Patient care & support

Calling all parents of children/young people with Duchenne muscular dystrophy and adults with DMD

What do we mean by psycho-social needs for people with Duchenne muscular dystrophy?

There is a high risk of learning, behavioural and communication difficulties in Duchenne muscular dystrophy (DMD) as well as problems affecting well-being. This can present as challenges with learning to read, following instructions, paying attention or making friends. It can also be about feeling anxious or depressed.

As a parent of a young person with DMD, or an adult living with DMD, would you be prepared to discuss any of these issues in a small-group online setting? Duchenne UK, with the support of the Duchenne Research Fund, are currently adapting the Duchenne care considerations for the UK as part of the DMD Care UK project. In order to make sure these reflect the needs of young people with DMD and their families we are really keen to speak to you!

Focus groups will not have more than 6 people in them and will not take longer than one and a half hours. If you are a parent you will be placed in a group with families who have similar aged children. Before the focus group you will also be asked to complete a very short questionnaire. You will be sent an invitation / link to Microsoft Teams in order to join the group.

We hope to hold the focus groups on these dates, with times to be confirmed:

  1. 0-6 years: Wednesday July 21st
  2. 7-13 years: Thursday July 22nd
  3. 14 – 19 years: Tuesday August 3rd
  4. 20 years+: Wednesday August 4th

This work is being led by Dr Janet Hoskin from the University of East London, author of A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents. If you are able to contribute to this project, please contact her at [email protected] as soon as possible.

Published on 12 July 2021

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