The impact of perceived stigma on psychological distress, treatment adherence, service use and quality of life in people
Lead Research Organisation:
University College London
Department Name: Division of Psychiatry
Abstract
Previous studies have shown that people with intellectual disabilities (ID) regularly encounter abuse or discrimination from the community and from services such as the NHS. Other studies have shown that people with mental illness are less likely to use mental health services and are less likely to continue treatment for mental health problems because of the fear of stigmatisation, which could potentially influence their recovery and prognosis. Stigma may also be associated with stress and psychological problems. We would like to find out if there is a similar association in people with ID between high levels of perceived stigma and psychological problems, and whether stigma affects their use of health and social services, their likelihood of continuing treatment and their quality of life. The research will involve two studies. In the first study we will be interviewing 184 participants with ID using questionnaires. In the second study we will be asking 15 participants with ID and their carers about their views on whether they have been discriminated by health services and whether stigma affects their willingness to obtain help from services. This research will help us to develop ways that health services can reduce stigma and respond to the needs of people with ID.
Technical Summary
Background
People with intellectual disabilities (ID) encounter social barriers resulting from stigma and discrimination, which may be associated with health inequalities. Studies of people with mental illness have shown that perceived stigma is a barrier to help seeking behaviour and may affect compliance with treatment. Perceived stigma in carers may also influence help seeking behaviour. Little is known about the impact of perceived stigma on psychological problems. There are currently no published studies looking at the impact of perceived stigma in people with ID and clinical outcomes.
Aims
To examine the association between perceived stigma and psychological well being, treatment adherence, service use and quality of life in people with ID. The impact of carers? perceptions of perceived stigma on help seeking behaviour will also be examined.
The objectives are to investigate the following questions:
1. Is higher perceived stigma at baseline in people with ID associated with a higher risk of psychological distress?
2. Is higher perceived stigma at baseline associated with poorer adherence to treatment, lower use of health services and poorer quality of life?
3. Are carers? perceptions of stigma associated with use of services and adherence to treatment by individuals with ID?
Design and methods
1. Focus group of participants with ID in order to modify instruments for use in people with ID.
2. Cross-sectional study of 184 participants with mild to moderate ID. The primary outcome measure will be psychological distress. Secondary outcome measures will be treatment adherence, service use and quality of life. Standardised instruments will be used. Perceived stigma will be measured to identify those with high and low levels of stigma.
3. Qualitative study of 15 participants and their carers about their views of stigma and discrimination encountered from health services and barriers to help seeking, using semi structured interviews.
Scientific/medical opportunities
This study could lead to the development of interventions to reduce psychological distress associated with stigma and to the development of stigma reducing strategies that could be employed by health services to enable them to be more responsive to the needs of people with ID. This study will enable the applicant to develop her knowledge and skills of research methodology by undertaking a large scale project that uses both quantitative and qualitative methods, and will enable her to develop collaborations with other researchers and service user agencies
People with intellectual disabilities (ID) encounter social barriers resulting from stigma and discrimination, which may be associated with health inequalities. Studies of people with mental illness have shown that perceived stigma is a barrier to help seeking behaviour and may affect compliance with treatment. Perceived stigma in carers may also influence help seeking behaviour. Little is known about the impact of perceived stigma on psychological problems. There are currently no published studies looking at the impact of perceived stigma in people with ID and clinical outcomes.
Aims
To examine the association between perceived stigma and psychological well being, treatment adherence, service use and quality of life in people with ID. The impact of carers? perceptions of perceived stigma on help seeking behaviour will also be examined.
The objectives are to investigate the following questions:
1. Is higher perceived stigma at baseline in people with ID associated with a higher risk of psychological distress?
2. Is higher perceived stigma at baseline associated with poorer adherence to treatment, lower use of health services and poorer quality of life?
3. Are carers? perceptions of stigma associated with use of services and adherence to treatment by individuals with ID?
Design and methods
1. Focus group of participants with ID in order to modify instruments for use in people with ID.
2. Cross-sectional study of 184 participants with mild to moderate ID. The primary outcome measure will be psychological distress. Secondary outcome measures will be treatment adherence, service use and quality of life. Standardised instruments will be used. Perceived stigma will be measured to identify those with high and low levels of stigma.
3. Qualitative study of 15 participants and their carers about their views of stigma and discrimination encountered from health services and barriers to help seeking, using semi structured interviews.
Scientific/medical opportunities
This study could lead to the development of interventions to reduce psychological distress associated with stigma and to the development of stigma reducing strategies that could be employed by health services to enable them to be more responsive to the needs of people with ID. This study will enable the applicant to develop her knowledge and skills of research methodology by undertaking a large scale project that uses both quantitative and qualitative methods, and will enable her to develop collaborations with other researchers and service user agencies