PRESS RELEASE
The Research Priorities for Palliative and End-of-Life Care for the island of Ireland were launched at the 14th Annual Palliative Care Research Network Symposium, taking place in Dublin today.
The All Ireland Institute of Hospice and Palliative Care (AIIHPC) has led the development of the All Ireland Palliative Care Research Priorities for 2025-2030, an update of the priorities developed in 2015, in collaboration with the James Lind Alliance Priority Setting Partnership and Marie Curie UK. The priorities were identified by people with palliative care needs, carers, and health and social care professionals from across the island of Ireland.
A recent workshop in Dublin hosted by AIIHPC and facilitated by the James Lind Alliance brought together people with lived and professional experience in palliative care to discuss 24 research questions. These pre-determined questions had been identified from two surveys of people with lived and professional experience of palliative care across the island of Ireland. From these, a ranked list of priorities was developed.
Defining these priorities is vital as the need for palliative care on the island of Ireland is estimated to grow to 75% in the Republic of Ireland by 2046 and 31% in Northern Ireland by 2040. Despite this, research in palliative care remains an underfunded area though supported by the World Health Organisation.
Dr Mary Rabbitte, Research Programme Manager, AIIHPC said,
“This is a significant milestone in terms of working with people receiving palliative care and their families and those involved in delivering care across the island of Ireland to identify together what is important in order to improve and deliver care for all people who need it. We are very grateful to those who have personal experience of palliative and end-of-life care who have used their voices in guiding these priorities that we have announced today.
“Improvements in palliative care services, North and South and moving towards integrated and accessible care for all, requires evidence-based approaches for service delivery and design and guidance for professionals,” Dr Rabbitte said.
The top 10 All-island Research Priorities are:
- What are the best ways to provide personalised palliative and end-of life care that meets all the physical, mental, practical, social and spiritual needs of a person with a serious life-limiting illness?
- How can communication and care co-ordination be improved across the teams of health and social care professionals caring for people with any serious life-limiting illness?
- What are the best ways to provide emotional and psychological support to people with a serious life-limiting illness, from diagnosis through to end-of-life?
- What kinds of palliative and end-of-life care and support need to be in place to enable people to die well at home? What skills do staff need? What helps or hinders the delivery of care at home?
- How can it be ensured that everyone has access to the palliative and end-of-life care they want or need?
- What are the best ways to provide support to children (e.g. psychological and social support) when someone important to them is dying, or has died?
- What are the best ways to train and support staff who provide care at the end-of-life – either at home, in care homes or nursing homes?
- How can palliative and end-of-life care better meet the needs of people with illnesses other than cancerg. chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, organ failure, motor neuron disease (MND)?
- How can the quality of palliative and end-of-life care in hospital be improved? What helps or hinders improvement?
- What skills, training and information do carers, friends and family members need to be able to care for someone who is dying at home (e.g. giving medicines safely by injection, managing incontinence, moving people)? What is the impact (pros and cons) of upskilling the people giving care?
Austin McCracken, member of AIIHPC Voices4Care who contributed from his lived experience of palliative care and involvement in Voices4Care said,
“I really enjoyed the process, especially having sufficient time to think through and consider the top research priorities, and then deciding what I considered to be the most important top three priorities based on my own lived experience of palliative and end-of-life care.
“I loved the fact that consensus reigned at the end of the day and it was a pleasure not only meeting people for the first time but also listening to everyone else’s opinions. Overall, I was delighted with the choice of research project that was given top priority as it could apply to all areas of medical care and more importantly covered the physical, mental and spiritual areas of pallitative and end-of-life care.”
Dr Regina McQuillan, Consultant in Palliative Medicine at St. Francis Hospice and Beaumont Hospital welcomed the Research Priorities,
“The consultation process generated a list of important potential areas of research. The workshop allowed more in-depth discussion of the different areas, better understanding of why research in the different areas may be required and what type of research could or should be done. The research priorities arrived at are priorities, rather than the only areas that should be included, but by having the priorities, individuals and organizations can consider best where to direct their efforts. I am grateful to AIIHPC and the James Lind Alliance for supporting this.” she said.
Today’s Palliative Care Research Symposium also included the announcement by Karen Charnley, CEO of AIIHPC, of a number of AIIHPC Bursaries and Fellowships to support early and mid-career researchers who will be working to address these priorities.
“Today, we are also announcing details of AIIHPC Bursaries and Fellowships to support early and mid-career researchers who will be working to address deliver much needed palliative care research. The investment in palliative care researchers, with the support of the Health Research Board and Health and Social Care R&D Division, Public Health Agency is vital if we are to work together to meet the rising need for palliative care across the island of Ireland. We are committed to supporting researchers and our member organisations across the island of Ireland as they work to provide excellent palliative care.”
“It is a pivotal moment in palliative care across the island of Ireland as the implementation of the National Adult Palliative Care Policy is underway in the Republic of Ireland and we look forward to the imminent publication of the NI Health Committee Inquiry into Access to Palliative Care Services.. We have an opportunity to work together to create better outcomes for people with palliative care needs,” Ms Charnley said.
Read the full report:
All Ireland Palliative Care Research Priorities for 2025-2030
ENDS
For more information, contact Yvonne McCahill, Communications Manager, AIIHPC- ymccahill@aiihpc.org, 087-0947148.
All Ireland Institute of Hospice and Palliative Care
All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a leading organisation with national and international influence promoting excellence in palliative care. AIIHPC is a collaborative of hospices, health and social care organisations, charities and universities on the island of Ireland. AIIHPC’s aim, with our twenty-seven member organisations, is to ensure excellent palliative care is available for everyone at the right time and place across the island of Ireland.
- involving service users, carers and communities in palliative care delivery and development
- working to integrate palliative care across the health system so people are supported as early as possible
- supporting the development of specialist palliative care services for everyone who needs them.
AIIHPC Palliative Care Research Network
AIIHPC Palliative Care Research Network, was established in 2012 as an island of Ireland Network to improve the quality of life and death of people with life-limiting conditions through research. AIIHPC PCRN aims to engage with all relevant stakeholders, across the island of Ireland and internationally, to promote and advance relevant and innovative research in palliative care, maximise research impact on practice and policy and ensures integrated knowledge translation in line with AIIHPC’s work programmes. The Network includes 67 senior academic and clinical researchers from Queen’s University Belfast, Ulster University, Trinity College Dublin, University College Dublin, Dublin City University, Royal College of Surgeons in Ireland, University College Cork, University of Galway, and hospice and palliative care providers. They work together with people with palliative care needs and their family/carers (through AIIHPC Voices4Care), hospices and palliative care providers, health agencies and funding organisations. AIIHPC also supports an Early Career Researcher Forum (ECRF) with over 300 members to support the next generation of researchers and leaders in palliative and health care.