The Journey through Care: palliative care for children & young people.
Research type
Research Study
Full title
The Journey through Care: What is "Palliative Care" for Children and Young People, when is it needed and how should it be delivered?
IRAS ID
196816
Contact name
Jeremy Dale
Contact email
Sponsor organisation
University of Warwick
Duration of Study in the UK
3 years, 1 months, 2 days
Research summary
BACKGROUND
"Palliative care" is an approach to care which focuses on improving the quality of life of people living with life-limiting (LLCs) or life-threatening conditions (LTCs). The number of children and young people (CYP) with these conditions in the UK is rising. Although progress has been made over recent years in the provision of palliative care services, they still differ significantly between regions.The future development of high quality, standardised palliative care services which are available to CYP with LLCs and LTCs, and their families, regardless of where they live, presents a significant challenge for the NHS.
OBJECTIVES
The overall aim of the study is to develop recommendations for a new model of palliative care for CYP with LLCs and LTCs and their families.The objectives are to explore the perceptions, experiences and preferences of CYP living with LLCs and LTCs and their families regarding the delivery of healthcare services. This will provide an in-depth understanding of CYP and family perspectives which, alongside literature reviews, patient and public involvement and focus groups with palliative care networks will inform the development of a new model of care.
DESIGN
Literature reviews have been carried out as preliminary research.The proposed research is an in-depth qualitative interview study with CYP aged 5-18 years (school age) living with LLCs and LTCs and their families. A series of interviews will be carried out with each participant over time where possible.
The study proposal has been carefully designed with a patient and public involvement group of CYP and families, and healthcare professionals who work in local children’s and palliative care services. The new model of care will be developed through ongoing consultation with those groups.
OUTCOMES
1. Recommendations for a new model of care which will be immediately relevant to policy makers and commissioners of services.
2.Academic publications and conference presentations.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
16/WM/0272
Date of REC Opinion
30 Jun 2016
REC opinion
Favourable Opinion