The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review

Abstract

IntroductionThe number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models.Methods and analysisA mixed-methods systematic review conducted in two stages: (1) knowledge map and (2) evidence review. We will comprehensively search multiple electronic databases; use the Citations, Lead authors, Unpublished materials, Google Scholar, Theories, Early examples, and Related projects (CLUSTER) approach, search relevant websites and circulate a ‘call for evidence’. Using the setting, perspective, intervention/phenomenon of interest, comparison and evaluation framework, two reviewers will independently select evidence for inclusion into a knowledge map and subsequent evidence review, extract data relating to study and population characteristics, methods and outcomes; and assess the quality of evidence. A third reviewer will arbitrate where necessary.Evidence will be synthesised using the following approaches: quantitative (narratively/conducting meta-analyses where appropriate); qualitative (framework approach); policy and guidelines (documentary analysis informed approach). An overall, integrated synthesis will be created using a modified framework approach. We will use Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-Confidence in the Evidence from Reviews of Qualitative Research to assess the strength and confidence of the synthesised evidence. Throughout, we will develop a conceptual framework to articulate how service models work in relation to context and setting.Ethics and disseminationEthical approval is not required as this is a systematic review. We will present our work in academic journals, at appropriate conferences; we will disseminate findings across networks using a range of media. Steering and advisory groups were established to ensure findings are shared widely and in accessible formats.PROSPERO registration numberCRD42018088780.

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“…The process of knowledge mapping has been described as proffering a mode of associating information from numerous sources with the aim of understanding the "dynamics at play in a health system or area of work" ( [15]; p. 636). Knowledge mapping exercises are underpinned by the key principles of being "inclusive to ensure identification of all relevant evidence" ( [16]; p. 3) whilst enabling a comparable and translatable snapshot of data [15]. The process can be broken down into five stages of data handling (as seen in Figure 1).…”

Self-Efficacy Mediates Acculturation and Respite Care Knowledge of Immigrant Caregivers

“…The results from a meta-analysis reported the prevalence of depression and being burdened in caregivers as 31.24% and 49.26%, respectively [2]. The aim of respite care services is to reduce burdening incidents and to help prevent the burden on family caregivers [3,4]. Caregiver participants in previous research agreed that accessing respite care services was beneficial to both care recipients and themselves [5], and reported a positive sleep quality when care recipients are admitted for a temporary residential respite period [6].…”