Respite care and short breaks for young adults aged 18-40 with complex health-care needs: mixed-methods systematic review and conceptual framework development.

Author(s): Knighting, K., Pilkington, G., Noyes, J., Roe, B et al.

Published In: Health Services and Delivery Research, 9 (6). DOI: 10.3310/hsdr09060. (2021)

Study Aim/Purpose:  The authors’ review focused on respite care and short breaks for young adults aged 18-40 with complex medical needs, examining extant literature on the services provided, policies, service effectiveness and cost-effectiveness, and the experience of the target population.

Summary of Methods:  The authors searched 14 different electronic databases, additional databases on the Cochrane library, and databases from international clinical trials registers. They searched and reviewed additional published and unpublished sources, and conducted an “international call for evidence.” Multiple independent reviewers reviewed these databases and sources using the SPICE (Setting, Perspective, Intervention/phenomenon of interest, Comparison and Evaluation) framework to select and extract study/source characteristics and evidence of outcomes. Reviewers assessed study quality using content analysis and graded confidence in the qualitative and mixed-methods evidence using the GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) methodology. From the 126,267 records identified, the authors identified 69 sources that met the review’s inclusion criteria. In addition to reviewing and summarizing the quantitative and qualitative findings, the authors used the review to categorize the different types of respite care programs provided for this population and their policy goals. They then created logic models describing the inputs, outputs and outcomes for each type of respite care.

Summary of Key Results:  The authors were able to identify and describe seven types of respite care for this population group: residential, home-based, day care, community, leisure/social provision, funded holidays, and emergency care. They identified two prominent policy goals of these programs:  1) early transition planning for young adults and 2) prioritizing provision of respite care services according to the young adult’s need. However, the authors concluded that there was no quantitative evidence on effectiveness or cost-effectiveness of respite care for this population.

The authors summarized implementation and satisfaction findings, including the factors that facilitate or pose barriers to access to and acceptance of the program, service quality, and potential negative effects or program weaknesses experienced. Factors that facilitated accessibility and acceptance included trusted and valued relationships, independence and empowerment of young adults, peer social interaction, developmental/age-appropriate services, and high standards of care. Common barriers included transition to adult services, paperwork, delays in referral to and provision of services, and the distance required to travel to out-of-home respite. They also concluded that this population was provided poor transition services, as evidenced by either loss of services or provision of services inappropriate for the needs of young adults. Potential negative effects and limitations of the services provided included stress and anxiety related to whether the care provided was safe, frustration and distress arising from unmet needs, parental exhaustion, and lack of opportunities to socialize or develop independence.

Limitations of Studies Reviewed (as cited by authors):  The primary limitation identified for this review was the lack of any quantitative or mixed methods findings on effectiveness or cost-effectiveness of respite care for young adults with complex health needs. Additionally, few studies examined respite care models for young adults other than short-term residential programs.

Authors’ Discussion/Conclusions:  The authors concluded that the care needs of young adults with complex needs and the stated policy goals of respite care for this population are not being met. They stressed that young adults with complex needs often “fall off the cliff” after participating in a more comprehensive system of care until they reach age 18. They recommended the development of a core set of outcome measures that can be used in future research to quantify respite’s impacts and cost-effectiveness and thus support the development of much-needed effective respite programming and policies for this population.