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
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:
They were also eager for their children to meet others in
the same situation.
Thought it was a good idea to bring it into the
open. We hadnt 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 didnt know anyone. The second year they just couldnt wait to go, and the
third year we couldnt afford it.
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 wasnt 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
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:
One parent found it scary when her children
came back from the first camp:
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, its just that they knew more.
Noticed a huge difference- the first time it took a few days to get out what
theyd received from it; the second trip up they came back full of
Arrangements, activities and discussions
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.
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 didnt 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
I have been feeding it into her slowly, on demand. She
came back reinforced with what Id 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 fathers anger and doesnt know to keep
quiet. The effects of the camp didnt last."
The other eight parents or caregivers said their children
had become more understanding, more supportive and better able to cope, particularly with
a parents or grandparents 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
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 theyre down about other things the anger comes
up about Huntington's Disease, its like the last straw. At the camp he found out
about other peoples mothers - its pretty scary stiff, great that its all
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.
The camps themselves
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.
Its hard to deal with, I dont have the answers. I try to remind them its
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 Im here and hell be OK. Its a fact that Dad is dying
but we dont 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, theres a lot to cope with anyway
and its a lot on top. You want to do for the other person what youd like to
happen for yourself.
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
childrens 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
youre 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
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.
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