The impact of stigma and discrimination on psychological distress in people with intellectual disability and access to health services: a mixed methods approach
Background Self stigma has been associated with psychological distress, poorer adherence to treatment and is a barrier to help seeking behaviour in people with mental illness. Little is known about the impact of stigma on people with intellectual disability (ID). In addition, people with ID are more likely to experience disparities in accessing health care, possibly as a result of discrimination and inadequate knowledge of clinicians about the health needs of this vulnerable group. Aims 1. To examine the association between self reported stigma and psychological distress, quality of life, treatment adherence and service use in people with ID 2. To explore experiences of health services by people with ID, particularly in relation to whether people have experienced discrimination from health services. Methods 1. A cross-sectional study of 229 participants with mild to moderate ID, from 12 centres, was conducted to address the first aim. Data was analysed using a random effects regression model. 2. A qualitative study using semi-structured interviews, with 15 service use and carer dyads (29 participants), was used to examine the second aim. Data was analysed using thematic analysis. Results 1. Self reported stigma was positively associated with psychological distress and higher service use, and negatively associated with quality of life. There was some evidence that self reported stigma was associated with lower treatment adherence. Psychological distress mediated these relationships. 2. Half the participants had reported experiencing discrimination from health services. Accounts included negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Implications There is an urgent need to develop interventions that tackle self reported stigma and psychological distress in people with ID. Health services need to ensure that reasonable adjustments are made in order to reduce both direct and indirect discrimination of people with ID