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Experience-based co-design informed development of a toolbox to help optimise primary care support during transition
Emma Chapman1, Sarah Mitchell2, Lorna Katharine Fraser3
1Academic Unit of Palliative Care, University of Leeds, Leeds, UK e.j.chapman@leeds.ac.uk.
Insights
The HOPSCOTCH study develops a toolbox to improve primary care for young people with life-limiting conditions during their transition from children's hospice care. This research uses co-design methods to enhance support and communication for these vulnerable patients.
Area of Science:
- Palliative Care
- Pediatric Healthcare
- Health Services Research
Background:
- Young people with life-limiting conditions (LLC) require seamless transitions between pediatric hospice and primary care services.
- Current primary care support during this transition is often suboptimal, necessitating targeted interventions.
- The HOPSCOTCH study addresses this gap by focusing on enhancing primary care engagement.
Purpose of the Study:
- To develop a toolbox to facilitate primary care services' engagement in the care of young people with LLC.
- To specifically address the transition period from children's hospice care to broader community and primary care settings.
- To improve the continuity and quality of care for young people with LLC during critical care transitions.
Main Methods:
- Utilizing Experience Based Co-Design (EBCD) methodology, including individual interviews with young people, families, and healthcare professionals (HCPs).
- Producing a 'catalyst film' from interview extracts to highlight key transition experiences.
- Conducting role-specific workshops and documentary analysis to inform toolbox development, guided by the UK Medical Research Council complex intervention framework and the Behaviour Change Wheel.
Main Results:
- The study is in the developmental phase, with methods focused on co-design and intervention development.
- Key issues for the toolbox are being prioritized through shared workshops involving young people, families, and HCPs.
- Documentary analysis will provide context on existing transition support resources.
Conclusions:
- The HOPSCOTCH study aims to create a practical resource (toolbox) to improve primary care support for young people with LLC transitioning from hospice care.
- The co-design approach ensures the developed tools are relevant and responsive to the needs of young people, families, and healthcare providers.
- Effective dissemination strategies will ensure the toolbox reaches key stakeholders, enhancing care delivery and knowledge transfer.
Introduction:
The HOPSCOTCH study 'Helping Optimise Primary Care Support During Transition From Children's Hospice Care' aims to develop a toolbox to enable engagement of primary care services in the care of young people with life-limiting conditions (LLC) with a specific focus on the point of transition from children's hospice services.
Methods And Analysis:
Individual interviews will be held with young people with LLC, their families and healthcare professionals (HCPs). In alignment with Experience Based Co-Design (EBCD) methodology, extracts of film and audio from young people and family interviews will be combined to professionally produce a 'catalyst film' highlighting key points and experiences before, during and after the transition from children's hospice care. Role-specific workshops will be held with young people with LLC, their families and HCPs working in primary care, children's hospices and adult hospice services. The catalyst film will be used in feedback workshops to prompt prioritisation of key issues to take forward into toolbox development in a shared young people, family and HCP workshop. A documentary analysis of resources currently used to support transition and communication between care settings will support contextual understanding of the transition process. Young people, parents and professionals have shaped and continue to have influence over the study delivery as advisors alongside a multidisciplinary steering committee.The study design has been guided by the UK Medical Research Council complex intervention framework. Intervention development draws on the principles of EBCD and is theoretically driven by the Behaviour Change Wheel.
Ethics And Dissemination:
The study is registered with the UK's Clinical Study Registry (ISCTRN75964234).Ethical approval was obtained from Wales 3 ethics board on 2 July 2025 (IRAS ID 334486). This study will include ongoing dissemination and knowledge transfer to key audiences (young people, parents, service providers, commissioners) via publications, national bodies, knowledge exchange events, web-based platforms, social media and clinical/academic forums.
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