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Keywords:

  • cancer;
  • end of life care;
  • focus groups;
  • interviews;
  • non-cancer;
  • nursing;
  • palliative care;
  • qualitative research

Abstract

Title. Assessing palliative care needs: views of patients, informal carers and healthcare professionals

Aim.  This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers.

Background.  Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need.

Method.  Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework.

Findings.  Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases.

Conclusion.  All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.