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.

2 thoughts on “The social and educational effects of caring for a parent with MND

  1. Thanks Olly. Really interesting. One of my closest friends is a parent with MND. His child is about the age that you were when you describe caring for your dad. My own mum died, suddenly and not from MND, when I was about the same age. So I have spent some time thinking about the challenges and sadness that my friend’s child and his partner face, both now and in the future. In your search of the existing research literature was there any evidence of what particularly helps young people and their parents or did you find any helpful resources for parents and / or children?

    • From Olly:
      Thanks for your reply and interest in my research. Although there is surprisingly little research around for young people who are caring for a parent with MND, I did manage to find some relevant information. One of the main points that the existing literature highlighted, was the importance of the young person spending time with their peers. My research reinforced this with participants expressing how much they valued their time at school/college/uni as this provided a time to be ‘normal’ with their friends. However, it was also suggested that the young carers would often feel extremely guilty when not at home with their ill parent. I concluded in my study that this issue is something that must be considered when a parent is diagnosed with MND. Children need to be encouraged to still live their own lives and spend time with their friends. Not only does this provide some escapism, but peers are crucial for support for the individual too. Brewer and Sparkes (2011) have quite a good paper which outlines the importance of friends for the young person (http://www.sciencedirect.com/science/article/pii/S0277953610007938 ) In addition, children having some way to ‘forget’ is something that should be considered, i.e. new hobby/sport- something that the young person can channel their frustration and anger into.

      I think it’s also worth having a look at the MNDA resources (if you haven’t already). There is one called ‘MNDA, Children and Young people’ which definitely hits the nail on the head in suggesting the range of emotions, thoughts and feelings a child may be having. It also outlines a few things parents can do when the disease progresses etc (http://www.mndassociation.org/life-with-mnd/Everyday+Living/children-and-young-people-new-information)

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