Learnings from the establishment and delivery of the UK Collaborative Paediatric Palliative Care Research Network.

Abstract

Background: There are increasing numbers of children living with conditions that may threaten or shorten their lives. While child mortality has decreased in recent decades, it is estimated 4500 infants, children and young people (0-19 years) die in the United Kingdom every year. Despite a growing increase in clinical provision, there is a clear paucity in research evidence underpinning paediatric palliative care. To support research delivery, a United Kingdom-wide network composed of paediatric palliative care-sector organisations and academics with expertise in the area was developed. The network had a clear vision of establishing partnerships between academia and services delivering paediatric palliative care that would support increased research capacity and delivery in the sector.

Objective(s): The overarching aim of the network was to deliver national high-quality research studies, education and materials, and build research capacity. Specific objectives included working closely with seven paediatric palliative care sites to develop guidance on the appropriate methods for undertaking research, the delivery of information and educational resources including a webinar series, offering of mentor opportunities, and the development of a minimum of two bids to National Institute for Health and Care Research related funding pathways.

Design: A collaborative design underpinned the network. Network activity included continued partner engagement through online meetings and newsletters, scoping activity to identify research priorities, establishment of research themes, and active engagement and support from national organisations. Patient and public involvement was core to all network activity.

Setting: Network engagement largely took place online. The network has a web page hosted on the website of the organisation Together for Short Lives.

Partners: Seven paediatric palliative care sites in England and Scotland (six hospices and one National Health Service hospital site) formed the network with input from several academic partners.

Results: The network achieved several outputs related to objectives including the submission of two National Institute for Health and Care Research applications for funding, the delivery of five educational webinars, the establishment of an online research toolkit and the development of a research nurse group.

Conclusions: Prior to the establishment of the network, there was no national mechanism for co-ordination for research in paediatric palliative care. In bringing together seven partner organisations and clinical and research expertise, the network has supported the foundations upon which to deliver high-quality research in the sector.

Future work: Future work is required to support the sustainability of the network including obtaining necessary funding. Key learning from the network can be transferred and replicated across other contexts, including internationally. Grant applications and research themes developed as a result of the network will continue to develop and mature.

Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number NIHR135304.