng et al. 2014). Forster et al. (2012), pooling results from four of six studies, demonstrated that the provision of information was effective for caregiver competence when compared with controls (SMD 0
74, 95% CI 0
06–1
43, P = 0
03; 336 participants, 4 trials). There was insufficient data to evaluate the effects of active and passive information interventions separately. All four studies used different outcome measurement instruments (e.g. stroke care information trust, 26-item knowledge of stroke scale and the 17-item knowledge of stroke and services). Cheng et al. (2014) reported the findings from two trials evaluating psychosocial interventions on caregiver self-perceived adequacy of own performance. The pooled findings from these studies did not demonstrate statistically significant differences between the intervention and control groups (SMD 0
09, 95% CI 0
49 to 0
31, P = 0
12, 260 participants, 2 trials). Legg et al. (2011) reported a significant difference favouring non-pharmacological interventions (MD 8
67 (95% CI 11
30 to
04, P < 0
001) 155 participants, 1 trial). Brereton et al. (2007) reported intervention benefit for caregiver competence (P < 0
05, 0
01 and 0
001 across 5 separate trials). In the Eldred and Sykes (2008) review, 729

M. Corry et al.

one study that evaluated a psychosocial intervention demonstrated no statistically significant difference between the groups in caregiver competence (SMD 0
326, 95% CI 0
095 to 0
747, P = 0
129, 86 participants, 1 trial). No positive benefit was reported in the narrative summary of findings in Allison et al. (2011).

Stress Two reviews reported on the outcome of caregiver stress (Legg et al. 2011, Forster et al. 2012). Forster et al. (2012) reported no effect (Odds Ratio (OR) 1
13, 95% CI 0
65– 1
97, P = 0
65, 498 participants, 4 trials), however, Legg et al. (2011) reported a positive benefit for non-pharmacological interventions in one trial (MD 8
67 (95% CI 11
30 to 6
04, P < 0
0001, 155 participants, 1 trial), but not in trials on other interventions (SMD 0
29, 95% CI 0
86 to 0
27, P = 0
11, 219 participants, 2 trials; MD 0
34 (95% CI 1
64 to 0
96, P < 0
61, 183 participants, 1 trial); MD 2
02 (95% CI 6
58 to 2
54, P < 0
39, 28 participants, 1 trial). Similar to Forster et al. (2012), a variety of instruments were used to measure stress including the relative stress scale, carer strain index, General Health Questionnaire-28 and an original devised measurement instrument.

Social functioning One review reported on the outcome of social functioning (Forster et al. 2012). Active information interventions, provided with the intention of improving caregiver social functioning, were not found to be effective (median score at 1 year: intervention 27 (23–30), control 26 (24–30), 266 participants, 1 trial; no statistics reported, 39 participants, 1 trial).

Anxiety Two reviews reported on the outcome of anxiety (Brereton et al. 2007, Legg et al. 2011). Caregiver training was found to be of benefit in favour of the intervention (P < 0
01, 300 participants, 1 trial) (Brereton et al. 2007). No benefit was reported by Legg et al. (2011) (Risk ratio 0
42, P = 0
13, 271 participants, 1 trial).

Physical health In a review that reported on physical health, it was unclear whether the results pertained to the caregiver or the care recipient (Allison et al. 2011).

