Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden

In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of follow-up care. To identify facilitating factors, low-prevalence settings in terms of discontinuation should be investigated. OBJECTIVE: This qualitative study describes factors affecting continued follow-up as perceived and experienced by young adults with CHD. PARTICIPANTS: Using a mixed purposive sampling technique, 16 young adults with CHD were included. Three participants had discontinued follow-up care and 13 had continued follow-up care after transfer. SETTING: Participants were recruited from all seven university hospitals in Sweden, which is considered a low-prevalence setting in terms of discontinuation. DESIGN: Individual interviews were performed and subjected to qualitative content analysis. RESULTS: The analysis resulted in three main categories, illuminating factors affecting continued follow-up: (1) motivation for follow-up care; (2) participation in care and sense of connectedness with healthcare provider (HCP) and (3) care accessibility. The choice of continuing follow-up or not was multifactorial. Knowledge of your CHD and the importance of continuing follow-up care was a central factor, as well as experiencing CHD-related symptoms and having ongoing or planned medical treatment or interventions. Sensing a clear purpose with follow-up care was facilitating, as was feeling well treated and cared for by HCPs. Practical aspects, such as travel distance was also stressed, as well as active invitations and reminders for visits. CONCLUSION: Factors on both patient, hospital and healthcare system level were raised by participants, stressing the importance of holistic approaches when developing preventive strategies for discontinuation. There is a need for improved skills and competencies among HCPs, as well as a person-centred approach to follow-up care. In addition, specific healthcare needs and remaining transitional needs after transfer to adult care require careful consideration to prevent discontinuation.