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Open Access Research article

Public awareness and attitudes toward palliative care in Northern Ireland

Sonja McIlfatrick1*, Felicity Hasson2, Dorry McLaughlin3, Gail Johnston7, Audrey Roulston4, Lesley Rutherford35, Helen Noble3, Sheila Kelly6, Avril Craig6 and W George Kernohan2

Author Affiliations

1 All Ireland Institute of Hospice and Palliative Care (AIIHPC) & Lead of the Palliative Care Forum for Northern Ireland, University of Ulster, Ulster, Northern Ireland

2 Institute of Nursing and Health Research, University of Ulster, Ulster, Northern Ireland

3 School of Nursing and Midwifery, Queen’s University Belfast, Belfast, UK

4 School of Sociology, Social Policy, and Social Work, Queen’s University Belfast, Belfast, UK

5 Marie Curie Hospice Belfast, Marie Curie Cancer Care, Belfast, UK

6 Patient and Client Council Northern Ireland, Belfast, Northern Ireland

7 Health and Social Care Research and Development Division, Public Health Agency, Northern Ireland, UK

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BMC Palliative Care 2013, 12:34  doi:10.1186/1472-684X-12-34

Published: 17 September 2013

Abstract

Background

The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland.

Methods

A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate.

Results

A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested.

Conclusions

Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care.

Keywords:
Palliative care; General public; Awareness; Questionnaire; Survey