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

Researchers interviewed 34 parents of autistic children who had gastrointestinal endoscopy procedures. Parents said the experience was positive when medical staff understood their child's autism needs and answered their questions well. However, parents wanted more autism-specific information to help prepare their child for the procedure. The study suggests ways to make medical procedures better for autistic children.

This qualitative study examined caregiver perspectives on gastrointestinal endoscopy experiences for 34 youth with autism spectrum disorder (average age 9.85 years). Through structured phone interviews, researchers explored caregivers' views to identify improvement strategies. Caregivers reported positive experiences when medical teams were responsive to autism-specific needs and effectively addressed questions and concerns. However, they identified a significant gap in available autism-specific preparation guidance for invasive medical procedures like endoscopy.

The study provides recommendations for improving care delivery and highlights the importance of tailored communication and preparation strategies for autistic youth undergoing medical procedures.

Medical teams should develop autism-specific preparation materials and protocols for invasive procedures. Staff training on autism needs during medical procedures may improve patient and family experiences. Standardized communication strategies could benefit autistic youth undergoing gastrointestinal endoscopy.

Small sample size from single hospital limits generalizability. Qualitative design provides caregiver perspectives only, not objective outcome measures. No comparison group or standardized assessment tools used.

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.