The experience of palliative care service provision for people with non‐malignant respiratory disease and their family carers: An all‐Ireland qualitative study

Abstract Aim To explore specialist and generalist palliative care provision for people with non‐malignant respiratory disease, in rural and urban areas in the North and Republic of Ireland. Background Globally, palliative care is recommended as an appropriate healthcare option for people with advanced non‐malignant lung disease. Yet, there is limited evidence regarding the integration of palliative care for this client group. Design Qualitative study. Methods Convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from two rural and two urban sites on the Island of Ireland. Data were collected throughout 2012 and 2013 through semi‐structured interviews with carers of patients with Chronic Obstructive Pulmonary Disease (N = 12), interstitial lung disease (N = 4) or bronchiectasis (N = 1) who had died 3–18 months previously; and four focus groups with healthcare professionals. Data were analysed using a thematic analysis framework. Results Carers’ interviews yielded three overarching themes: (1) lack of preparedness for death, due to ambiguity regarding disease trajectory; (2) lack of consistency in palliative care delivery, in relation with the receipt of generalist and specialist palliative care; and (3) role ambiguity, related to their caregiving role. Focus groups identified two overarching themes: (1) barriers to appropriate palliative care; and (2) the future direction of palliative care for patient with non‐malignant respiratory disease. Conclusion The uncertain disease trajectory was not only experienced by carers but also healthcare professionals. Although referral to specialist palliative care services was perceived as increasing, the availability and coordination of generalist and specialist palliative care services were fragmented and varied dependent on geographical location.