Stigma and Discrimination in Mental Health

Established: April 2006, first meeting July 2006.

Convenor (Chair): Professor Graham Thornicroft, Professor of Community Psychiatry, Institute of Psychiatry, Kings College London. (e-mail: g.thornicroft@iop.kcl.ac.uk)

Members:
Participants are a multi-disciplinary group of investigators across the fields of: sociology, psychology, geography, health economics, service user research, psychiatry, epidemiology, psychometrics, mental health policy, occupational health, and learning disability.

Elaine Brohan, IoP, KCL, psychometricianl; June Brown, IoP, KCL, psychologist; Peter Byrne, UCL, psychiatrist; Cathy Carter, South London & Maudsley NHS Trust, psychiatrist; Linda Dunion, social marketing; Nick Glozier, IoP, KCL, occupational health; Gregor Henderson, Scottish Executive, governmental policy; Gary Hogman, Lead, SHIFT, NIMHE, DH, Department of Health; Louise Howard, IoP, KCL, psychiatrist; Aliya Kassam, IoP, KCL, epidemiologist; Mike King, Royal Free Hospital, UCL, psychiatrist; Matthew Knight, South London & Maudsley NHS Trust, health promotion nurse; Liz Main, Independent Consultant, service user expert; Paul McCrone, IoP, KCL, health economist
Craig Morgan, IoP, KCL, social scientist; Joanna Murray, IoP, KCL, social scientist; Dimitrios Pashos, Estia Centre, Guy’s Hospital, learning disability; Vanessa Pinfold, Director of Research, Rethink, geographer / NGO; Diana Rose, SURE, IoP, KCL, service user researcher; Liz Sayce, Disability Rights Commission, policy; Andre Strydom, Royal Free Hospital, UCL, psychiatrist; Graham Thornicroft, IoP, KCL, psychiatrist

A strong degree of participation by people with mental illness/service users will be ensured by the participation of Diana Rose of SURE at IoP KCL, Liz Main, Independent Service User Consultant, and Vanessa Pinfold from Rethink. The Group shall proactively engage with service users at all stages of study design, grant applications, research conduct, analysis and dissemination / interpretation of results.

Remit and Aims:
Stigma and discrimination add a dimension of suffering which have been described as a ‘second illness’. Stigmatising attitudes and discriminatory behaviours among the general population against people with severe mental illness are common in all countries. Globally, there is very little evidence about which interventions actually reduce discrimination against people with schizophrenia. In particular, little is known of effective interventions: (i) in cross-cultural settings, (ii) for target groups identified by consumers and carers as most adversely discriminating against them, and (iii) in the evaluation of long-term cost-effectiveness, although the negative effects of stigma can act as formidable barriers to active recovery.

Key gaps in current knowledge include: (i) assessments of structural discrimination (such as institutional practices to the disadvantage of stigmatised groups), (ii) assessments of the knowledge, attitudes, beliefs and behaviours of children, (iii) use of experimental/intervention approaches, (iv) cross-cultural approaches.

It is clear that even in the best resourced countries over half of the people with mental illness do not seek any help for their difficulties, and the evidence suggests that stigma and anticipated discrimination are a significant factor in this reluctance to gain access to treatment and care.

The research group will form a British network of those actively interested in research on stigma and discrimination in mental health. The research questions addressed will include:
• The development of high quality measures of stigma and discrimination suitable for cross sectional and longitudinal use both nationally and internationally
• The measurement of both stigma and discrimination with different groups of people with mental illness, including people with different diagnoses, those with substance misuse, and the impact of co-morbidity upon these characteristics
• Piloting candidate interventions to reduce stigma and discrimination
• Taking successful interventions on to the exploratory and definitive trial stages

The research methods to be used will include:
• Psychometric skills in the creation/adaptation of new measurement scales
• Survey measures, especially to compare different groups of people with mental illness and to conduct prospective studies to track trends in stigma and discrimination over time naturalistically and in relation to population level anti-stigma interventions
• Quasi-experimental studies, for example of health care professionals and employers, who do and do not receive clustered anti-stigma interventions
• Randomised controlled trials with either individual level or clustered random allocation to assess anti-stigma interventions

Current Status & Future Plans:
A series of areas into which the group wish to research include:
• Mentally ill parents and stigma/discrimination against them in relation to their parenting abilities and the removal of children into care
• Comparing experiences of discrimination between different diagnostic groups
• Diagnostic over-shadowing – i.e. delay in diagnosis of other illness because of stigma of mental illness, for example in relation to learning disabilities.
• Developing evidence-based interventions by people with mental illness to reduce stigma and discrimination and their social and psychological impact.
• Stigma expressed by mental health services and service personnel
• Stigma as factor leading to failure to seek help in primary care at onset of mental illness
• How we can reduce the perceived stigma of mental disorder among older people and improve access to acceptable support/care
• Widening opportunities for social/ community participation among people with mental health problems
• Theoretical study – exploring an aspect of self-stigma, for example, linked to seeking employment
• Cross-discipline analysis of outcome measures to assess levels of stigma towards health or disability conditions as well as collation of findings
• Assessment of stigma and discrimination in early intervention services

This research area is entirely in line with national mental health policy in England and Scotland and their related social inclusion agenda. As the evidence base for interventions in this field is as yet under-developed, in the first 3 year period the group expects a series of platform studies to develop relevant scales, undertake pilot studies on candidate interventions and to complete feasibility studies. Larger RCT proposals are likely to follow these platform investigations.

Progress report (June 06): The first meeting of the group was held on 14.07.06 and two research ideas are currently being developed and prepared to submit for funding.