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Telling parents that their child has hemiplegia is a critical event. The majority of parents often recount details about how they were told: who told them, when, where, and what they were told.
The way parents are given the diagnosis is important. It may influence how they build up an ongoing relationship with their child and the team caring for their child, and moreover how they interact with those professionals.
A survey of parents on their feelings about the care their child received identified two areas of dissatisfaction: general information and specific information. In addition, research has shown that only 37 per cent of parents were satisfied with the way in which they were told their child had a disability.
If giving the diagnosis does not go well, parents (or professionals) may put up defence mechanisms that hinder further progress. This can be exacerbated by parents with disabled children being described by professionals within a pathological framework, such as “over-emotional” or “unable to accept the diagnosis”.
The parents may feel they can blame the professionals for not listening or communicating properly. Unfortunately some health professionals may feel they can blame the parents for any dissatisfaction they experience at the time of diagnosis.
In reality, apportioning blame is inappropriate – the problem is that the two sides are hearing different things.
Parents may know very little about hemiplegia. They may also be too shocked to formulate and ask questions at the time they are given the diagnosis of hemiplegia.
There may be particular issues communicating with parents if the diagnosis cannot yet be established.
The concept of an ‘evolving motor disorder’ can be used to point out the extent of the child’s abilities. Placing a child into a diagnostic category does not necessarily indicate what may happen to them in the future. The young developing child is continually changing and an evolving disability has to be considered in this context.
It can be very damaging for children to be wrongly diagnosed as having hemiplegia, and for this to be changed at a later date. However, children may be denied certain services without a clear diagnosis of hemiplegia. The concept of functional need in defining services, which has been used in recent years, especially by health and education, may be a useful approach in cases where the diagnosis is uncertain.
Children with hemiplegia tend to receive information about their condition on a piecemeal basis. What they are told is likely to depend on their age, the severity of their disability and their cognitive abilities and emotional status.
Clinical experience and parent reports suggest that children with hemiplegia who adjusted well were satisfied by relatively simple explanations of their condition when they were young. They favoured straightforward information, for example being told that their brains worked a little bit differently and that messages do not get through to certain parts of their body. Most children did not want complex information about the area of the brain affected or what had happened to them in the past. They were more interested in their future prospects.
It is important that when the child is older they are told directly about their condition and have the opportunity to ask questions. Many adults with hemiplegia have never had this opportunity and are consequently worried and anxious.
According to one parent of a child with hemiplegia, “The way you accept and the way you begin to deal with the situation starts with those first words that you hear”.
People may react in different ways to being told that their child has hemiplegia. Many parents report that it is initially like receiving a death sentence before they have time to adjust to the news and its implications.
Most parents of a disabled child will mourn the child they might have had, but at the same time they adjust to living with their ‘different’ child. Having a disabled child does not usually fit in with the view parents may hold of themselves or of the world. Their views have to change if the family is to adjust to new roles and responsibilities.
Bereavement analysis proposes four stages for adjustment:
In reality, parents are likely to slip in and out of these stages at different times. However, they provide a useful framework within which both professionals and parents can work.
Give careful thought to all aspects of the way in which parents are told that their child has hemiplegia:
Anyone giving the parents a diagnosis of hemiplegia should have received appropriate training in this.
If you’re in no doubt about the condition, communicate the diagnosis of hemiplegia to parents as early and clearly as possible.
If you are uncertain 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. You should always offer parents further appointments to discuss the diagnosis and implications for their family. Parents also need ongoing support and to be able to ask further questions that may arise.
Discuss the child’s strengths and weaknesses, if known, with the parents, stressing that each child with hemiplegia is a unique individual with their own potential. Although the child’s disabilities need to be addressed, encourage the parents 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.
It’s advisable that a person known to the parents is present when giving diagnosis, 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.
Give the parents written information about the diagnosis and prognosis, as discussed in the meeting, as soon as possible after each visit.
A child with hemiplegia should be given appropriate information when they ask questions.
It’s important to consider psychological support for adolescents with hemiplegia to support them in their transition to adulthood.
It can be helpful for parents to meet other people in the same situation. Find out more about parent support groups. We run an active Facebook community for parents whose children have hemiplegia, and adults too.