“Know Your Children, Who They Are, Their Weakness, and Their Strongest Point”: A Qualitative Study on Diné Parent Experiences Accessing Autism Services for Their Children
2023
Olivia J. Lindly | Davis E. Henderson | Christine B. Vining | Candi L. Running Bear | Sara S. Nozadi | Shannon Bia
Background and Objective: Marked inequities in access to autism services and related health outcomes persist for U.S. children, undermining broader initiatives to advance the population&rsquo:s health. At the intersection of culture, poverty, and ruralness little remains known about autism in many Indigenous communities. This qualitative study on the lived experiences of Navajo (Diné:) parents raising a child with autism sought to identify factors affecting access to services. Methods: A Diné: researcher conducted in-depth interviews with 15 Diné: parents of children with autism living in or around the Navajo Nation. A directed content analysis approach was used to identify themes, subthemes, and connections between themes. Results: Twelve overarching themes emerged on Diné: parents&rsquo: experiences accessing autism diagnostic and treatment services, as well as ways access to autism services can be improved. The following themes were related to diagnosis: the diagnostic process was often emotionally fraught: long wait times of up to years for diagnostic services were commonplace: limited clinician training and cultural humility impeded access to diagnostic services: and adequate health insurance, Indian Health Service referrals, care coordination, financial aid for travel, and efficient evaluation facilitated diagnosis. Themes on treatment access were as follows: parent perceptions of the extent to which an autism service helped their child affected access: social support helped parents to access treatment: obtaining referrals and care coordination influenced treatment access: treatment costs affected access: and service availability and geographic proximity impacted treatment access. Themes on ways to improve access to autism services were as follows: greater autism awareness is needed: autism-focused support groups may be helpful: and increased availability and quality of autism services across and around the Navajo Nation is paramount. Conclusions: Diné: parents&rsquo: access to autism services was dynamically affected by sociocultural factors that must be addressed in future health equity-oriented initiatives.
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