Background Mesothelioma is a rare incurable cancer caused by exposure to asbestos. Patients with mesothelioma have palliative care needs throughout the course of their illness, however patients and their families are often reluctant to engage with palliative care. In addition, due to the rarity of the disease, health professionals may not recognise the role of palliative care in mesothelioma. The aim of this work was to use creative co-produced methods to disseminate the findings from a mixed methods study of palliative care in mesothelioma.
Methods A mixed methods study of palliative care in mesothelioma was undertaken in 2019–2022 across the UK. Findings from the study were synthesised and used to inform the co-production of a short patient facing animation and an infographic for health care professionals.
Results Results from the mixed methods study found: (i) patients with mesothelioma have significant palliative care needs; (ii) patients/carers are often reluctant to engage with palliative care due to negative preconceptions; (iii) early engagement with palliative care can be hampered by variable referral pathways and uncoordinated care. A three-minute animation was developed by a creative design company in collaboration with patients/carers, researchers and clinicians. The animation explains the role of palliative care in mesothelioma, addresses common myths, and encourages patients to engage. In addition an infographic aimed at healthcare professionals was developed, which provides easily digestible information about mesothelioma and the role of palliative care, and points to sources of support.
Conclusion Our work demonstrates the importance of co-designed, creative outputs in research dissemination and public engagement in palliative care. The animation and infographic are being used by the charity Mesothelioma UK as part of their on-line resource centres for patients and health professionals. Subsequent work will use web analytics to capture evidence of impact, and assess broader applicability to other cancers.
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