Parenting a child with congenital heart disease : Experiences of diagnosis, identity and parental role

Dandy, Shannon and Murray, Craig and Wittkowski, Anja (2022) Parenting a child with congenital heart disease : Experiences of diagnosis, identity and parental role. PhD thesis, Lancaster University.

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Abstract

The thesis comprises a systematic literature review, an empirical research paper and a critical reflection on the research. The aim was to qualitatively explore parental experiences of having a child with congenital heart disease (CHD), specifically of receiving the diagnosis and of parental roles and identity. The systematic literature review utilised thematic synthesis to synthesise qualitative findings regarding parents’ psychological experiences of receiving their child’s CHD diagnosis. Twenty-four papers were included in the review and four themes were identified: 1) unpreparedness for the diagnosis, 2) the overwhelming reality of CHD, 3) mourning multiple losses, and 4) redefining hopes to reach acceptance of CHD. There were individual differences in emotional experiences, but findings highlight the need for compassionate support from professionals throughout. The research paper explored mothers’ experiences of parental role and identity when parenting a child with single ventricle CHD (SVCHD). Interpretative Phenomenological Analysis (IPA) was used to analyse data from interviews with eight mothers. 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”, 3) loss and regaining of identity, and 4) relinquishing control and the need to let go. Parenting a child with SVCHD presented significant challenges to mothers’ parental role and identity, which they managed in various ways. Implications for clinical practice and future research are discussed. The critical appraisal summarises the research and provides reflections on the methodological and ethical considerations, limitations and implications of the research. The appraisal highlights the importance of reflexivity, and personal reflections on the research process are considered throughout.