Short-term SPPC for Children with Life-Limiting Conditions V1.0
Research type
Research Study
Full title
Short-term Specialist Paediatric Palliative Care for children with life-limiting conditions (Stage 1: Intervention Development).
IRAS ID
366389
Contact name
Lorna Fraser
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 10 months, 31 days
Research summary
Across England, more than 86,000 children live with a life-limiting condition, and this number is expected to rise by 2030. These children and their families often have complex and changing needs. Specialist paediatric palliative care (SPPC) services can help to manage symptoms and provide emotional and practical support. Some children need long-term palliative care, but others may benefit from short-term support at key points in their illness, for example when their needs suddenly increase. At present, there is very little research about what short-term SPPC should look like. This study aims to fill that gap by developing, with parents and professionals, a short-term SPPC intervention that can be later tested.
The study will be carried out in three parts:
-Part A: Group discussions will be held with doctors, nurses, and other health and care professionals who work in SPPC, to explore what short-term SPPC should include, when it should be offered, and how it might work in practice.
-Part B: We will speak to parents and guardians of children with life-limiting conditions to understand their views, experiences, and priorities for short-term SPPC.
-Part C(a): Consensus workshops bringing together both parents and professionals will be held to discuss and agree the key features of the short-term SPPC intervention.
-Part C(b): An additional workshop will follow, giving parents and professionals the opportunity to review and confirm the draft plan of the short-term SPPC intervention.The study will work with parents and professionals to create a shared plan for what a short-term SPPC intervention should look like, including when it should be offered, who should be involved, and how it could work in everyday care. This plan will be the first step towards testing whether this intervention works in practice, and whether it helps children and families in the way we expect.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
26/EE/0033
Date of REC Opinion
26 Feb 2026
REC opinion
Further Information Favourable Opinion