Life of an MND researcher – part 2: PhD edition

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.

In our previous article we introduced four MND researchers who gave us an insight what a typical day in the life of a researcher looks like and what carrying out a research study actually involves. In this continuation article, you will get the chance to look into the lives of four PhD students, who give us an overview of their projects and their usual daily duties.Read More »

Using video messages to help leave a digital legacy

In a guest blog, PhD student Oliver Clabburn tells us about his family’s experience of MND and his research interests. He also explains how you and young people in your family can help him with his latest research project looking into digital legacies.

Olly Clabburn

In the mid-nineties my family joined the technology revolution with an answering machine! We had only just returned home when my Dad started recording the answering message.

In 1997, Dad started having problems with his speech and weakness in his legs. He was diagnosed with MND later on that year, and within a few months after first visiting the doctor, he had stopped work because of his deteriorating speech and regular falls. He became more and more reliant on his robotic sounding light-writer as he lost his voice, and soon, the answering machine was the only reminder I had of what he once sounded like.Read More »

The social and educational effects of caring for a parent with MND

Olly Clabburn

Last year, we helped Olly Clabburn to advertise an opportunity to take part in his dissertation research project on our website and in our monthly membership magazine Thumb Print. 

To give you some feedback on what drove him to study the social and educational effects of caring for a parent with MND and his key findings, he’s written us a guest blog:

When I was seven years old my Dad was diagnosed with Motor Neurone Disease. At the time, I found it hard to understand why he had to stop doing the normal ‘Daddy things’. He stopped going to work, began speaking in a slow and strange way, and then had to give up his car which was extremely hard for him.

Gradually over the three years in which we looked after him at home, myself and my family became full-time carers for him. This involved helping him when he fell over, getting him drinks, food, toileting amongst a plethora of other things. Yet my friends at primary school seemed to be having a very different life at home while I was doing a variety of things for my Dad which I believed to be ‘normal’.

As my Dad began to deteriorate more, caring at home became more and more challenging. Consequently, he moved into the Hospice for the final few years where he could get the specialised help that was now required. Although the Hospice staff were amazing for my Dad and family, the inevitable happened in April 2004 when he passed away after a long battle with MND.

Years passed and after studying Psychology at Sixth-form, I developed a keen interest to how we work as people and why we ‘do’ certain things. I then enrolled in Lancaster University to study Psychology in Education for which I conducted a dissertation research project. Fuelled by my experiences, I decided to further investigate young-carers and their experiences caring for a parent with MND. My project subsequently was titled ‘the social and educational effects of caring for a parent with Motor Neurone Disease’.

Upon deciding to research this specific area, I knew recruiting participants would be challenging with MND being so rare and not generally considered to impact upon young-people’s lives. I therefore established communications with the MND Association in the hope for some advice or guidance. Ultimately, the association made my research possible as without their assistance, I simply would have not been raise awareness of my study and conduct the research.

The MND Association allowed me to publish a letter in the Summer 2011 edition of Thumbprint outlining my study and need for young people who were once young carers. The Association later added a webpage under the research section of the Association’s website which also assisted with recruitment. As a result of the magazine and webpage, I managed to recruit and interview 7 participants who had once, or currently were, caring for a parent with MND.

Upon writing up my research, there were 6 clear themes raised by the participants which were considered to be the main social and educational effects of caring for a parent with MND.

1)      DIAGNOSIS: Many of the young carers felt somewhat confused and unaware about MND and what their parent being diagnosed actually meant. Consequently, it often came as quite a surprise when a parent’s care needs increased. It was also found that the terminal nature of MND was often hidden from the young-people in an attempt to shelter them.

2)      YOUNG CARER DUTIES: One of the key duties a young person adopted after the diagnosis, was increased responsibility for household chores enabling their healthy parent to spend more time with the MND patient. It was also noted that the young people tended to adopt a more ‘social care’ role, meaning they would often sit with their parent and keep them company rather doing the more intimate caring tasks.

3)      RESPONSIBILITIES:  Older siblings tended to adopt a more parental role for younger siblings by helping out with school runs, help with homework or carrying out more caring tasks for the ill parent to shelter their younger sibling. It was also noted that all participants had a greater appreciation for their healthy parent and a closer relationship as a result of MND.

4)      EDUCATION: All participants emphasised the importance of education (school/college/university) providing a period of escapism. This meant that for the time in which they were in the educational setting, they could temporarily forget about life at home and be ‘normal’. Interestingly,  it was also noted that having a parent with MND brought some educational benefits. For example, their parent being permanently at home provided an opportunity to help with homework. It was also commonly acknowledged that the disease/bereavement fuelled a great deal of motivation for the young person to achieve educational success.

5)      SOCIAL: It was noted that peers and friends provided another extremely important method of escapism. Participants found that they could gain advice or simply ease the burden by discussing life at home. It was additionally noted that peers may introduce the young carer to new hobbies and interests which also allowed the individual to escape or channel emotions. However, it was also outlined that guilt was also a common feeling when with peers and not at home with their parent.

6)      POSITIVE ASPECTS: Overall the participants in the research outlined a variety of positive aspects that they have drawn from the experience. Most notably, a feeling of maturity compared to peers, the ability to accurately empathise with others, closer relationship with family members and increased motivation leading to educational success.

Finally, it was noted that a diagnosis of MND is inevitably traumatic and creates many negative outcomes for all involved. The research however aimed to reinforce the idea of optimism thus coinciding with the ‘MND Month for Optimism’ campaign.

Young carers will spend much of their time caring for their terminally ill parent and later suffer bereavement. Nevertheless, the research highlighted the positive benefits that individuals can gain from this known negative experience.