Living with complex congenital heart disease: exploring the experiences of adolescents and parents- a qualitative enquiry

Kinsey, L (2026) Living with complex congenital heart disease: exploring the experiences of adolescents and parents- a qualitative enquiry. Masters thesis, Liverpool John Moores University.

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Abstract

Background: Advances in diagnosis, surgery and long-term cardiac management mean that most infants born with congenital heart disease (CHD) now survive into adolescence and adulthood. For young people with complex CHD, this developmental period involves not only significant physical and medical challenges but also complex emotional, relational and social transitions. Parents similarly face uncertainty as they balance protection with supporting their adolescents’ autonomy. A deeper understanding of these interconnected experiences is needed to inform holistic, family-centred care.
Theoretical Framework: Positioned within an interpretivist epistemology and relativist ontology, this study acknowledges that experiences of complex CHD are socially, emotionally and relationally constructed. The research prioritises participants’ meaning-making and the contextual nature of family life.
Methods: A qualitative design, guided by Braun and Clarke’s Reflexive Thematic Analysis (RTA), explored the subjective experiences of adolescents with complex CHD and their parents. Seventeen semi-structured online interviews were conducted over twelve months (eight adolescents / nine parents). Adolescent and parent datasets were analysed separately and then comparatively to identify convergences, divergences and negotiated understandings within family relationships.
Findings: Three overarching themes captured shared and distinct experiences across families: (1) Feelings of uncertainty and unpreparedness: encompassing gaps in understanding, inconsistent communication and worry about prognosis and transition to adult services. (2) Conflicts around control and responsibility: reflecting tensions between parental protection and adolescents’ desire for autonomy as they assume increasing responsibility for their health. (3) A sense of community: highlighting the importance of supportive relationships within families, peer groups, schools and healthcare, although access to consistent psychosocial support was variable. Together, these themes illustrate how adolescents and parents co-construct meaning around CHD and engage in ongoing emotional and relational work that is often invisible within clinical encounters.
Conclusion: This study provides new insight into how adolescents with complex CHD and parents navigate illness, identity, autonomy and transition as a shared family process. The findings emphasise the need for developmentally attuned communication, integrated psychosocial support and collaborative, family-centred transition planning. By examining adolescent and parental perspectives side by side, the study extends current knowledge and strengthens relational, developmental and organisational approaches to complex CHD care.

Item Type:	Thesis (Masters)
Uncontrolled Keywords:	Congenital Heart Disease; Adolescent; Parent; Mother; Father; Transition; Lived experience; Qualitative
Subjects:	R Medicine > RT Nursing
Divisions:	Nursing and Advanced Practice
Date of acceptance:	4 June 2026
Date of first compliant Open Access:	7 July 2026
Date Deposited:	07 Jul 2026 13:55
Last Modified:	07 Jul 2026 13:56
DOI or ID number:	10.24377/LJMU.t.00028879
Supervisors:	Lotto, R, Jones, I and Van Miert, C
URI:	https://researchonline.ljmu.ac.uk/id/eprint/28879

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