From Fear to Vaccination: Changing Needs of Congenital Heart Defect Patients and Relatives over the Course of the COVID-19 Pandemic

<b>Background/Objectives:</b> As survival improves in congenital heart defects (CHD), psychosocial support-particularly during crises-has become increasingly important. We examined how concerns of CHD patients and their relatives evolved during the Coronavirus Disease 2019 (COVID-19) pandemic, focusing on the influence of role (patient vs. relative), gender, and CHD complexity. <b>Methods:</b> The German National Register for Congenital Heart Defects (NRCHD) conducted two nationwide online surveys in April 2020 (Survey 1) and April 2021 (Survey 2). Free-text responses were analyzed using Mayring's summarizing content analysis. Categories were coded per respondent (present/absent) for exploratory comparisons by year, role, sex, and CHD complexity. Analyses were cross-sectional and descriptive (<i>p</i>-values unadjusted). <b>Results:</b> In survey 1, 15.9%, and in survey 2, 19.3% of respondents provided qualitative information. In 2020, dominant themes included general COVID-19 information (37.3%), lack of CHD-specific information (30.4%), worry (24.1%), fear (23.2%), isolation (21.4%), and uncertainty (21.2%). By 2021, concerns shifted toward vaccination (24.1%) and vaccination prioritization (23.4%), while information gaps (21.8%) and fear (21.0%) persisted. Significant year-to-year changes included decreases in general information needs, concern, isolation, and uncertainty, and increases in prioritization (all <i>p</i> < 0.01). Relatives consistently reported higher psychological burden than patients (<i>p</i> ≤ 0.01). <b>Conclusions:</b> Concerns moved from early fear/uncertainty to vaccination and prioritization one year later, with persistent information needs across subgroups. Clear CHD-specific communication, caregiver-inclusive psychosocial support, and crisis-resilient care pathways (including telemedicine) are essential for this vulnerable population.