Psychosocial management

Help with behaviour and learning

People with DMD may have an increased risk of psychosocial difficulties, such as problems with behaviour and learning, and medical care is not complete without support for psychosocial wellbeing. Difficulties in social functioning may be due to specific challenges in particular skills, such as getting on with others, judging social situations, and perspectives, while the consequences of DMD (such as physical limitations) may result in social isolation, social withdrawal, and reduced access to social activities. For many parents, the stress caused by the psychosocial problems of the child and difficulties in getting them recognised and properly treated exceeds the stress associated with the physical aspects of the disease.

Important facts to remember

  1. The psychosocial health of your son and your family is important.
  2. Your son may have a higher chance of having psychosocial difficulties.
  3. You and your family are at risk of some problems such as depression.
  4. The best way to manage psychosocial problems is to identify them early and start treatments.
  5. Correct use of language may be a problem, as may continuing difficulties at school. These behaviors are often seen in DMD and can be helped with proper assessment and input.
  6. Learning problems in DMD are not progressive and most boys catch up when they receive good help.

If you think your child has worries about his condition, openness and a willingness to answer his questions can go a long way to preventing further problems. Boys with DMD often understand more about their condition than their parents think. It is important to answer questions openly, but be ageappropriate in your answers and just answer what is being asked. This can be very difficult, but the staff at your clinic can offer help and guidance about what has worked for other families, as can patient support groups.

Not everyone with DMD will have psychosocial difficulties, but families should keep an eye out for:

  • Weaknesses in language development, comprehension, and short-term memory;
  • Learning problems;
  • Difficulty with social interactions and/or making friendships (i.e., social immaturity, poor social skills, withdrawal or isolation from peers);
  • Anxiety/worry;
  • Frequent arguing and temper tantrums;
  • There is also increased risk of neurobehavioural and neurodevelopmental disorders, including autism-spectrum disorders, attention-deficit/hyperactivity disorder (ADHD), and obsessive-compulsive disorder (OCD);
  • Problems may be encountered with emotional adjustment and depression. Anxiety may also be an issue and can be made worse by deficits in mental flexibility and adaptability (i.e. an overly-rigid thought process);
  • This can also result in oppositional/ argumentative behaviour and temper problems;
  • In addition, increased rates of depression in parents of children who have DMD underscore the need for assessment and support of the entire family.

The emphasis in psychosocial management should be strongly on prevention of problems and early intervention, as this will maximise the potential outcome. In general, the psychosocial problems should be treated with the same effective, evidence-based interventions that are used in the general population. This means it is important to look for help if you think there are problems in this area.

Information based on consensus statement (published in January 2010)