Part II : The Young Peoples Views
Going to camp
Nine young people had attended all three camps.
Nine young people had attended two camps. Five attended the
two most recent camps; four the two earlier camps. The cost of travel meant three of the
four could not attend the last camp; and one person was not living at home at the time of
the latest camp.
Four young people had attended only one camp, two the most
recent one reviewed (1996) and two the year before (1995). The two who first attended in
1996 had only recently learned that Huntington's Disease was in their family. Of the two
who went to the 1995 but not the 1996 camp, both had family commitments at the time of the
All but one of the young people said they would like to go
to another camp if they could; one person who is not at risk of the disease, was
Which camp was best?
Ten of the 18 young people who went to more than one camp
said that although they enjoyed all the camps, the second camp was easier than the first
because they "knew people and what to expect". On the other hand, four enjoyed
the first camp best because they "learned more and met a lot of new people".
Others enjoyed all the camps.
Who decided you would go?
Eighteen of the 22 young people said they had a choice
about whether or not they attended the camps. Two made the decision jointly with their
parents and two said their parents decided they would go to the first camp but they
decided to go back to subsequent camps themselves. One girl, now 17, commented:
I sort of had a choice but really my father chose for
me. I thought it was other people besides Huntington's Disease and didnt want to go
at first but when I was there I met people and really enjoyed it, it was awesome, it
changed my life.
The young people were keen to learn more about Huntington's
Disease. Eleven of the 18 who had a choice about going to the camp said that wanting to
learn more about the disease was one of the main reasons for going. Six mentioned it as
the only reason. The 11 included six girls and five boys aged from 13 to 17. A 14 year-old
boy who has been to all three camps said:
I remember feeling a bit scared. I talked about it with
my Mum and Dad. I did think it was a good idea to learn more about Huntington's Disease,
to know what to expect. Not the camp aspect, although that did sound fun. It was mainly
the Huntington's Disease I wanted to go for.
Eight young people thought the camp sounded fun and were
attracted by the activities. (Three also wanted to learn more about Huntington's Disease.)
Five were aged 14 or under and the group included five boys and three girls. A 16 year-old
I decided jointly with my mother and father (that I
would go), I thought the activities would be really fun.
An 11 year-old girl was told about the camps by her mother
"and when I saw what they did I wanted to go."
The third reason children wanted to go was to meet people
in a similar situation. Seven gave this as one reason why they wanted to go; five of the
seven were girls; the youngest in the group was 13 and the oldest is now 19. Comments from
14 year-old and 16 year-old girls were:
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I didnt really know what Huntington's Disease was
and I wanted to meet other people in the same situation.
I wanted to go. I read about the camp in the newsletter.
I thought Id learn more and meet people.
Learning about Huntington's Disease
All the young people learned more about Huntington's
Disease at the camps. Some already had a reasonable knowledge of the disease, others came
with little information about it or understanding of it. They said they learned about the
various stages of the disease including the emotional aspects and the fact that everybody
is different, as well as the hereditary and genetic aspects of it and what they might
expect in the future.
All appreciated what they had learned, including a 17
year-old girl who said:
A 16 year-old girl made a similar comment:
I learned so much from that camp, I didnt
want to go home, I was crying. I wouldnt have known anything if it hadnt been
for that. Dad kept it secret till I was 15. I didnt know anyone else who had it. My
brother never went [to a camp], I was able to tell him stuff (hes 21). I was able to
talk to other people whose Mum was at a more advanced stage - I learned heaps about what
its going to be like.
Even the youngest person interviewed found the information helpful:
I did learn more about Huntington's Disease - before I
went I didnt really know about it and thought I was alone, I learned about the
different stages and what was going to happen.</p>
I learned more about HD - that you cant have all
the opportunities in life. I learned that sometimes Dad keeps doing things and you want to
shout but you cant. He cant help getting frustrated. Ive learned how to
manage that - I go away.
Several young people commented that they learned more at
the first camp than at subsequent camps, which is understandable. Two said they found the
scientific explanations by the geneticist at the most recent camp difficult to follow.
(Participation in the session was voluntary and a number of younger people did not
The camp also provided the first opportunity for some young
people to see someone with advanced Huntington's Disease when family members visited for
one day. One young man who had little direct experience of Huntington's Disease found the
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I have more understanding but its pretty
frightening. I was pretty worried - a bit for myself, seeing how much you have
to be looked after.
Coping with family members
All the young people interviewed said that they had a
greater understanding of Huntington's Disease from going to the camps. The seven who had a
grandparent with the disease said they understood their grandparents behaviour
better. Those who saw their grandparent regularly coped better.
Fifteen of the young people had a parent or step-parent
with the disease. The mother of two young respondents had died from Huntington's Disease
before they came to the camp. They still found the information helpful:
It was helpful - I didnt understand at all before
I went. I learned how it developed and what happens. It made me feel much better.
They were also aware that they knew more than some of the
other young people at the camp which was sometimes a problem:
[The camp] helped me understand it more, it scared me a
wee bit more, and makes me angry that its there, why me? With the others there, I
felt that I knew what was going to happen to them; it was hard, sometimes there were
things I didnt want to say but I had to because they asked.
Eight of the other 13 young people said that being at the
camp had changed the way they felt about their affected parent, making them more tolerant,
sympathetic or understanding and helping them cope better. Five said the camp made no
difference because they had always got on well with that parent. Neither age nor gender
seemed to make any difference to the way young people responded to the information they
One 16 year-old boy commented that the camp was:
A 17 year-old girl said:
Comforting, but it hasnt made a big difference to
how I get on with my father. Ive always got on well with him. It helped me cope with
the disease. I dont feel angry about it, theres no point.
A 16 year-old boy said the camps had helped him on an
Its really helped me - I think it changed the way I
felt about my mum - you have to do everything for her. It made me more tolerant but
sometimes I lose it.
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It didnt change the way I feel about it although I
got more understanding about it. I cope better with my Dad. We used to have lots of
fights. We still have them but I understand more about them and they taught us how to
cope, like walking away so thats got better.
Friends and teachers
Girls were more likely than boys to have talked to their
friends or teachers about Huntington's Disease. Ten of the 13 girls had talked to friends
but only two of the nine boys had done so.
Very few had talked to teachers although four said their
teachers know that Huntington's Disease was in the family. One person told her science
teacher when the class was doing genetics to make it easier for me.
Both boys and girls who talked to friends said they did not
talk about Huntington's Disease unless the friends asked and in most cases the friends did
not really understand - its not very real to them. One chose to talk to
a friend whose mother has multiple sclerosis. Another compared her own experience with
friends in a similar situation:
All my friends know - my friends Mum died of
cancer; another friends Mum also died so now were like a little club. They all
know about Mums condition. I think its going to help me in the long run.
Im really factual about it, theyre not and now ones into drugs.
Both girls and boys said that going to the camp made it
easier to talk about the disease and to explain it to friends but there lack of experience
was still a barrier to understanding. One had explained to friends that she is at risk.
Thats hard on my friends, Im not sure if they understand it.
Being at risk
Twenty of the 22 children were at risk and one had already
taken the predictive test.
Nine of the 20, including seven girls and two boys aged
between 11 and 17, said they knew they were at risk but rarely thought about it. Some
thought the matter would become more relevant later when they had to make decisions about
their future. A 17 year-old girl was typical of young peoples response to being at
Two 15 year-old girls commented:
After the camp I was quite upset about being at risk - I
kept a diary for about a year but now I dont really think about it. You dont
really look in the future much. You think the worst and hope for the best - lots of
teenagers are like that. It made me think about how Im going to support myself. I
dont want to be a burden to anyone. I dont want to live like that but I
havent made any specific plans.
We talked about being at risk - I dont worry
because Dads old and he hasnt got it yet.
I feel OK about it. Dad hasnt taken the test so I dont worry.
I would take the test if Dad gets it so I would know about having children.
Seven were still unhappy at being at risk, although again
they could do little about it till they became eligible for the test. Even then they were
unsure whether they would take the test or not. These comments are from two 16 year-old
We mostly talked about what HD is and how it affects you
rather than about the predictive test. I thought about the test but I cant take it
for two years. I will have to wait and see how I feel before I decide. I want to do as
much as I can in life, in case
I dont feel very happy about being at risk -
its your whole life being ruined. A doctor came and talked about it. As soon as I
heard about the test I wanted to take it. I want to get it over with and find out. I would
want to know.
Four said the discussions at the camp made them feel better
about being at risk. A 17 year-old girl was typical of other girls who said they would
consider predictive testing should they become pregnant or want to start a family. She
said being at the camp:
A 14 year-old girl was philosophical:
Made me feel better about being at risk. We talked about
the test. I might wait. They told me about the research which made me hopeful. Its
made me feel differently - I always wanted kids. Now I think if I had kids I dont
want them to go through what my parents did. Sometimes I think, why have a career and do
all that, theres no point. Id rather travel so Im thinking about that
It made me feel better about being at risk myself, it
doesnt scare me. If I get it, I do. I will worry about that when Im 18.
Its not really in my life at present. I thought if I do get it Ill deal with
the things I want to do.
None had made any specific plans or done anything
differently as a result of knowing they were at risk. Even the person who had taken the
predictive test had, within a few months of getting the results, settled back into her
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I felt better about being at risk. It didnt
frighten me to know. I did make different decisions at first - I thought about quitting my
job and getting a better paid one and going round the world. But now Ive relaxed
because its hard to get a job - reality gets in the way. I just get on with life.
Support from other young people
All the young people said they got enough support from
others at the camp, and for many , being with others in a similar situation was clearly
the best part. It is hard in a written report to convey their enthusiasm on this topic.
Their comments included:
Knowing about Huntington's Disease
Really good support, OK to have heart to hearts with
Getting support from others was really good. The second
camp was good because I knew everyone - we could just walk in and start talking.
Plenty of support then and since - letters, phone calls and
so on. X is the greatest help, she been through the test, and told me what its all
about. We keep in close touch.
Every one of the 22 young people interviewed was glad they
knew about Huntington's Disease. All said they would rather know than not know. One who
first found out about the disease at 15 thought she should have known much earlier.
They also agreed that children should be told "as soon
as they are old enough to understand." Estimates of when that might be ranged from
five to 13 or 14 but were always at least two years younger than when the young people
themselves had first heard about the disease.
Three people qualified their comments:
Hiding it from people makes it harder to take - like
basically tell the truth, especially if its their parent whos got it and
especially if theyve got symptoms.
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Being told youre at risk might be scary for
younger children - you need to be 13-14 onwards to talk about it
If the parent is not showing symptoms maybe you dont
need to know - it depends on the symptoms and on the child.
Tell them when theyre 13 or 14 when they understand.
I noticed the younger ones handled it really well so you could tell them early. I
guess it depends on the situation.
The camps themselves
All the young people wanted the camps at least once a year
because a larger gap would mean "youd lose touch". Two would like to have
them more often while one thought that if the numbers dropped it would be appropriate to
have them every two years but he hoped that would not happen. All wanted national camps
rather than separate camps for the North and South Islands and none wanted parents to be
involved. They saw the camps as an opportunity for families to have time away from each
other and for young people to have the opportunity to talk freely about things they could
not talk about at home.
Activities between camps
Only the Wellington Huntington's Disease Association offers
activities for young people in between the camps. These have ranged from visits to a fast
food restaurant to sleepovers at a local house. The young people were very positive about
these gatherings and several who lived out of Wellington wanted to hear more about the
Wellington activities in case they were able to attend. While some of the young people
wanted adventure activities like bungy-jumping, others wanted less activity and more time
to talk, particularly during an overnight stay. All wanted some kind of activity in each
of the main school holidays.
I dont want to go horse-riding or to Pizza Hut. I
want more time to talk rather than doing things. We went to somebodys place once and
that was really good - it was casual rather than organised.
All but two of those who lived out of Wellington also
wanted local activities but none had access to them at present. They acknowledged problems
of cost, difficulties in organising activities and shyness as inhibiting factors. As one
I would like local things, we don't really have them. I
wouldnt go without knowing anyone - at the picnics they do have you stay with your
I would like local activities. I think there are about
11 families here but I dont know them. I dont mind what we do.
All but one of the young people wanted the age groups to
remain mixed as they are now. One person, who is now 19, wanted the age groups split, with
separate camps for 10 to 15 year-olds and 16 year-olds and over. Those who supported
age-mixing said it was good to have the younger ones there, even though they could be
annoying at time. They suggested that any problems could be solved by having some split
time within the camp, perhaps including an overnight camp for older children. They also
suggested there could be separate discussion groups:
All in one camp but certain activities for 10 and up and
9 and under; some of the stuff we talk about is pretty scary - intimidating for small
children - you could have some spilt discussion groups
Ages could be split or joined - good to have older ones
for little ones - they were able to support little ones who got upset.
Age mixing was fine and there was an age limit to the
activities we did and separate dormitories. You felt you could be with people you wanted
to be with.
Thirteen of the 22 young people thought the amount of time
they had for discussions was about right; nine thought some of the discussions were too
long. Two girls aged 14 and 15 said that they had learned most of what they needed to know
at the first camp which made later discussions somewhat repetitive but both were happy to
First time was good, the second time there was too much.
I knew most of the stuff but others wanted to learn and I was OK about that. I was happy
to sit and listen
The nine who thought that some of the discussions were too
long included four girls and four boys aged between 11 and 16. All felt that individual
sessions were too long and would have preferred more shorter sessions possibly during the
day rather than in the evening when people are getting tired. A few suggested having more
separate sessions for older children but the youngest person disagreed with this:
There were some things only 10 and up could go to - we
should all have the chance to go to all groups; we listened through the wall. It sounded
interesting. Youre allowed to get up and go if you get bored so it would be OK.
