Palliative Care Research on the Island of Ireland

This page provides information on current and past research studies undertaken by our Palliative Care Research Network (PCRN) and Early Career Researcher Forum (ECRF) members. If you are a member of our research network or forum and want to share information about your research study, please contact Dr Emer Brangan, Research Impact Project Manager, ebrangan@aiihpc.org


Community Healthcare Assistants  | Examining what impacts on Healthcare Assistants’ wellbeing and their retention

Health Care Assistants (HCAs) have an important role caring for patients dying at home and supporting their family caregivers. HCAs often visit patients’ homes on their own, most frequently during the out of hours period..….

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Kasia Patynowska, Marie Curie, Northern Ireland • January 2023 – December 2023


Generalist Palliative Care in Oncology | Exploring how generalist palliative care is currently integrated within specialist oncology practice

For over twenty years, Irish policy has stated that providing palliative care is the responsibility of all healthcare professionals (called generalist palliative care)..….

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Dr Mary Nevin, School of Nursing, Psychotherapy and Community Health Dublin City University • January 2023 – December 2024


Death literacy | The appropriateness of the Death Literacy Index to the population of Ireland

In the context of an aging population globally, demand for end-of-life care services is rising. Many public health approaches have tried to increase people’s knowledge about end-of-life care..….

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Stephanie Crawford, Queen’s University Belfast • January – November 2023

Mutual Support in Palliative Care | Support exchange between patients and family caregivers in palliative care

Family caregivers have been traditionally considered as providers of support within the patient-family caregiver dynamic. Recent research suggests, however, that support between patients and family caregivers can be exchanged…….

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Rachel McCauley MSc BSc
Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin • Sept 2019 – Feb 2024

Community Healthcare Assistants  | Examining what impacts on Healthcare Assistants’ wellbeing and their retention

Health Care Assistants (HCAs) have an important role caring for patients dying at home and supporting their family caregivers. HCAs often visit patients’ homes on their own, most frequently during the out of hours period..….

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Kasia Patynowska, Marie Curie, Northern Ireland • January 2023 – December 2023

Advance Care Planning | Supporting decision making for people with a life-limiting illness receiving community and district nursing care

There are an increasing number of people living in the community with life-limiting illnesses however there is a lack of advance care planning for patients living in the community..….

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Professor Kevin Brazil, School of Nursing & Midwifery, Queen’s University Belfast • January 2023 – February 2024


Death literacy | The appropriateness of the Death Literacy Index to the population of Ireland

In the context of an aging population globally, demand for end-of-life care services is rising. Many public health approaches have tried to increase people’s knowledge about end-of-life care..….

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Stephanie Crawford, Queen’s University Belfast • January – November 2023


Generalist Palliative Care in Oncology | Exploring how generalist palliative care is currently integrated within specialist oncology practice

For over twenty years, Irish policy has stated that providing palliative care is the responsibility of all healthcare professionals (called generalist palliative care)..….

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Dr Mary Nevin, School of Nursing, Psychotherapy and Community Health Dublin City University • January 2023 – December 2024


Memory-making through therapeutic recreation | Adapting a digital storytelling intervention for families receiving palliative care at home

Currently in Ireland there is limited early bereavement support for families and specifically a lack of support for children with palliative care needs to record memories with their families..….

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Professor Veronica Lambert (PI), Professor of Children and Family Nursing, Dublin City University • May 2023 – April 2025


Children’s Palliative Care  | Gathering and examining information for improving how children’s palliative care is planned and delivered in Ireland

In Ireland we don’t know how many children have life-limiting conditions and need palliative care. We have UK-based estimates which are out-of-date and not detailed enough to help plan palliative services..….

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Dr Samantha Smith (Trinity College Dublin) & Dr Joanne Balfe (CHI Tallaght & LauraLynn Ireland’s Children’s Hospice) • March 2023 – March 2025


End-of-Life Decision Making | Exploring how patients, caregivers, and professionals make treatment decisions in brain cancer

The ability to make decisions for oneself is called decision-making capacity. We consider it a right to make decisions about our own lives.….

