Siri Hagen Kjoelaas
PhD Research Project
The PhD-project «Growing up in the shadow of Huntington’s Disease (HD)» aims to explore the experiences of individuals with previous or current experience of growing up in a family where a parent has/ had HD. The research aims to enhance knowledge and understanding of an under-researched, but clinically important field. Knowledge generated through the project will provide the foundation for the development of guidelines to parents and local care providers responsible for the follow up of families affected by HD. The research includes the qualitative investigation of the following issues:
- How do young people and adults describe growing up in a family where one of the parents has/had HD? What are/were their emotional, psychological, and everyday experiences? What is/was helpful and supportive for them?
- How were participants informed about the disease and its consequences during childhood? What are their current reflections regarding the balance between openness about the disease and potential wishes to withhold information about genetic risk?
- What adverse experience do the participants describe and how did they cope with these?
- Developmental psychology
- Children as carers
- Rare disorders
- Huntington’s disease
- Mental health
- Qualitative research
- Quantitative research
- 2019-: PhD Candidate, Institute of Psychology, Oslo University and Centre for Rare Disorders, Oslo University Hospital
- 2014-2016: Master of Clinical and Health Psychology, Eötvös Loránd University, Budapest
- 2009-2013: Bachelor of Psychology with Honours, Griffith University, Australia
- Project manager and supervisor: Kristin Billaud Feragen (SSD)
- Supervisor: Tine Jensen (UiO & NKVTS)
Funding and collaboration
The research is conducted at the Centre for rare disorders, Oslo University Hospital in collaboration with the Norwegian Association for Huntington's Disease. Funding is provided by Stiftelsen Dam.Error when retrieving publications from Cristin