Parent and Professional Experiences of 24/7 Paediatric End Of Life V1
Research type
Research Study
Full title
Parent and professional experiences of 24/7 paediatric end-of-life care: a mixed methods process evaluation
IRAS ID
317352
Contact name
Julia Hackett
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
2 years, 6 months, days
Research summary
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 (OOH) 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. All CYP and families should be able to access specialist advice and support 24/7 at end-of-life.
Currently, 24/7 children’s palliative care is not provided in the same way across the UK. We do not have a good understanding of how this is provided, what professionals think of current provision, what would help them deliver better care; or of CYP and families’ experiences of accessing care OOH, and what they need.
The Yorkshire and Humber Children’s Palliative Care Network has developed a new way of providing 24/7 paediatric end-of-life care to ensure that CYP and families have access to specialist medical advice and skilled nursing support where, when and how they need it. This thirty month project will evaluate this new service to see what works, for whom, in what circumstances, and why?
We will use data already collected within the NHS to find out about A&E and emergency hospital admissions, and where children die, before and after the introduction of the new service. We will speak to families to find out about their experiences of palliative care, before and after its introduction. We will speak to professionals to find out what they think about current provision, expectations and needs of the proposed service; and experiences of delivering care after its introduction. Finally, we will develop recommendations/guidance for best practice so that the service can be replicated across the UK.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
22/WM/0211
Date of REC Opinion
21 Oct 2022
REC opinion
Further Information Favourable Opinion