There is very limited existing research into the lives of people living with muscular dystrophy (MD), and even less so into their caregivers. I've put together a study to put the spotlight on MD and add to the literature regarding how MD affects quality of life. Implications of this will include a greater understanding of the psychological side of MD for researchers, medical professionals, and 'ordinary' readers.
As part of my final year study, I am conducting a survey to understand if and how MD affects quality of life. More specifically, how much one enjoys life, can do things they enjoy and the quality of our relationships with the people in our life. I am also looking for a possible relationship between responses from those with MD and their caregivers, so looking at any patterns, relationships, or effects (or none!).
As someone with LGMD, I know first-hand how lived experience is sometimes overlooked and certainly not spoken about in articles about diagnoses. I appreciate how varied MD is and the importance of listening to lived experience. I hope my project is a small step towards enabling improved conversations around quality of life and that the write-up will be even stronger coming from someone with MD. I also am aware of the impact MD has on the family and wider network and not just on the individual. As such, I have included primary caregivers as they tend to know us best.
The survey is fully online and can be done at your own pace. Participants must be 18 or over, any gender and with any type of muscle-wasting condition. Participants would complete a simple questionnaire. I'd be grateful if people taking part share the link with their primary caregiver to complete as well. They don't need to be done at the same time - simply when either of you are free. All responses will be treated as confidential, and data anonymised. If of interest, I would be happy to share my study results with you.
As the people I am looking for to take part could be considered a 'niche' group, I really appreciate everyone's help so please fill in the survey and share the link with anyone you know that can take part.
The survey can be accessed here and will be open until the first week of April.