“I Don’t Want to be a Burden”: Qualitative Rapid Data Analysis of Individual and Systemic Level Factors on Social Relationships

Background and Purpose: Social isolation and loneliness are well-established risk factors for poor health behaviors, and mental health outcomes for individuals with serious mental illnesses (SMIs: schizophrenia, bipolar, major depression), who die approximately 10–30 years earlier and have smaller, less diverse social networks than peers without SMIs. However, limited prior research has focused on what risk and protective factors shape the trajectories of social relationships for individuals with SMIs. Mental health symptoms such as a lack of social motivation or paranoia are often identified as factors that diminish social networks over time. Yet critical gaps remain in our understanding of other mechanisms that influence social relationships that are the unfortunate result of systemic gaps in care endemic to those experiencing SMI. The current study aims to address these gaps through an in-depth understanding of how individual and systemic factors contribute to individuals with SMIs support seeking within their social networks.

Methods: Principles of constructivist grounded theory were used to explore the social relationships of individuals with SMIs. As part of a larger NIMH-funding project, semi-structured interviews were conducted with a subsample of 13 Black/Latino participants with SMIs. Transcripts were analyzed using Qualitative Rapid Data Analysis (RDA) techniques to explore individual and systemic factors impacting participants’ social connections.

Findings: Preliminary analysis generated key themes related to the impact of individual and systemic as well as relational factors on social relationships. Individual-level factors included perceived availability of, access to, and reciprocity of support; social withdrawal; and symptom severity, all of which varied across participants. These factors played a key role in how much participants felt connected to social network members. For example, participants discussed varying levels of support from loved ones and service providers. Among those with low support, they attributed not seeking help because of negative experiences. However, individual/relational factors alone did not tell the whole story. Systemic factors such as a history of incarceration, homelessness, physical/mental health hospitalizations, and stigma from network members shaped participants' relationships and their capacity to reach out for help. For example, participants described their experiences of adverse systemic factors as creating distance within relationships and reported receiving limited support from social network members due to worry of judgement.

Conclusion and Implications: Findings suggest that while support seeking is often framed as individual/relational factors, it is shaped by the broader systemic circumstances that individuals with SMIs experience. A complex interplay of individual/relational factors (e.g., social withdrawal; mental health symptoms), and systemic factors (e.g., destabilizing life events) impact participants' ability to tap into their social network supports. When participants seek support during difficult periods, some rely on family, while others are frequently met with dismissal or silence from network members, contributing to their sense of isolation. Historically, poor social connections among people with SMI have been viewed as an individual issue, but our findings show these individual factors are exacerbated by systemic instability. Social work practice and policy should aim to help individuals with SMIs navigate social relationships at different levels (i.e., individual and systemic).