Parenting a Child with a Functionally Univentricular Heart: Mothers’ Experiences of Role and Identity

Abstract

This qualitative study aimed to explore how having a child with a functionally univentricular heart (FUH) affected mothers’ experiences of their parental role and identity. Eight mothers whose children had undergone the Fontan surgical procedure were recruited via social media. Interviews were completed using Microsoft Teams and audio-recorded, then transcribed and analysed using Interpretative Phenomenological Analysis. Four themes were identified: (1) being a “heart mum”, (2) managing competing roles: “you have to wear lots of different hats all at the same time”, with subthemes (a) promoting normality vs. protecting the child and (b) mothering vs. nursing roles, (3) loss and regaining of identity and (4) relinquishing control and letting go of caring roles. Parenting children and young people (CYP) with FUH presented significant challenges to mothers’ parental role and identity, which they managed in various ways. There are implications for health services to support mothers with their psychological wellbeing, managing nursing roles and their child’s transition to adulthood.