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Lorna Gurren, School of Psychology, Dublin City University • Sep 2022 – Sep 2026


Energy hardship | Understanding issues for people with palliative care needs at home and promoting actions

People with palliative care needs and their carers may be more likely to be unable to afford to heat their homes adequately, for example if their income from work is reduced following a diagnosis.….

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Dr Suzanne Denieffe, Head of School of Humanities, School of Humanities, South East Technological University • January – December 2023


Pet robots and dementia care | Achieving implementation within long-term care facilities

Pet robots are a technology-based substitute for pet therapy. Research shows that pet robots demonstrate promise in improving the psychosocial health of older adults, including people living with dementia….

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Ms Wei Qi Koh, University College Galway • October 2019 – October 2022


CO-DECIDE study | Developing a shared decision-making framework to assist parents and health and social care professionals

Medical advancements have resulted in increasing survival of children with life-limiting and life-threatening conditions..….

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Prof Veronica Lambert, School of Nursing, Psychotherapy and Community Health, Dublin City University.
Dr Patricia McNeilly, School of Nursing and Midwifery, Queen’s University Belfast.
• November 2022 – December 2024


Medicines optimisation | Improving the prescribing of medicines for people living with cancer and receiving palliative care

An important challenge in palliative care for older adults (≥65 years) with cancer is making sure that they are prescribed the most suitable medicines. Often older adults with cancer have existing comorbidities….

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Dr Cathal Cadogan, Trinity College Dublin • September 2018 – June 2021


Palliative care and inequality  | Understanding Inequalities in Palliative Care for Older People and Providing for Future Need [The UP Study]

Older people with life-limiting conditions account for large proportions of healthcare spending in the Republic of Ireland, yet experience unmanaged symptoms, poor quality of life, and fragmented and low-quality care that does not meet their preferences and needs….

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Prof Karen Ryan, University College Dublin, St Francis Hospice, Mater Hospital • Mar 2018 – Nov 2021


Recognising a dying person | Death as a social Process

Death is not just a physiological phenomenon diagnosed by clinicians. It is also a social process, the ways in which individuals and groups interact and establish social relationships interactions, especially when someone slowly approaches death in long-term care….

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Adjunct Professor Jari Pirhonen, University of Finland · September 2021 – August 2024


Out of hours palliative care | Examining the role, contribution, and impact of the Healthcare Assistant

Most of the last year of a person’s life is spent at home with some care being delivered during out of normal working hour’s periods such as, evenings, night time and weekends. Out of hours palliative care in the home can be delivered by health care professionals including doctors, nurses and healthcare assistants….

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Dr Felicity Hasson, Ulster University · March 2020 – July 2022


Nursing homes and COVID-19 | Examining the experiences of people living in nursing homes, their families, and staff during the COVID-19 pandemic

In Ireland, the first wave of the COVID-19 pandemic came in March 2020. At this time nursing homes were forced to rapidly implement new protocols set out by the National Public Health Emergency Team (NPHET) to prevent the potential spread of infection and safeguard nursing home residents, their families, and staff. Such protocols included restricted family visiting….

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AIIHPC and Dr John Lombard and Dr Owen Doody, University of Limerick · October 2020 – January 2022


Advance Care Planning | Public knowledge, attitudes, and perceptions of palliative care and advance care planning

Advance care planning helps to ensure the medical care delivered is consistent to the person’s wishes/values and preferences, reduces decision-making burden, and helps families prepare for and cope with bereavement. However, advance care planning research has continually….

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Prof Sonja McIlfatrick, Ulster University · June 2018 – March 2021


Sláintecare | Implementing Universal Palliative Care in Ireland

Sláintecare, is the Republic of Ireland’s national ten-year programme to transform existing health and social care services to a universal single-tier health and social care system where everyone has equitable access to services based on need and not ability to pay. A key recommendation is universal entitlement to a health benefits package, including palliative care….

