Exploring the benefits of respite services to family caregivers: methodological issues and current findings

Study Aim/Purpose: This literature review focuses on methodological issues that have impeded reliable and valid research studies involving respite care. There is special emphasis on how these methodological issues affect conducting research and practice settings, and how these issues may limit, or in some cases should limit the research designs available to conduct outcome studies. The authors list a number of suggestions about how these issues may be addressed or resolved. 

Summary of Key Findings: Drawing examples primarily from published work on out-of-home adult day services and its impact on family caregivers, the authors discuss several challenges to the validity of randomized controlled trials (RCT) research on respite including: the usual small sample size of respite studies; differential attrition between the treatment and control groups; and inadequate implementation of the respite service (e.g., offering a too low level of respite to have an effect). The authors also suggest that the inability to measure change in outcomes may be because the caregivers being studied either begin respite early and thus have low levels of stress and burden at study baseline or because the caregivers of both groups have very high levels of stress and thus over time there will likely be regression to the mean, obscuring differences between the groups due to respite use. They also suggest that the outcomes now being measured be examined to focus on those most reasonable to expect of respite and to consider selecting outcomes based on caregivers’ goals. 

The authors lay out several alternative research designs and recommend using a quasi-experimental treatment/control design. They recommend that the potential negative effects of not randomizing control and treatment groups be addressed in several ways, including (1) selecting a control sample from a different setting or community where the treatment is not available; and (2) matching for and adjusting for covariates such as caregiver and care recipient characteristics, their propensity to use respite, and baseline measures for key outcomes associated with respite use. The authors also recommend the use of a quasi-experimental design they call “removed treatment and reversal” that measures and compares caregivers’ outcomes on the days they use respite to the days they don’t use respite. The authors also recommend the use of interrupted time-series designs when identifying or constructing a control or comparison group is not possible. 

Authors’ Discussion/Conclusions: The authors conclude that reliance on RCTs restricts the range of research that can be conducted in community settings and limits the testing of innovative models of change that could lead to more effective individualized treatment approaches for respite as well as for many other community interventions. In addition to recommending the use of quasi-experimental design in future research, they also suggest that multiple types of outcome/impact measures be used, including self-reports, observations and biological measures.