Experiences of end of life care: a qualitative study
Research type
Research Study
Full title
Experiences of end of life care: a qualitative study (Workstream 2 of "End of Life Care for Infants, Children and Young People (ENHANCE): a mixed methods evaluation of current practice in the UK")
IRAS ID
300913
Contact name
Lorna Fraser
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
0 years, 11 months, 21 days
Research summary
Research Summary
This application relates only to the second workstream (WS2) of the ENHANCE study.
Around 4,500 infants and children (age 0-19 years) die in England and Wales every year, and many of these children will receive end of life care, which is defined as support for people who are in the last years or months of their life.
Although there are increasing numbers of paediatric palliative care and hospice services, these services vary in their professional configuration, services provided, funding sources and population served. There is little evidence on the models of care, quality of care, resourcing and outcomes of children and their families who use these services. Most of the recommendations in the NICE guidance for end of life care for children are based on low quality evidence.
The overall, mixed methods study will address this evidence gap by identifying and investigating different models of providing EoL care for infants, children and young people by focusing on outcomes and experiences for children and parents, resource use and costs to families and the NHS. It will have three linked workstreams and a cross-cutting health economics theme. It will examine three exemplar clinical settings: cancer services, paediatric intensive care units (PICU) and neonatal units (NNU).
As mentioned above, this application relates to the second workstream (WS2), which has the following aims:
1. To explore experiences of providing and receiving end of life care and examine whether the experiences for child, parent/guardians, family members and health professionals vary dependent on the model of end of life care received;
2. To identify barriers and facilitators to implementation of end of life care and how these may differ across the models identified in the study;
3. To explore perceived inequalities in access or availability of these models of care.Summary of Results
This is the largest UK based study on parents’ and professionals' experiences of end-of-life care for children. It reveals professional, personal, and organisational barriers to delivering optimal care. Many issues could be resolved by investment in funding, time, education, and support to enable delivery of increasingly complex care. Shared decision-making between parents and professionals was limited. Offering choice and control is central to delivery. Parents need professionals to engage and understand their unique reality.
REC name
West of Scotland REC 3
REC reference
21/WS/0170
Date of REC Opinion
17 Jan 2022
REC opinion
Further Information Favourable Opinion