A qualitative exploration of apathy in Huntington's disease
Research type
Research Study
Full title
An exploration of the nature and impact of apathy in Huntington’s disease on patients and carers.
IRAS ID
182868
Contact name
Kim Sein
Contact email
Sponsor organisation
University of Hull
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Huntington’s disease (HD) is a progressive disease that causes difficulty moving, thinking, and behaving. Apathy, where patients seem to become distant from those around them and lose interest in the things they usually do, is one of the symptoms that HD seems to cause. Apathy affects patients’ quality of life and is also distressing for the families and carers of people with HD. We do not know enough about apathy from patients’ or carers’ point of view and would like to understand how it affects their lives.
This piece of research therefore aims to ask people what apathy is, how it seems to affect their life, and explore what impact apathy has on the patient and the patient’s family. To do this, we will ask participants to answer a series of questions and record the answers. This method will work better than a method that relies on statistical data as we will be able to get very detailed answers to all of our questions.
We will interview patients and their carers separately and ask them to describe apathy and talk about their experience of apathy. In addition, we will ask patients and carers to complete a series of measures of apathy that are sometimes used in research. We are doing this to see if the questions these measures of apathy ask relate to what it is patients and carers say makes up symptoms of apathy.
All of the interviews will be audio recorded and the recording then written out. Notes will be taken during the administration of the measures. These data will be analysed using a form of qualitative data analysis where the researcher reads through all of the transcripts and finds parts of the data that answer questions about what apathy is and how people explain and understand apathy.REC name
HSC REC B
REC reference
15/NI/0269
Date of REC Opinion
21 Dec 2015
REC opinion
Favourable Opinion