Children and family’s experiences while living with congenital heart disease in Northwestern Ontario

Abstract

Background: Within Canada, heart defects are the most serious congenital condition and a leading cause of infant mortality. This research highlights what is often overlooked: the day-to-day realities of children and families living with congenital heart disease (CHD) in Northern contexts. Purpose: The purpose of this dissertation was to explore the experiences and day-to-day realities of children diagnosed with CHD and their families living in rural, remote, and northern areas of Northwestern Ontario. Methods: This research was underpinned by Bronfenbrenner's Bioecological Theory and van Manen's hermeneutic-phenomenological approach. A total of 14 families participated, comprising 27 individuals, including 13 mothers, 4 fathers, and 10 children diagnosed with CHD. Data were collected through semi-structured interviews with children and their parents, alongside the use of field notes. Children underwent a two-phase consent process; first, parental consent was obtained, followed by the child’s assent. Analysis: Child and parent interview data were analyzed using van Manen's hermeneuticphenomenological approach. Findings: Parental findings centred around the core theme of liminality with four additional themes: 1) Torn from the Ordinary: Living Apart for Care, 2) Care in Pieces Across the Northern Landscape, 3) Fragile Bodies: Lasting Imprints of Ruptures in Time, 4) Embodied Hypervigilance: Protective Parenting. Four core themes emerged from the child findings, including 1) Children living in normalcy, 2) Feeling different in physical activities, but not defined by it, 3) Emerging health agency: From passive to active agents in care, and 4) Remembering with others: Development gaps and relational memory Conclusions: Clear differences emerged in how CHD is lived within families. Considering the coexistence of both liminality and normalcy within the same family unit highlights the complexity of lived experiences, particularly living with CHD in a northern context where geography and access have significant influence over health care trajectories. The findings suggest that the experiences of families in the north caring for children with CHD are shaped by much more than the illness and must be understood within the broader interconnected systems in which they live. There is a critical need for further qualitative research, in particular with children living with CHD in northern contexts and their families.