Abstract
BackgroundPrevious research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland.MethodsQualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3–18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis.ResultsFindings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management.ConclusionThis research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.
Highlights
Previous research and key guidelines have suggested potential models of palliative care for patients with Chronic obstructive pulmonary disease (COPD) and interstitial lung disease
Confirmability data are not available it is estimated that the extent of other non-malignant respiratory diseases (NMRDs), such as interstitial lung disease (ILD) and bronchiectasis, are a growing global health problem [2]
NMRD is on the increase internationally and nationally evidence suggested that patients with NMRD often do not receive optimum holistic care [6], or the same standards of palliative care as patients with malignant respiratory disease [7, 8]
Summary
Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. These recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. Confirmability data are not available it is estimated that the extent of other non-malignant respiratory diseases (NMRDs), such as interstitial lung disease (ILD) and bronchiectasis, are a growing global health problem [2]. In the United Kingdom (UK) it was highlighted that there were 1.68 deaths from bronchiectasis per 100,000 population in 2007, with the mortality rate increasing by approximately 3% per year [4]. This research [7, 8] focused on patients with a diagnosis of COPD and their carers, and not those with ILD or Bronchiectasis
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