Identifying the unique determinants influencing rural families’ engagement with an existing tele-assessment approach for autism identification: A qualitative study

Abstract

Accurate identification of autism is a pressing challenge for rural, medically underserved communities. Tele-assessment could address some barriers to care by increasing access to expert diagnosticians, but questions remain regarding how best to implement these approaches. To gather community input regarding rural families’ perceptions and use of tele-assessment for autism identification, we conducted four focus groups with caregivers of children with autism (n = 22) and community service providers (n = 10) living and working in rural areas in the Southeast region of the United States. An iterative inductive/deductive approach guided qualitative data analysis. Coding reflected four core attitudes central to community perceptions, including (1) questions surrounding the validity (scientific legitimacy) of tele-mediated autism assessment; (2) level of trust in the evaluation process in general (and tele-assessment specifically); (3) beliefs about the feasibility of tele-assessment; and (4) concerns related to privacy. These attitudes and beliefs are influenced by determinants at multiple levels and stages, highlighting the need to adapt the existing tele-assessment approach by embedding implementation strategies that support multiple actors at each stage. This work identifies important targets for ensuring equitable access to tele-assessment for rural families.

Lay abstract

It is often difficult for families in rural communities to access autism evaluations for their children when they have concerns. Tele-assessment could make it easier for them to see specialists who give autism diagnoses, but we still need to figure out the best way to carry out these approaches. To understand how rural families view tele-assessment, as well as barriers they may face, we held focus groups with caregivers of children with autism and local service providers in the Southeastern United States. We met with 22 caregivers and 10 providers. We analyzed the discussions and found four key attitudes: (1) questions about whether autism assessment can really be done online; (2) level of trust in the evaluation process, especially tele-assessment; (3) beliefs about whether tele-assessment is practical for families; and (4) worries about privacy. These attitudes and beliefs are shaped by various factors at different stages, indicating that we need to improve tele-assessment by better supporting everyone involved at different stages of the tele-assessment process. This research highlights important areas for improvement to provide fair access to tele-assessment for rural families (e.g. creating education materials, conducting barrier counseling).