730

Discussion This is the first systematic review of published systematic reviews, of which the authors are aware, that brings together the evidence relating to interventions supporting caregivers of people with chronic conditions. This review synthesizes the evidence from eight reviews. Despite the relatively small number of reviews, when the wide range of chronic conditions is considered, the findings from this review are informative as they give an overview of level 1a evidence on interventions for caregivers. Level 1a evidence is the highest level of evidence from which researchers and clinicians can make strong recommendations for practice (Burns et al. 2011). The findings provide evidence of benefit for education and support programmes for improving caregivers’ QoL and for information giving interventions for improving caregiver competence when a caregiver knowledge outcome measurement instrument was used. Results from individual trials suggest that active information interventions may also be helpful for improving depression and care burden scores, but there were insufficient trial data to pool findings on these outcomes and further research is needed to substantiate these findings. Psychosocial interventions were not found to have any effect on depression, family functioning, caregiver competence or burden. Similarly, no evidence of benefit was reported for any intervention for improving social functioning. Some benefit was reported for interventions reporting on stress, family functioning and caregiver competence as expressed by problem-solving and preparedness to care. These findings must be interpreted with caution, however, as the findings from reviews receiving lower quality ratings were not always supported by reviews that received higher quality ratings (e.g. positive results for family functioning in Brereton et al. (2007) with a quality rating of 27 compared with Cheng et al. (2014) with a quality rating of 38). Of note in this review was the lack of systematic reviews of interventions for caregivers other than those caring for people with stroke, highlighting an overall lack of evidence on interventions for caregivers of people with other chronic conditions. This may reflect the few trials evaluating interventions for caregivers resulting in few systematic reviews of interventions for carers of people with chronic conditions, other than stroke, or that the completed studies are of insufficient quality for inclusion in a systematic review. There were only 66 original trials in the eight systematic reviews which is a relatively modest number. Furthermore, these trials tested a variety of interventions with relatively small samples. For example, the sample sizes across the © 2014 John Wiley & Sons Ltd

JAN: SYSTEMATIC REVIEW

individual studies ranged from 16 (Cheng et al. 2014) - 323 (Ellis et al. 2010, Legg et al. 2011). This presents a challenge for synthesizing the evidence as the interventions were not all comparable and the trials were largely underpowered making it difficult to accurately ascertain evidence of benefit or otherwise. Most of the interventions can be described as complex interventions, as they comprised many components (Campbell et al. 2007). In addition, the outcomes may have been heavily influenced by context creating variability across the interventions making the synthesis of the findings in a systematic review exceptionally challenging (Shepperd et al. 2009). The use of different frameworks and models for the development of tested interventions make comparisons difficult (Corry et al. 2013). This is because the identification of the individual and essential components of the interventions yielding the effect is challenging. A heterogeneous approach to intervention inclusion in a systematic review may be informative for researchers, because it helps identify what type of intervention in general is likely to yield a positive impact on outcomes and therefore warrants testing. Such a broad approach is, however, less helpful for practitioners who need guidance about the exact components of interventions which yield benefit to carers of individuals. Thus, for the findings of systematic reviews to be informative for practice development, greater attention to the homogeneity of interventions is required. In all eight reviews, the challenges of recruitment and loss at follow-up, were highlighted as potential sources of bias. Recruiting and retaining adequate samples of caregivers in clinical trials is a recurrent challenge for researchers (Watson & Torgerson 2006, Treweek et al. 2013). This was evident in many of the studies in the selected reviews which, despite intending to undertake sufficiently powered trials, failed to achieve their required sample sizes. Having samples sizes large enough to detect change where it exists is important to avoid a Type II error (Breakwell et al. 2000). A Type II error occurs when no difference is found when one in fact exists (Parahoo 2006). Although pooled results from several individual trials increase power and precision (Mulrow 1994), small sample sizes in original studies does not guarantee power to detect significant differences, if they exist. For example, the pooled findings from three studies (n = 167) in Cheng et al.’s (2014) review were not significant, yet the findings from an individual trial in Legg et al. (2011) review, with a sample of 268, yielded statistically significant results in favour of the intervention group. This emphasizes the necessity to obtain sufficient sample sizes in trials, to combine in systematic reviews, to increase estimates of effectiveness for interventions on outcomes of importance. © 2014 John Wiley & Sons Ltd

