Understanding the experiences of fathers of children with congenital heart disease: An interpretative phenomenological analysis

Abstract

Little is known about the experiences of fathers of children with congenital heart disease. Using interpretative phenomenological analysis, the lived experiences of six fathers were explored. Two master themes emerged: ‘relinquishing and reclaiming control’ and ‘living in the shadow of illness’. Subordinate themes included playing the support act, a pragmatic/emotional dichotomy, and becoming the child’s protector. Other themes included living in limbo and redefining ‘normality’ to encompass the condition. Theoretical links are made between these findings and existing literature while clinical implications include the need to involve fathers in decision-making and to respect their need to maintain control.