Abstract
Abstract Background: Cystic Fibrosis (CF) is one of the United Kingdom’s most common life limiting genetic disorders. Improvement in treatment modalities over the last 20 years has resulted in this group of patients living longer. The acceptability of accessing early palliative care for patients with CF and staff perceptions of a palliative care referral for this group is relatively unexplored. Integrated care has been used as a theoretical model to underpin this study. Aim: To explore the experience and perceptions of patients with CF and staff regarding palliative care and the acceptability of this as a service early in the patient’s disease trajectory. Method: A Mixed Methods Study informed this research. This three phase study included a Focus Group (phase 1) with 8 experts from both CF and palliative care, a national survey (phase 2) with 46 experts from CF and palliative care teams, and 17 interviews (phase 3) with patients with CF and health care professionals who care for patients with CF. Results: The term “palliative care” remains a barrier for some professionals in considering a referral to palliative care. Patients interviewed did not have such a problem with the term. Patients are supportive of palliative care being introduced earlier in the disease trajectory. Currently there is evidence to suggest that over 50% of teams do not have an integrated service between CF and palliative care. Discussion: This innovative study has identified a lack of clarity relating to when a patient with CF should be referred to palliative care services. Uncontrolled symptoms and transplant have been highlighted as potential triggers for referral to palliative care services. Patients have recognised that transplant may be too late for a referral and would like to be made aware of palliative care services earlier in the disease pathway. A model of integrated care has been generated from the findings of the study. Conclusion This study has explored early palliative care in adults with CF and considered the perceptions and experiences of patients and health care professionals. This three phase study has determined the views of patients for the first time regarding early palliative care. Together with national data in phase two and in depth interviews in phase three, an integrated model between CF and palliative care is proposed that illustrates the views of the patients and health care professionals, offering considerations for organisations in the development of integrated services. Key words: Cystic Fibrosis, Palliative Care, Integrated Care, patient and health care professional perceptions and experiences.