Health information for people with intellectual disabilities Version 1
Research type
Research Study
Full title
Easy Read health information for people with intellectual disabilities: an investigation of views and practices of service users and carers
IRAS ID
155319
Contact name
Deborah Chinn
Contact email
Sponsor organisation
King's College London, Florence Nightingale School of Nursing and Midwifery
Research summary
People with intellectual disabilities experience worse health than others in the population. Whilst some conditions associated with intellectual disabilities are associated with health risks, in many cases such health disparities are preventable. There is increasing acknowledgement that people with intellectual disabilities and their carers should be offered health information and opportunities for decision-making about their health in formats that they can understand and engage with in order to reduce these health inequalities. Consequently, healthcare providers increasing use adapted health information using an "Easy Read" format, with simple language, pictures and symbols. Although in widespread use, there has been very little research to investigate how this health information is evaluated by people with intellectual disabilities and their carers, and to explore the literacy practices employed in its use.
The aim of this study, which is being funded by the National Institute of Health Research, is to bring together people with intellectual disabilities in focus groups to review and evaluate a range of Easy Read health information dealing with health conditions and health promotion activities relevant to this group. The groups will be videotaped to capture not only the discussion, but also how individual and group literacy practices are employed in engagement with the health information materials. Similar groups will be convened for carers and two final sessions will bring people with intellectual disabilities and carers together to compare their evaluations and observe shared literacy practices. A subset of health information materials will be selected by the groups to be used in the next phase of the project, which will examine how health information is shared with people with intellectual disabilities and their carers in the course of actual health consultations.
REC name
Social Care REC
REC reference
14/IEC08/1001
Date of REC Opinion
19 Aug 2014
REC opinion
Further Information Favourable Opinion