First National Study of Adults with Learning Difficulties

UK agency BMRB has announced the results of the first ever national survey of adults with learning difficulties. The survey involved innovative techniques to maximise involvement and response rates. BMRB has also announced a new contract to study understanding of medical information.

The survey, conducted for the Health and Social Care Information Centre, focused on the lifestyles, needs and aspirations of people with learning difficulties, as well as the support they receive. The research team also included Central England People First (CEPF) - a self advocacy group run by and for people with learning difficulties - and Professor Eric Emerson of Lancaster University.

The fieldwork, which involved interviews with 2,898 people with learning disabilities aged 16 and over, took place between July 2003 and October 2004. One key challenge was to make the survey as accessible as possible. This involved developing an assessment procedure to determine the ability of each respondent to answer questions consistently. BMRB interviewers were also given the freedom to explain the questions using any means they could - pictures, drawing, and pointing. This means that this survey differs from most quantitative research in not having fixed question wording.

Professor Denise Lievesley, Chief Executive of the Health and Social Care Information Centre says the report brings together information that was previously available only through qualitative research, single topic, or local studies. She states that the results 'highlight the extent of hardship and social exclusion faced by people with learning difficulties in terms of material hardship, employment opportunities and social participation,' and show 'how little control many people with learning difficulties have over important aspects of their lives'.

According to Lievesley: 'This tells us how much more needs to be done if people with learning difficulties are to 'be respected and included as equal members of society' - the government's objective for 2025'.

The full results are available at www.ic.nhs.uk . From the third week of October, an easily accessible summary - with audio buttons, and hearing enhancement - will be online at www.friendlyreports.org.uk

In a separate project, University College London and Cancer Research UK have commissioned BMRB to conduct a survey looking at people's understanding and interpretation of medical instructions such as medicine labels. The face-to-face survey will be conducted among 750 adults in the UK. The aim is to evaluate an adapted version of a widely used American test of functional health literacy in adults (TOFHLA). The results will inform future research into health literacy and its assessment.

BMRB is online at www.bmrb.co.uk.

All articles 2006-23 written and edited by Mel Crowther and/or Nick Thomas, 2024- by Nick Thomas, unless otherwise stated.

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