HOPSCOTCH
Research type
Research Study
Full title
Helping Optimise Primary Care Support During Transition From Children’s Hospice Care.
IRAS ID
334486
Contact name
Lucy Ziegler
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
1 years, 11 months, 9 days
Research summary
There are more than 86000 children and young people living with a condition that will shorten their life in England. Many children with life-limiting conditions are cared for by children’s hospices. Until recently, care from children’s hospices often started in infancy and extended into adulthood. This model of care is no longer possible due to the rapidly growing population of young people with life limiting-conditions and their increased life expectancy. As children with life-limiting conditions become young adults they now leave the care of children’s hospices and move into adult services.
Research shows that the role of the General Practitioner (GP) is critical to providing quality palliative care. Their involvement reduces emergency hospital admissions and enables person centred care. Despite this, most GPs are not involved in the care of young people with life-limiting conditions or in transition planning from children’s to adult services. Our UK wide survey of children’s hospices found only one hospice involved the GP in the transition process. Barriers to involvement include GP's feeling they lack knowledge, time and the processes for effective communication.
HOPSCOTCH aims to develop a toolbox of resources, with modules for patients, primary care and children’s hospices, to enhance the involvement of GP practices in the care of young people with life-limiting conditions particularly during transition. We will use an approach to maximise patient and family involvement. We will work in partnership with young people and their families to ensure the toolbox is patient centred and addresses barriers the research evidence has identified. We will review information currently shared between children’s hospices and GPs and interview primary care staff, hospice staff and young people and families. A subsequent feasibility and acceptability study will follow a cohort of 24 young people transitioning from children’s hospice services. An additional ethical review application will be submitted.
REC name
Wales REC 3
REC reference
25/WA/0181
Date of REC Opinion
2 Jul 2025
REC opinion
Further Information Favourable Opinion