Research project - Parent and Professional Experiences of 24/7 Paediatric End Of Life
Supporting the decision-making and provision of 24/7 paediatric palliative care in the North East and Yorkshire region.
Children and young people (CYP) with life-limiting conditions are living longer with increasingly complex symptoms.
Providing good quality care and support, round the clock, across a range of services, is key to symptom control and determines CYP and families’ choice of place-of-care.
In order to support the decision-making and provision of 24/7 paediatric palliative care in the North East and Yorkshire region, this study aimed to develop recommendations and guidance for best practice to help the delivery of, and access to, 24/7 paediatric end-of-life care.
The service will be designed to meet the needs of both families receiving 24/7 end-of-life care and professionals and services delivering this care.
Project lead: Dr Julia Hacket, Research Fellow and Associate Professor in the Martin House Research Centre (MHRC), within the Department of Health Sciences at the University of York.
Local lead: Dr Joanna Elverson, Specialist Palliative Medicine Consultant at St Oswald’s Hospice.
Marie Curie
September 2022 – February 2025
The aim of the 36-month study was to develop a complex intervention to help the delivery of, and access to 24/7 paediatric end-of-life care in the North East and Yorkshire region. This was achieved by assessing parent and professional experiences and needs, and patterns of care at end-of-life and outcomes in other regions where interventions have been developed.
This study had 3 workstreams:
Workstream 1 involved focus groups with health professionals to find out what they think about the current provision of 24/7 paediatric end-of-life care, and their expectations and needs of a new service.
Workstream 2 involved speaking to families to find out about their experiences of out-of-hours care. Interviews were conducted with parents whose child had a life-limiting diagnosis and was receiving palliative care and parents whose child had died.
Workstream 3 looked at data that was already collected by the NHS to find out about differences across the region in A&E and emergency hospital admissions in the last 12 months of life and where children die, in order to identify possible examples of good practice. A comparison of the region to other areas where 24/7 care services have been implemented was also made.
The findings from the 3 workstreams were integrated and used to develop an intervention and recommendations and guidance for best practice.
Researchers engaged with key stakeholders through two workshops, which provided a forum for getting feedback to identify problems, implement possible solutions, and assess intervention acceptability, feasibility, and engagement with the overall objective of refining it.
Outputs were shared with via key stakeholders, managed clinical networks, and parent-facing organisations.
Publication coming soon.