Nicole Halliwell1, Mara Podvey2, Julie D Smith3, Katelyn Harris4, Lorraine Sylvester5, Beth W DeGrace6. 1. Nicole Halliwell, DSc, OTR/L, is Assistant Professor, Department of Occupational Therapy, Monmouth University, West Long Branch, NJ, and Occupational Therapist, Kid Clan Therapy Center, Clifton, NJ. At the time of this study, Halliwell was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City, and Occupational Therapist, The Phoenix Center, Nutley, NJ; n.halliwell.dsc.otr@gmail.com. 2. Mara Podvey, PhD, OTR, PMH-C, FAOTA, is Associate Professor, Department of Occupational Therapy, School of Health and Medical Sciences, Seton Hall University Interprofessional Health Sciences Campus, Nutley, NJ. 3. Julie D. Smith, DSc, OTR/L, is Occupational Therapist, SoonerStart Early Intervention, Family Health Services, Oklahoma State Department of Health, Oklahoma City. At the time of this study, Smith was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City. 4. Katelyn Harris, MOT, OTR/L, is Occupational Therapist, KidsCare Home Health, Denver, CO. At time of this study, Harris was Master's Student, Department of Rehabilitation Science, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City. 5. Lorraine Sylvester, PhD, PT, is Professor Emeritus, Department of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City. 6. Beth W. DeGrace, PhD, OTR/L, FAOTA, is Associate Professor, Department of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City.
Abstract
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.
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.
Authors: Reut Gruber; Thomas F Anders; Dean Beebe; Oliviero Bruni; Joseph A Buckhalt; Mary A Carskadon; Kimberly Cote; Valerie McLaughlin Crabtree; Mona El-Sheikh; David Gozal; Anna Ivanenko; Jodi A Mindell; Judith Owens; Susan Redline; Jess P Shatkin; Shelly Weiss; Merrill S Wise Journal: Sleep Health Date: 2016-04-18
Authors: Marie K Deserno; Denny Borsboom; Sander Begeer; Joost A Agelink van Rentergem; Kawita Mataw; Hilde M Geurts Journal: Autism Res Date: 2019-04-10 Impact factor: 5.216