Feasibility & Acceptability of a DLB Support and Information Group v1
Research type
Research Study
Full title
Development and Evaluation of a Lewy Body Disorder Support and Information Group - a feasibility study
IRAS ID
171817
Contact name
John-Paul Taylor
Contact email
Sponsor organisation
NTW NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Many people have never heard of Dementia with Lewy Bodies (also often known as DLB). This can make those who develop the condition and their families feel cut off and low as everyday activities become more difficult. Patients and caregivers have said that they often have insufficient information about the condition and feel under supported. They particularly feel like this when they are first diagnosed.
This study will invite people with DLB to attend a support and information group with a caregiver. The group will run for three successive weeks with each session lasting for two and a half hours. The group will provide information about DLB and some of the particular difficulties, like hallucinations, which may occur. It will offer ways of coping and the opportunity to meet others in a similar situation. The venue will be the memory clinic at Newcastle General Hospital, a familiar environment for many potential participants.The main research question will relate to the feasibility and acceptability of providing this group. To answer this data will be collected on recruitment, retention and attrition rates. People will be interviewed about their experiences of being group members and the different activities that they complete.
One way of coping with a long term condition is to feel more in control or have higher levels of self-efficacy and this will be the theory on which activities are based. People will therefore be asked to complete questionnaires about how much they feel able to cope with having DLB or being a caregiver, and whether there are changes in self-efficacy following attendance.
If people who attend find it beneficial, then a larger study will be conducted. Following this, a training manual and workshops will be developed to train staff in the NHS to hold similar support groups.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
15/NE/0391
Date of REC Opinion
17 Feb 2016
REC opinion
Further Information Favourable Opinion