Bridging communication gaps to improve adult congenital heart disease care: patient perspectives from a qualitative study

BACKGROUND: Adults with Congenital Heart Disease (CHD) require lifelong specialist care, yet many report communication challenges that undermine health understanding, managing their condition and their overall wellbeing. Effective specialist-patient communication is associated with better outcomes, but little research has explored adult CHD (ACHD) patients’ perspectives on these interactions. METHODS: This qualitative study was conducted as part of a larger investigation of ACHD care in Australia. Using purposive sampling, 43 adults aged 20–54 years with mild, moderate, or severe CHD were recruited from four hospitals. Semi-structured interviews were conducted via video conferencing, transcribed, and analysed using Framework Analysis. Rigour was maintained through double coding, iterative refinement of the thematic framework, and multidisciplinary team review. RESULTS: Four themes shaped patient experiences of communication: (1) fragmented communication between providers; (2) inadequate patient-facing communication; (3) gaps in understanding of condition; and (4) emotional impacts of suboptimal communication. Conversely, clear, respectful, and empathic communication fostered trust, confidence, and adherence. Participants recommended structured handovers, accessible records, plain-language explanations, visual and written aids, and routine psychosocial support. CONCLUSIONS: This study demonstrates that communication in ACHD care is not merely an aide to clinical management but a defining element of quality, continuity, and patient wellbeing. Participants’ experiences revealed that fragmented inter-specialist communication and limited patient-facing explanations contribute to confusion, care discontinuity, and emotional distress. These findings highlight that improving communication practices is essential to strengthening patient autonomy, mitigating psychosocial burden, and sustaining engagement in lifelong specialist care. PRACTICE IMPLICATIONS: ACHD services should establish structured handover pathways, shared records, and designated care coordinators to minimise fragmentation. Specialists could engage patients more directly with age-appropriate, plain-language discussions, progressive transfer of responsibility during adolescence, and revisiting knowledge in adulthood. Incorporating visual aids, written summaries, and psychosocial screening into routine practice, alongside training specialists in empathic, patient-centred communication, could strengthen trust, improve adherence, and enhance long-term outcomes.