Caring for adults with congenital heart disease in primary care: A qualitative study of generalist health care professionals’ experiences

Lotto, R ORCID: 0000-0002-4305-0513, Jones, I, Moons, P and Ellison, S Caring for adults with congenital heart disease in primary care: A qualitative study of generalist health care professionals’ experiences. Journal of Primary Care & Community Health. ISSN 2150-1319 (Accepted)

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Abstract

Objective
To explore how primary and community-based healthcare professionals (HCPs) experience supporting adults with congenital heart disease (ACHD) in generalist healthcare settings.

Methods
A qualitative interpretive study was conducted with 18 UK primary care HCPs, including general practitioners and advanced clinical practitioners. Semi-structured interviews were analysed using reflexive thematic analysis.

Results
An overarching theme, balancing knowledge, care and constraint, captured how HCPs supported adults with ACHD while navigating uncertainty, relational responsibility and fragmented systems. Three interconnected themes were identified: navigating uncertainty, reflecting limited ACHD knowledge and infrequent exposure; sustaining relationships, highlighting the role of continuity and familiarity in maintaining care; and working around the system, describing how participants adapted to unclear pathways, inconsistent communication and organisational constraints. Despite limited condition-specific knowledge, participants described recognising concerns, coordinating care and sustaining continuity across fragmented services.

Conclusion
As increasing numbers of adults with ACHD receive care beyond specialist centres, primary and community-based HCPs play a crucial role in recognising concerns, coordinating care and maintaining continuity. Participants’ accounts highlight the often-unseen relational and coordinating work required to keep patients connected to appropriate care despite uncertainty and organisational constraints. Strengthening ACHD care therefore requires more than condition-specific education; it depends on healthcare systems that facilitate communication, collaboration and shared responsibility across specialist and generalist services.

Item Type:	Article
Uncontrolled Keywords:	1117 Public Health and Health Services; 1199 Other Medical and Health Sciences; 4203 Health services and systems; 4205 Nursing; 4206 Public health
Subjects:	R Medicine > RT Nursing
Divisions:	Nursing and Advanced Practice
Publisher:	SAGE Publishing
Date of acceptance:	22 June 2026
Date Deposited:	23 Jun 2026 10:36
Last Modified:	23 Jun 2026 10:36
URI:	https://researchonline.ljmu.ac.uk/id/eprint/28882

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