Abstract
Date Presented 04/22/2023
OTs in countries such as Ghana may serve as advocates and educators for autistic individuals and their families to facilitate the diagnostic process. Furthermore, they may need to establish the value for money of their service.
Primary Author and Speaker: Joana Nana Serwaa Akrofi
Additional Authors and Speakers: Amber M. Angell
Existing autism research in Africa shows that autistic children are diagnosed relatively late, or not at all, compared to autistic children from higher-income countries. The purpose of this study was to understand the barriers to the autism ‘diagnostic odyssey’ in the Greater Accra Region of Ghana and to engage key stakeholders to action plan steps to reduce the barriers. We conducted a participatory study using semi-structured qualitative interviews, photo elicitation, and focus groups with 11 participants (4 parents and 7 health professionals) from healthcare settings in the Greater Accra region. We coded interview transcripts and focus group notes with NVivo and used thematic analysis following Braun and Clarke’s (2006) model. Themes were presented to the stakeholders in a focus group, where we used the nominal group technique to identify and prioritize major problems and possible solutions for improving autism diagnosis. Our qualitative thematic analysis yielded three overarching themes, with barriers and facilitators for each: 1) Systemic, 2) Community, and 3) Parent/Family factors that influence the diagnostic process. A significant finding was that families and individuals in Ghana must pay out-of-pocket for limited services and support. The action plan of our stakeholder focus group prioritized not increasing diagnosis rates, particularly because a diagnosis does not currently lead to publicly available services. Rather, the stakeholders emphasized that first, community education is critical to dispel myths and encourage autism acceptance within the Ghanaian community, making the context more accommodating to autistic children and their families. Occupational therapists who find themselves in countries like Ghana may need to serve as advocates, educators, and counselors for autistic individuals and their families to facilitate the diagnostic process. They may need to do more in advocating for the profession to establish the value for money of their service
References
de Vries, P. J. (2016). Thinking globally to meet local needs: autism spectrum disorders in Africa and other low-resource environments. Current Opinion in Neurology, 29(2), 130-136. doi: https://doi.org/10.1097/wco.0000000000000297
Lappé, M., Lau, L., Dudovitz, R. N., Nelson, B. B., Karp, E. A., & Kuo, A. A. (2018). The diagnostic odyssey of autism spectrum disorder. Pediatrics, 141(Supplement_4), S272-S279. doi: https://doi.org/10.1542/peds.2016-4300c
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. doi: https://doi.org/10.1191/1478088706qp063oa
