Objectives: To gain perspectives of PCPs and parents on screening for ASD in infants at 12 months of age. The results will inform a revision of the First Year Inventory (Baranek, Watson, Crais, & Reznick, 2003), a parent-report tool for identifying infants at-risk for ASD.
Methods: Eight focus groups with PCPs and three with parents were conducted around screening for ASD in infants. Participants were 60+ physicians/nurses across settings seeing infants in North Carolina, and 21 parents whose infants had just had a 12-month-old well-child checkup. A grounded theory approach was utilized to analyze focus group transcripts and team members gained consensus on 5 open and 30 axial codes using Atlas.Ti qualitative data analysis software.
Results: The five open codes focused on issues related to tool design, interpersonal interactions, procedures, context, and ethical/moral dilemmas. Some key issues are listed below:
- Tool design: PCPS wanted a tool that was: quick with possibly 5 questions and a two-tiered system (general & at-risk screens), Medicaid approved, electronically available, and culturally sensitive.
- Interactions: PCPs were concerned about possible cultural bias and their own limitations in understanding perspectives from families of other cultures.
- Between parents and PCPs: a lack of congruence in perceptions and culturally diverse views of development were highlighted.
- Procedures: who should complete the tool (parent and/or PCP) was important to both groups.
- PCPs also had questions about how do you know what to look for in infants, what is ‘typical’, and where’s the evidence for early identification?
- Context: PCPs were apprehensive about the capacity of the EI system and the lack of follow-up from EI agencies once children were referred.
- Ethical/moral issues were raised by both groups such as the “risks” of over- or under-referral and the impact on families, the “stigma” of the term autism, and weighing the benefits and risks.
Conclusions: The results of this study can be used by researchers, primary care providers, and families to gain perspectives on PCPs’ and parents’ views on early screening practices. Designing and implementing screening tools that are effective and accepted by PCPs and parents may be key to the actual use of screening tools to detect ASD in young children in primary care settings.
Funding: Ireland Foundation
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