The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

J Adv Nurs. 2014 Mar;70(3):687-97. doi: 10.1111/jan.12240. Epub 2013 Sep 1.

Abstract

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3-18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

Keywords: all-Ireland study; bereaved caregivers; focus groups; healthcare professionals including nurses; non-malignant respiratory disease; palliative care; semi-structured interviews.

Publication types

  • Research Support, Non-U.S. Gov't
  • Validation Study

MeSH terms

  • Caregivers / psychology*
  • Humans
  • Ireland
  • Northern Ireland
  • Palliative Care*
  • Reproducibility of Results
  • Respiratory Tract Diseases / nursing*