Facilitators and Barriers to Care of Children with Autism Spectrum Disorders Undergoing Procedures

Background: Children with Autism Spectrum Disorders (ASDs) are frequently seen in medical settings for common childhood illnesses and injuries as well as chronic conditions associated with ASDs. Characteristics associated with ASDs make medical encounters more challenging. Common behavioral strategies used with typical children often fail in this population, and restraint and sedation are required more frequently. Parent and provider perspectives were explored in order to better define facilitators and barriers to hospital based procedural care for children with ASDs.

Objectives: The primary aim of this needs assessment was to identify family and medical staff reported barriers and facilitators to hospital-based procedural care for children with ASDs. Secondary aims were 1) to identify differences in the needs and experiences of verbal versus non-verbal children with ASDs during hospital-based procedures, and 2) to identify strengths and deficiencies in hospital staff education regarding interaction with and assessment of individuals with ASDs.

Methods: We conducted semi-structured interviews with 20 parents of children with ASDs who had undergone hospital-based procedures and 21 medical providers working in the Sedation Unit at Children’s Hospital of Philadelphia (CHOP). Participants were asked open-ended questions about factors they found facilitated or created barriers to successful interactions with children with ASDs and successful completion of the medical procedure. Interviews were audio-recorded, transcribed, coded, and analyzed for the emergence of major themes using the constant comparative method.

Results: The central theme that emerged is that individualized care is essential to quality care but is not consistently practiced. Parents and providers described a need for improved provider preparation and on-going communication with parents in order to enhance individualized care. They also identified a need for better provider education on the approach to children with ASDs. Family and child preparation were seen as key to successful procedures as well, and as another area in need of improvement. Long wait times were recognized as a significant barrier to successful procedures. Participants, particularly parents, also felt there should be more accommodations made in the procedural environments (e.g. decreased noise/light, access to calming items) to facilitate successful procedure completion. There were no significant differences in needs identified by parents of children who were verbal versus those who were non-verbal.

Conclusions: Evidence shows that children with ASDs have more difficulty in the hospital setting and require more invasive interventions than other children to complete procedures. However, few training programs include instruction on how to work with children with ASDs, and few hospitals have interventions in place to aid in their care. This study suggests that improvements in child, family, and staff preparation and education as well as decreased wait times and environmental modifications can improve the quality and successful completion of procedures.