Perceptions of effective support services to families with disabled children whose behavior is severely challenging: A multi-informant study.

Author(s): McConkey, R., Gent, C., and Scowcroft, E. (2013)

Published In: J Appl Res Intellect Disabil, 26 (4): 271-83.

Study Aim/Purpose: The purpose of the study was to identify how “specialist short break and community support services programs” administered by Action for Children in three United Kingdom cities were perceived to meet the needs of families whose children are disabled and have severely challenging behaviors. “Family support services from these programs consist mostly of “overnight breaks in a small residential home for 2-7 days at a time.” In addition, “staff will come to the family home and accompany the child at activities within the local community while also providing advice and training to the family in managing behaviors.” 

Summary of Methods: This is a qualitative study that collected information about 17 children with “developmental disabilities and severely challenging behaviors.” Study participants were selected randomly from the 123 children who were currently receiving services or had done so in the past 2 years. For each child, semi-structured interviews were conducted with three types of informants: a parent, the child’s key worker within the service, and the professional (usually a social worker) who referred families to the services. The interviews were recorded and transcribed and thematic content analysis was conducted to identify major themes and subthemes. 

Summary of Key Results: The core themes to emerge in the analysis across the three local programs were: 1) complexity of family issues (including the fact that these families are often coping with more issues than having a disabled child, including caring for other special needs children, financial and housing difficulties and complexity and variation in the children’s behaviors) and perceived complexity of the package of services available from different agencies; 2) negotiations required to implement (including family ambivalence about initially using short breaks and negotiating access to the services and adjustments to the service packages); 3) the positive relationships forged between program staff and families and the children; 4) benefits to children and families (with emphasis on the fact that the children were reported to benefit most because of the complexity of the parents lives and their own needs); and 5) concerns about planning for an uncertain future (including the availability of respite once their child ages out of this service and consideration of out-of-home placement for some young people). 

Study Limitations (as cited by authors): The study was limited by the lack of a longitudinal perspective and the absence of quantitative measurement of changes in children and parents. 

Authors’ Discussion/Conclusions: “Specialist short break services can make a vital contribution to retaining children within their families, but under some important conditions which this study has identified: notably, the management of complexity, the formation of trusted relationships and creation of tangible benefits for the family and for the child.” The authors recommend that future studies build upon their findings conducting quantitative research to examine “the impact of different combinations of overnight and in-home support on parents and on children’s behaviors.”