Stigma is a powerful social process of devaluing people or groups based on real or perceived differences- such as gender, age, sexual orientation, behavior, ethnicity and disease state. Stigma is a major barrier in accessing treatment for many indications. Here we explore the roots of stigma, raising our awareness, and practical ways to combat discrimination.
Stigmatization occurs on multiple levels simultaneously; intrapersonal (self-stigma), interpersonal (relations with others), and structural (policies, laws and systems) impacting both volunteers and researchers. Fortunately, evidence-based solutions exist to improve both volunteer and research interactions and quality of care.
Individuals living with chronic illnesses commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals they come in contact with. This occurs when health professionals “see the illness ahead of the person”. According to SAMSHA, this can contribute to the fact only 2.5 million of the 21.2 million individuals living with mental illness seek treatment. We must confront the lack of awareness causing underlying stigma-related behaviors to ensure we are modelling person-first behaviors instead.
Here is a list of tools we in clinical research can use to fight stigma and discrimination in the work we do:
- Know the facts. Educational anti-stigma interventions present factual information about the stigmatized condition with the goal of correcting misinformation or contradicting negative attitudes and beliefs. They counter inaccurate stereotypes or myths by replacing them with factual information.
- Be aware of your attitudes and behavior. We are a sum of our experiences. Many have grown up with specific prejudices and judgmental thinking.
- Language. Be aware of possible derogatory or hurtful language. See more information in our language session.
- Focus on the Positive. Health problems are just a piece of who we are. When speaking about clinical research, be sure to show volunteers in a positive light. We all have value in our society.
- Educate yourself and others. Challenge myths and stereotypes. Find opportunities to pass on facts and positive attitudes about people in clinical research studies.
These strategies are aimed at reducing stigma on a person-to-person basis and have also been shown to benefit “self-stigma” by creating a sense of empowerment and boosting self-esteem.