Care and support interventions
- A care coordinator can be the crucial person here: they can serve as a point of contact for families and become a trusted person. This person needs to have sufficient knowledge and background in neuromuscular disorders to be able to meet routine family information needs.
- Proactive intervention is essential to help avoid social problems and the social isolation that can occur in the context of DMD. Examples of useful interventions include increasing awareness and education about DMD in school and with peers, ensuring participation in appropriate sports and camps, provision of service dogs and contact with others via the internet and other activities.
A special individualised education plan should be developed to address potential learning problems and to modify activities that might otherwise prove harmful to the child’s muscles (e.g. physical education), reduced energy/fatigue (e.g. walking long distances to/from lunch), safety (e.g. playground activities), and accessibility issues.
- Making sure the school is fully informed about DMD is important. Share with them all the information you have and identify the person at the school who is there to support children with additional needs. A proactive approach is important to make sure that the child with DMD accesses the full range of education he needs to develop good social interactions and prepare for further education and employment. So the school needs to be on side!
- Promoting independence and involvement in decision making (in particular, as relates to medical care) is necessary and of significant importance to promote autonomy and independence. This should be part of a planned transition program from paediatric to adult care.
- Helping to develop social and learning skills will make it easier to find a job and be part of normal daily life in adulthood. Boys with DMD benefit from having support to reach their personal goals.
- Access to palliative care services is appropriate to relieve or prevent suffering and to improve quality of life, as needed. In addition to pain management, palliative care teams may also be able to provide emotional and spiritual support, assist families in clarifying treatment goals and making difficult medical decisions, facilitate communication between families and medical teams, and address issues related to grief, loss, and bereavement.