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.
Current carers/supporters of people with mesothelioma study
The study is now OPEN and we are looking for people to take part in surveys and interviews who:
- provide unpaid help to a relative/friend needing support due to mesothelioma
- live in the UK, or your relative or friend needing support lives in the UK
- are adults (18+ years)
- This includes people who live with the person with mesothelioma, or elsewhere (either locally or at a distance, including abroad).
Survey
Please see the study information sheet and first survey.
If you would prefer to receive a paper copy of the information sheet and survey please contact us to arrange this (see Sarah’s contact details below).
Interviews
We are looking for people to take part in our interview study. This would involve talking to a researcher about your experience of supporting your relative/friend living with mesothelioma, and your support needs.
If you are interested, please contact us for further information (see Sarah’s contact details below).
Bereaved families and friends
This study is now OPEN, and we are looking for people to take part in surveys and interviews who are:
- Aged 18 years or above
- bereaved after your relative or friend needing support died of mesothelioma
- living in the UK, or your relative or friend lived in the UK
Survey
Please see the bereaved families and friends survey.
For further information about the study please contact Sarah Hargreaves (email: sarah.hargreaves@sheffield.ac.uk, telephone: 0114 222 2406). You can also see a flyer about the study.