Abstract
Background:
Autistic adults have complex physical and mental health care needs that necessitate specialized approaches to health care. One promising approach is to embed providers with specialized training or specialty clinics for autistic adults within general primary care facilities. We previously found that autistic adults who received their health care through one specialty clinic designed with and for autistic adults had better continuity of care and more preventive service utilization than national samples of autistic adults.
Objective:
To characterize factors that increased or decreased satisfaction with health care received through a specialty clinic for autistic adults.
Methods:
We conducted 30- to 60-minute semi-structured interviews with autistic adults (N = 9) and parents of autistic adults (N = 12). We conducted an inductive thematic analysis using a phenomenological approach.
Results:
Factors that increased participants' satisfaction included: (1) receiving personalized care from the provider; (2) spending quality time with the provider; and (3) having strong, positive patient–provider relationships. Factors that decreased participants' satisfaction included: (1) lack of access to services due to scarcity of trained providers; (2) difficulty at times communicating with the provider; and (3) system-level barriers such as policies, practices, or procedures.
Conclusions:
Our findings highlight the importance of providers using personalized approaches to care that meet patients' sensory and communication needs and spending quality time with patients to establish strong, positive patient–provider relationships. Our findings also underscore the critical scarcity of health care providers who are trained to deliver care for the growing population of autistic adults.
Lay summary
Why was this study done?
Health care clinics specifically designed for autistic adults could better support this group's health care needs. A past study found that autistic adults who got their health care from a specific clinic were more satisfied with their care and had more consistent care than national samples of autistic adults. We did this study to understand what made autistic adults or their parents more or less satisfied with the care they got from this specific clinic.
What did the researchers do?
We based our study in a specific clinic for autistic adults in the Midwestern United States, which opened in 2014. We interviewed 9 autistic adults and 12 parents of autistic adults who got health care at this clinic. We looked for common themes in the interviews.
What were the results of the study?
Autistic adults and parents liked when providers customized care around sensory and communication needs (e.g., asking before touching, using visual aids to explain steps). They also liked when the provider (1) made sure that they felt heard and not rushed and (2) developed strong positive relationships with them by being personable, friendly, understanding, and welcoming. Autistic adults and parents wanted mental health services at the clinic. Sometimes, autistic adults said that it was hard to communicate their feelings during health care visits.
They felt that this made it harder to have their needs met. Autistic adults wanted providers to use more realistic pictures to explain things in ways that are respectful of their age and communication skills. Autistic adults often needed flexibility for how their health care visits were scheduled and handled, but sometimes this flexibility was not available. For example, sometimes autistic adults needed to cancel or change the appointment on the day of the visit, but the clinic required at least 24 hours of notice for visit changes or cancellations.
What do these findings add to what was already known?
There is growing evidence that specific clinics for autistic adults can improve health care experiences. Our findings add examples of things health care providers can do to improve autistic adults' health care experiences, such as meeting sensory and communication needs and making sure autistic adults feel heard and not rushed.
What are potential weaknesses in the study?
We included autistic adults and parents from a single clinic who could tell us their ideas by talking or writing. We interviewed more parents than autistic adults. Autistic adults and parents might not have told us everything that makes them less satisfied. We did not include community members who are autistic adults or parents of autistic adults as members of our study team.
How will these findings help autistic adults now or in the future?
Our findings may help people understand how to improve health care for autistic adults. For example, health care providers can use our findings to deliver better care for autistic adults by customizing care, making sure patients feel heard and not rushed, and developing strong relationships with patients and parents.
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