Date of Degree
Paige McDonald, EdD
autism spectrum disorder; children; healthcare providers; knowledge; patient-centered care; person-centered care; interviews; qualitative
Background: Families receive guidance from healthcare providers on managing their children’s autism spectrum disorder (ASD); however, both parents and providers have reported that providers often have insufficient knowledge about ASD. Successfully managing ASD requires knowledge about both the real-world needs of families with children who have ASD and the ability to evaluate the real-world effectiveness of strategies designed to meet these needs. The incorporation by providers of knowledge that originated from the families of their pediatric patients with ASD, termed family-derived knowledge, could overcome this gap. This phenomenological study explored what family-derived knowledge means to healthcare providers treating children with ASD in several areas across the United States.
Methods: This qualitative study used a phenomenological approach to determine the meaning of family-derived knowledge by understanding the realities experienced by healthcare providers who treat children with ASD. Purposeful and snowball sampling were used to recruit healthcare providers at multiple sites across the United States for open-ended interviews. Demographic data were summarized and presented in aggregate. Interview data were analyzed using the Moustakas modification of the Stevick-Colaizzi-Keen method that synthesized data into a composite textural-structural description of the essence of what family-derived knowledge means to healthcare providers treating children with ASD.
Results: A total of 27 healthcare providers participated in open-ended interviews, including ten occupational therapists, six speech language pathologists, four board certified behavior analysts, four primary care providers, and three physical therapists. Participants described partnering with families through a person-centered care approach to obtain family-derived knowledge about resources, interventions, and child and family needs. Participants then evaluated this real-world evidence about ASD obtained from families before disseminating to others on individual, organizational, and systems levels. A conceptual model depicting this flow of family-derived knowledge and a translational checklist to guide clinicians on applying family-derived knowledge were created.
Conclusion: Family-derived knowledge involves the acquisition, evaluation, and dissemination by clinicians of knowledge obtained from the families of children with ASD being treated in a person-centered care approach. These translational findings provide a guide for individual clinicians applying family-derived knowledge in their own practice, as well as a call to action for further research focused on including families of children with ASD as partners in the design of healthcare approaches and practice.
Samsell, Brian, "The Meaning of Family-Derived Knowledge to Healthcare Providers Treating Children with Autism Spectrum Disorder" (2023). Doctor of Philosophy in Translational Health Sciences Dissertations. Paper 16.
Available for download on Friday, December 13, 2024