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.
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:
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)