Part I: Camp Overview
Introduction
In 1993, members of the Wellington Huntington's Disease
Association agreed that it would be a good idea to run camps for young people from
families with Huntington's Disease. With the encouragement of parents, the Association
organised the first camp over a long weekend in January 1994. A six-day camp was held in
1995 and a four-day camp in 1996. Another camp will be held in April 1997.
All three camps have had the following objectives:
- to enable young people from families with Huntington's
Disease to meet others in similar circumstances
- to enable young people to share information and experiences
about Huntington's Disease
- to encourage young people to support each other and by doing
so, to develop a mutual support network
- to have fun.
Each camp has included a range of outdoor activities as
well as discussion groups run by an experienced counsellor/facilitator. Some camps have
had visits from speakers who have talked to young people about various aspects of the
disease.
In 1996, the Association decided to review the camps to see
whether the children and their parents find them of value and to identify any positive or
negative effects.
Aims of the review
The aims of the review were to:
- describe young people’s feelings about the camps
- identify any benefits the young people have gained from
attending the camps
- identify any adverse effects the young people have
experienced from attending the camps
- explore parents’ or caregivers’ perceptions of the
advantages and disadvantages of the camps
- discuss practical issues associated with the camps.
Who took part in the review
Participants in the camps came from all over New Zealand,
including Auckland, Hamilton, Wanganui, Wellington, Nelson, Ashburton, Greymouth and
Invercargill. Numbers attending each of the camps varied, with the second camp being the
largest:
Camp one 18 participants ranging in age from 6 to 16,
including four family groups
Camp two 34 participants ranging in age from 6 to 16,
including nine family groups
Camp three 21 participants ranging in age from 8 to 18,
including four family groups
Altogether 37 young people from 23 families have attended
at least one of the three camps and most have attended more than one.
All 37 young people and their parents or caregivers were
invited to take part in the survey.
Interviews were completed with 22 children and 16 parents
or caregivers from 16 families, that is, with 60% of the young people and 70% of parents.
One family with three children had moved to Australia; two families did not want to take
part and four families could not be contacted. (The interviews took place over the summer
holidays and some children or families were away during that time). Ten young people and
their parents were interviewed in person; the remainder were interviewed by telephone
because they lived too far away to visit.
The young people interviewed included 13 girls and 9 boys.
As 20 girls and 17 boys have attended the camps, girls are over-represented in the sample.
The ages of the young people at the time of interview
ranged from 9 to 19. All would have been younger when they first began attending camps.
Age at time of interview
| Age |
No. |
| 9 |
1 |
| 11 |
1 |
| 12 |
2 |
| 13 |
3 |
| 14 |
2 |
| 15 |
5 |
| 16 |
5 |
| 17 |
2 |
| 19 |
1 |
Fifteen of the 22 had a parent or step-parent with
the disease; 7 had a grandparent with Huntington’s. All but two of the children are
at risk of the disease themselves.
Eleven female and five male parents or caregivers were
interviewed; six were in their 30s, eight in their 40s and one each in their 50s and 60s.
Four parents are at risk of or have been diagnosed with the disease, 12 are not at risk.
This report looks first at the young people’s
experience, then at their parents’ responses. It concludes with a discussion of the
camps and where the camps might go in the future.
Part II : The Young People’s 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
second camp.
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 unsure
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 didn’t 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
boy said:
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:
I didn’t 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 I’d 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:
I learned so much from that camp, I didn’t
want to go home, I was crying. I wouldn’t have known anything if it hadn’t been
for that. Dad kept it secret till I was 15. I didn’t know anyone else who had it. My
brother never went [to a camp], I was able to tell him stuff (he’s 21). I was able to
talk to other people whose Mum was at a more advanced stage - I learned heaps about what
it’s going to be like.
A 16 year-old girl made a similar comment:
I did learn more about Huntington's Disease - before I
went I didn’t really know about it and thought I was alone, I learned about the
different stages and what was going to happen.
Even the youngest person interviewed found the information
helpful:
I learned more about HD - that you can’t have all
the opportunities in life. I learned that sometimes Dad keeps doing things and you want to
shout but you can’t. He can’t help getting frustrated. I’ve 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
attend.)
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
experience challenging:
I have more understanding but it’s 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 grandparent’s 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 didn’t 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 it’s 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 didn’t 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
received.
One 16 year-old boy commented that the camp was:
Comforting, but it hasn’t made a big difference to
how I get on with my father. I’ve always got on well with him. It helped me cope with
the disease. I don’t feel angry about it, there’s no point.
A 17 year-old girl said:
It’s 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.
A 16 year-old boy said the camps had helped him on an
everyday basis:
It didn’t 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 that’s 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 - ‘it’s 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 friend’s Mum died of
cancer; another friend’s Mum also died so now we’re like a little club. They all
know about Mum’s condition. I think it’s going to help me in the long run.
I’m really factual about it, they’re not and now one’s 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.
‘That’s hard on my friends, I’m 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 people’s response to being at
risk:
After the camp I was quite upset about being at risk - I
kept a diary for about a year but now I don’t really think about it. You don’t
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 I’m going to support myself. I
don’t want to be a burden to anyone. I don’t want to live like that but I
haven’t made any specific plans.
Two 15 year-old girls commented:
We talked about being at risk - I don’t worry
because Dad’s old and he hasn’t got it yet.
I feel OK about it. Dad hasn’t taken the test so I
don’t 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
boys.
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 can’t 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 don’t feel very happy about being at risk -
it’s 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:
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. It’s
made me feel differently - I always wanted kids. Now I think if I had kids I don’t
want them to go through what my parents did. Sometimes I think, why have a career and do
all that, there’s no point. I’d rather travel so I’m thinking about that
now.
A 14 year-old girl was philosophical:
It made me feel better about being at risk myself, it
doesn’t scare me. If I get it, I do. I will worry about that when I’m 18.
It’s not really in my life at present. I thought if I do get it I’ll 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
former life.
I felt better about being at risk. It didn’t
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 I’ve relaxed
because it’s 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:
Really good support, OK to have heart to hearts with
everyone.
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 it’s all
about. We keep in close touch.
Knowing about Huntington's Disease
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.
Hiding it from people makes it harder to take - like
basically tell the truth, especially if it’s their parent who’s got it and
especially if they’ve got symptoms.
Three people qualified their comments:
Being told you’re 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 don’t
need to know - it depends on the symptoms and on the child.
Tell them when they’re 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 "you’d 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 don’t want to go horse-riding or to Pizza Hut. I
want more time to talk rather than doing things. We went to somebody’s 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
person said
I would like local things, we don't really have them. I
wouldn’t go without knowing anyone - at the picnics they do have you stay with your
family.
I would like local activities. I think there are about
11 families here but I don’t know them. I don’t mind what we do.
Age-mixing
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.
Discussion time
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
accommodate that:
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. You’re 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.
Free time
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.
Activities
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:
I’m 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 wouldn’t. I might want to leave if I saw a 15
year-old girl with Huntington's Disease. I wouldn’t 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.
Dislikes
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
early.
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.’
Good Things
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, it’s
the people and how well they get along, talking and comparing my own situation. I learned
what to expect in the future, like one child’s mother was in a wheelchair. My mother
wasn’t then but now she’s finding it hard to hold drinks and do things for
herself.
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 don’t see them very often. The
activities are special as well - you’re lucky if you get to do them I feel we’re
lucky kids.
The social worker who organised the three camps was much
appreciated by the young people. They described her as ‘a legend, she’s awesome,
I trusted her, she’s 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
again’.
A comment from a 17 year-old girl summed up people’s
feelings about the camps when she described the best thing as:
The whole thing - this great big bond, all the support, I
don’t feel alone.
