Provider Perspectives on Parent-Provider Communication about ASD Detection: Implications for Applying Shared-Decision Making

Background: Challenges in parent-provider communications about early ASD concerns may contribute to delays for detecting ASD and accessing specialized treatment. During the detection process, parents have indicated that providers did not offer sufficient support and advice about the nature of ASD (Osborne & Reed, 2008). Community early intervention (EI) providers have reported a lack of comfort and uncertainty about their role in discussing concerns with parents, including what specific information should be conveyed (Cameron & Muskett, 2014). Both parents and providers seem to agree that greater sharing of information is needed to support the families during the diagnostic process (Keenan et al., 2010). Further research on EI providers’ perspectives about discussing early ASD concerns and referrals may yield key insights on ways to improve parent-provider communication and apply shared-decision making, which promotes a balanced partnership that capitalizes on both parents’ and providers’ unique expertise, values, and beliefs.

Objectives: Identify the common issues/facilitators that arise when providers communicate with families in their caseload about ASD concerns and make decisions about appropriate next steps/referrals.

Methods: Three 90-minute focus groups were conducted by a facilitator using a semi-structured guide and audio recorded for transcription and coding. Participants included 25 EI providers from 3 EI agencies in a large urban setting. Grounded Theory (Corbin & Strauss, 2014) was used to identify the themes in reviewing the transcripts. All transcripts were coded by two independent coders and inter-coder reliability was met for all themes.

Results: A total of 5 major themes emerged. As part of their unique role in working with children with ASD/ASD concerns, providers indicated that they felt responsible for introducing/discussing concerns about ASD and providing parents education on the topic. When bringing up ASD concerns to parents, providers indicated that they attempted to introduce the concerns gradually over time/sessions in order to gently assess parent readiness and avoid parents rejecting their concerns and discontinuing EI services. With regards to parents’ acceptance and follow through for referrals, providers indicated that influential factors included parent awareness and motivation and child symptomatology (and its severity). When working with families from different cultural backgrounds, providers indicated that they confronted additional barriers including parents’ perceptions of stigma and ASD and miscommunication due to language differences. When making recommendations for ways to improve parent-provider communication, providers indicated the need to use strategies that: (1) lead to a better understanding of parents’ perspectives; (2) provide parents clarity about the next steps (i.e., waitlists and types of services); and (3) include simple, visual materials that can be used with all parents, including those from different cultural backgrounds and/or with possible literacy issues.

Conclusions: Findings re-affirmed that providers face various challenges when communicating with parents about ASD concerns and referrals. Given the challenges and recommendations that emerged, using shared-decision making may lead to considerable improvements in parent-provider communication because its primary components/strategies involve: (1) seeking and supporting parent participation, (2) exploring/explaining the next steps clearly, (3) assessing parents’ beliefs and values, and (4) reaching and monitoring a decision.