Background The number of children with life limiting conditions surviving through childhood and requiring access to Adult SPC services has dramatically increased over the last decade. Previous research has identified that Adult services are willing but concerned about looking after these young adults, many of whom have non-malignant diagnoses and have needs unfamiliar to adult services. This paper describes the development of a programme to address this issue, to improve the experience of the young people accessing adult SPC services, and support the staff delivering the care.
Aims To develop an innovative programme of training to up-skill the multidisciplinary SPC teams. To involve young adults in the development and delivery of the programme. To ensure the content of the training is relevant and covers physical, psychological and social areas. To improve the experience of young adults accessing adult SPC services To create a programme that is potentially transferable and deliverable to other adult SPC teams across the UK.
Methods The project is being taken forward through joint working between a Children's hospice and an Adult Hospice. The content of the programme is being developed through the use of focus groups including young people with SPC needs, their families, staff from a local residential school caring for young adults with complex disability, staff from Hospices for young adults, and from the local Children's and Adult Hospices involved in the project. The delivery of the programme will include formal and informal learning, guided reflection, shadowing placements and a’service change' project relevant to the attendees. Young people will be involved throughout, from development to delivery and evaluation. This study describes the process by which the programme was designed, and reports back on delivery of the first part of the pilot.
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