Mesothelioma palliative care needs: supporting patients and families with new research-based resources

Abstract

Background: Mesothelioma is a rare cancer without cure. Clinical guidelines recommend the timely provision of palliative/supportive care; however, a new study identified barriers to achieving this ambition. Objective: The study aimed to explore palliative care needs and the role of Mesothelioma Clinical Nurse Specialists (MCNSs); and to develop resources to address study findings. Methods: The mixed-methods study included a literature review, focus groups, interviews and surveys. Results: The study highlighted the important role of the MCNSs in palliative care and the need to: address disjointed care; improve support for families; and explain the benefits of palliative care for patients/families. A co-production approach developed an animation for patients/families to demystify palliative care and explain the benefits of early-stage engagement; and an infographic targeted at community and primary care professionals. Recommendations for community nursing practice are described.