Understanding the role of Mesothelioma UK clinical nurse specialists in meeting the palliative care needs of patients and families: a mixed methods study

ABSTRACT

Introduction: Patients with mesothelioma and their families have palliative care needs throughout the trajectory of their illness. In the UK, Mesothelioma UK clinical nurse specialists (MCNS’s) are key providers of generalist palliative care. The aim of this study is to explore the palliative care needs of people with mesothelioma and their families, and to explore the role of MCNS’s in supporting patients with palliative care needs. Methods: The study used a mixed methods design involving two workstreams. Workstream one comprised a systematic review and secondary data analysis. Workstream two involved a cross sectional study of MCNS’s using quantitative and qualitative data collection methods. Findings: Eight key findings were generated from the research (1) Patients with mesothelioma and (2) their families have significant palliative care needs, from early in the disease trajectory;(3) MCNS’s are highly skilled at providing palliative care, the majority have received training or education in palliative care;(4) There is an important distinction between ‘specialist’ palliative care and ‘generalist’ palliative care in mesothelioma;(5) Good partnership working between MCNS’s and specialist palliative care is crucial to ensure patients receive seamless care;(6) A co-ordinated approach to a patients care is crucial;(7) Patients and families can be reluctant to accept palliative care due to preconceptions about the term ‘palliative’;(8) COVID-19 has presented significant challenges to both patients and healthcare professionals. Conclusion: This study provides valuable insights into palliative care needs in mesothelioma, and the role of Mesothelioma UK clinical nurse specialists and others in meeting these palliative care needs. A range of recommendations have been developed for practice, further research and policy which focus on acknowledging and supporting the MCNS role in palliative care provision, integrated working with specialist palliative care and identifying/supporting patient and family needs in a timely way. Disclosure No significant relationships.