Part I : Camp Overview

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.

• 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

• 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.

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.