Guidance for Conducting Research

  1. Palliative Care Research Network Strategic Plan (2017-2022)
  2. Top 10 Research Priorities for Palliative and End of Life Care for the island of Ireland

Palliative Care Research Network Strategic Plan (2017-2022)

In 2017 the Palliative Care Research Network (PCRN) launched a five year strategic plan. This strategic plan sets out a direction for the PCRN network, building and strengthening our research community and ensuring that research impacts at the local, national and international levels. The PCRN Strategic Plan (2017-2022) provides a framework for all those seeking to undertake palliative care research, from early career researchers to those leading and shaping international projects. Through this strategy the PCRN demonstrates its commitment to work collaboratively to strengthen palliative research, education, policy and practice on the island of Ireland and further afield. The plan has identified five strategic activity areas and actions that will be implemented over the 5 years to improve Quality of Life (QoL) for people with life limiting conditions through research that changes practice and informs policy. The five strategic activity areas are:

To learn more about the Palliative Care Research Network Strategic Plan (2017-2022) download the full document or to learn how the Strategic Plan was developed click on the Poster available at the following link: Developing the All-Ireland Institute of Hospice and Palliative Care (AIIHPC) Palliative Care Research Network Strategic Plan 2017 – 2022.

To view the implementation plan for 2018 download Palliative Care Research Network Strategic Plan (2017-2022): 2018 Implementation Plan

Top 10 Research Priorities for Palliative and End of Life Care for the island of Ireland

In order to guide research to address key research priorities for people with life limiting conditions, carers, volunteers and health and social care professionals, on the island of Ireland, AIIHPC participated in a UK and Ireland project (developed by the Palliative and end of life care Priority Setting Partnership and initiated by Marie Curie). The aim was to bring all the stakeholders with an interest in palliative care research together to identify and prioritise key research questions for palliative and end of life care. AIIHPC extracted the data for Ireland from the overall project and held a consensus workshop, independently facilitated by the James Lind Alliance, to identify the Top 10 Research Priorities as listed below:

1 What are the best ways of providing palliative care outside of ‘working hours’ to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families?
2 What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good co-ordination of services affect this?
3 What are the best ways to make sure that palliative care patients receive adequate pain and symptom relief and which drugs for pain management are best in terms of side-effects, such as drowsiness?
4 What are the best ways for healthcare professionals to tell patients, carers and families that a patient’s illness is terminal and also explain the dying process compassionately and honestly? Can literature, including leaflets, be helpful? Who is the best person to provide this information and communication?
5 What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when?
6 What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case-coordinator improve this process?
7 What are the best ways to support children and young people when someone close to them is dying or has died? This includes communicating with them about the diagnosis and dying process, enabling them to talk about their experience and providing bereavement support.
8 What information and training do carers and families need to provide the best care for their loved one who is dying?
9 What are the best ways to begin and deliver palliative care for patients with non-cancer diseases (such as COPD, heart failure, MND, AIDS, multiple sclerosis, Crohn’s disease and stroke)?
10 Are hospices, hospitals and care homes providing adequate staff training to deliver specialist palliative care, and to what extent does funding affect this? How can high quality trained staff be ensured no matter where the care is being delivered?

The AIIHPC PCRN strategic plan 2017 -2022 outlines key activities aligned to the Top 10 research priorities. This includes supporting PCRN members to ensure their research responds to the identified research priorities; as well as identifying focussed research programmes that are informed by the research priorities. To find out more about the project download the full report: Palliative and End of Life Research Priority Setting Project for Northern Ireland and Republic of Ireland

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