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- Title
Parenting a Child with a Functionally Univentricular Heart: Mothers' Experiences of Role and Identity.
- Authors
Dandy, Shannon; Wittkowski, Anja; Murray, Craig
- 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. Highlights: Mothers described a "heart mum" identity, which was reported to consume their personal identity. Balancing parental roles involved challenging emotional and practical responsibilities. Mothers found it difficult to let go of caring roles, with implications for their coping.
- Subjects
CONGENITAL heart disease; QUALITATIVE research; CHRONIC diseases in children; INTERVIEWING; NURSING models; PARENTING; ATTITUDES of mothers; SOUND recordings; THEMATIC analysis; BURDEN of care; PSYCHOLOGY of mothers; CHILD development; RESEARCH methodology; PSYCHOLOGICAL stress; MOTHERHOOD; PHENOMENOLOGY
- Publication
Journal of Child & Family Studies, 2024, Vol 33, Issue 8, p2401
- ISSN
1062-1024
- Publication type
Article
- DOI
10.1007/s10826-024-02865-4