Recommendations for best practice in diagnosing hemiplegia or cerebral palsy
Careful thought should be given to all aspects of the way in which parents are told that their child has hemiplegia or cerebral palsy:
- who tells them?
- what is said?
The professional giving the parents a diagnosis of CP should have received appropriate training in this.
If the clinician is in no doubt about the condition, a diagnosis of CP should be communicated to parents as early and clearly as possible.
Where there is uncertainty about the diagnosis, parents should be told that their child may have a motor disorder. The child's progress will be monitored over time and a diagnosis may be possible as the child develops.
The information given at that first interview needs to be fully understood and absorbed. Parents should always be offered further appointments to discuss the diagnosis and implications for their family. Parents also need ongoing support and the facility to discuss further questions that may arise.
The child's strengths and weaknesses, if known, should be discussed with the parents, stressing that each child with CP is a unique individual with their own potential. Although the child's disabilities need to be addressed, parents should also be encouraged to see their child in terms of his or her abilities too. This is a more positive way to inform parents and to help them to find ways to help their child fulfil their potential.
The presence of a person known to the parents during the telling of the diagnosis is advisable, but this may not be possible in many centres. Alternatively, a specially trained nurse or therapist may be able to take on a counselling and co-ordinating role, acting as the patients' and parents' advocate. The support needed at this time is immediate and often practical, such as how will the family get home, contacting the other parent if absent from the interview and helping parents to form the questions that need to be asked.
Written information about the diagnosis and prognosis as discussed between the clinician and parent should be given to the parents as soon as possible after each visit.
A child with CP should be given appropriate information when they ask questions.
Consideration should be given to providing psychological support for adolescents with CP to support them in their transition to adulthood.
Putting parents in touch
It can be helpful for parents to meet other people in the same situation. Voluntary agencies may be in the ideal position to put parents in touch with each other. Self help groups, such as Scope and HemiHelp, have key roles in this respect.