Related Experiment Video
Updated: May 1, 2026
A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Parent and provider perspectives on procedural care for children with autism spectrum disorders
Meghan N Davignon1, Eron Friedlaender, Peter F Cronholm
1*Department of Child Development, The Children's Hospital of Philadelphia, Philadelphia, PA; †The Permanente Medical Group, Oakland, CA; ‡Kaiser Roseville Medical Center, Roseville, CA; §Department of Emergency Medicine, The Children's Hospital of Philadelphia, Philadelphia, PA; ‖Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; ¶Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA; **Center for Public Health Initiatives, University of Pennsylvania, Philadelphia, PA; ††Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA; ‡‡Center for Autism Research, Philadelphia, PA.
Insights
Children with autism spectrum disorders (CWASDs) need tailored hospital care. Improving provider-family communication and adapting clinical environments can enhance procedural success for these children.
Area of Science:
- Pediatric Healthcare
- Autism Spectrum Disorders
- Medical Procedures
Background:
- Children with autism spectrum disorders (CWASDs) often face challenges tolerating hospital procedures.
- Understanding parent and provider perspectives is crucial for improving care quality.
Purpose of the Study:
- To identify barriers and facilitators to procedural care for CWASDs from parent and provider viewpoints.
- To inform strategies for better healthcare experiences for children with autism.
Main Methods:
- Semistructured interviews with 20 mothers of CWASDs and 20 medical staff.
- Analysis using modified grounded theory techniques.
- Focus on factors influencing successful medical procedures for CWASDs.
Main Results:
- Key domains for effective care include productive provider-family interactions and optimized healthcare organization.
- Advanced preparation and individualized care are essential for successful procedural completion.
- Barriers exist in healthcare organization, patient flow, and clinical environments.
Conclusions:
- CWASDs require individualized interventions for optimal procedural care.
- Hospitals and providers often lack adequate accommodations for these children.
- Improvements in preparation, communication, patient flow, and clinical environments can enhance procedural quality and completion.
Objective:
Children with autism spectrum disorders (CWASDs) have more difficulty tolerating hospital procedures than many other children. The aim of this study was to identify parent and provider perspectives on barriers and facilitators to procedural care for CWASDs.
Methods:
Semistructured interviews were conducted with medical staff and parents of CWASDs. Those parents whose child with autism required a procedure in a tertiary care sedation unit and those whose child was enrolled in autismMatch (a research registry for individuals with autism) were recruited. Staff providing direct patient care in the tertiary care sedation unit were recruited. Participants were asked open-ended questions about factors contributing to or interfering with successful completion of medical procedures for CWASDs. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed using modified grounded theory techniques.
Results:
Twenty mothers and 20 medical staff members were interviewed. Participants described 2 domains essential to care of CWASDs but in which barriers existed: (1) productive interactions between providers and families, largely dependent on advanced preparation and (2) modifications to healthcare organization and delivery in the areas of patient flow and clinical environment. Individualized care is essential to quality care in both domains.
Conclusions:
Children with autism spectrum disorders require individualized interventions to maximize the quality of procedural care. However, many hospitals and providers are not sufficiently equipped to accommodate these children's needs. This study suggests that targeted improvements in preparation and communication between providers and families as well as modifications in patient flow and clinical environments have the potential to improve the quality and successful completion of procedures.
Related Concept Videos
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:26Modeling in Therapy
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
01:24Operant Conditioning Intervention
In operant conditioning, behaviors that are...
01:27Parenting Styles
Authoritarian Parenting
This style is strict and controlling, with little room for open dialogue. Authoritarian parents demand obedience and often enforce rules with minimal warmth. Children raised this way may lack social skills and initiative, usually comparing themselves to others unfavorably.
Authoritative...
00:55Parental Care
01:13Patient-centered Care