Assessing Factors and Events that Influence Care Requirements
University of Southampton
About the study
Many long term conditions, such as epilepsy, have an impact on a person’s quality of life. Their need for help and care can change at different times. This might mean that the resources they need to help them are not always available at the right time.
This study will look at the care needs of people with epilepsy, multiple sclerosis, motor neurone disease, Huntington’s disease or Parkinson’s disease. The aim is to find out how to predict what a person’s care needs will be, and at what point. It also aims to identify events that might lead to an unplanned increase in care needs, for example, an unexpected hospital visit.
When will this study be recruiting?
The study is recruiting now, until 30th September 2017.
What will participants be asked to do?
First you will be asked to complete a survey, either online, on paper or over the telephone. This should take less than 30 minutes. The survey asks about the things that you feel increase and decrease the amount of care you, or a person with epilepsy you care for, needs.
The second stage of the research is a focus group. At the end of the survey you will be asked if you would be interested in taking part in the focus group. You can decide to only take part in the survey, without going on to participate in the focus group.
Who can take part?
You can take part if you:
• Live in Hampshire, Dorset, Wiltshire, Isle of Wight, Somerset, Berkshire, Surrey, West Sussex and East Sussex
• Are aged 18 or above
• Have diagnosis of epilepsy or you care for someone with a diagnosis of epilepsy
Who is conducting the research?
This study is being conducted by a research team based at University Hospital Southampton. It is led by Sarah Fearn, a Senior Research Fellow. The chief investigator is Dr Chris Kipps, a consultant neurologist.
Who has reviewed this study?
The University of Southampton Research Governance Office has reviewed the study and granted it ethical approval.
If you would like to find out more about this study and would like to receive a participant information sheet, please contact Sarah Fearn at S.Fearn@soton.ac.uk or call 07393762105.