• Clare Mc Veigh, Joanne Reid, Philip Larkin, Sam Porter, and Peter Hudson.
• School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
• J Adv Nurs. 2018 Feb 1; 74 (2): 383-394.

AimTo 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.BackgroundGlobally, 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.DesignQualitative study.MethodsConvenience 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.ResultsCarers' 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.ConclusionThe 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.© 2017 John Wiley & Sons Ltd.

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