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'Sometimes you don’t get to just go to hospital and get fixed, sometimes you have to spend your entire life fighting’. Fathers’ experiences when their child is born with congenital heart disease

McNee, Peter 2022. 'Sometimes you don’t get to just go to hospital and get fixed, sometimes you have to spend your entire life fighting’. Fathers’ experiences when their child is born with congenital heart disease. PhD Thesis, Cardiff University.
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Abstract The aim of this study was to explore the experiences of fathers, when their child was born with congenital heart disease (CHD). CHD is the most common congenital condition in children, affecting 8:1000 live births in the UK. CHD relates to a range of heart defects, which vary in severity and therefore the treatment required. Children born with more severe forms of CHD will require a range of surgical and medical treatments across their early years, adolescent period and for some, into adulthood. Family centred care has been described as the foundation of children’s nursing practice, however within the available healthcare literature fathers are much less visible than mothers and within the CHD literature, very few studies have presented fathers’ experiences across a range of clinical settings. Wider literature exploring the role of fathers and caring masculinities has helped to inform this study. Following a narrative methodology, the study explored fathers’ experiences through various turning points in their child’s treatment. Data were collected through the use of semi-structured interviews at two separate points in the father’s journey. Fathers’ upbringing, planning for children and their hopes for fatherhood were explored in order to gain an appreciation of who the fathers were and their expectations of parenting. There was a sense here of the expectation of a routine pregnancy and birth without complications. The fathers experienced different journeys through the same landscape. Six fathers received an antenatal diagnosis, three fathers received a postnatal diagnosis soon after birth and one father, a late diagnosis due to their son’s unrelated illness. Fathers accessed surgery for their children at six out of the eleven children’s cardiac surgical centres in the UK. All of the fathers had the treatment elements of their journey in common, clinical investigations, diagnosis, referral, transfer of care, surgery and aftercare. What was apparent was how fathers approached the disruption to the expected fatherhood narrative differently with some taking a strong lead, wanting to maintain an element of control even though this had to be given over to healthcare professionals. Other fathers, however, talked about burying their heads in the sand or being content to follow the expected treatment process. Data from the interviews are presented across three chapters, journeys to fatherhood, disruption of the expected fatherhood narrative and finally an uncertain future. Some fathers’ journeys have ended with successful surgical corrections of their child’s CHD, accessing only routine annual reviews and some sense of normality in their lives. Other fathers, however, are still facing the prospect of uncertain futures, with their child’s transition to adult services, potential heart transplantation or palliative care all possible outcomes. The findings demonstrate the importance of the role of the father and the need for greater recognition of their needs by healthcare professionals. The findings illustrate the unique ways in which fathers made sense of their experiences to date and how their experiences could have been enhanced at various points in their journey.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Healthcare Sciences
Date of First Compliant Deposit: 6 April 2022
Last Modified: 06 Apr 2022 15:21

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