A study exploring the support needs of young adult carers of parents with Huntington’s disease
St George's Hospital/University of Manchester
About the study
This study aims to explore the experiences and support needs of self-reported young adult carers aged 18-25 who provide care, or have recently provided care, for a biological parent diagnosed with Huntington's disease. Interview questions will be geared towards exploring participants' experience of healthcare and other forms of support to gain a deeper understanding of what the perceived gaps in support are with the intention of generating recommendations to improving support for this population group.
Who can take part?
- Currently aged 18 to 25
- Currently reside or have resided in a household with a biological parent affected with Huntington's as an adult
- Reside in England and can access NHS services
- Able to provide informed consent
- Able to communicate in fluent Englis
- Has access to Microsoft teams
How will you take part?
Interested participants should contact the researcher who will provide a patient information sheet and informed consent form. The researcher will then contact the participant to answer any questions and arrange a suitable time for a Microsoft Teams meeting. The interview will be conducted on Microsoft Teams and will take between 45-60 minutes.
This study will close 1 April 2027
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