Person‐centred respite supports: The perspectives of adults with intellectual disabilities in Ireland

Abstract

Accessible SummaryThis study looks at the experiences of adults with intellectual disabilities using respite services in Ireland. Some adults stayed overnight in a respite house, and others were part of evening and weekend groups.Overall, the adults were happy with their respite supports.They suggested nine important ways that respite services can meet a person's needs and support them to do the things they want to do.The adults said it was important to have fun, time and space, choice, and to be independent at respite. They should have a chance to build friendships and be in groups that work well together. It is important to get on well with staff too. Respite supports must meet different needs. Persons with disabilities should take part in the design and management of respite supports.A national policy for respite in disability services is needed in Ireland. The views and suggestions of persons with disabilities should be considered if a policy is developed.AbstractBackgroundRespite supports are highly valued by persons with disabilities and their families/carers. In Ireland, there has been regular commentary in relation to a lack of respite services, with users and other stakeholders reporting limited access, inequity of provision, and long waiting lists for support.Materials and MethodsMuch of the research on respite focuses on the views of carers, with little account of the experiences of persons with disabilities. This study examines the perspectives of twenty‐eight adults with intellectual disabilities; most are regular users of traditional and/or alternative respite services. Information was gathered through individual interviews and focus groups.FindingsParticipants identified nine key elements of a person‐centred respite service; fun, time and space, choice, independence, friendships, compatible groupings, positive relationships with staff, flexible supports, and user involvement in service design and delivery.ConclusionsPerson‐centred supports should enable individuals to achieve maximum well‐being and flourish in all aspects of their lives. This study found that at a personal level, respite services and the interactions that occur within them are person‐centred in that they support the individual to do the things they want to do, make everyday choices, try new activities, develop positive relationships, and have a good quality of life. However, at the level of service planning and decision‐making, there is less evidence of a person‐centred approach. Participants reported having little involvement in the design and delivery of respite services at local or national level. The development of a respite policy in Ireland, that considers the views of respite service users, would be welcome.