The Psychosocial Needs of Adults Living with Muscular Dystrophy and Similar Neuromuscular Conditions in Ireland.
In 2024, Dr. Finiki Nearchou and her team at UCD, in partnership with MDI, completed a study on the psychosocial needs of adults with muscular dystrophy and similar neuromuscular conditions.
We’re pleased to share the published report from this preliminary study, supported by a grant from the Irish Research Council. The study provides a valuable snapshot of the psychosocial needs of adults living with muscular dystrophy (MD) or similar neuromuscular conditions (NMC) in Ireland.
Please note that the findings are not generalisable to the entire MD/NMC community, as the study had a small sample size of 90 adults and is not representative of the full population.
Some key finding from the study include:
Participants living with MD/NMC reported moderate levels of quality of life and moderate satisfaction with sexual life.
Most participants said they use practical or supportive ways to cope with stress, rather than avoiding the problem. This reflects findings from other studies and highlights the value of encouraging these healthy coping approaches.
Participants perceived moderate levels of social support from family and friends, and high levels from a significant other. This highlights the importance of social support for people with MD/NMC, which can come in many forms.
Reported levels of depression and anxiety were low, which may suggest that those who took part were individuals currently managing well and therefore more inclined to engage with the study.
Participants reported experiencing stigma related to living with MD/NMC. While this area is still under-researched, stigma can deeply affect both physical and emotional well-being and should be carefully considered when tailoring supports.
This study included individuals with a range of neuromuscular conditions. The most commonly reported among participants were Limb Girdle Muscular Dystrophy and Myotonic Dystrophy while Congenital Muscular Dystrophy and Duchenne Muscular Dystrophy were the least represented.
Given the differences in disease progression, age of onset, and symptom severity, across different types of MD/NMC, psychosocial needs are likely to vary significantly between condition types.
To gain a more comprehensive understanding of the needs of people with MD/NMC a larger study cohort is required, with a focus on better understanding the full picture of psychosocial well-being and quality of life through in-depth interviews.
This preliminary study focused on specific aspects of quality of life, including coping orientation, social support, psychological impact and stigma. Importantly the research team worked closely with an advisory panel of MDI members living with different forms of MD/NMC. This PPI advisory panel were involved across all stages of the research process and provided guidance on the types of questions to include.