People with MND are asked to make multiple decisions about treatments throughout the course of the disease. One such choice is whether to have a gastrostomy feeding tube, a narrow plastic tube placed directly into the stomach, to allow nutrition to be given when unable to take enough by mouth (also known as a PEG, RIG or PIG). Research has found that people with MND find it difficult to make the decision to have a gastrostomy. MND care is delivered by nurses, doctors and therapists, working as a multi-disciplinary team (MDT). A person with MND can receive support in making decisions about gastrostomy placement from all of the MDT. The aim of this research is to explore how people with MND can be supported to make decisions about gastrostomy placement by the MND MDT.
The researcher is currently looking for help to guide the design of the planned study through the formation of a patient and public involvement (PPI) group. This group will allow the researcher to collaborate with people with MND and their families who have experience of making decisions about gastrostomy feeding tube placement.
What does being part of the PPI group involve?
PPI group members would be asked to provide feedback on research documents such as lay summaries, research protocols, interpretation of research findings and how best to communicate the research findings to healthcare professionals and people with MND.
Feedback can be provided via taking part in virtual group or one-to-one discussions (no requirement for travel) or by using written communication e.g. via email.
There will be no more than 2 meetings per year and there is no expectation for every group member to attend every meeting. The meetings will be taking place over the next 3 years.
Group members will be reimbursed for their help with designing the study and will be offered Β£25 per one hour meeting and Β£12.50 for providing feedback remotely on research documents.
Who can be in the PPI group?
How can I get involved?
To be a part of this group, or to find out more about it, please email the lead researcher Sean White at [email protected] or call on 0114 2222295.
The researcher is currently looking for help to guide the design of the planned study through the formation of a patient and public involvement (PPI) group. This group will allow the researcher to collaborate with people with MND and their families who have experience of making decisions about gastrostomy feeding tube placement.
What does being part of the PPI group involve?
PPI group members would be asked to provide feedback on research documents such as lay summaries, research protocols, interpretation of research findings and how best to communicate the research findings to healthcare professionals and people with MND.
Feedback can be provided via taking part in virtual group or one-to-one discussions (no requirement for travel) or by using written communication e.g. via email.
There will be no more than 2 meetings per year and there is no expectation for every group member to attend every meeting. The meetings will be taking place over the next 3 years.
Group members will be reimbursed for their help with designing the study and will be offered Β£25 per one hour meeting and Β£12.50 for providing feedback remotely on research documents.
Who can be in the PPI group?
- People living with MND: individuals with a confirmed diagnosis of MND who have experience of making the decision to have a gastrostomy placed
- Family members or Carers of those with MND: any individual over 18 years, who looks after a family member, partner or friend with MND who has experience of making the decision to have a gastrostomy placed
How can I get involved?
To be a part of this group, or to find out more about it, please email the lead researcher Sean White at [email protected] or call on 0114 2222295.
Comment