Staff and family views of alternative respite services for adults with intellectual disabilities – aims, outcomes and experiences

Study Aim/Purpose:  This study explored the perceptions and experiences of respite service managers and family members regarding six models of respite services recently funded in Ireland to promote greater social integration and normalization of people with intellectual disabilities (ID). These respite models were funded specifically to provide alternatives to overnight stays at a facility, which had been the traditional and primary form of respite services provided in for people with ID. The six models explored in this qualitative study were: 1) host families providing both day and night respite breaks to an individual with disability in another home2) customized short breaks (e.g. weekends) to families who go away, provided to families who also use traditional overnight respite services; 3) community-based respite spent in groups of up to 20 people with ID and staffed by volunteers; 4) supported short-term independent living for people who plan to live independently in the future in a community setting; and 5) in-home and activity-based respite based on the person’s own interests and 6) emergency response respite with service provided in the person’s home.

Summary of Methods:  The authors conducted semi-structured interviews (in person or by phone) with 32 family caregivers and 6 managers of different types of alternative respite services. The interviews asked respondents about the aims, outcomes, and their views and experiences with respite services for persons with ID. The interviews lasted an average of 11 minutes, ranging from 2 to 26 minutes. Researchers conducted thematic analysis by coding the transcribed interviews, with cross-coder checks to ensure inter-rater reliability and a final review by the senior researcher, who had more experience with programs and services for persons with ID.

Summary of Results:  The authors note that respondents provided diverse perspectives on the nature and aims of alternative respite services, though they commonly described the respite service they managed or received as both providing a break (for the family and/or the person with ID) and as an outcome for the person with ID. With regard to aims for people with ID, the responses focused on helping support their personal goals, independence, and social opportunities. With regard to outcomes achieved, common themes from managers and family members focused on supporting the personal development and skills of the person with ID. However, there was little consistency in these comments, as it was just as common for respondents to report a change for the person with ID as it was for them to report no change. Managers were more likely to focus on positive outcomes for the families than the caregivers, mentioning again the provision of breaks, helping families to sustain their role as caregivers, and providing diverse options for the family.

Study Limitations (as cited by authors):  The authors note that study participants each had experience with alternative and traditional overnight respite models. Thus,  interview responses were likely based on their experience with the traditional overnight service model. The authors also mentioned that the findings were not translatable to respite for all persons with ID because this study included only services for adults with mild or moderate ID. They also highlight that the programs included in the study received funding designed to promote innovation and service development. As a result, their findings may not be translatable to other respite settings.

Authors’ Discussion/Conclusions:  The authors recommend that, in designing respite for persons with ID, the focus should be on improving outcomes for the care recipient, which was the key program aim perceived by both program managers and caregivers in this study. They further recommend that improving outcomes for the care recipient be explicit in defining what respite care along with the importance of working toward goals tailored to each person and their stage of life.