Title: Developing the UK Collaborative Paediatric Palliative cAre Research (CoPPAR) Network
Funder: Department of Health and Social Care

Abstract: Why is this study needed?_x000D_ There are growing number of children living with medical conditions that will threaten or shorten their lives and around 4500 babies, children and teenagers in the UK will require end of life care each year. There are increasing numbers of specialist palliative care services and children’s hospices in the UK, but there is little research evidence to tell us how care for these children and families should be delivered, for example how to manage distressing symptoms. Undertaking research in palliative care settings is challenging because the numbers of children and young people at any one site or with any one condition are relatively small, and many of the services are voluntary rather than NHS funded so do not have dedicated research departments._x000D_ What are we aiming to achieve?_x000D_ We are aiming to develop a network of academics, clinical teams (children’s hospices or NHS palliative care teams) that will work together to share experiences and expertise to improve their research readiness to undertake and participate in research studies – the CoPPAR network. This network will be a single point of information, held on the Together for Short Lives website (national charity for children’s palliative care), and accessible to parents, clinicians and academics to find out about current and new research studies and how to get involved. _x000D_ How will we achieve this?_x000D_ We will work with the seven partner organisations (six hospices, one NHS children’s pallliative care team) to understand their educational needs and will run a series of webinars to share experiences of undertaking research in voluntary sector and NHS settings e.g. how to involve children and parents in research studies, research management and governance. These webinars will be accessible for all 63 children’s palliative care services in the UK. The academics will also provide mentorship to any clinical staff who would like to apply for formal research training in the form of a fellowship._x000D_ We will also work with these partners to develop applications for future research studies that are driven by their experience and needs as front line staff and with input from our PPI partners. These grants are likely to be on topics such as collecting child centred outcome data and management of distressing symptom in palliative and end of life care in children. _x000D_ Patient and public involvement_x000D_ This application addresses a request from the Family Advisory Board of the Martin House Research Centre – this group has approx. 15 parents of children with life-limiting or life-threatening conditions or whose child has died. The parents were very keen to have a mechanism by which more parents can get involved in PPI but also that there was a mechanism by which they could easily find out about/get involved with studies going on in other research groups. We will build on the existing PPI groups (Family Advisory Board and Young Persons Group) and extend our membership to increase diversity and reach._x000D_ Dissemination_x000D_ We will work with parents, professional organisations and charities to inform them about the CoPPAR network and opportunities for them to get involved.

Lay abstract: Background_x000D_ There are growing numbers of children and young people living with conditions which may threaten or shorten their lives and 4500 children die every year in the UK. There are now 53 children’s hospices and ~ 10 NHS hospital based palliative care teams but the research evidence base underpinning this care is limited. _x000D_ There is an urgent need to increase the quality and quantity of research in paediatric palliative care and to do this we need to work in partnership with the paediatric palliative care (PPC) sector to increase the research capacity and delivery._x000D_ _x000D_ Aims and objectives_x000D_ Aim: to develop a collaborative UK wide paediatric palliative care research network (CoPPAR) that will deliver national high-quality research studies, education and build research capacity_x000D_ Objectives:_x000D_ 1. to work with seven paediatric palliative care sites (hospice and hospital based) to develop research readiness using methods that can be scaled up to the other hospices and NHS paediatric palliative care sites_x000D_ 2. to deliver a series of educational webinars on the key components of research activity_x000D_ 3. to set up process by which those developing and delivering research studies can access a network of PPI partners_x000D_ 4. to offer mentor opportunities for paediatric palliative care staff who are interested in developing a research career to apply for fellowships including the NIHR pre-doctoral or doctoral awards._x000D_ 5. to develop guidance on the appropriate methods to undertake research in palliative and end of life care in children._x000D_ 6. to develop a minimum of two bids for stage 2 of the NIHR Commissioned call on palliative and end of life care._x000D_ _x000D_ Methods_x000D_ The vision is that CoPPAR will become the single point of information for all PPC research across the UK that can be accessed by researchers, clinicians, parents and young people and policy makers to enable more effective and efficient delivery of research in the sector. We will work closely with seven PPC organisations to understand their needs, deliver a series of educational webinars that meet those needs (e.g. PPI, research governance) which will be open to all PPC organisations in the UK. We will work with academic colleagues to produce guidance on the methodological standards for PPC research and offer mentoring to any clinical staff who wish to pursue more formal research training,. A key component of the CoPPAR network will be working with our partner organisations, including our PPI partners, to develop a minimum of two grant applications for the next round of NIHR commissioned call. It is likely that the topic areas of these bids will be on collecting person centred outcomes data and pharmacological management of distressing symptoms but that there is flexibility for these topics to develop._x000D_ _x000D_ Timelines for delivery_x000D_ The development of the CoPPAR network will take 18 months._x000D_ _x000D_ Anticipated impact and dissemination_x000D_ We will work closely with our national partner organisations, Together for Short Lives and the Association for Paediatric Palliative Medicine to utilise existing communication networks, website blogs and social media to promote the CoPPAR network. This network has the potential to benefit children with life-limiting conditions and their parents , academics, clinicians, service providers, policy makers and research funders by having the infrastructure to offer access to and delivery of high quality research in PPC that will influence policy and practice.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE