Young People Living at Risk of Huntington’s Disease: The Lived Experience

Article type: Research Article

Authors: Lewit-Mendes, Miranda F.^{a; b} | Lowe, Georgia C.^a | Lewis, Sharon^{a; c} | Corben, Louise A.^{a; b; c} | Delatycki, Martin B.^{a; b; c; d; *}

Affiliations: [a] Murdoch Children’s Research Institute, Royal Children’s Hospital, Parkville, VIC, Australia | [b] School of Psychological Sciences, Monash University, Clayton, VIC, Australia | [c] Department of Paediatrics, University of Melbourne, Parkville, VIC, Australia | [d] Victorian Clinical Genetics Services, Royal Children’s Hospital, Parkville, VIC, Australia

Correspondence: [*] Correspondence to: Professor Martin Delatycki, Murdoch Children’s Research Institute, Flemington Road, Parkville, 3052, VIC, Australia. Tel.: +61 3 8341 6290; Fax: +61 3 8341 6390; E-mail: martin.delatycki@vcgs.org.au.

Abstract: Background:For young people in families with Huntington’s disease (HD) the challenge of having an affected family member (AFM) compounds challenges related to being at risk of HD themselves. Objective:This study aimed to quantitatively examine the experiences of young people in families with HD, adding to existing qualitative studies regarding teenagers and young adults in families with HD. Methods:The experiences of young people with living in a family with HD were captured by an online anonymous questionnaire, available worldwide through the Huntington’s Disease Youth Organization. The questionnaire contained mostly forced choice questions. Results:Most participants (n = 84/101, 83.2%) provide assistance to an AFM and 46.4% (n = 39/84) wish they didn’t have to look after their AFM. Many participants (n = 64/78, 82.1%) reported feeling anxious about being at risk; 64.9% (n = 50/77) agreed it is a barrier in their life. Over one third (n = 29/76, 38.2%) of participants disagreed that they have support in relation to being at risk, despite 85.5% (n = 65/76) agreeing it is important to have support and ongoing follow up. Conclusions:Young people in families with HD endure considerable emotional, social and practical burden secondary to having an AFM and being at risk themselves. Without increased support and services, the effects of being a young caregiver and living at risk are likely to have long term impacts on the well-being of these young people.

Keywords: Huntington’s disease, young people, predictive genetic testing, quantitative research, young carers

DOI: 10.3233/JHD-180308

Journal: Journal of Huntington's Disease, vol. 7, no. 4, pp. 391-402, 2018