Receiving a diagnosis of Motor Neurone Disease (MND) can often lead to people feeling that they are losing control within their lives. Researchers at the University of Stirling and the University of West of Scotland have recently published research which explores the experiences of people living with MND and the factors which may contribute towards them feeling a lack of control. One of the paper’s authors, Nicola Glennie, tells us more about this research.
“Previous studies suggested that not being able to maintain a sense of control is a cause of anxiety and stress for people. We were interested in finding out what things might be contributing towards people feeling like this and what things people might do to help them feel like they are in control of their lives. To find answers we searched for and pulled together the findings from all the existing published research looking at people’s experiences of feeling in or out of control in their daily lives when living with MND.”
What did we find out?
We found that a diagnosis of MND can affect people’s beliefs about how much control they may have over different aspects of their lives. Being diagnosed with MND seemed to cause some people to question their beliefs about how much control they may have over their health, their fate, their identity, and their body. An example of this was that before their diagnosis some people believed that if they felt ill, they would be able to go to the doctor and be told how to cure or control their illness. However, the long and uncertain diagnostic process and discovering that there is no cure or effective treatment that can control the progression of MND made people question if this belief was correct. It left people wondering what they can believe now and caused some people to question whether medical professionals were able to provide any help to them at all.
We also found that people used a range of different strategies to try to retain some control in their lives and that these strategies could change over time, and sometimes overlapped. Three strategies were most common (click on each drop-down box to find out more):
[toggle title=”1. Developing their own ideas about how to control their illness.”] Due to the lack of certainty from medical professionals about progression of MND some people developed their own ideas about how to control their illness. For example, one participant believed that using a machine to help them breathe would make their breathing muscles get weaker more quickly, others felt if they kept walking unaided this would maintain their muscle strength. [/toggle] [toggle title=”2. Only focusing on the present situation.”] For some people thinking about their future seemed overwhelming and to help them feel more in control they only focused on living day to day, preferring not to plan for future possibilities.[/toggle] [toggle title=”3. Re-evaluating their lives so that the focus was now on their own personal values.”] This would mean discarding activities that were now less important to them, such as their job, in favour of those they considered more important like spending time with their family. [/toggle]Why is this important?
It can be very shocking and unsettling if what you have believed all your life is suddenly shown not to be valid. Our finding that this can happen even before people receive a diagnosis of MND suggests that alterations to people’s beliefs about how much control they have in their lives may be causing them anxiety and distress very early on in their journey with MND. These issues may be causing more distress in the early stages of their illness than their physical symptoms.
Our findings about people’s control strategies are also important in several ways:
- People developing their own strategies to control their illness may lead to misunderstandings or conflict – both within families and between healthcare professionals and people living with MND.
- Focusing only on the present may also lead to conflict with healthcare professionals, who are trained to think ahead about future care, or with family members who prefer to plan for future possibilities.
- People’s personal values are not often the way we measure outcomes in healthcare and again this may lead to conflict. For example, one participant in the study did not feel the need for assisted ventilation as she could still take part in the activities she wanted to, but her medical team, using clinical ways of measuring outcomes, felt that it was needed.
For healthcare professionals, family members and others involved in the care of someone living with MND it’s very important we acknowledge that the ways people attempt to maintain control are personal to them and may differ from the ways we think control could be maintained. There is no right or wrong way of attempting to maintain control. An open discussion of differing viewpoints in both clinical and home environments may help to avoid the potential for conflict.
How can this improve future care?
People’s beliefs about how much control they have in their lives, and the different ways they choose to try and maintain that control after diagnosis, are equally important. It can affect the way they manage their daily lives, their relationships with friends and family and how they interact with healthcare professionals. However, these issues are not often something discussed over a cup of tea with those who share their care. Healthcare provision often focuses on the physical symptoms of MND, whereas what this review highlights is that from the very beginning of someone’s journey with MND there are other non-physical issues which also cause anxiety and distress. The findings of this review will hopefully lead to more open conversations and better understanding between people living with MND, their families and healthcare professionals.
With thanks to Nicola Glennie for contributing this blog article. Nicola presented her work at MND EnCouRage UK 2022.
