Caregiver Insights and Improvement Strategies for Youth with Autism Undergoing Gastrointestinal Endoscopy

• Published in: Journal of autism and developmental disorders Vol. 53; no. 4; pp. 1476 - 1482
• Main Authors: Kim, Tierney, Martinez, Kassandra, Cruz, Breanna Lopez, Huang, Jeannie S., Stadnick, Nicole A.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.04.2023; Springer; Springer Nature B.V
• Subjects: Adolescent; Autism; Autism Spectrum Disorder - therapy; Autism Spectrum Disorders; Autistic Disorder; Behavioral Science and Psychology; Beliefs, opinions and attitudes; Caregiver Attitudes; Caregivers; Child; Child and School Psychology; Children & youth; Colonoscopy; Consent; Demographic aspects; Electronic health records; Electronic medical records; Endoscopic surgery; Endoscopy; Endoscopy, Gastrointestinal; Experience; Gastrointestinal system; Health aspects; Hospitals; Humans; Improvement; Interviews; Medical Care Evaluation; Medical Services; Neurosciences; Original Paper; Pediatrics; Pervasive developmental disorders; Psychological aspects; Psychology; Public Health; Qualitative research; Quality improvement; Responsiveness; Teams; Teenagers; Youth; California (San Diego); United States; Qualitative research; Procedural care; Healthcare service; Patient experience; Autism spectrum disorder
• ISSN: 0162-3257; 1573-3432
• DOI: 10.1007/s10803-021-05346-5

Limited guidance is available for families of youth with ASD (YASD) to prepare for invasive medical procedures. This study examined caregiver perspectives regarding YASD’s gastrointestinal endoscopy (GE) experience to improve the endoscopy experience for YASD. Thirty-four caregivers of YASD, ( M  = 9.85 years, SD  = 4.6) who underwent GE at Rady Children’s Hospital, San Diego between May 2018 and July 2019 (identified via electronic health record) participated in a structured phone interview. Caregivers reported a positive experience due to the procedural team’s responsiveness to the needs of YASD and appropriately answering/addressing questions/concerns. Caregivers reported a need for ASD-specific information on how to prepare for GE. Specific recommendations are discussed. Study findings offer strategies to improve the care experience of YASD undergoing GE.