The organisation and delivery of decision support to people with MND making the decision to have a gastrostomy placed

Understanding the practice and attitudes towards supporting people with MND making the decision to have a gastrostomy 

Previous research has highlighted the complex process people with MND, their caregivers and healthcare professionals (HCPs) travel when making decisions about gastrostomy feeding tube placement. HCPs are a trusted source of information and support during this time, though challenges have been reported with regards to how this support is provided. This study will explore how UK HCPs initiate discussions about gastrostomy, inform people with MND about their options and communicate with the multi-disciplinary team (MDT).

The findings will provide a better understanding of how HCPs, as individuals and as part of a MDT, deliver decision support, which will enable HCPs to identify where service improvements could be made and to guide future research design. The research will also be used inform the design of a multiple case study planned for next year where researchers will be observing decision making in real-world practice and developing guidance to better coordinate the decision support approaches taken by MND MDTs.

What does taking part involve?

Taking part involves completing an online survey. Participants will be asked to read a participant information sheet and confirm consent (embedded into the online survey). Following confirming they meet the inclusion criteria participants will complete the survey which takes 15-20 minutes.

Study location

UK wide (online)

Who can take part?

• Healthcare Professionals who have experience of supporting people with MND to make decisions about gastrostomy placement

How can I take part?

To take part in the study please click on the 'take part in the study' orange button on this page.

If you have any questions or require more information please contact the principal researcher, Sean White, on or 01142222295.


National Institute for Health and Care Research (NIHR)