Caring for Adults with Congenital Heart Disease in Primary Care: A Qualitative Study of Generalist Health Care Professionals' Experiences.

Abstract

ObjectiveTo explore how primary and community-based healthcare professionals (HCPs) experience supporting adults with congenital heart disease (ACHD) in generalist healthcare settings.MethodsA 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.ResultsAn overarching theme, <i>balancing knowledge, care and constraint</i>, captured how HCPs supported adults with ACHD while navigating uncertainty, relational responsibility and fragmented systems. Three interconnected themes were identified: <i>navigating uncertainty</i>, reflecting limited ACHD knowledge and infrequent exposure; <i>sustaining relationships</i>, highlighting the role of continuity and familiarity in maintaining care; and <i>working around the system</i>, 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.ConclusionAs 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.