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When and how parents should tell their child and their other children about the child's diagnosed condition was discussed by two paediatric psychologists at Great Ormond Street Hospital for Children. Tanya Collin-Histed reports:
The clinical trial of Zavesca for children with neuronopathic Gaucher Disease has enabled their families to get together on a regular basis. This has unearthed several issues including how and when parents should tell their child, and their other children, about the condition. Elin Davies-Pope, the Clinical Research Nurse supporting the trial at Great Ormond Street Hospital, has worked with the families to help them address these challenges through access to information and support.
On Saturday 17 April 2004 seven families with children suffering from neuronopathic Gauchers disease travelled to London to the Institute of Child Health at Great Ormond Street for a morning with Emma Worwood and Alex Divac, two Paediatric Psychologists. Emma Worwood works with the Metabolic unit at Great Ormond Street Hospital and already knows some of the families and Alex Divac works with infectious diseases and family services.
The informal two hour session started with each person introducing themselves, stating the age of their children and identifying their concerns. The ages of the affected children ranged from two to nine years with brothers and sisters both younger and older than the affected child.
Some of the families had received a fairly new diagnosis for their child while others had heard the diagnosis over eight years ago. It was important to identify at what stage the families were because their experience, and the level of information disclosed to their child, might differ greatly. Key concerns raised by the group included: starting school and sharing information, how to communicate with your child about their illness and how to answer questions such as: Why am I different? Sibling rivalry, hormonal changes, and positive thinking were other topics but could not be discussed due to lack of time.
Patterns of Disclosing
The initial part of the session looked at patterns of disclosing. Experience shows there are basically three stages: Total secrecy: predominately for very young children. Partial disclosure: this should be appropriate to the age and understanding of the child. Full disclosure for older children of say 12 years and over.
Alex Divac told the group that existing good practice promotes on-going sharing of truthful, developmentally appropriate, information about the condition. It enables children to make sense of their experience, take some control and in doing this they may cope better. Psychologically it may bring positive health benefits when the parent and child can be less stressed or anxious about things.
Clinical experience shows that parents tend to delay talking about the condition because they are worried the child will become upset, difficult to manage or concerned about the future. They also worry that it might have a negative effect on their relationship by causing resentment and anger.
By using the partial disclosure approach, parents can convey information over a period of time and as and when specific events occur. Hopefully the child will build up a knowledge and understanding of the condition in their own time at their own pace.
How to Talk to your Children
Ideas on how to talk to children: Check what the child already knows about health and illness. For example: What do you think these medicines are for? Why do you think they need to take blood samples? Use natural opportunities to talk, eg if illness or health is mentioned on TV or in a book. Do not ignore a child's questions. Be curious about their questions.
Ask: 'What did you mean by this?' 'Why did you ask about this?' 'Do you often think about that?' Make information short and use child's language If unable to answer a question, write it down and together think how you might find the answer.
In telling a child about their condition, it is important to take time to think about the impact of this information on them and to check how much they have understood by asking them to explain it back to you and to consider how they will use this information with others. Identify resources, such as books, pictures, drawing, play, video-tapes, that may be helpful to parents or other carers and their children.
After starting this process, parents may feel more ready to answer their children's questions and be aware of the reasons why their child is asking and what it is that they want to know. Sometimes parents go into long explanations when actually all the child wants is a simple answer. When asked a question, start off by giving a small piece of information and see what their response is. This will then help identify the next step.
It's important to help children manage their feelings. If they get upset when some information is shared, it doesn't mean that they didn't want to know. What is said will depend on lots of things including:
Understanding and Outlook
The next part of the session looked at a child's understanding of illness from a developmental point of view, that is, what do children of different ages and stages understand about illness. This can provide parents with information on how and what to disclose:
Pre-School, up to 4 years old: At this stage children's understanding of the causes of illness are quite vague and rather magical. They can understand very simple explanations of how the body works eg taking your medicines helps you stay strong and they gain knowledge through direct experience, eg I am going to the doctor because I keep getting a cough.
Primary school, 5- 9 years old: At this stage logical reasoning skills are developing. Children can understand external causes, are more interested in the body, illness and require more specific information such as some-thing is wrong with their blood. They can also make links between being ill and having treatment, eg you are having a blood test today to see if the medicines are working.
Older Children: They are able to understand different and multiple causes of illnesses, for example, environmental factors and individual vulnerability. They can incorporate ideas about prevention such as the impact of stress.
Resources available for parents Several books and leaflets were shown to everyone to see their content, structure, use of pictures and words.
Protectors A last message for the day was that children act as protectors for their parents and if they think that a parent is sad, upset or worried, then they won't talk about things. It is therefore imperative that parents plan, take things slowly, disclose information in small parts, let the child lead the conversation to avoid too much or the wrong type of information being told and seek support from professionals and other families if needed.
Elin provided a play session for the children when several of the older ones wrote stories and drew pictures of how they feel having Gauchers disease. These will be included in a children's book that Elin is preparing on Gauchers disease. It was then off to Pizza Express for a well earned lunch.
Elin acknowledged that the day was supported by an educational grant from Actelion Pharmaceuticals UK Ltd to Great Ormond Street Hospital for Children.
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Source: Gauchers News October 2004.
© Copyright Gauchers Association 2004.