Parent’s Perspectives on How They Cope With the Impact on Their Family of a Child With Heart Disease

Studies of familial coping with a child’s chronic condition have highlighted psychological distress; family functioning; and quality of life; as issues that demand coping strategies. There are conflicting findings on impact and coping and a paucity of information about the specific coping challenges for parents of a child with heart disease, with few qualitative studies in this area. The purpose of the study was to explore the way parents coped with their child’s heart condition as it impacted on different domains of family functioning.

In this qualitative study, interviews were held with 17 parents attending a pediatric hospital-based family support program in 2015. Fifteen of the 17 children’s conditions were classified as “major”. Domains covered in the interviews included: coping challenges posed at different stages of the illness trajectory, parenting, condition management, transitions, psychological impact, social support and coping strategies. Interview transcripts were coded thematically. Multiple points of stress and challenges to coping were identified: coping with the diagnosis, including consideration of termination; dealing with the challenges facing their child; coping with parenting including co-parenting issues; the role of social support in coping; and identification of adaptive and maladaptive coping behaviours.

A large range of positive coping strategies were identified, as was the need for coping-focused psychological support throughout the parents’ and children’s journey. The strategies identified have formed the basis of a manualised intervention for these parents.