Views and experiences of young people, their parents/carers and healthcare professionals of the advance care planning process: A summary of the findings from a qualitative study

Abstract

BACKGROUND: Advance care planning for young people is relatively new in the UK. There is a lack of understanding about the engagement of young people in their own planning process, optimal timing of discussions and the facilitators and barriers to the engagement of young people. AIM: To explore the views and experiences of young people, their parents/carers and HCPs of the advance care planning process. DESIGN: A qualitative study, using semi-structured interviews with young people, their parents/carers and healthcare professionals across four case series. Data were analysed using thematic analysis. PARTICIPANTS: Fifteen participants were interviewed: young people (n = 2), parents/carers (n = 5) and healthcare professionals (n = 8). RESULTS: Three themes were identified from the findings. Key findings related to barriers and facilitators of engaging young people in their own care planning were apparent in the following areas: misperception of terms; hierarchies of power in relationships; and a flexible and innovative organisational structure and culture. CONCLUSION: Participants expressed a variety of views and experiences of advance care planning. Advance care planning was thought to be best initiated by a consultant when the young person is in their mid-teens, their condition is stable, and before they transition to adult care. Engagement was also considered to be facilitated by appropriate communication, developing relationships prior to initiating advance care planning, and written support for everyone involved in the process. These factors were supported by training and education for healthcare professionals and a flexible and innovative structure and cultures of organisations.