Helping Optimise Primary Care Support During Transition From Children’s Hospice Care (HOPSCOTCH)

Start date: 1 September 2024
End date: 31 August 2027
Funder: National Institute for Health and Care Research (NIHR)
Value: £960,522
Partners and collaborators: King’s College London, Northumbria University, Noah’s Hospice, Together for Short Lives, St Oswald’s Hospice, NHS West Yorkshire Integrated Care Board
Primary investigator: Professor Lucy Ziegler
Co-investigators: Dr Sarah Mitchell, Dr Emma Chapman
External co-investigators: Professor Lorna Fraser, Dr George Peat, Dr Joanna Elverson, Ms Katie Tallowin, Mr Paul Carder, Dr Tagore Charles, Miss Jordanne Wozencroft, Mr Ben Morris

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Description

Joint PIs –Professor Lucy Ziegler and Dr Sarah Mitchell

More than 86,000 children and young people live with a condition that will shorten their life in England. Many will of these children and young people receive care from 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 these young people or in planning of transition from children’s hospice.

Barriers to involvement include GP's feeling they lack knowledge, time and processes for effective communication.

Aims

Understand and identify opportunities to enhance engagement of general practice in the coordination and delivery of care to young people as they transition from children’s hospices.
Work in partnership with young people, their families and healthcare professionals to co-design a complex intervention (the HOPSCOTCH toolbox) to facilitate this enhanced engagement.
Examine use of the toolbox in a feasibility and acceptability study with 24 young people as they transition from children’s hospice.

Objectives

Identify opportunities to enhance engagement between children’s hospices and primary care, we will review information about transition currently shared between hospices and GPs and between hospices and families.
Identify opportunities for primary care staff to engage with young people with life limiting conditions and their family, we will carry out interviews with healthcare professionals, young people with life-limiting conditions and their families.
Work in partnership with young people, families and healthcare professionals to develop an intervention ‘toolbox’ to support effective engagement. We will use a method adapted from the principles of experience-based co-design (EBCD).