This research seeks to support adolescents with Cystic Fibrosis (CF) to successfully manage their health, as they prepare for their transition to adult services.
Young people with CF in Ireland face a changed clinical context with the introduction of modulator drugs such as Kaftrio. Yet, there are many unknowns associated with these treatments. A shift in clinical care is anticipated, with less demand for inpatient care and a move towards an outpatient model of care. The impact on overall self-management remains unknown.
A mixed-method approach will be used to build an evidence-base to enhance transition readiness & support self-management in youth with CF.
Work package 1 establishes a Youth Advisory Panel to support the research
Work package 2 explores the experiences of adolescents on Kaftrio. Interviews will take place with young people from paediatric services (13-17 years) and adult services (18-25 years). We will interview parents from both services. This research will identify barriers and enablers adolescents face in the management of their health, as they transition to adult services.
Work package 3 focuses on transition readiness. A nationwide survey of adolescents (13-17 years) exploring predictors of transition readiness will take place.
Work package 4 identifies the support needs of young people living with CF. This involves mapping the support needs from the above qualitative and quantitative research and identifying effective/promising interventions to meet these needs.
Work Package 5 will adapt an international peer-mentoring programme to support adolescents with CF. Group workshops will identify the optimal form of peer mentoring. Drawing on the above interviews and workshops, the mentor training will be adapted. Mentors will provide feedback on the revised training programme. Future research will pilot this programme.
The expertise of young people with CF play a central role throughout this research, both as advisors and participants in the research.
