Conceptualizations of health, ability to act upon those definitions and desire for supports among families from historically marginalized communities

Abstract

Respect for parents' values and clinician–parent collaboration is less common among families from historically marginalized communities. We investigated how parents from marginalized communities operationalize health and their preferences for paediatric primary care. We recruited families who spoke English, Haitian Creole or Spanish with at least one child younger than 6 years old. Staff queried families' values and life experiences, perspectives on health and healthcare, social supports and resources. Fourteen interviews with the parents of 26 children were thematically analysed. Interviews revealed the following four themes: (1) parents' definitions of ‘health’ extend beyond physical health; (2) families' ability to actuate health definitions is complicated by poverty's impact on agency; (3) parents engage in ongoing problem recognition and identify solutions, but enacting solutions can be derailed by barriers and (4) parents want support from professionals and peers who acknowledged the hard work of parenting. Eliciting parents' multidimensional conceptualizations of health can support families' goal achievement and concern identification in the context of isolation, limited agency and few resources. Efforts to improve family centred care and reduce disparities in paediatric primary care must be responsive to the strengths, challenges, resources and priorities of marginalized families.