A Break from Caring for a Disabled Child: Parent Perceptions of the Uses and Benefits of Short Break Provision in England.

Study Aim/Purpose: This paper examined perspectives of parents of children with disabilities on the provision of respite services through the Programme Aiming High for Disabled Children Short Breaks Pathfinder in England. In this program respite services are called “short breaks.”

In this program, the term is used to describe a range of services for disabled children and their families which involve the disabled child receiving support or engaging in supported activities either within or away from their family home, lasting anywhere between one hour to three weeks, and may involve just the child or in some cases group activities for the child and the family. The purpose of the study was to explore how parents talk about and use the program in the context of caring for their disabled better understand child to the need for respite and how this national program can best meet those needs.

Summary of Methods: The study involved in person interviews with 17 parents using a semi topic guide and the written responses of 8 parents to the open structured ended question, “We want to hear from families of disabled children what role short breaks play in their lives and what are the major issues for them in using short breaks.” The interview responses and text responses were transcribed and a thematic qualitative analysis conducted.

Summary of Key Results: The analysis revealed that parents who took part in the program wanted and needed breaks from caring for their disabled child and the “short breaks” were crucial in helping parents with disabled children continue to provide care for them, and for others in their family. However, the analysis also documented that parents have varying perceptions about what a break from caring means. The responses indicate that parents see respite as not only restorative to help them take care of their disabled child after the break, but also to attend to the wider consequences of caring for their child. Such wider co sequences mentioned included: “ receiving less care than they should, feeling that nondisabled children in the family are social isolation, and the need to prepare for not being able to provide care for their child in the future.” The study also documented that parents’ need for breaks are not always being met because of misperceptions of how respite can address their needs.

Study Limitations (as cited by the authors): This was a qualitative exploratory study based on interviews with a convenience sampling of parents in the program and was “not intended to be statistically representative.”

Authors’ Discussion/Conclusions: In their discussion of the policy and programmatic implications of the study findings, the authors recommend changes to how social workers assess families’ needs for respite and tailor the respite to these needs. They suggest social workers should assess what the carer role means to individual parents and how parents perceive their need for a break.”