How do MND MDT's support decision making about gastrostomy in MND care
Research type
Research Study
Full title
How are people with motor neuron disease (MND) are supported by their clinical teams to make decisions about gastrostomy feeding tube: a multiple case study
IRAS ID
317939
Contact name
Sean White
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 1 months, 1 days
Research summary
Summary of Research
Background
People with motor neuron disease are offered a gastrostomy feeding tube (a narrow plastic tube placed directly into the stomach) when they are unable or at risk of not being able to take enough diet and fluids orally. Research has found that people with MND and healthcare professionals (HCPs) find it difficult to make the decision to have a gastrostomy. A number of different HCP roles who work together as a multidisciplinary team (MDT) are involved in discussions about gastrostomy placement. The aim of this research is to understand how people with MND make decisions in real-world MND MDT practice, to inform the development of professional guidance.
Research plan
Case study research design involves studying a phenomenon within the real-world practice in which it occurs. For this research the case will be the support that MND MDTs deliver to people with MND about the decision to have a gastrostomy placed. Three MND clinics will be recruited as case study 'sites'. A range of different data collection methods will be used including interviews of people with MND, caregivers and HCPs, a review of medical notes, focus groups with the MND MDT, documentation review and observation of practice. The data from each method will be analysed using the Framework approach. The analysis from case study sites and the different case study sites will be triangulated.
In collaboration with the study participants, the findings will be used to develop professional guidance and recommendations for practice. The research and guidance will better inform MND MDTs how to organise the decision support they deliver to people with MND.
The research is funded as part of a NIHR Doctoral Fellowship. The study will be submitted for publication in peer reviewed journals and presented at conferences and study events. Lay summaries will be developed and shared via the MND Association.
Summary of Results
Why did we decide to do this study?
Previous research had described the challenges that people with MND, their caregivers and supporting healthcare professionals experience when making decisions about gastrostomy. These challenges were associated with the context people were making these decisions including coming to terms with the MND diagnosis, the impact of others involved e.g. caregivers and uncertainty about timing of starting interventions.
What did we aim to do?
We aimed to understand how MND healthcare teams supported people with MND to make decisions about gastrostomy placement in real-world practice.
What did we do?
Three MND teams in different regions of the UK agreed to take part in the study. On each study site the research lead observed 42 healthcare professionals discussions with people with MND and their caregivers in clinic and in the home setting and 18 MND team meetings. Twelve people with MND, 9 caregivers and 18 health professionals participated in interviews. Twenty healthcare professionals also took part in 3 focus groups (i.e. group interviews) across the three MND teams. The medical notes of those people with MND taking part in interviews and the documentation (e.g. clinical guidelines) healthcare professionals referred to in their practice were reviewed. The data collected, including the researchers notes and audio recordings of the interviews and focus groups, were analysed by identifying common themes that could help explain what was happening.
What did we find?
Two main themes were identified.The first theme related to the timing of discussions and decisions about gastrostomy The second theme related to how MND teams coordinate the support they deliver to people with MND thinking about having a gastrostomy placed.
The timing of discussions and decisions about gastrostomy placement People with MND and healthcare professionals were found to have different views about when to first discuss gastrostomy and the timing of gastrostomy placement. Healthcare professionals preference was to plan ahead for future disease progression informed by their experience of the disease and guided by the recommendations of clinical guidelines. Healthcare professionals could delay introducing the gastrostomy option if they believed people with MND are not emotionally ready to have discussion. People with MND experienced an emotional response to the option of having a gastrostomy being presented to them. People with MND reported using coping strategies such as avoiding discussions about gastrostomy because of how it made them think about disease progression. Healthcare professionals preference for timely gastrostomy placement was motivated by a wish to avoid increased risks or reaching any sort of crisis if the decision was delayed. However, healthcare professionals were sometimes unable to provide clear information to help inform people with MND about when they should have a gastrostomy placed. A lack of clear guidance and people with MND being reluctant to discuss or make decisions about gastrostomy, contributed to delays.
Coordinating the support that MND teams deliver to people with MND thinking about having a gastrostomy placement.
Two different models of MND care provision were included in this study. Within two of the research sites most healthcare professionals were only available in either the clinic or home setting and the responsibility for supporting people with MND to make decisions about gastrostomy was shared by several healthcare professionals. On these sites more challenges were reported in relation to coordinating decision support across the different healthcare professionals involved who could belong to different teams/organisations and worked in different settings. Within the third site, the same healthcare professionals covered both the clinic and home settings, and one healthcare professional took responsibility for most discussions about gastrostomy. Sometimes the level of detail included in communications and a lack of access to each other’s electronic patient records limited healthcare professionals awareness of people with MND current need for gastrostomy or previous progress made with decision-making. Assigning responsibility to a single healthcare professional reduced the need for several lines of communication between HCPs. There was often a lack of a clear plan about how MND healthcare teams would coordinate the decision support they deliver. The home setting was identified by people with MND and healthcare professionals as the best environment to have discussions about gastrostomy. In the home people with MND were more comfortable, could be supported by family and allowed a focused discussion.
What do the findings mean for practice?
A number of recommendations have been made for MND practice:
• There may be a need to prepare people with MND better for making decisions about gastrostomy placement, including addressing their emotional responses to the discussion.
• People with MND should be supported to make informed decisions about whether or not to participate in discussions about gastrostomy.
• People with MND need more concrete information and support about the timing of their decisions about gastrostomy placement.
• MND teams should develop plans to coordinate how they support people with MND to make decisions about gastrostomy placement.
• Better communication between health care professionals that is widely accessible to all involved could improve the coordination of support given to people with MND.REC name
West of Scotland REC 3
REC reference
22/WS/0171
Date of REC Opinion
14 Dec 2022
REC opinion
Further Information Favourable Opinion