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Dr Bridget Johnston, Trinity College Dublin · January 2021 – January 2024


Deprescribing medications | Attitudes towards deprescribing in older people receiving palliative care

Improving the use of medicines is an important element of providing high-quality care for older people and improving their quality of life, especially at the end of life, when older people are often prescribed increasing numbers of medicines. These may include medicines that are unnecessary….

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Dr Carole Parsons, Queen’s University Belfast · March 2021 – June 2021


Constipation management | Educational intervention for constipation assessment and management (DEMCom project)

Constipation is a widespread symptom, and significant concern, for people receiving palliative care. It contributes to considerable physical and psychological suffering for both people with a life-limiting condition and their families. Constipation can be difficult to define….

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Prof Sonja McIlfatrick, Ulster University · September 2016 – September 2019


Human Rights | Developing an understanding of human rights challenges in palliative care

Understanding the human rights challenges associated with palliative care is important for healthcare professionals so that a person’s rights to health and autonomy are realised in practice. Care at end-of-life is a personal experience and autonomy is essential in delivering care….

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AIIHPC, Sue Ryder UK, Irish Hospice Foundation, University of Limerick · September 2019 – December 2020


Rehabilitation | Developing a model for rehabilitative palliative care

Rehabilitative Palliative Care optimises wellbeing and enables people to live as independently as possible despite advancing illness. It empowers people to adapt with dignity by providing a support system to help patients cope with changes associated with deteriorating health….

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Prof Karen Ryan, University College Dublin, St Francis Hospice, Mater Hospital · March 2020 – April 2021


Palliative care data | Establishing the state of palliative and end-of-life care data in Ireland (PELCI project)

We currently know little about the end-of-life phase in Ireland: where people die, what health care they use, how family and friends provide unpaid care, and how palliative care shapes these experiences. This project aims to improve knowledge and understanding of these questions….

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Dr Peter May, Trinity College Dublin · March 2020 – February 2022


Undergraduate palliative care | Developing a standardised undergraduate palliative care curriculum (EDUPALL project)

Funded through the Erasmus+ “Cooperation for innovation and the exchange of good practices” action, the EDUPALL project aims to produce a complete programme for undergraduate medical student education in Palliative Care….

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Assoc. Prof Dr. Daniela Mosoiu, University of Brasov · Sep 2017 – Aug 2020


Decision-making and advanced dementia | Supporting care home health staff to engage in decision-making with family carers by scaling up an educational intervention (MySupport study)

When a person with dementia that is living in a nursing home loses the capacity to make a decision for him/ herself, nursing home staff must deliver care that is in the person’s best interest….

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Prof Kevin Brazil, Queen’s University Belfast · April 2019 – April 2023


Physical activity and bone metastases | Understanding the relationship between physical activity and bone health in people with bone metastases

Cancer which has spread to the bone, causing bone metastases (bone tumours) can weaken bone health and increase risk of fractures (breaks). Consequently, people with bone metastases can be unsure whether to exercise and health professionals can be unsure what exercise advice….

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Dr Emer Guinan, Trinity College Dublin · February 2019 – July 2022


Palliative care and inequality | People with serious mental illness and access to palliative care in Ireland

It is estimated that over one quarter of the population in Ireland will experience mental health problems in their life time. While the general populations’ life expectancy is increasing, for people who have experienced serious mental illness life expectancy is decreasing by up to 30 years….

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Prof Ann Sheridan, University College Dublin · Oct 2013 – Oct 2017


Palliative care and inequality | People with serious mental illness and access to palliative care in Ireland

It is estimated that over one quarter of the population in Ireland will experience mental health problems in their life time. While the general populations’ life expectancy is increasing, for people who have experienced serious mental illness life expectancy is decreasing by up to 30 years….

