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.

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.

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 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.

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.’