Part III : Parents’ or Caregivers’ Views ]
Sixteen parents from 10 families were interviewed. They
included 10 mothers, 5 fathers and one other caregiver. Four were at risk of or had the
disease themselves; 12 were not at risk.
Their children had attended:
One camp 3
Two camps 6
Three camps 7
Total 16
Giving permission
Eleven of the 16 parents suggested that their child go to
the camp; in four cases the suggestion came from the child and one was a mutual decision.
The parents were very keen for their children to learn more about Huntington's Disease,
particularly from people who knew what they were talking about and could give the children
accurate information. One man whose wife had the disease:
Thought it was a good idea to bring it into the
open. We hadn’t talked about it much. I jumped at the chance for someone else to
explain. When the opportunity came up it was perfect - I had my head in the sand a bit
which was a mistake. I had no reservations but they were apprehensive about the unknown,
they didn’t know anyone. The second year they just couldn’t wait to go, and the
third year we couldn’t afford it.
They were also eager for their children to meet others in
the same situation.
I thought it would be good for her to be with other
people in the same situation. She was willing to go rather than keen but got a lot out of
it. I was probably keener than she was. I had no real reservations. I wasn’t really
too worried about anything.
Two parents had some reservations at first about what the
children might learn but were prepared to deal with the consequences. In one case the
father had been diagnosed with the disease and the mother decided that as they were
getting older, the children needed to know about Huntington's Disease. Another worried
what he might be getting into:
But talking to Dorothy fills me with confidence and they
came back so happy I knew it was right.
Others had what one described as ‘the usual mother
worries’ about their children being away from home for the first time, travelling on
a plane or doing some of the activities rather than any concerns about Huntington's
Disease itself. At the same time, every parent thought the children would be safe and well
cared for.
Although three parents noticed little change in their
children after the camps, others said they noticed a considerable difference, with the
first camp having a greater impact than later ones, generally because the children learned
more at the first camp. Two parents’ comments were typical:
They were a lot different when they came back - helpful.
They had learned so much about it. I noticed more difference from the first one. Last year
they really enjoyed it as well, it’s just that they knew more.
Noticed a huge difference- the first time it took a few
days to get out what they’d received from it; the second trip up they came back full
of confidence.
One parent found it ‘scary’ when her children
came back from the first camp:
They came back with all the questions and we were not sure
that we had all the answers; they wanted their father to take the test but it was his
decision; later ones were OK.
Arrangements, activities and discussions
All parents said they had enough information before and
after the camps and thought the camps were well-organised. One would like to know who will
be attending the next camp but only to help with transport arrangements.
All the parents approved of both the activities at the camp
and the discussions. One commented that it was good for the young people to try different
activities and while one mother worried about ‘things like abseiling’, she added
that she knew her child was in capable hands.
Parents were generally enthusiastic about the discussions,
adding remarks like ‘the more they know the better’, ‘I wanted the
discussions’, and ‘she realised she is not alone, she used to feel alone’.
One admitted she did not know much about the discussions but trusted Dorothy (the
organiser) to do the right thing and put the right knowledge across. Another approved of
the fact that the young people could write questions down on paper if they were shy.
Knowing about Huntington's Disease
All the parents interviewed were very comfortable with
their children knowing about Huntington's Disease. One reiterated that it was far better
to know than not know; another said, rather ruefully, that although she was very
comfortable with her children knowing about Huntington's Disease there were times when she
wished that ‘we all didn’t know.’
All parents said their children learned more about
Huntington's Disease at the camps and were comfortable with that knowledge. Even those
young people who knew quite a lot before they went learned more or had their knowledge
confirmed and expanded. One father appreciated the fact that women were involved in the
camp:
I have been feeding it into her slowly, on demand. She
came back reinforced with what I’d been saying, and looked at it from a different
light. It is good that they teach the girls about birth and reproduction and that they can
test the foetus. She appreciated that.
