Strand 1 – Social Justice
‘PATHWAYS TOWARD SOCIAL JUSTICE: UNDERSTANDING EQUALITY AND INCLUSION IN PALLIATIVE CARE’. Led by
Professor Philip Larkin Associate Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems, College of Health Sciences, University College Dublin (UCD)
The Social Justice Strand (SJS) is based on the premise that inequality exists in relation to palliative and hospice care access and service delivery across the island of Ireland for certain groups of people. This strand will examine the experience of inequality towards and through hospice and palliative care service delivery across the island of Ireland as reported by individuals, their families and the health and social care workers who support them. It will utilise generated evidence to develop best practice approaches which strengthen relationships and facilitate greater awareness of the hospice and palliative care needs of people currently excluded by virtue of misunderstanding, diminished recognition and/or prejudice.
WP1: Identifying and addressing the needs of people with serious mental Illness
Dr Ann Sheridan, School of Nursing, Midwifery & Health Systems, UCD
Professor Gerard Leavey, Director Bamford Centre for Mental Health & Wellbeing University of Ulster (UU)
Aim: To provide a better understanding of the need for and experiences of people with pre-existing diagnosed mental illness with regard to palliative care and end of life care in Ireland. The evidence from this work will then form the basis for innovation and change in service delivery for people with these conditions.
WP2: Identifying and Addressing the Needs of People with Intellectual Disability
Professor Mary McCarron, Dean of Health Sciences, School of Nursing & Midwifery, TCD
Dr Karen Ryan, Palliative Medicine Consultant, Mater Misericordiae Hospital & St Francis Hospice & Clinical Lead for Palliative Care, HSE
Aim: To understand the determinants of access and lack of access to palliative care for persons with intellectual disability (ID) and life-limiting conditions. (1) To better understand the factors influencing end-of-life care transitions and pathways and (2) to ascertain perceived QoL and QoD and personal, professional, organizational and policy-based practices that influence the continuation inequalities in access and treatment.
WP3: An Exploration of access, decision making and experiences of palliative care services for families of children with a non-malignant life-limiting condition
Dr Gemma Kiernan, Lecturer, School of Nursing & Human Sciences, Dublin City University
Dr Honor Nicholl, Lecturer, School of Nursing & Midwifery, TCD
Aim: To explore access to, decision making regarding and experience of palliative care at critical time points during a child’s illness trajectory and to develop an evidence-based model of service provision for these families.
WP4: Exploring Dimensions of Inequality in Current Palliative Care Provision for Carers of People with Advanced Heart Failure in Ireland
Dr Donna Fitzsimons, Senior Manager for Nursing Research, Belfast Health & Social Care Trust and Professor of Nursing, Institute of Nursing & Health Research, UU
Dr Sonja McIlfatrick, Reader, Institute of Nursing & Health Research, UU, Head of Research, AIIHPC
Aim: To evaluate the dimensions of inequality expressed by carers of patients with advanced heart failure in Ireland and to explore any relationship between this and a range of other factors including the patient’s clinical profile and support available.