Date Presented 4/20/2018
Parents of young children diagnosed with developmental disabilities need to identify environmental barriers to their children’s participation. In this study, diverse parents identified more environmental and system barriers when they used a structured problem identification approach compared with independent identification.
Primary Author and Speaker: I-Ting Hwang
Additional Authors and Speakers: Jessica Kramer
Contributing Authors: Melissa Levin, Lindsay Rosenfeld, Dolores Acevedo-Garcia
BACKGROUND AND PURPOSE: Parents of young children with developmental disabilities (DD) embark on a lifelong process of advocating for environments that meet their child’s needs (Khetani et al., 2013). Parents who are minority, have low income, or have less educational attainment may be disproportionally affected by environmental barriers. Early childhood is an ideal period to teach parents a framework for problem solving environmental barriers. However, little is known about the optimal approach to equip diverse parents of young children with DD with the ability to identify environmental barriers. This feasibility study evaluated the usability of a structured, environment-focused problem identification approach for parents of young children with DD. Research questions were as follows: Does this approach change the types of participation barriers identified by parents? Can parents with varying backgrounds use the approach to identify environmental barriers? What solutions do parents propose when encountering barriers to participation?
METHOD: This cross-sectional study used semistructured interviews with narrative elicitation. We purposefully selected diverse parents of children aged 0–3 with a diagnosis of DD receiving early intervention. We recruited nine mothers aged 26–38 from a New England area; four were racial and/or linguistic minority members, three had a high school education, and four were low income.
We developed a structured problem identification approach guided by a social ecological model featuring home, community, and policy contexts. The three-step approach included a health literacy–informed visual aid (Nielsen-Bohlman et al., 2004), general prompts, and specific prompts. The approach was used to problem solve three short stories about a family and child experiencing participation challenges when eating a family meal, grocery shopping, and enrolling their child in preschool.
Two researchers independently content coded parent responses. Barriers were coded with International Classification of Functioning, Disability and Health: Children and Youth Version (ICF–CY; World Health Organization, 2007) categories of personal factors, body functions and structures, and environmental factors. Parents’ solutions were coded as individual change, family change, community change, or policy change. We used descriptive statistics to examine the number and types of barriers and solutions parents identified with and without the approach.
RESULTS: Parents independently identified 121 environmental barriers. With the approach, parents identified 222 additional environmental barriers; the highest number of barriers were aligned with the ICF–CY chapter on service, system, and policies. Parents who identified the most environmental barriers reported postgraduate education and household income >$80,000. Parents reporting the lowest annual income (<$20,000) identified the fewest environmental barriers; however, these parents identified double the number of environmental barriers when using the approach compared with independent identification. Parents’ solutions varied on the basis of their perceptions of the barrier. When they attributed participation challenges to body structures and functions, 70% of solutions involved individual or family changes. For environmental barriers, 57% of solutions required changes at the community or policy level.
CONCLUSION: Parents with diverse backgrounds used the structured problem identification approach to identify additional environmental barriers that they had not independently considered, especially system barriers. The ability to attribute participation restrictions to environmental barriers appears to support policy-based solutions.
IMPACT STATEMENT: Occupational therapy practitioners can use this approach to raise parents’ awareness of the political and economic factors affecting their everyday lives (Marmot et al., 2008). Using this approach may foster parents’ feelings of empowerment and willingness to advocate for broader system changes.
References
Khetani, M. A., Cohn, E. S., Orsmond, G. I., Law, M. C., & Coster, W. J. (2013). Parent perspectives of participation in home and community activities when receiving Part C early intervention services. Topics in Early Childhood Special Education, 32, 234–245. https://doi.org/10.1177/0271121411418004
Marmot, M., Friel, S., Bell, R., Houweling, T. A., Taylor, S., & Commission on Social Determinants of Health. (2008). Closing the gap in a generation: Health equity through action on the social determinants of health. Lancet, 372, 1661–1669. https://doi.org/10.1016/S0140-6736(08)61690-6
Nielsen-Bohlman, L., Panzer, A. M., Kindig, D. A., & Committee on Health Literacy (2004). Health literacy: A prescription to end confusion. Washington, DC: National Academies Press. https://doi.org/10.17226/10883
World Health Organization. (2007). International classification of functioning, disability and health: Children and youth version: ICF–CY. Retrieved from http://apps.who.int/iris/handle/10665/43737