Eight parents said their children did not change their
behaviour either generally or in relation to their family member after going to the camps.
Four said their child or children had always been
supportive and related well to that person. That behaviour did not change.
Two said their children were not living with or living
close to a family member with Huntington's Disease and so did not have any particular
reason to change their behaviour.
The children from two families continued to relate to their
family members as they had done before. One, whose mother has the disease, did not talk to
her much before the camps because conversation is difficult and that has stayed the same.
The other ‘learned a lot but seems to have put it aside. He judges his father as a
normal person. He gets the brunt of his father’s anger and doesn’t know to keep
quiet. The effects of the camp didn’t last."
The other eight parents or caregivers said their children
had become more understanding, more supportive and better able to cope, particularly with
a parent’s or grandparent’s anger. One gave an example of a practical change:
They have been more positive and supportive. We have
only known for a few years that it is in the family. On one occasion my daughter [aged 15]
was able to calm down her grandfather when the police were hassling him and threatening to
arrest him. He got very stroppy and she talked to him and settled him down. It was very
brave.
No parents or caregivers reported any negative outcomes as
a result of young people attending the camps, although they acknowledged that their
children could experience both sadness and anger.
She has been angry about the Huntington's Disease in the
past but not to do with camps.
When they’re down about other things the anger comes
up about Huntington's Disease, it’s like the last straw. At the camp he found out
about other people’s mothers - it’s pretty scary stiff, great that it’s all
talked about.
One parent described the experiences of two of her
children. Both experiences were related to the camps, but she did see them as negative
outcomes . In fact, she believed that attending the camps had helped her children deal
with the experiences and with their own feelings about the disease.
After the last camp my son got very depressed, which
matched what was happening with his father. It set him thinking, maybe it hit home.
It’s hard to deal with, I don’t have the answers. I try to remind them it’s
50/50. He had very bad dreams about dying, either him or Dad. Something had hit him. He
talked about it and once he did that, he climbed back out of that again. We concentrated
on the fact that I’m here and he’ll be OK. It’s a fact that Dad is dying
but we don’t know that for the children.
When my daughter heard that one of the others had a
positive result that hit her in the face. She went on for a week or two then she came into
my bed and cried and cried. She wanted to help, to fix it. In that situation, you also
want to save yourself. Especially for teenage kids, there’s a lot to cope with anyway
and it’s a lot on top. You want to do for the other person what you’d like to
happen for yourself.
The camps themselves
Twelve of the 16 parents thought the camps should be help
once a year; two would like them more often, to give both the children and themselves a
break. Two thought the timing should depend on the numbers and the age mix, or on
children’s needs. Parents were very aware of the cost of the camps and recognised the
demands of organising them. At the same time one noted that once a year is preferable to
allow the young people to keep in touch. ‘Once every two years is too long when
you’re young.’ One parent commented:
Once a year might be too much - we have to deal with
Huntington's Disease every day and you, can get sick of it. For those for whom it is the
highlight of the year you need to have it once a year but not all of them need that.
All thought the camps should be national rather than having
separate camps for the North and South Island. All but three agreed with the current
system of mixing the age groups. The three suggested that the older children could have
some separate activities either as part of the camp or as a separate event.
While most parents from out of Wellington wanted local
activities for young people they acknowledged that these are hard to organise. One parent
suggested that activities need to be organised by someone not directly involved with
Huntington's Disease.
It is hard to get back-up for local activities.
Huntington's Disease is very emotional. People say ‘Yes, yes’ then something
happens and they want nothing to do with it. You need someone else to do the arrangements,
it can all be too close to home.
Wellington parents were very appreciative of the local
activities; some in other areas wanted to hear about activities in Wellington on the
off-chance that they may be able to attend. They stressed that the children ‘need to
have time to talk and enough space in between for things to happen.’
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
underestimated.
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,
we’ll get |