Psychosocial Management Overview
Navigating the path of living with Duchenne can be complex, and psychosocial and emotional support are critical for both the person living with Duchenne and their families (box 7). Psychosocial issues can arise at any time. It is important that you let your neuromuscular team know if you are having issues with any of the things listed below.
- Difficulty with social interactions and/or making friendships (i.e., social immaturity, poor social skills, withdrawal or isolation from peers)
- Learning problems
- Excessive or constant anxiety/worry
- Frequent arguing and behavioural outbursts; difficulty controlling your anger or sadness
- Increased risk of neurobehavioural and neurodevelopmental disorders, including autism-spectrum disorders, attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD)
- Problems with emotional adjustment and anxiety and/or depression
Psychosocial and emotional issues are an important part of your health and should not be ignored. If you are having worries, concerns or questions about your diagnosis, or anyting else, it is important to get answers. You should be asked, formally or informally, about anxiety and depression at every neuromuscular visit and, if there are issues, you should be referred for evaluation and treatment as quickly as possible.
Box 7. For Families
Parents who are open and willing to answer questions will make it easier for children to ask. It is important to answer questions openly, but in an age-appropriate manner, and just answer the question being asked (without elaborating). We realise that this can be a very difficult conversation to have with your child. Advocacy groups and the staff at your clinic can offer help with information, guidance, and resources. The neuromuscular team should know children are reaching out and that support would be appreciated. They can help connect families with a medical provider most appropriate to help with delicate conversations.
While it is important for the individual with Duchenne to receive psychosocial and emotional support, this diagnosis affects the entire family. Parents and siblings may also be at risk for social isolation and depression. It is important that you tell your neuromuscular teams how your family is doing at each visit and, if you feel you could benefit from counselling, be sure to get referrals.
Several well-known interventions exist to help in various areas of psychotherapy. These include training for parents in trying to cope with behaviour and conflicts, individual or family therapy, and behavioural interventions. Applied behaviour analysis may help with certain behaviours related to autism.
A useful resource in the UK is: A Guide to Duchenne Muscular Dystrophy, Edited by Janet Hoskins (https://www.jkp.com/uk/a-guide-to-duchenne-muscular-dystrophy-2.html)