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Parent and professional experiences of 24/7 paediatric end-of-life care: a mixed methods study

In order to support the decision making and provision of 24/7 paediatric palliative care in the North East and Yorkshire region, this study will develop a new evidence-based service intervention.   The service will be designed to meet the needs of both families receiving 24/7 end of life care and of professionals and services delivering this care.

Background

Children and young people (CYP) with life-limiting conditions are living longer with increasingly complex symptoms.  It is difficult for families to know what to do if something goes wrong out-of-hours when their usual health care services are not available. Providing good quality care and support, round the clock, across a range of services, is key to supporting CYP and families’ choice over place of care and symptom control.  There is currently inequitable access and delivery to 24/7 support.

A member of the study’s parent advisory panel made the following video:-

https://www.youtube.com/shorts/swqvVF1pYdg

Research Aim and Overview

Aim: 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, 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 is a thirty-month study, funded by Marie Curie, and is focused on the North East and Yorkshire region.  It has three workstreams:

• Workstream one will involve conducting 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 two will involve speaking to families to find out about their experiences of out of hours care. We will interview parents whose child has a life-limiting diagnosis and is receiving palliative care and parents whose child has died.
• Workstream three will look at data that is 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 in where children die, and in order to identify possible examples of good practice we will also compare the region to other areas where 24/7 care services have been implemented.

Finally, the findings from the three workstreams will be integrated and used to develop an intervention and recommendations/ guidance for best practice.  We will also engage with key stakeholders through two workshops, which will provide a forum for getting feedback to identify problems, implementing possible solutions, and assessing intervention acceptability, feasibility, and engagement with the overall objective of refining it.  Outputs will be disseminated via key stakeholders, managed clinical networks, and parent facing organisations.

PPI Involvement

We have worked closely with the Martin House Research Centre (MHRC) Family Advisory Board (FAB), which is an advisory board of parents and other adult family members of children with a life-limiting condition including parents of a child who has died (n~20) on the development of this application.

A parent advisory panel will be established at the start of the project and include 4-5 parents as members, recruited to achieve some diversity in experiences.  The group will meet ~4 times each year via video-call.  They will be provide guidance at all research stages including helping to develop the recruitment approach and topics to be covered in interviews; helping to refine and test the interview topic guide; developing and sense-checking analytical themes during the analysis; developing recommendations for policy and practice and helping to co-produce the study outputs, particularly the family facing outputs including a plain English summary.