Supporting our Supporters (SoS): Improving the experience of family and caregivers of people with mesothelioma
Family and friends play a key role in supporting people with mesothelioma by providing hands-on care, practical help, and emotional and psychological support. However, we do not know much about the impact of caring on the family, and how being a carer can affect health and wellbeing.
Supporting our Supporters aims to find out how needs change over time, what helps people in their caring role, and what are the gaps. We are also finding out about support needs of family and friends during end of life and bereavement.
The research uses a longitudinal mixed methods approach, inviting participants to share their experiences through surveys, interviews, and journaling techniques (diaries, art, photography). All aspects are optional, with participants free to choose which aspects to engage with, and for how long.
The research aims to improve support for families/friends of people with mesothelioma. A final stage of the research will bring together both carers and key stakeholders (e.g. nurses support workers, lawyers, academics) to develop practical methods to both enable and support informal carers of people with mesothelioma.
We will also publish papers to improve professional practice around supporting families and friends, and present findings at academic conferences and feedback findings to support groups
- You can read the abstract of our poster presentation from the 22nd Annual British Oncology Group Conference 2024 , which took place at the ICC in Belfast.
- We invite you to watch a recording of our play, 'Invisible Threads', which was developed in collaboration with the Dead Earnest Theatre Company to raise awareness of the risks of asbestos exposure and to highlight the impacts on families living with mesothelioma.
For further information about the study please contact Sarah Hargreaves (email: sarah.hargreaves@sheffield.ac.uk, telephone: 0114 222 2406).