Family Stress Associated with Transition to Adulthood of Young People with Severe Disabilities

Abstract

The transitions from student to adult roles for adolescents and young adults with severe developmental disabilities can produce concern and stress for their families. In order to understand and ultimately to be able to address these transition-related concerns and needs of families, we assessed family members' concerns associated with transition, identified the family members who shared the concerns, and measured the related levels of stressfulness and frequency of occurrence of the concerns. We collected data from 42 members of 19 families of young adults with severe developmental disabilities. Results were as follows. The most frequently mentioned concerns were those from the Young Adult domain, such as getting along with others, self-care capabilities, responsible behavior, and sexuality. The concerns rated most stressful, however, were from the Residential, Family Life, and Professionals and Agencies domains. These included the quality and availability of services, dealing with service providers, and family financial problems and disagreements. The concerns reported to occur most frequently were from the Young Adult, Residential, and School domains, including the young adult's self-care and social capabilities, the quality of residential services and interactions with residential providers, and school academic and work training and interactions with school staff. Concerns from the Residential domain were most predictive of overall individual and family stress. Our results indicated that responses from family members regarding stressful concerns are contingent upon how questions about stress are framed. We discuss these results in terms of Lazarus and Folkman's (1984) stress and coping theory.