Communication About HD
Research type
Research Study
Full title
Communication About Huntington’s Disease Between Family and Friends: A Qualitative Investigation of Experiences and Opinions
IRAS ID
212987
Contact name
Rebecca Dimond
Contact email
Sponsor organisation
Cardiff University, Head of Research Governance and Contracts
Clinicaltrials.gov Identifier
Y016458QBE0116A/165, Employer's liability
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
How do carriers or individuals at 50% risk of Huntington’s Disease (HD) communicate this information to their family and friends?
Genetic disorders have implications for many family members, and disclosing a diagnosis or risk can be emotionally and practically challenging for those affected. Research has explored how families communicate about genetic disorders, improving our understanding of this complex process, improving the support healthcare professions can provide patients.
Research within this field regarding HD has focused largely on communication between parents and children, and communication between partners has only been superficially investigated. Although partners of HD patients are not at risk themselves, research shows they are emotionally, physically and practically affected. The minimal existing research suggests communication between partners affects family dynamics and impacts relationships. However, this topic has not been explored thoroughly. This study therefore aims to fill this gap in our understanding by investigating the communication process about HD between partners in more depth, within the context of communication between family and friends.
A qualitative approach will be used; 10-12 semi-structured interviews and thematic analysis will be conducted. Participants will be asymptomatic, or early symptomatic HD patients, individuals at 50% risk of HD, and their partners, recruited via asymptomatic/pre-symptomatic HD clinics in Cardiff. Interviews will last around 1 hour, conducted either in the University Hospital of Wales, Cardiff School of Medicine, or participants’ homes, depending on participant preference. Topics discussed will explore participants’ experiences of communicating about HD, the different aspects of communication, and barriers and facilitators involved. It is hoped that areas where support from healthcare professionals is lacking will be identified, as such knowledge may help to improve the service clinical genetics provides for patients.
This is an MSc Genetic Counselling dissertation project based at Cardiff University, and is funded by the student researcher.
REC name
Wales REC 6
REC reference
16/WA/0305
Date of REC Opinion
9 Nov 2016
REC opinion
Further Information Favourable Opinion