Mental Health Survey of Experiences of Stigma and Discrimination in England

Most people diagnosed with a significant mental illness are cared for under the Care Programme Approach. This study will engage 1200 such service users (150 per 8 national research ‘Hub’ Districts, one NHS Trust per district). The aim of the study is to help these service users to report their experiences of discrimination and stigma in an annual survey over five years. This survey will be undertaken in order to gain a picture of these experiences of stigma and discrimination and the impact they have on service users lives. Information will be recorded in self-completion questionnaires on-line or telephone interviews with service user researchers and a choice will be given of the type of communication used. This study is unusual in that it actively involves service users in the research undertaken.

Because a low response rate (30%) is expected 4000 will be written to with invitation letters. A sample selected will be representative in terms of diagnosis, gender and ethnicity. Certain parts of the study may need to be piloted (tested) in the first stage (the set up phase) of the study. The invitation letter and reply form will be piloted with service users in South London. The different information collection methods, online or telephone may need to be piloted as well if they result in different response rates or types. The content of the survey (measurement) tool for discrimination and stigma will be piloted in the second element of the set up stage of the study with service users in South London. This measurement tool will be adapted from a tool known as DISC currently being designed by a research team at the Institute of Psychiatry.

The third element of the set up stage will be the recruitment of service user participants by service user researchers who will be trained and supported to do so with members of the panel who request an interview. In stage two it is expected that drop out will bring numbers down to about 1000. Participants will be given unique ID study numbers in exchange for personal details. This stage will last a year and contain the first data collection period, which will last 3 months. A newsletter will be sent out to participants every 6 months. Stage three will cover years 2-5 of the Tracker study. March-May will comprise data collection each year.