The young people particularly liked being able to ask
questions and to put them in writing so that they are anonymous. They felt they had
plenty of chance to have a say and none could think of any topics they wanted
to talk about that were not covered. Some found the talk by the geneticist at the latest
camp too long and technical but generally the format and content of discussions was
acceptable. Two people specifically said they liked the craft activities such
as building a sculpture or model of a place where they feel safe from
Huntington's Disease but two others said they found these activities boring and unhelpful.
The format of introductions and the counselling
activities caused some comment. Three young people wanted different
introductory games - "we do the same things every year - and they did not want
to have to wear name tags. Others made no comment.
Seventeen young people thought the amount of free time they
had at the camps was about right. They had time to socialise, to prepare skits and to
write their diaries.
Two people thought there was too much free time at the last
camp but that was because there was not a lot to do at the site. They preferred sites with
scope for some leisure activities they organised themselves.
Three would like more free time but did not feel strongly about the issue.
The young people were most enthusiastic about the
activities. Their eyes and voices lit up in discussing these. They were most enthusiastic
about the high adrenalin activities such as bridge-swinging, abseiling and
white water rafting. The latter was especially popular because it meant the whole group
was together having fun. The least popular activity was caving. The young people were
aware that the range of activities depended on the camp site
They preferred outdoor to indoor activities although two 15
and 16 year-old boys were enthusiastic about the video parlour visit. One girl summed up
the group feelings by describing the activities as wicked. Comments from two
boys are typical:
Loved the bridge-swinging, the adrenalin stuff, caving is
boring but I liked rafting - the whole group having fun, I liked the golf, liked different
things each time.
Liked caving and tramping least. The best were the physical
and group activities - rafting, canoeing, bridge-swinging, abseiling. Would like small
overnight camp with a subgroup of the main group.
Only two new activities were suggested - four-wheel
motorbike riding and an overnight camp with small groups of older children.
Child with Huntington's Disease
As part of the interview, the young people were asked how
they would feel about having a child with advanced Huntington's Disease at the camp. Only
one person answered a clear Yes to this question and even those who said they
would not mind were cautious.
Ten of the 22 said they would not mind having a child with
Huntington's Disease at the camp although one added that he had not seen anyone like that.
Two acknowledged that "it would be a bit scary" and a reminder of what could
happen to them
Eleven were unsure or thought the child should not come.
One girl familiar with the advanced stages of the disease said:
Im not sure what I would feel like. Talking about
it is one thing, seeing someone your own age would be the scariest thing. Some people
would be able to handle it, others wouldnt. I might want to leave if I saw a 15
year-old girl with Huntington's Disease. I wouldnt know how I felt till I saw them.
One girl thought the camps were for children at risk and
that having a child already showing symptoms would be too upsetting. Another suggested the
child could visit rather than stay the whole time. It would be difficult to include them
in the activities, although the environment may be supportive.
Very few people had any dislikes about the camps. Three did
not like the food at one particular camp; one did not like having to travel a long
distance to the camp and two of the younger members did not like having to go to bed
One of the 14 year-olds who had been to all three camps had
noticed a difference as the young people became teenagers and the nature of their
relationships changed. Some are more distant now, moving apart and less interested
in Huntington's Disease. He added that the changes were not enough to stop him
looking forward to the next camp. For one girl, the worst thing was going home.
They had few suggestions for improvements. Some would like
the camps held out of the Wellington area, but that would require other Associations to
become involved in the organisation. They generally preferred longer camps with five days
rather than three, even if we only had organised activities on three of the days, we
could spend time round the camp.
The people were clearly the best thing about the camps -
making friends, getting to know people in a similar situation and being able to talk to
people the same age who feel the same way. All the young people mentioned friendships as
one of the best things about the camps. One 15 year-old girl summed up the responses:
The people were the best, not the activities, its
the people and how well they get along, talking and comparing my own situation. I learned
what to expect in the future, like one childs mother was in a wheelchair. My mother
wasnt then but now shes finding it hard to hold drinks and do things for
A 15 year-old boy made a similar comment:
Freely talking about it with the people round, the
openness of it and the activities.
The activities were also popular. Nine people included them
among the best things about the camp. Two of the young people described themselves as
lucky for being able to go to the camps:
Friends from the camp are very different to friends we
have locally. At every other camp you get bored at some point, never at a Huntington's
Disease camp. The people are special, maybe because we dont see them very often. The
activities are special as well - youre lucky if you get to do them I feel were
The social worker who organised the three camps was much
appreciated by the young people. They described her as a legend, shes awesome,
I trusted her, shes a trouper and as really helpful. She gives us a
shoulder to lean on, and helps us try to sort things out ourselves. I want her there
A comment from a 17 year-old girl summed up peoples
feelings about the camps when she described the best thing as:
The whole thing - this great big bond, all the support, I
dont feel alone.
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