Together for Short Lives is delighted to be working in partnership with the Martin House Research Centre and the Association of Paediatric Palliative Medicine to host a UK wide Collaborative Paediatric Palliative Care Network (CoPPAR). The CoPPAR network aims to foster research in the children’s palliative care sector, develop research partnerships and deliver national high quality research.
Addressing the current gap in quality research in paediatric palliative care requires a shared and collaborative response between the academic and paediatric palliative care sector. Our aim is to provide a UK wide Collaborative Paediatric Palliative Care network that will foster and assist the sectors to work alongside one another to deliver national high-quality research studies.
- To work with eight sites (including children’s hospices or NHS palliative care teams) to develop research readiness using methods that can be scaled up to other hospices and NHS paediatric palliative care sites.
- To deliver a series of educational webinars on key components of research activity.
- To establish a process whereby those developing and delivering research studies can access a network of PPI partners.
- To offer mentor opportunities to staff interested in a research career to apply for fellowships including NIHR predoctoral or doctoral awards.
- To develop guidance on appropriate research methods in palliative and end of life care in children.
- To develop a minimum of 2 bids for the stage 2 of the NIHR commissioned call on palliative and end of life care.
The vision of CoPPAR is that it will become the single point of information for all pediatric palliative care 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 this sector.
In March we held our first webinar to introduce CoPPAR and explore the idea of research and its importance in the children’s palliative care sector. You can watch the webinar below.
Introducing the CoPPAR research toolkit
8th June 2023
The final webinar in the series saw the the launch of the CoPPAR network research toolkit; designed to support anyone from parents to professionals interested in engaging in research in paediatric palliative care.
Research careers in paediatric palliative care
2nd March 2023
In this webinar, we will hear from a range of individuals who have embarked on varied research careers in paediatric palliative care, showcasing the varied and rewarding pathways to engaging in research in this field.
- Professor Lorna Fraser
- Dr Emily Harrop
- Lucy Coombes
- Dr Sophie Bertaud
Working with your local clinical research network
19th October 2022
The NIHR Clinical Research Network (CRN) supports patients, the public and health and care organisations across England to participate in research. In the latest of a series of educational webinars held by the Collaborative Paediatric Palliative Care Research (CoPPAR) Network, we will be discussing the role of the CRN in supporting the delivery of research in the paediatric palliative care sector
- Dr Emma Heckford and colleagues from the West of England CRN.
Patient Public Involvement
14th June 2022
In this webinar, we will provide an overview of patient, public involvement (PPI) in the context of paediatric palliative care. We will reflect on what it means to be involved in PPI, drawing on the perspectives of parents and young people who have direct experience of contributing to studies in this area.
There was also the opportunity to ask questions and openly discuss key topics associated with PPI in paediatric palliative care.
- Representatives of the Martin House Research Centre Family Advisory Board.
- Dr George Peat (Martin House Research Centre).
- Lucy Coombes and Hannah Scott (Florence Nightingale Faculty of Nursing Midwifery and Palliative Care. Cicely Saunders Institute, Kings College London).
22nd March 2022
In this webinar, we will unpick what constitutes ‘research’, drawing on case examples of studies and quality improvement projects undertaken in the field of paediatric palliative care.
We will also discuss the benefits of research, with plenty of opportunity to ask questions and receive advice on research engagement.
- Professor Lorna Fraser
- Dr Bethan Page
- Dr Julia Hackett