Date Presented 03/28/20
Primary-care encounters can be challenging for adults with ASD. The purpose of this presentation is to identify challenges experienced by this population as well as strategies to mitigate these difficulties.
Primary Author and Speaker: Leah Stein Duker
Additional Authors and Speakers: Beth Pfeiffer
Contributing Authors: Amber Pomponio, Sadie Kim
PURPOSE: Primary care is associated with positive societal outcomes, including improved access to healthcare services, health outcomes, and cost savings.1 Few studies have documented the primary care health experiences of adults with autism spectrum disorder (aASD). However, those existing studies report that aASD experience numerous challenges in the receipt of primary care,2-4 reporting decreased satisfaction and increased unmet physical and mental healthcare needs.4 As the number of aASD who require primary care is likely to increase over the next decade, there is a pressing need to improve the quality of primary healthcare for aASD with empirically validated, client-centered strategies and tools. Therefore, the purpose of this study was to describe the barriers and facilitators to positive primary care health encounters for aASD and provide strategies to address these challenges.
METHOD: As part of a larger mixed methods convergent parallel design study, interviews were conducted with adults with ASD (n=34), caregivers (n=31), and primary care providers (PCPs; n=13) in Los Angeles and Philadelphia; interviews lasted an average of 28, 37, and 40 minutes (respectively) and were transcribed verbatim. Thematic analysis was employed to describe barriers and facilitators to primary care health encounters, as reported by each group.
RESULTS: Three main overlapping themes emerged from the interviews. The first theme, It’s All About the Doctor, focused on the importance of provider attributes, and those attributes’ ability to either positively or negatively impact the care experience for adults with ASD. The second theme, The Environment Is So Overwhelming highlighted the significance of the waiting room and private clinic room environments. Lastly, the identification and utilization of tailored Strategies and Accommodations were reported as essential by all participants; however, the need for advocacy was also expressed, as many aASD and caregivers reported feelings of shortcoming when trying to utilize strategies during care and/or engage the provider in their use.
Two additional themes of importance arose from the caregiver interviews. The first, It Is So Tiring, described the burden caregivers experienced, encompassing not only the fiscal impact, but also the stress and anxiety experienced due to care coordination, system navigation, and the time commitment required to research medically-related topics as well as brainstorm strategies to make appointments successful for their adult child with ASD. The second, It’s Different for Us, focused on the impact culture, race, and ethnicity had on the primary care experience for aASD and caregivers.
CONCLUSION: Findings provide insight into the barriers and facilitators to care as well as the techniques perceived by aASD, caregivers, and providers to facilitate positive primary care health encounters for aASD. Areas of overlap provide a blueprint for high-priority obstacles to address in intervention development in order to improve the quality of primary healthcare services for aASD.
IMPACT: With their expertise in ASD-related knowledge, advocacy, and examining person-environment fit, OT practitioners should be involved in collaborating to develop autism-specific medical education curricula, continuing education, and the development and testing of interventions to improve the primary healthcare encounters for aASD.
References
1. Shi, L. (2012). The Impact of primary care: A focused review. Scientifica, 2012, 1-22. doi:10.6064/2012/432892
2. Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., . . . Boisclair, W. C. (2015). "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824-831. doi: 10.1177/1362361315576221
3. Raymaker, D. M., Mcdonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., . . . Nicolaidis, C. (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972-984. doi:10.1177/1362361316661261
4. Nicolaidis, C., Raymaker, D., Mcdonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2012). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28, 761-769. doi:10.1007/s11606-012-2262-7
