“You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services

• Published in: Autism : the international journal of research and practice Vol. 19; no. 8; pp. 992 - 1001
• Main Authors: Cheak-Zamora, Nancy C, Teti, Michelle
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.11.2015; SAGE PUBLICATIONS, INC
• Subjects: Adolescent; Adolescents; Adult; Adults; Autism; Autism Spectrum Disorder - psychology; Autism Spectrum Disorder - therapy; Autistic adolescents; Autistic children; Autistic Disorder - psychology; Autistic Disorder - therapy; Caregivers; Caregivers - psychology; Comorbidity; Confusion; Experience; Female; Focus Groups; Guardianship; Health Services; Health status; Humans; Independent Living - psychology; Interviews; Life transitions; Likert Scales; Male; Medical diagnosis; Mental health; Needs; Parents; Parents - psychology; Patient Satisfaction; Pediatrics; Pervasive Developmental Disorders; Qualitative Research; Transition to Adult Care; Young Adult; Youth; adolescence/youth; health care transition; caregiving; autism
• ISSN: 1362-3613; 1461-7005
• DOI: 10.1177/1362361314558279

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.