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

Abstract

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.ObjectiveThis qualitative study describes factors affecting continued follow-up as perceived and experienced by young adults with CHD.ParticipantsUsing 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.SettingParticipants were recruited from all seven university hospitals in Sweden, which is considered a low-prevalence setting in terms of discontinuation.DesignIndividual interviews were performed and subjected to qualitative content analysis.ResultsThe 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.ConclusionFactors 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.

Young adults' perception of transition from paediatric to adult care

“…Common experiences include extended wait times for medical appointments, increased responsibility for their medical care, and a general lack of continuity in connection to healthcare services 9,12 . Meeting adult healthcare services while feeling uneducated and unprepared can lead to a lack of follow‐up and loss of compliance 13 . Since AYAs in transition tend to be more vulnerable, 14 their health may be affected.…”

“…It can include significant health risks. Previous studies have shown transfer to be linked with lack of treatment adherence, 13,22 and psychosocial burdens 4,23,24 that can affect the continuity of care 9 . Psychological distress from long‐term illness can also create a barrier to self‐management 23 .…”

“…9,12 Meeting adult healthcare services while feeling uneducated and unprepared can lead to a lack of follow-up and loss of compliance. 13 Since AYAs in transition tend to be more vulnerable, 14 their health may be affected. Understanding young adults' experiences of the transition could enhance our understanding of the post-transfer health risks.…”