Smooth transitions: Guiding young people to adult palliative care.
Every year, thousands of young people with complex needs face one of the biggest challenges of their lives: leaving paediatric palliative care behind and stepping into the world of adult healthcare. Based on insights from the A10! Program, we* approach this transition in two key phases: first, the preparation of both the patient and their family to face adulthood with confidence and resilience; and second, the transfer of care, which emphasizes collaboration between care teams, building new relationships, ensuring continuity and safety, and creating a supportive experience for everyone involved.
1. Preparation: Building Confidence and Resilience
Personalized Care Plans: Creating Unique Journeys
In the transition to adult palliative care, there is no one-size-fits-all path. That is why transition programs should prioritise individualised care plans. These personalised plans address not only medical requirements but also social and emotional needs, making transitions feel more manageable. By collaborating with primary care providers, pediatric specialists, and adult care teams, we ensure that every voice, especially the family’s, is heard.
Eric, a young patient affected by a rare, complex condition, worried about leaving the comfort of pediatric care. Together, we devised a gradual transition plan that included joint visits with both pediatric and adult care teams, giving the family time to adjust to the new faces and systems at their own pace. In their words, “We couldn’t have done this without the understanding and support each of you provided.”
"When we started working with young people like Eric, we saw how daunting this process could be. Watching him overcome these challenges with the right support has been one of the most rewarding moments."
Research supports this tailored approach, showing that individualised care contributes to smoother transitions and improved outcomes (Fegran et al., 2014).
Training and Education: Preparing for New Responsibilities
Preparing young people for adult care starts early, and the program offers tailored, age-appropriate training beginning around age 13. This guidance helps them learn to manage medications, recognise symptoms, and navigate appointments, so that patients gradually build confidence in managing their own health needs. For many, this journey is transformative, helping them transition to a more independent role.
Many young people express similar feelings about the transition, remarking that while it’s difficult to leave behind the familiar team and hospital they've known for years, they recognise that growing up involves taking on new challenges. They often express gratitude for the support received, the way their concerns were heard, and the encouragement provided at every step of the journey.
Reflections like these are common, and research highlights the importance of early preparation, showing that it leads to lower hospital re-admissions and greater self-management skills (Coyne et al., 2019). With the right guidance, young people facing complex health needs can transition more smoothly and confidently into adult care.
Emotional Support: Recognizing the Impact of Change
Leaving familiar healthcare providers and routines can be emotionally challenging. Many young people and families experience fear, sadness, and even a sense of loss as they face this new phase. A holistic approach that includes advising and psychological support helps families navigate these emotions, fostering resilience and a sense of readiness. By addressing these often-overlooked aspects of transition, we help families and patients approach this new chapter with a sense of hope (Young et al., 2016).
2. Transfer: Coordinating and Connecting Care
Multidisciplinary Collaboration: Supporting Patients Holistically
Transitions require a collaborative team. Programs must bring together pediatric specialists, adult providers, palliative care experts, and mental health professionals, creating condition-specific protocols to address each patient’s comprehensive needs. This approach allows us to support both medical needs and the psychological challenges of this transition. Studies show that this coordinated, holistic care improves symptom management and continuity of care (Friedrichsdorf & Bruera, 2018).
Thoughtful Preparation: Taking Steps Together
Planning the transition well in advance, usually 12 to 24 months before the transfer, allows families and providers to prepare thoroughly. During this period, shared meetings, detailed documentation, and formal handovers ensure that no detail is missed, improving communication and helping young people feel more comfortable with new providers. A collaborative approach ensures smoother transitions and improved outcomes. (Betz et al., 2015).
Looking to the Future: The Heart of the A10 Program
For patients and families, transitioning to adult care can feel like stepping into the unknown, but the A10! Program is here to light the way. With early preparation, personalised care plans, and unwavering emotional support, we aim to turn every transition into a journey of growth and empowerment.
References
- Fegran, L., et al. (2014). Adolescents' and Young Adults' Transition Experiences when Transferring from Pediatric to Adult Care: A Qualitative Meta-Synthesis. Journal of Advanced Nursing, 70(10), 2296-2310.
- Coyne, I., et al. (2019). Self-management in children with long-term conditions: Concept analysis. Journal of Advanced Nursing, 75(11), 2584-2596.
- Young, B., et al. (2016). Emotional Adjustment in Families of Pediatric Chronic Illness. Journal of Child Psychology and Psychiatry, 57(4), 371-382.
- Friedrichsdorf, S. J., & Bruera, E. (2018). Delivering Pediatric Palliative Care: From Clinical Aspects to Positive Outcomes. Journal of Pain and Symptom Management,
- Betz, C. L., et al. (2015). Nursing Care for Adolescents with Chronic Conditions: Transitioning to Adult Care. Journal of Pediatric Nursing, 30(5), 1-10.
*This article is authored by Esther Lasheras, Eduard Pellicer, and Sergi Navarro from Sant Joan de Déu Hospital.