What Does Family-Centered Care Mean to You? A Qualitative Study Examining Perceptions of Mothers of Children With Medical Complexity

Abstract

Although family-centered care (FCC) has been widely studied in pediatric settings, research focusing on families of children with medical complexity is limited, especially regarding parental perspectives in the Canadian context. This study explored how mothers of children with medical complexity conceptualize FCC. A qualitative approach was employed, using semi-structured interviews for data collection. Purposive sampling was used to recruit 19 mothers of children with medical complexity (aged 0–18 years) residing in British Columbia, Canada. Five key themes emerged: (a) Meeting families where they are; (b) Understanding family roles, responsibilities, and preferences; (c) Recognizing that family needs are dynamic and require ongoing reassessment; (d) Encouraging open communication and feedback; and (e) Acknowledging that the health of the child and parents is inextricably linked. Findings provide insights to guide policy and best practices for this population, who represent some of the highest users of pediatric health care services in Canada.