Identifying environmental barriers to participation: Usability of a health-literacy informed problem-identification approach for parents of young children with developmental disabilities

Background: Parents of very young children recently diagnosed with developmental disabilities (DD) need to identify environmental barriers to their children's participation and adopt an adaptive orientation to solving these problems. Given the health service disparities for diverse families, parents may benefit from easy to use problem-identification approaches that address environmental barriers stemming from community and policy contexts. This feasibility study evaluated the usability of a health literacy-informed, structured, environment-focused problem-identification approach for parents of young children with DD. Methods: We used purposeful, convenience sampling to enrol 9 mothers of children ages 1–3 with DD (4 racial/ethnic minorities, 3 high school education, 4 annual household income <$20,000). We developed a structured problem-identification approach guided by a social ecological model featuring home, community, and policy contexts. The approach was applied to 3 short stories during a narrative elicitation interview. Two researchers independently coded parent responses for the type of barrier and solution identified with and without the approach. Results: Parents identified 121 environmental barriers without the approach. When using the approach and prompted to consider home, community, and policy barriers, parents identified an additional 222 environmental barriers; the greatest number of barriers were aligned with International Classification of Functioning, Disability, and Health–Children and Youth environment Chapter 5 “Services, systems, and policies.” Using the approach, parents with a postgraduate education and annual household income >$80,000 identified the most environmental barriers, and parents reporting the lowest annual household incomes identified the fewest environmental barriers. When parents attributed participation challenges to an environmental barrier, ~57% of solutions required parents to interact with individuals at the community or policy level. Conclusions: This study suggests that parents with a range of background characteristics can use a structured, environment-focused problem-identification approach. With the approach, parents are more likely to attribute participation challenges to environmental barriers and adopt a problem-solving orientation focused on changes to the community and policy context.