Abstract
Background: The transition from paediatric to adult healthcare is a complex, multi-dimensional process that must address the medical, psychosocial, educational, and vocational needs of young people (YP) with lifelong health conditions. Effective transition of care (TOC) services are crucial for promoting continuity of care, self-management, and positive health outcomes, yet current services often fall short in meeting these needs. The Irish Health Service Executive (HSE) department for clinical design and innovation are collaboratively designing a new national framework to integrate child and adult care in acute and community settings. The HSE national patient engagement experience framework tool “Your Voice Matters” was used to develop a national survey capturing the perspectives of YP, their families, and caregivers to inform a co-produced framework for improving transition services.
Approach: "Your Voice Matters" launched a survey, developed collaboratively with key stakeholders including Ireland’s Youth Advisory Council, aiming to capture lived experiences and identify person-centred improvement opportunities. This survey, available from September 2023 to July 2024, included both quantitative and qualitative questions designed to assess transition needs comprehensively. To ensure inclusivity, the survey targeted all healthcare services across Ireland and was expanded to include YP aged 14–17 as of April 2024. Data was collected and analysed using Sensemaker® software, this enabled structured insights while identifying nuanced personal experiences.
Methodology: The survey, open to individuals across the Republic of Ireland with a range of health conditions and disabilities, garnered 118 responses, including 76 from family members and 40 from YP aged 14–26. Participants spanned 14 counties and engaged with 21 different healthcare specialties, offering a broad representation of the challenges encountered in transitioning to adult care.
Results: The survey highlighted several key barriers to effective transitions:
•Feelings of Isolation: Parents and YP frequently felt unsupported and overlooked in the transition process, with YP in particular expressing sentiments of abandonment.
•Communication Gaps: Many respondents cited unclear and insufficient communication from healthcare teams.
•Inadequate Transfer of Information: Parents and YP reported insufficient coordination between paediatric and adult services, leaving families to manage transitions independently.
•Expertise Deficit: Participants highlighted a shortage of adult healthcare practitioners with the expertise to provide appropriate care for YP with rare, complex, or neuro-diverse conditions, leaving many to rely solely on GPs who lack specialised training.
•Insufficient Preparation: YP lacked opportunities to develop self-management and self-advocacy skills necessary to take gradual responsibility for their care.
Outcome: The data collected in Ireland reflects a common international experience where YP feel abandoned and "face a cliff edge" during the TOC, a period marked by significant physical, psychological, and social changes. Sharing national data and personal stories of YP and their families with clinicians and healthcare leaders has highlighted the urgent need for change. By analysing these challenges, the TOC team has identified key system deficits and used this insight to co-design a new webpage and a national standards framework for TOC, paving the way for improved support and care.