Author(s): Shaw, C., McNamara, R., Abrams, K., Cannings-John, R., Hood, K., Longo, M., Myles, S., O’Mahony, S., Roe, B., and Williams, K.
Published In: Health Technology Assessment, 13: 20
Study Aim/Purpose: This article provides a systematic review of published studies up through 2008. The review includes quantitative studies on the effectiveness and cost-effectiveness of respite on the well-being of informal caregivers of frail and disabled adults aged 65 years and older who live in the community. The review also summarizes findings of qualitative studies on these caregivers’ needs and views related to respite services and perceived barriers to utilizing respite.
Summary of Methods: Authors searched the electronic databases MEDLINE, EMBASE, PsychInfo, AMED, ASSIA, IBSS, CINAHL, Econlit, Social Care Online, Sociological Abstracts, Web of Science, Cochrane databases of reviews and trials, PubMed Cancer Citations, Scopus, and databases of ongoing research. Quantitative studies were included in the review if they: 1) assessed an intervention to provide the caregiver with a break from caring and assessed caregiver outcomes; 2) the care recipient population was aged 65 years or older or included subsample analysis of participants over age 65; and 3) the respite intervention was compared with no exposure to respite or with exposure to another intervention. The search resulted in finding 104 quantitative studies and the synthesis was carried out separately for each type of caregiver outcome reported. The review of qualitative studies used thematic analysis exploring similarities and differences in the findings of a total of 70 papers that were identified for inclusion, focusing on findings related to caregivers’ needs and factors influencing their use of respite care.
Summary of Key Results: The authors state that though the meta-analysis found “some evidence to support respite having a positive impact on caregivers”, “the evidence was limited and weak.” The following were key findings of impact on caregivers:
- Caregiver burden was reduced at 2-6 months’ follow-up in studies with single samples, but not in randomized control studies (RCT) or quasi-experimental studies.
- Caregiver depression was reduced in the short term in RCTs but only for respite home care, not respite provided in out-of-home day care.
- No effect was found on caregiver anxiety. However, respite did have positive effects on morale, anger and hostility. Single-group studies suggested that perceived quality of life may have been worse after respite use.
The separate analysis of qualitative studies found that uptake of respite care was influenced by a variety of factors including: caregiver attitudes toward caring and respite provision; the caregiving relationship; the acceptability to, and impact of respite care on care recipients; hassles resulting from the use of respite care; quality of respite care, and the appropriateness and flexibility of the respite provided. Most common needs reported by caregivers in the qualitative studies were: information about services, support beginning early in their caregiving careers, access to a variety of services and flexibility in how those services are provided, reliable transportation supports, and respite care that provides socialization and stimulation for care recipients, including activities appropriate for their abilities and interests.
Limitations of Studies Reviewed: The authors note that there was a lack of good-quality larger trial studies and that respite interventions studied varied greatly from one another. They noted limited process measures with “poor descriptions of the characteristics of the respite that was provided” and “limited provision and uptake of the respite services that were offered” in the studies. They also noted a lack of economic analyses of respite.
Authors Discussion/Conclusions: Overall, the authors conclude that the implications of their findings for health services are limited. However, they did suggest that a range of respite services is “probably most appropriate” and that such services be responsive to caregivers’ and care recipients’ characteristics and needs and to how their needs change over time.
The authors make several recommendations for future evaluations of respite based on their findings. Foremost, they recommend that before extensive RCT or quasi-experimental comparison studies, developmental work is needed to quantify caregiver needs and preferences, to define the characteristics of an appropriate intervention, and to define and validate respite outcomes for care recipients. The authors recommend that future trial studies measure appropriate short- and long-term outcomes for caregivers and care recipients―including those in ethnic minority groups whose needs may differ. They also highlight a need for economic analyses of respite and recommend that future research address the optimum time point for provision of respite and utilize process evaluation measures. With regard to qualitative research, the authors highlight a need to explore the meaning of a “mental break” for caregivers and how respite interventions can help caregivers achieve this as well as research on how to improve communication of service availability to caregivers.
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