ABSTRACT
Background: Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately supported is key to reduce the financial, physical, mental and social toll which long-standing inadequately supported care giving may evoke. Respite care is such a support service offered to caregivers and care-recipients with ID. Objective: Part of a larger study aimed at developing a respite care service framework for persons with ID for South Africa, the review aimed to elucidate what principles and practices inform current respite care services for this population globally. Method: The Joanna Briggs Institute (JBI) scoping review framework guided the review. Databases were searched using key and surrogate terms for relevant literature published from 2006 to 2021. Results: Thirty-one sources met the inclusion criteria from 417 screened sources of evidence. These were published between 2006 and 2020, and included grey and peer-reviewed articles, the latter mostly mixed design. Information on respite care service characteristics, principles, practices, guidelines, evaluations and impacts were found for high- but not low-and-middle-income countries (LMICs). Conclusion: There is an existing knowledge base that can be drawn on to inform the development of quality respite care. The lack of published information on respite care in LMICs necessitates further research to ensure contextually appropriate respite care developments in these settings. Contribution: This study contributes to the knowledge base on respite care for persons with ID and points out the research gap in LMICs.
ABSTRACT
During South Africa's first two decades as a democracy, the Western Cape Province has undergone radical changes to its healthcare system in an effort to address the extensive socioeconomic inequities that remain in the aftermath of the apartheid era. Although progress has been made, there is a clear need for interventions that support parents and children receiving health services in the public sector who are vulnerable to multiple psychosocial risks associated with extreme poverty. In this mixed-method study, we examined the feasibility and acceptability of adapting an evidence-based parenting intervention called Mothering from the Inside Out that was developed for mothers who are vulnerable to similar risks in the United States. Using qualitative methods, we documented the collaborative process that was guided by principles of community-based participatory research and examined themes in the Western Cape collaborators' perspectives about the feasibility and acceptability of the intervention. Using quantitative methods, we tested the preliminary efficacy of the adapted version of Mothering from the Inside Out for improving maternal reflective functioning and mother-child interactions. Although findings from both study components indicated preliminary promise, a number of obstacles and challenges at multiple levels underscore the need for (a) flexibility and contextual support for intervention research conducted in under-resourced communities, (b) clinical sensitivity to the unique experiences of parents rearing children in highly stressful, under-resourced environments, and (c) equal partnerships that allow the expertise of local providers to inform the design proposals of consulting investigators.
