A study that will help to inform a Clinical Psychology Doctoral Thesis on how individuals navigate the changes in demands and roles of parenting children and caring for their partner with Huntington's disease over time.
The Journeys of Non-Affected Parents within Families with Huntington’s disease.
Lancaster University
About the study:
This study aims to explore experiences of being a non-affected parent within a family with Huntington's disease. This could include how you navigate parenting your children alongside caring for your partner, any challenges or difficulties you face within these roles, and how this has changed over time.
Lizzie may also ask:
- How you found out about the risk of Huntington's disease within the family
- How you and your partner have managed decisions around having children
- How you both have managed decisions around telling your children about Huntington's disease
You can choose what to share, and can decline to answer any question(s).
Who can take part:
Non-affected parents who have:
- At least one child over the age of 16
- A partner with Huntington’s disease who has been living at home with children (while the children were under the age of 21), and who experiences physical and/or other symptoms of Huntington’s disease impacting on daily life for three or more years.
- This criterion can be retrospective, e.g., your children or partner may no longer live at home, but there was a period of three years when they both did, while your child was under 21, and your partner experienced symptoms of Huntington’s disease.
If you are unsure of your eligibility, please get in touch with Lizzie, and she can provide more details.
How to get involved:
Lizzie will then send across the participant information sheet and consent form.
Then, you will both arrange a convenient date and time for a one-off interview (lasting for 60 – 90 minutes), conducted either on Microsoft Teams or via phone.
Study is open until December 2025
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