129 - Using the Voices of Parents from Marginalized Groups to Transform Primary Care

Developing novel systems of care to meet the needs of families from marginalized populations necessitates understanding the challenges faced by and strengths of these families.

Objective:

To characterize parents’ perspectives on health and well-being, family values, and ways in which primary care could better meet their holistic needs, with an overarching goal to inform a human centered design project seeking to transform pediatric primary care.

Design/Methods:

Primary care providers identified families with at least one child under six years old with social needs (e.g., immigration, housing insecurity). Bilingual research assistants enrolled parents who spoke Haitian Creole, Spanish, and English during pediatric primary care visits. Interviews were conducted by Agncy, a design firm specializing in health equity, trauma-informed approaches, and culturally inclusive activities. Most interviews occurring in families’ homes and all were audio-recorded and transcribed. The team analyzed the content and narratives of interviews to understand themes common across families, values and perspectives related to these, and connections across topics (when relevant and demonstrable in the data).
 

Results:

Fourteen parents of 29 children participated; 10 parents were immigrants and 8 were single parents. Nine interviews were conducted in English; five were conducted in Haitian Creole or Spanish. Analysis of interviews revealed five themes: (1) Families define health and wellness broadly, incorporating physical, mental, spiritual, social, and environmental dimensions; (2) Families’ ability to actuate holistic definitions of health is complex due to the impact of poverty on agency; (3) Parents actively set child health goals, plan to achieve goals, and adapt plans when circumstances change (i.e., changing feeding practices to ensure proper infant weight gain); (4) Parents engage in ongoing problem recognition and identify solutions, but enacting solutions can be derailed by their own health issues; and (5) Parents feel isolated and want to be acknowledged for the hard work of parenting and have support to meet their child’s health and developmental needs.
 

Conclusion(s):

Providing high quality primary care to marginalized families necessitates understanding parents’ perspectives and providing social and instrumental supports that meet people where they are and account for the challenges they face. Our findings served as a foundation for collective planning about pediatric primary care transformation in subsequent stages of the human centered design process.