A diagnosis of Huntington’s disease (HD) presents numerous and complex challenges, not only for the person diagnosed, but also for their family, in particular their children. The realisation that HD is a genetic condition can present enormous challenges to parents whose natural inclination is always to protect their children. Questions that parents encounter include: How do we tell the children about HD? If so what do we tell them? If not what are the implications and possible long term effects on our children? Whilst dealing with the possible answers to these questions parents can often become overwhelmed.
This paper focuses on the role Huntington’s Victoria (HV) fulfills in working with parents, children and in some cases protective agencies in meeting the needs of children in a HD family who are seeking information about HD. In fulfilling this role, HV has developed a framework for the effective delivery of HD information to children of families with Huntington’s disease when they are not the primary client. The framework outlines the importance of client consent and privacy when providing information on Huntington’s disease therefore allowing children to take control of any conversations with Huntington’s Victoria thus preventing provision of any unsolicited information on Huntington’s disease. Huntington’s Victoria also recognised the importance of conducting any conversations about HD within a secure and familiar environment for the children with the presence of their parents, a guardian, and/or other relevant service that children already trust.
In order to maintain sustainability the provision of information extends beyond the information session and is inclusive of follow up and referral when deemed appropriate.
- Huntington’s disease
- Huntington’s victoria