You Got It on You: How the Experience of Community Is Influenced By Stigma for Individuals with Serious Mental Illness

Background and Purpose: Mental illness stigma can impact experiences of community due to negative effects of labeling and discrimination for individuals with serious mental illnesses (SMIs). These experiences negatively influence social relationships, ones’ ability to find and maintain housing and employment, and hinder the utilization or desire to seek community resources. This phenomenon promotes social isolation, which can negatively impact ones’ ability to integrate into their communities. Since experiences of stigma and community are heavily intertwined, the purpose of this study was to use the Structural-Functional-Experiential (SFE) model of community to expand our understanding of how stigma is present in community experiences and can influence community engagement on multiple levels.

Methods: The study included a sample of 30 individuals with SMIs receiving services in Assertive Community Treatment (ACT) agencies in New York State. An ACT team is a multidisciplinary team that provides individualized services by going into the community or the client’s home. Of the sample, the average age is 45 years old, and most participants are female (60.00%), currently unemployed (90.00%), have never been married (66.67%), and have a diagnosis of schizophrenia (74.07%). The study used qualitative semi-structured interviews to conduct a modified grounded theory analysis.

Findings: Results included four themes that captured participants’ stigma experiences in their communities: feeling like a burden, avoiding disclosure and relationships, providers or no one, and longing for connection. Feeling like a burden was developed from the participants either embracing their stigmatizing labels or calling themselves stigmatizing phrases. Avoiding disclosure and relationships came from lacking trust, feeling fear, estrangement from others, or avoiding people. Providers or no one speaks to the level of social isolation that people with SMIs experience. Many participants talked about their service providers being the only people that they engage with. Lastly, longing for connection identified the lack of connection that participants experience in their communities due to their current station in life.

Conclusions and Implications: The participants experience of stigma influenced all dimensions of the SFE model; their structural communities (i.e., family and friends), their functional communities (i.e., socializing and resources), and their experiential communities (i.e., sharing experiences and identity). These findings point to the effects of stigma experiences and its impact on community, including the ability to connect with others, receive resources, and feel a sense of belonging. Practice implications include service providers being identified as integral for facilitating community integration and navigating stigma challenges by identifying resourceful and available social connections, awareness of disclosure practices, and overall being a bridge between mental health and mainstream communities. Future research should aim to examine other types of service provision and providers, pre- and post- community engagement experiences, and include social network analysis to further understand this phenomenon.