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Prof Ann Sheridan, University College Dublin · Oct 2013 – Oct 2017


Palliative care and inequality | People with intellectual disability and access to palliative care

Advances in public health and social care have enabled people with an intellectual disability to live longer than ever before providing new challenges in understanding not only how people are living with illness but also how they are dying….

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Prof Mary McCarron, Trinity College Dublin · Oct 2013 – Oct 2017


Palliative care and inequality | People with intellectual disability and access to palliative care

Advances in public health and social care have enabled people with an intellectual disability to live longer than ever before providing new challenges in understanding not only how people are living with illness but also how they are dying….

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Prof Mary McCarron, Trinity College Dublin · Oct 2013 – Oct 2017

Palliative care and dementia | The Model for Dementia Palliative Care Project (PallCare4Dementia)

People are living longer, which means that more of us will get age-related illnesses such as dementia. Dementia is caused by different diseases of the brain. Although Dementia usually affects people as they get older, it’s not a normal part of ageing. Many people don’t realise that Dementia is a terminal illness….

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Prof Suzanne Timmons and Dr Siobhán Fox, University College Cork · 2017 – Oct 2022


Advanced heart failure | People with advanced heart failure, their carers and access to palliative care in Ireland

Heart failure is reaching epidemic proportions in Ireland and throughout the developed world. HF is the inability of the heart to eject blood around the body sufficiently and is considered as having the greatest negative impact on quality of life….

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Prof Sonja McIlfatrick, Ulster University · Oct 2013 – Oct 2017


Weight loss | Evaluation of a psycho-educational intervention for people with advanced cancer and unintentional weight loss (cachexia)

Up to 80% of people with a diagnosis of advanced cancer suffer from a dramatic loss of fat and muscle tissue. This devastating wasting syndrome or cachexia affects people biologically, psychologically and socially and has a profound impact on their family carers….

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Prof Joanne Reid, Queen’s University Belfast · Oct 2013 – Oct 2016


Knowledge Transfer and Exchange | An evidence-based model for the transfer and exchange of research knowledge (EMTReK) for palliative care

Policy requires practice to be based upon evidence. Despite increasing levels of research being gathered in health settings there are several challenges to the implementation of evidence into practice which is required to influence change ….

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Prof Suzanne Guerin, University College Dublin, Prof George Kernohan, Ulster University · Nov 2013 – Jul 2017


Depression and palliative care | Improved diagnosis and symptom management in palliative care

Depression is very common among people in advanced stages of a life-limiting condition. Approximately one in six of those receiving palliative care have major depression. Unfortunately, depression often goes undiagnosed or untreated. Many life-limiting diseases share symptoms….

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Prof David Meagher, University of Limerick ·Oct 2013 – Oct 2017


Patients and caregivers’ preferences | What do patients and caregivers want near end of life?

The aim of palliative care is to enable every person with an illness from which he/she will not be cured, to live as well as possible right up until he/she dies. If it is generally accepted that all people should have access to high quality end-of-life care, then it is important to ensure that resources are focussed towards those elements….

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Dr Bridget Johnston, Trinity College Dublin · Mar 2014 – Mar 2017


Research messages | Knowledge and innovation in palliative care research in Ireland (KINDLE project)

In 2012 AIIHPC established the Palliative Care Research Network (PCRN) to address need for more collaborative multidisciplinary research in palliative care on the island of Ireland. The purpose of the KINDLE project was to identify cross-cutting messages for palliative care and research within PCRN research outputs….

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Prof Suzanne Guerin, University College Dublin, and Dr Tara Murphy, AIIHPC ·Dec 2015 – May 2017


Knowledge Transfer and Exchange | An evidence-based model for the transfer and exchange of research knowledge (EMTReK) for palliative care

Policy requires practice to be based upon evidence. Despite increasing levels of research being gathered in health settings there are several challenges to the implementation of evidence into practice which is required to influence change ….

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Prof Suzanne Guerin, University College Dublin, Prof George Kernohan, Ulster University · Nov 2013 – Jul 2017