Supporting decision making on place of death and care in mesothelioma
A mixed method study to develop an intervention to support decision making on place of death and care in mesothelioma.
Making choices about end-of-life is an important, but a little talked about aspect of planning for the future. A key choice is where to die, as this place (home, hospital, hospice or care/nursing home) has an important impact on end-of-life experiences for both patients and their families.
This Yorkshire Cancer Research Fellowship study aims to explore how to better support decision making in people living with mesothelioma and their families on place of death and care in mesothelioma. The findings will also be relevant to other advanced and rare cancers.
The research uses a mixed methods approach to:
- explore national data to find out where people with mesothelioma die
- invite people with mesothelioma to participate in a survey about their end-of-life choices
- analyse previously collected mesothelioma research data from the Mesothelioma UK Research Centre
- invite bereaved families to take part in interviews to find out about end-of-life experiences in different settings
- conduct focus groups with healthcare professionals to find out about opportunities and barriers to advance planning about place of death and care in mesothelioma.
The research aims to benefit people living with mesothelioma and their families through informed decision making on place of death; and also to improve healthcare professional support.
A final stage of the research will bring together people from all stages of the study to co-produce resources to enable and support informed decision making on place of death in mesothelioma.
We will also publish papers to improve professional practice around supporting patients and families in advance planning; present findings at academic conferences; and update the mesothelioma community on the study progress.
This research fellowship is funded by Yorkshire Cancer Research and is supported by the Yorkshire Mesothelioma Clinical Nurse Specialists: Simon Bolton and Helena Stanley (Mesothelioma UK).
For further information about the study please contact Dr Sarah Hargreaves (Yorkshire Cancer Research Fellow). Email: sarah.hargreaves@sheffield.ac.uk or telephone 0114 222 2406.