Longer-term experiences of families of children with dextro-transposition of the great arteries: a qualitative study.

Abstract

Explore longer-term psychosocial adaptation to congenital heart disease among families of children with dextro-Transposition of the Great Arteries (d-TGA). In this qualitative study, semi-structured interviews were conducted for 16 families (16 mothers, 12 fathers, 9 siblings) and analyzed using an inductive thematic approach. Key qualitative themes included parents reflecting "back then" when 1) navigating hospital and healthcare experiences, 2) challenges to psychosocial wellbeing and family functioning, and 3) coping and support needs were greatest. Parents described 4) key transitions and defining moments, and 5) feeling "lucky" and grateful for contemporary cardiac care and when compared to families of children with univentricular conditions and valuing a "normal" life. Furthermore, 6) the surgical scar served as a constant reminder of past experiences and 7) uncertainty about the role of the cardiac condition in their child's development persisted for some parents. Key themes among siblings included 1) having a "normal" family life, 2) positive and negative aspects of the sibling relationship, and 3) limitations in understanding their sibling's cardiac condition. Families of children with d-TGA value "normal" family lives years after surgical intervention. To improve care and support, a focus on positive psychosocial adaptation, including individual and family resilience, parental perceptions of surgical scars, and self-reported sibling experiences, is required. Families of children with complex congenital heart disease are at risk for psychosocial and family functioning difficulties. Research has focused on early experiences of diagnosis and hospitalization, with limited evidence of longer-term experiences. Using qualitative methodology, we explored the lived experiences of families of children with dextro-Transposition of the Great Arteries concerning longer-term psychosocial adaptation to congenital heart disease. Despite ongoing illness uncertainty and reminders of previous medical experiences, parents and siblings of children with dextro-Transposition of the Great Arteries predominantly described positive adaptation and living and valuing their "normal" family lives years after arterial switch operation.