Occupational challenges of young adult patients with congenital heart disease

Background Despite improved survival of adults with congenital heart disease (CHD), higher rates of unemployment and work-related problems are seen, especially among younger adults. This study was performed to gain insight into current barriers and facilitating experiences at work among young adult patients with CHD. Methods This qualitative study consisted of semi-structured face-to-face interviews, based on a self-constructed model from several existing models, which were held among outpatients with CHD from a large tertiary referral centre. Verbatim transcribed audio-taped data were analysed using a directed model-based content analysis approach. Results Fifteen patients had been interviewed when data saturation was reached. Work was important for all participants. Several barriers and facilitating factors were identified. Barriers were mostly on physical aspects and lack of opportunities for recovery. Important facilitating factors were good relationships with colleagues and employer and having sufficient opportunities for recovery. Most of these factors are also seen among patients with other chronic diseases, but with a different priority. Conclusion This is the first study that has identified qualitative factors at work of young adult CHD patients. Work is important to them. Challenges are dealing with the physical barriers and getting enough support from colleagues. Specific coaching or a tailored group intervention could thereby be helpful. Future research should aim at the aetiology of problems and identifying patients who would benefit most from specific coaching