The PATH project gathered the perspectives of Vermont stakeholders regarding transition from pediatric to adult healthcare for Autistics.
The project was planned by a team of autistic and non-autistic research partners.
- In February 2023, 10 small groups met on Zoom to talk about the gaps in research that focuses on healthcare transition for Autistics.
- In March 2023, 6 small groups of multi-stakeholders met to talk about outcomes/end results that are priorities for this type of research.
- Then, between March and June 2023, we interviewed 17 physical and mental health providers or youth service providers.
A total of 56 autistic and non-autistic parents/caregivers, healthcare professionals and Autistics age 16 and older contributed to the discussions.
We first talked about 5 research articles and their models for healthcare transition.
The discussion covered 5 topics related to healthcare transition based on our review of the literature.
- Healthcare accessibility
- Transfer of care
- Mental health
- Sexual health and relationship
- Engaged lifestyle
The second discussion focused on important end-results for research.
The guiding questions can be found in the meeting agenda.
How we came to the results:
A team of 13 multi-stakeholders extracted the important messages using reflexive thematic analysis.
Working in groups of 2, they coded each focus group transcript independently and then combined their observations into main messages that they agreed reflected the group’s discussion. After the key messages were submitted to focus group participants for agreement and further comments, the project co-leader combined and refined the main messages from all the focus groups.
For the interviews, 3 members of the team reviewed notes and transcripts and identified main messages. Finally, the main messages from the focus groups and interviews were combined into the final sets of research topics.
This process was repeated for the analysis of the transcript of the 6 focus groups on research outcomes. Outcomes covering broad categories related to autistic youth, providers and the healthcare system emerged. They were submitted to project participants for prioritization into Higher, Medium or Lower priority. We requested that participants try to prioritize no more than 5 outcomes as higher priorities. The outcomes were assigned a priority level based on the mode of the participants’ ratings.