Aims of the review
Who took part in the review
The Young People's Views
Going to camp
Which camp was best?
Who decided you would go?
Learning about HD
Coping with family members
Friends and teachers
Being at risk
Support from other young people
Knowing about HD
The camps themselves
Parents' or Caregivers' Views
Arrangements, activities and
Knowing about HD
The camps themselves
Part IV: Discussion
Part IV : Discussion
There is no doubt that the camps have met their objectives
and must be judged a success. They are appreciated by young people and parents alike and
have had no negative outcomes.
The review has highlighted a number of issues. One is the
isolation of families with Huntington's Disease. Very few of the young people had others
they could or did talk to about the disease. While girls were more likely than boys to
talk to their friends about it, they commented that even their best friends did not really
understand. Attending the camps not only gave them more information for themselves but
also helped them explain their situation to others.
Their pleasure in finding others in similar circumstances
was obvious. They described the strong bonds that formed between them because of the
particular nature of their shared experience. Parents reinforced the comments young people
made and noted that many of the young people kept in touch with other either on a regular
basis or when a crisis occurred. The importance of this form of mutual support cannot be
The camps gave the young people a sense of specialness
which was highlighted by the remarks of two who described themselves as almost
lucky to have Huntington's Disease in the family so they had the opportunity to
attend and to take part in the activities. The comments were a reminder that Huntington's
Disease families do not always have the resources to offer children opportunities that may
be more freely available to other children.
Both parents and young people appreciated the knowledge the
young people gained about the disease. In some cases young people were able to tell
parents things they did not know, in others they passed on information to older siblings
who had not had the opportunity to attend. Parents appreciated having impartial, trained
facilitators teaching their children. They were confident the information given was
accurate and believed their children were more willing and able to learn in a supportive
and neutral environment.
The children faced the reality of being at risk of the
disease with courage and realism. The camps could not change their situation but they did
offer information and support and kept young people up to date with the latest research on
predictive testing and genetic developments.
The format of the camps needs little modification. More
attention could be paid to catering for the older children within the existing format
rather than having separate events for older and younger children. The timing and length
of discussion groups could also be varied so that there is greater flexibility. The young
people acknowledged that the discussions would inevitably cover familiar ground as new
people came to the camps. Most were tolerant of this. Possibly more use could be made of
their knowledge and experience to create bonds with newcomers.
The overwhelming message of the review was that knowing
about Huntington's Disease is better than not knowing and that children as young as nine
and eleven can cope with the knowledge and gain support from others in a similar
situation. Both parents and young people benefit from the camps. A week a year cannot
solve family problems or change the situation families must deal with on a daily basis.
The camps cannot transform children or change their personalities. They are a support not
a panacea but they are a support that is highly valued by all participants. The last word
should go to a brother and sister who have attended all three camps: If they ever stop,
well get mad.
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