Support needs of VHL patients' relatives
Research type
Research Study
Full title
A qualitative study to understand the support needs of family members who support a relative with von Hippel-Lindau Disease
IRAS ID
185757
Contact name
Rachel Price Tate
Contact email
Sponsor organisation
Cardiff Universtiy
Duration of Study in the UK
0 years, 8 months, 19 days
Research summary
This project will explore the impact that supporting an individual with von Hippel-Lindau disease (VHL) has upon their relatives/partners/close friends.
This inherited disease predisposes people to a variety of tumours (both cancerous and benign). It is a complex condition which can affect many different parts of the body and therefore requires significant clinical management and surveillance over a patients' lives. A previous MSc. Genetic Counselling student explored the psychosocial impact of VHL in patients and a recurring theme was the impact it had on those around the patients. This area is yet to be explored specifically and therefore I hope to address this gap in the literature by conducting face-to-face interviews with family/friends of around 6 people with VHL.
Anyone who plays a supportive role in the life of a VHL patient would be eligible for this study. Qualitative interviews will be conducted in participants' homes or within the Institute of Medical Genetics at UHW.
REC name
Wales REC 2
REC reference
15/WA/0443
Date of REC Opinion
18 Dec 2015
REC opinion
Further Information Favourable Opinion