Bridging the divide between families and health professionals' perspectives on family-centred care

Abstract

Objectives: To describe and discuss key findings from a recent research project that challenge an increasingly prevalent theme, apparent in both family-centred care research and practice, of conceptualizing family-centred care as shifting care, care management, and advocacy responsibilities to families. The purpose of the research, from which these findings emerged, was to develop a conceptualization of family-centred care grounded in the experiences of families and direct health-care providers.

Design: Qualitative research methods, following the grounded theory tradition, were used to develop a conceptual framework that described the dimensions of the concept of family-centred care and their interrelationships, in the substantive area of children's developmental services. This article reports on and extends key findings from this grounded theory study, in light of current trends in the literature.

Setting and participants: The substantive area that served as the setting for the research was developmental services at a children's hospital in Alberta, Canada. Data was collected through focus groups and individual interviews with 37 parents of children diagnosed with a developmental problem and 16 frontline health-care providers.

Findings: Key findings from this research project do not support the current emphasis in family-centred care research and practice on conceptualizing family-centred care as the shifting of care, care management, and advocacy responsibilities to families. Rather, what emerged was that parents want to work truly collaboratively with health-care providers in making treatment decisions and on implementing a dynamic care plan that will work best for child and family.

Discussion and conclusions: A definition of collaboration is provided, and the nature of collaborative relationships described. Contributing factors to the difficulty in establishing true collaborative relationships between families and health-care professionals, where the respective roles to be played by health-care professionals and families are jointly determined, are discussed. In light of these findings we strongly advocate for the re-examination of current family-centred care policy and practice.