A systematic review of systematic reviews of interventions for caregivers

The use of different outcome measurement instruments across the studies also has an impact on power and creates additional challenges for pooling findings from individual trials. Measuring the same outcome in different ways, at different time points and settings makes comparison across studies and consequently pooling of outcomes, problematic (Clarke 2008). In this review, the number of different measurement instruments used for each of the outcomes was high, given the small number of trials measuring each outcome. For example, eight different measurement instruments were used across 12 studies and three different instruments were used across three pooled studies in one systematic review (Cheng et al. 2014). Likewise, over eight different instruments were used across 11 trials that measured depression in one systematic review (Cheng et al. 2014). It is interesting to note, however, that for QoL, an outcome for which benefit was demonstrated, that measurement scales were confined to the SF36 and the EuroQol. The consistent use of the same measurement instrument is likely to enhance precision when results are pooled. Clarke (2008) has highlighted the need to agree on the most useful measurements for defined outcomes because there are significant drawbacks to synthesizing findings, in a clinically meaningful way, when too many different measurement instruments are used. The failure of interventions to yield desired change may reflect the challenges faced by researchers in designing sufficiently robust interventions to effect change. Additionally, some outcomes may be more amenable to change with single component interventions, for example, knowledge or preparedness to care while others may require more intensive or multi-component interventions to realize the desired effect. Likewise, caregiver needs are complex and may require multi-component interventions to yield benefit and address their varied needs. Such interventions may be resource intensive and beyond the scope of smallscale studies conducted with limited funding. Furthermore, the varied nature of the interventions and the impact of the context/setting is difficult to ascertain and adjust for, when performing a systematic review (Shepperd et al. 2009). Clearly, these challenges are similar, if not more difficult to manage, in a systematic review of systematic reviews.

Strengths and limitations The inclusion of eight systematic reviews that were overall of relatively high methodological quality based on R-AMSTAR ratings strengthens the evidence reported in this review of reviews. Although the number of studies 731

M. Corry et al.

reporting on any one outcome was relatively small, the sample sizes for pooled results were of a reasonable size, in particular for the outcomes of social functioning and stress, where no beneficial effect was reported when individual trial results were pooled. The generalizability of the findings beyond stroke caregivers is, however, limited although the findings may indicate the potential of similar interventions for other caregiver groups. Caregiving has an impact on caregivers of people with chronic conditions in similar ways, in particular in terms of reduced QoL and burden, increased stress and knowledge deficits (Corry & While 2009). It is, therefore, probably that the interventions that have positive benefit for stroke caregivers may also benefit caregivers of people with other chronic conditions that impact on the individual in a similar way. This review of reviews, built on stringent review inclusion criteria, provides the best available evidence to inform practice and research. The findings have implications for policy makers in recommending what interventions should be implemented. The most promising of interventions appear to be those that provide education, support and information all of which involve some form of information exchange between the interventionist and the caregiver. Similarly the consistent evidence relating to the lack of benefit for psychosocial interventions is important as it suggests that funding and other resources may be better channelled towards interventions that focus on educating caregivers or using an active information giving approach. In addition to being more effective, education and active information giving interventions may be less resource intensive and may be amenable to multiple delivery approaches. It is important that future studies of caregiver interventions combine costeffectiveness evaluations in their designs and also explore innovative methods for delivery including the use of information and communication technology (While & Dewsbury 2011).

Conclusion This systematic review of reviews highlighted the limited number of reviews on interventions for caregivers of those with chronic conditions despite the heavy dependence of health services on the caring capacity of caregivers. The findings support the use of education and support interventions to improve caregiver QoL and the use of active information interventions to reduce depression and burden. However, the findings were derived from studies of stroke caregivers highlighting the need to test interventions with caregivers of those with other chronic conditions. 732

Caregiver health is important because caregivers provide billions of care hours annually and are essential to the effective running of health services. Interventions which enable caregivers to continue to provide care and empower them to maintain their own health and well-being are essential. The complex nature of caregiving calls for a multi-disciplinary approach to the development and testing of interventions if they are to yield the desired effect of increased health and well-being. There is a need for rigorously tested multi-disciplinary generic and disease specific caregiver interventions to inform healthcare practice at a time when all healthcare systems are aiming to reduce hospital admissions and increase home care.

Funding Funding has been obtained from the Health Research Board (Ireland) by MC to develop and test a complex nursing intervention. This literature review emanated from that work.

Conflict of interest One of the authors (MC) has developed and is currently testing a telephone support intervention for caregivers.

Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:

• •

substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.

Supporting Information Additional supporting information may be found in the online version of this article at the publisher’s web-site.

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