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| What's it like for Children and Y.P |
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The children and young people that we work with can face enormous challenges; these are some of the specific issues that have been identified from practice and from research literature: 1. Having to cope with a symptomatic parent’s behaviour changes which can be very difficult for a child or teenager to understand. 2. Dealing with ongoing loss; this may be the eventual death of a parent, but can equally be the loss of who a parent was when they were well as people with HD can undergo profound personality changes. 3. Knowing that something is wrong with a parent, but not having been told (enough), or having misinformation about HD, which may lead to huge anxiety for the child. 4. Problems getting access to accurate and age appropriate information. 5. Living in a family where the illness is dealt with in mainly negative ways (sometimes resulting in alcohol and drug misuse). 6. Not being adequately parented (particularly where the symptomatic parent is also a lone parent, or where the other parent has health problems too). 7. Family breakdown - many relationships (70%) break down under the strain brought about by the illness resulting in family break up. 8. Living ‘at risk’ of inheriting the disease which creates a significant psychological burden. 9. Having to make a decision about whether to have the genetic test for the gene that causes Huntington’s disease, or not (although this cannot be taken until someone is 18 - see our Young Adult section for more information). 10. Becoming a young carer which may in turn affect: a. School life/performance b. Free time to meet friends and do ‘normal’ things c. Many young caregivers assume a level of responsibility far greater than their peers. d. Some young people can feel very burdened by their caring role. e. Some young people become the lynchpin in maintaining family life. f. Young people living in lone parent families are significantly more vulnerable to adverse psychological effects. 11. There is some evidence that attachment formation between a parent with Huntington’s disease and their child may be impaired resulting in emotional and mental health difficulties. 12. Feeling embarrassed and/or different from everyone else. 13. Some YP experience considerable social isolation, which may be compounded by a fear of alerting professionals. 14. Being stigmatised by neighbours or the wider community. 15. Some children may experience emotional neglect or physical abuse. 16. Having to explain to friends, teachers or other professional staff about the disease and how it affects people. 17. Some children live in a family where a brother or sister has Juvenile Huntington’s disease. Nevertheless, recent studies and SHA experience suggest that young people’s experiences of growing up in a family with HD can be extremely variable. While some may cope, others experience considerable problems and are at risk of physical and/or emotional harm, and in some cases are in need of Child Protection interventions. For more information see: Forrest Keenan K, Miedzybrodzka Z, van Teijlingen E, McKee L,Simpson SA.
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