How do primary care providers and autistic adults want to improve their primary care? A Delphi-study

Abstract

Autistic adults often encounter different types of healthcare barriers. Because autistic adults also have an increased risk for health problems, the aim of this study was to evaluate barriers and to explore how primary care providers and autistic adults want to improve their primary healthcare. In this co-created study, semi-structured interviews with three autistic adults, two parents of autistic children and six care providers were performed to evaluate barriers in Dutch healthcare. Next, in the survey-study (using the Delphi-method including controlled feedback in three consecutive questionnaires), 21 autistic adults and 20 primary care providers rated the impact of barriers and the usefulness and feasibility of recommendations to improve primary healthcare. In the interviews, 20 barriers in Dutch healthcare for autistic people were found. In the survey-study, the primary care providers rated the negative impact of most barriers lower than the autistic adults. This survey-study resulted in 22 recommendations to improve primary healthcare focused on: primary care providers (including education in collaboration with autistic people), autistic adults (including improvement of preparation for general practitioner-appointments) and organization of general practice (including improvement of continuity in care). In conclusion, primary care providers seem to view healthcare barriers as less impactful than autistic adults. In this co-created study, recommendations to improve primary healthcare for autistic adults were identified, based on the needs of autistic adults and primary care providers. These recommendations provide a basis for primary care providers, autistic adults and their support network to start conversations about, for example, strategies to improve primary care providers' knowledge, autistic adults' preparation for a general practitioner-appointment and organization of primary care.

Keywords: autism; barriers; general practice; healthcare access; primary care; recommendations.

Figure 1.

Study design. *21 autistic adults and 20 PCPs; **the same respondents as in round 1; ***20 autistic adults and 20 PCPs.

Figure 2.

Summary of recommendations to improve primary healthcare, based on both the needs of autistic adults and primary care providers (PCPs)*. ^aEducation about autism, autism-related health problems and autism-related somatic symptoms. ^bEducation about autism-related health problems and physical complaints. *In the total group of Delphi-participants, almost all recommendations (except for a flyer about stigmatization) scored relatively high on usefulness. Therefore, this figure only shows a differentiation in feasibility; **GPN = general practice nurse; PCMHW = primary care mental health worker.