Parent disclosure of complementary health approaches used for children with autism spectrum disorder: Barriers and facilitators

Abstract

Background and objectives: Complementary health approaches (CHA) are widely used among children with autism spectrum disorder (ASD). As part of shared treatment decision-making, healthcare providers are encouraged to discuss CHA with parents of children with ASD. Yet prior research suggests that parents often do not disclose CHA used for children, and their reasons for nondisclosure are poorly understood. We, therefore, aimed to identify barriers and facilitators to parent disclosure of CHA used for children with ASD.

Design and setting: In-depth interviews were conducted with 31 parents who reported that they were currently using CHA for their child's ASD in Denver, Colorado or Portland, Oregon.

Results: We used content analysis to identify six main themes indicating that the following factors play a role in disclosure: parents' drive to optimize their child's health, parent self-efficacy discussing CHA with healthcare providers, parent beliefs about the effectiveness of CHA, parent-provider relationship quality, provider attitudes and knowledge regarding CHA and ASD, and visit characteristics.

Conclusions: Study findings suggest that family and health system factors, together, influence parent disclosure of CHA used for children with ASD. Multifaceted intervention concurrently targeting the CHA-related knowledge, beliefs, and self-efficacy of parents whose children have been recently diagnosed with ASD, in addition to the CHA-related attitudes and knowledge of their healthcare providers may promote disclosure and shared treatment decision-making about the use of CHA.

Keywords: Autism spectrum disorder; Complementary and alternative medicine; Complementary health approaches; Disclosure; Shared treatment decision-making.