How can we better support patients and their families with the emotional and behavioural difficulties experienced in DMD?

By Andria Papageorgiou, Clinical Intervention and Practice Research Group, School of Psychology, Faculty of Health and Medical Sciences, University of Surrey

The impact of DMD 

Studies have shown that Duchenne muscular dystrophy (DMD) does not only affect the muscles, but it can also impact the brain, usually in the form of emotional and/or behavioural difficulties that can be identified in early childhood.

We wanted to further understand these behavioural challenges through a study that explored the experience of boys with DMD as well as their families.

The study brought together focus groups of boys and their parents/carers and asked them, separately, to share any behavioural and/or emotional difficulties they have experienced, the impact that this had on their lives and what support they would like to receive to combat this.

Findings from the carer focus groups showed that the main themes were related to going beyond the DMD diagnosis, the journey the families face and the hope for future help.

Parents and carers feel they need more support

Parents and carers expressed that the main issue they face is getting ongoing support beyond diagnosis and not feeling supported later on in their journey as the boys get older.

Families feel that their loved ones with DMD need more support than is currently received, whether with school, behavioral management, siblings or getting help from experts. They often feel left alone to manage DMD-associated difficulties with no clear guidance and have to fight for any additional support.

The study highlighted the need for a clear pathway in which coherent support will be provided for families beyond the point of initial diagnosis. It was also found that parents and carers need a space to discuss and connect with people in the same situation as a way of emotional support and gathering useful information.

Managing the emotional complexities of DMD can feel overwhelming for people living with the disease

Findings from the children and teens focus groups showed that the main issues they face are the complexity of emotions in DMD, the awareness of being different from their peers and the need to be heard by their family and friends.

The study shows that boys with DMD feel that they need support with managing their emotions as they described them as being overwhelming.

The current coping strategy the boys shared is shutting down and removing themselves from uncomfortable situations, which leaves them further isolated and unable to process and regulate their emotions. They also expressed feeling different from their peers and being very aware of their physical and emotional limitations.

They also expressed the need to have more control over their lives and choices by being allowed to have a voice, something that could potentially be achieved by having more open communication at the family level as well as making them a part of discussions involving their personal care.

Patient and carer perspectives are crucial in creating change

Giving boys with DMD and their families the opportunity to share their perspectives has been crucial in informing us on the next steps needed to advance the field. Future steps include the development and testing of a carer programme that addresses these behavioural and emotional difficulties and provides information on how to manage these while looking after one’s own self.  We would also like to push for further psychoeducation to be provided in school and family settings to increase awareness of DMD and reduce the feeling of isolation for boys with the disease.

This project is part of a research thesis for a Doctorate Training in Clinical Psychology. If you are interested in further details, you can contact the lead researcher Andria Papageorgiou at [email protected]

Published on 22 February 2024

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