Experience of Sleep for Families of Young Adults With Autism Spectrum Disorder.

IMPORTANCE: Children with autism spectrum disorder (ASD) may experience sleep difficulties that worsen into adulthood and negatively influence both child and family, yet the experience is not well understood. Understanding the family's experience can inform occupational therapy providers, future research, and practice guidelines. OBJECTIVE: To examine experiences surrounding sleep for families raising a young adult with ASD (YA-ASD). DESIGN: Qualitative study in the phenomenological tradition of Moustakas (1994). Experienced researchers analyzed transcripts from in-depth, in-person interviews to triangulate data, distill themes, and construct the essence of family experience. Trustworthiness was established through member checking, audit trails, and epoché diaries that were maintained throughout data analyses. SETTING: Community setting (large city in the northeastern United States). PARTICIPANTS: People who self-identified as living in a family arrangement that included a YA-ASD age 15-21 yr, able to verbally participate in English. Families with children diagnosed with developmental disabilities other than ASD were excluded. RESULTS: Six eligible families identified through volunteer sampling participated. The participants' sociodemographic diversity was limited across household income, education level, and ethnicity. All YA-ASD in this study were limited verbally and unable to contribute. Analyses of interview transcripts revealed five themes that form the essence of the families' experience surrounding sleep. CONCLUSIONS AND RELEVANCE: Sleep issues for YA-ASD continue into adulthood and affect the entire family because of continuous co-occupation; occupational therapy support is therefore important for families of YA-ASD. The lack of effective evidence-based interventions supporting the YA-ASD population also reveals an area for growth. What This Article Adds: The results indicate the importance of addressing sleep for YA-ASD and their families in occupational therapy practice because of its considerable impact on family life.

The transition experience to pre-school for six families with children with disabilities.

The purpose of this qualitative study was to gain an understanding of how families receiving related therapy services experience the transition from early intervention to pre-school special education. Participants were six families with a child who received early intervention services and became eligible for pre-school special education services. Data was collected using in-depth interviews over 3 months. Grounded theory lead to theoretical insights and supported the development of three themes and a metatheme. 'Transition is scary', describes the families' feelings about the transition itself and their own perspectives of how their families fared. 'Therapy is central to progress, but not to transition', reflects how therapy remained central to their children's progress, but did not help families acclimate to the pre-school environment. 'Communication is key to comfort', expresses the importance of communication with all relevant parties. The metatheme 'The Outsiders' describes how the transition represents a significant status change for the family in terms of their involvement in their children's education, but also highlights the ways in which families continue to meet the needs of their children outside of the pre-school milieu. Findings suggest that families perceive the transition as difficult despite the presence of policies designed to make it easier for them. A deeper examination of policy and its influence on everyday practice related to the transition must occur to help reconcile the reasons for this difference.