Title: Informing the development of an evidence based public health approach: public awareness of palliative care and advance care planning
Funder: Health and Social Care Research and Development Division (HSC R&D) of Public Health Agency, Northern Ireland

Abstract: Background. Palliative care is defined as an approach to address the problems associated with life-threatening illness by means of early identification, assessment and treatment of physical, psychosocial and spiritual problems1. The World Health Organisation recommends that palliative care should be considered as not only a public health issue but also a human right2, 3 calling for earlier integration within the wider health care system to improve access and availability 4. Advance care planning (ACP), a process though which individuals can plan ahead and make choices about their future is linked with greater use of palliative care that is consistent with a person’s preferences. However, international research suggests that palliative care is poorly understood among the general public 5, 6 and that the majority have not taken steps to anticipate their own future care through the use of ACP 7. This is despite rapid increases in aging, multiple morbidity, and family care giving responsibilities8. The need to raise awareness and understanding of palliative care and ACP amongst the public has been recognised as a key policy priority internationally 9-10, nationally 11-12 and regionally 13-14. In Northern Ireland, the palliative and end of life care strategy, Living Matters Dying Matters13 highlighted the need to raise public awareness and understanding of palliative and end of life care. Building on this the Public Health Agency (PHA) and the Health & Social Care Board (HSCB) in partnership with Macmillan Cancer Support, on behalf of the Regional Palliative Care programme – Palliative Care in Partnership, have identified ACP as a key public priority. However, research by McIlfatrick et al.6, 15 accessed the level of awareness and attitudes towards palliative care among Northern Ireland’s general public, reported an overall lack of awareness and a lack of familiarity of what palliative care means. Similarly, research exploring the views and experiences of service users and carers of palliative care services in the Republic of Ireland and Northern Ireland reported the biggest worry was planning for the future16. A review of the implementation of the Living Matters Dying Matters13 strategy, highlighted that whilst many initiatives have been developed to raise awareness there remains a significant lack of understanding with the need for a coordinated approach to raising public awareness about palliative and end of life care17. The review recommended that raising public awareness of palliative and end of life care should be a core component of a new action plan. Building upon previous work 6, 15 this current study will use the Northern Ireland Life and Times (NILT) annual survey to assess knowledge, attitudes and behaviour of the Northern Ireland general public’s towards palliative care and advance care planning. The NILT has run annually since 1998 and has recorded the attitudes, values and beliefs of the people in Northern Ireland to a wide range of social policy issues. Data from the NILT are publicly available and already widely used by government, local councils, and other policy makers to inform and monitor attitudes and policy in NI. To date, however, public awareness of palliative care and advance care planning, and what strategies should be used to target awareness, has not received attention from researchers using this research instrument. A detailed and comprehensive understanding of public views is needed in order to target regional education and policy campaigns and to manage future needs, expectations and resourcing of end of life care.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE