The lived experiences of adults with congenital heart defects: a qualitative pilot study

Foster, H ORCID: 0009-0004-9321-6624, Lotto, R ORCID: 0000-0002-4305-0513 and Cockshott, CJ ORCID: 0000-0002-3541-6749 (2026) The lived experiences of adults with congenital heart defects: a qualitative pilot study. British Journal of Cardiac Nursing, 21 (8). pp. 1-12. ISSN 1749-6403

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Abstract

Background:
The number of adults living with congenital heart defects in the UK is increasing – yet little qualitative research has explored their lived experiences within the context of the NHS.

Aim:
This study used interpretative phenomenological analysis to explore how adults living with congenital heart defects in the UK make sense of their condition in everyday life.

Findings:
Three themes were identified: (1) loss and mortality, with participants describing a heightened awareness of death shaped by peer and family bereavement; (2) mental health and congenital heart defects, including emotional strain, feelings of burden and inadequate psychological support; and (3) post-surgical support, marked by inconsistent follow-up, variable access to rehabilitation and gaps in continuity of care.

Conclusions:
This exploratory study highlights how adults with congenital heart defects may be medically visible but psychosocially overlooked. While services address physical health needs, participants reported unmet psychological and social needs. These findings underscore the importance of proactive psychosocial support across the lifespan and the need for further UK-based research.

Item Type:	Article
Uncontrolled Keywords:	4203 Health Services and Systems; 4205 Nursing; 42 Health Sciences; Congenital Structural Anomalies; Heart Disease; Cardiovascular; Congenital Heart Disease; Pediatric Research Initiative; Rare Diseases; Mental Health; Clinical Research; Behavioral and Social Science; 7.1 Individual care needs; 7.3 Management and decision making; 8.1 Organisation and delivery of services; 3 Good Health and Well Being; 1102 Cardiorespiratory Medicine and Haematology; 1110 Nursing; 1117 Public Health and Health Services; 4205 Nursing
Subjects:	R Medicine > R Medicine (General) R Medicine > RT Nursing
Divisions:	Nursing, Public and Allied Health
Publisher:	Mark Allen Group
Date of acceptance:	20 June 2026
Date of first compliant Open Access:	17 September 2026
Date Deposited:	16 Sep 2026 13:46
Last Modified:	17 Sep 2026 00:50
DOI or ID number:	10.12968/bjca.2025.0061
URI:	https://researchonline.ljmu.ac.uk/id/eprint/29453

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