Comunicating Genetic Research in Complex Neurological Diseases
Research type
Research Study
Full title
A qualitative study on health care workers, patients and their families preferences on communication strategies during their participation in genetic research.
IRAS ID
159320
Contact name
Huw Morris
Contact email
Sponsor organisation
Royal Free London NHS Foundation Trust _ Royal Free Hospital
Duration of Study in the UK
1 years, 5 months, 11 days
Research summary
Background: Participants invited to take part in genetic research studies are often introduced to information about genetic inheritance risks that if not explained and managed sensitively and adequately can cause unnecessary anxiety and misunderstandings. Especially when considering neurological disorders that can often have long-term neurodegenerative disease progressions with implications for other family members.
Motivational gap for this research: at present, there are no current guidelines that describe how healthcare professionals should support the communication process with patients invited to take part in genetic research, most of the information comes from the clinical practice of genetic counseling.
Aim: We would like to explore patients’ views on how patients, their families and professionals prefer communication provision during their participation in genetic research. The overall aim of the project is to improve communication skills in explaining complex genetic information and the process of genetic research, tailoring healthcare professionals communication taking into consideration participants point of view and experiences, to improve comprehension so patients and families are better informed and address undue anxieties, ultimately to increase patient participation in research studies.
Technique of research: Participants affected by complex neurological disease (e.g. Parkinson’s and Motor Neurone Disease), their close relatives and healthcare professionals, will be invited to take part in semi-structured interviews. We would like to interview 10-20 people within the UK. Thematic analysis will be performed on transcripts using NVivo, a package which integrates the handling of textual data. A final report with findings and recommendations will be produced.
REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
15/WM/0176
Date of REC Opinion
9 Jun 2015
REC opinion
Further Information Favourable Opinion