Background Children’s hospice patients are likely to experience complex and challenging transitions to adult services (Together for Short Lives 2023), involving more than one specialty and often multiple services. Family feedback given at our Transition Workshops, family engagement events and through surveys and informal feedback informed us that families did not have access to a simple overview of what transition looked like holistically.
Aims To develop accessible information that improves transition experiences and was visually simple, included all wider elements of transition and was young person focused rather than service-focused.
Methods The need for a timeline was identified by families (National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services. [NG43], 2016), who had reported either receiving no written information or numerous pieces of written information (each focused on different services) or had received conflicting/confusing information. We tested the initial hypothesis by researching online and engaging with transition networks and were unable to find a leaflet or similar presentation of transition information which was simple, holistic and acted as a guide to the general timings of a ‘Complex Transition.’ Following families initially identifying the need, the timeline was co-produced with families by ensuring each version of the timeline created was tested with families for ease of use, relevance and usefulness.
Results A Transition Timeline was created, including elements of transition from a health, education, social and legal perspective. It was placed online (where it is regularly accessed) and shared with all young people on the caseload aged 14 – 25 and is referred to at in-person Transition Workshops within the hospice.
Conclusion Transition information must be coordinated, easy to use, and accessible. Transition Information which is holistic is not easily available. In particular, information which is person-centred rather than service-focused is highly valued by young people and parents alike.
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