Research on growing up with a parent with HD in Norway

From 2018 to 2023, a national research initiative in Norway examined the current and past experiences of children growing up with parents affected by Huntington’s disease (HD). This project produced five qualitative studies, detailed below with links to access the papers.

Kjoelaas, S., Tillerås, K. H., & Feragen, K. B. (2020). The ripple effect: A qualitative overview of challenges when growing up in families affected by Huntington’s disease. Journal of Huntington's disease, 9(2), 129-141. https://doi.org/10.3233/jhd-190377

Tillerås, K. H., Kjoelaas, S. H., Dramstad, E., Feragen, K. B., & von der Lippe, C. (2020). Psychological reactions to predictive genetic testing for Huntington’s disease: A qualitative study. Journal of Genetic Counseling, 29(6), 1093-1105. https://doi.org/10.1002/jgc4.1245

Kjoelaas, S., Jensen, T. K., & Feragen, K. B. (2022). ‘I knew it wasn’t normal, I just didn’t know what to do about it’: adversity and caregiver support when growing up in a family with Huntington’s disease. Psychology & Health, 37(2), 211-229. https://doi.org/10.1080/08870446.2021.1907387

Kjoelaas, S., Jensen, T. K., & Feragen, K. B. (2022). Dilemmas when talking about Huntington's disease: A qualitative study of offspring and caregiver experiences in Norway. Journal of Genetic Counseling, 31(6), 1349-1362. https://doi.org/10.1002/jgc4.1610

Kjoelaas, S., Feragen, K. B., & Jensen, T. K. (2022). Social support experiences when growing up with a parent with Huntington’s disease. Health Psychology and Behavioral Medicine, 10(1), 655-675. https://doi.org/10.1080/21642850.2022.2104286