Perceptions of Diseases of Despair by Members of Rural and Urban High-Prevalence Communities

Key Points Question What do people living in communities with high prevalence of diseases of despair (suicidality, drug abuse, and alcoholism) believe is driving the crisis, and what are their potential solutions? Findings In this qualitative study, 60 participants from 3 communities identified factors associated with despair-related disease, including financial distress, lack of infrastructure or social services, deteriorating sense of community, and family fragmentation. Intervention strategies included building resilience through community-level coordination and state investments in social services and infrastructure. Meaning Common beliefs were observed in rural and urban communities, highlighting associations between political and economic decline and despair-related illness and suggesting health systems improve clinical processes to screen for despair and address the factors associated with it.

A second analyst (LJV) is a physician scientist whose research interest focuses on end of life and communication issues. Her experiences with medicine and research give perspective into the meaning behind disease burden of the Diseases of Despair. She is the co-director and co-founder of the Qualitative and Mixed Methods Research Core at the home university. Her qualitative work generally follows a pragmatic approach using descriptive methods to understand phenomena, and she applies a humanistic perspective to data analysis. She has not conducted research on social determinants of health in the past. She had no stake in the success of the project and was brought in as a methodologic consultant. Philosophically, she believes people make meaning through their experiences and chose behaviors based on their emotions and rational problem-solving skills. Therefore, she values lived experience and emotional connections while analyzing qualitative data, and this perspective is reflected in the analysis of the themes in this paper. She took seriously the need for objectivity during design and analysis as a result of potential implicit bias in other team members with connections to the topic. This researcher bracketed bias to the extent possible by consistently checking methodologic and analytic decisions by referencing the raw dataset.
The focus group facilitator (AM) for this study was a female Community Engagement Coordinator for the Penn State Health system with a Master's in Public Health with 5 years of experience in communityengaged research and qualitative inquiry. She was formally trained in qualitative research methodology by West Chester University of Pennsylvania. She developed a relationship with focus group participants through prior work as part of the Penn State Clinical and Translational Science Institute's Engaged Research Core, which develops collaborative partnerships within the health system's service area. The interviewer has a personal history of interest in rural health and racial and ethnic minority health and social determinants of health. While this researcher herself has not been affected by diseases of despair her hometown has been affected by these issues, imparting an emotional connection to the topic and potentially influencing her facilitation of the focus groups. Objectivity was pursued to the extent possible by using an IRB-approved interview guide developed by the research team, with input from community members.
The research assistant who assisted with coding (BS) was a research project manager and research technologist for a research core specializing in qualitative and mixed methodology at the time the data was analyzed and manuscript was written. The author acknowledges her bias and preference for this methodology, and thus the methodology presented in this paper. The author had little to no background knowledge on the academic work related to Diseases of Despair or its associated theoretical framework at the time of developing the paper. The author's expertise was related to facilitating and guiding the qualitative coding team throughout the coding of the focus group data, and applying a systematic approach to interpreting the qualitative data and reporting the results. The author's role was to facilitate a methodologic approach along with the team's content expert (DRG) to develop themes and interpretations that were sound, rigorous, and had fidelity to the focus group data. Objectivity regarding the data was prioritized, and the author took special care to analyze the data iteratively, grounding the themes to the data throughout multiple stages of the analysis process.
The other coders were medical students and only coded using NVivo but did not analyze the data.
Participants were invited to serve in focus groups (after providing informed consent) in conjunction with regularly scheduled meetings with health system outreach personnel. A relationship was established through AM prior to study commencement. Participants were informed of the goals of the research via IRB approved scripts prior to focus group sessions. Since the interviewer was known, nothing was specifically reported with regard to bias, assumptions, and interests in the research topic.

Domain 2: Study Design
We used an ontological philosophical assumption appropriate when asking 'What is the nature of reality?' (in this case, DoD in hotspots). To do so, we used a phenomenological approach and employed a descriptive thematic analysis that is useful when trying to understand individuals' common, lived experiences regarding a phenomenon. 48,49 Finally, we examined themes and their relationships to construct a preliminary conceptual model describing how various factors perpetuate despair and affect public health. Additional details of our analytic approach are provided in the manuscript body.
Participants were selected based on their residence/community-based work in three high-prevalence hotspots that were identified using insurance claims data for diseases of despair. This process is described in detail in the main body of the manuscript. We used purposive sampling based on these hotspots to select communities with census blocks featuring high deciles of DoD burden, and conducted a focus group within each area through existing community partnerships. Present at the focus groups were the research facilitator, and three medical students who took initial notes on the sessions. Four, one-hour focus groups were held in urban (n=1) and rural (n=3) hotspots. Those who chose not to participate in the focus group were not present. The sample is described in the main manuscript.
The interview guide is provided in Supplement 1 (below). Repeat interviews were not performed. All focus groups were audio recorded. The facilitator and medical students took field notes to help guide the one-hour discussions, but these notes were not intended for incorporation into the analysis. Data saturation was judged to occur after review of three transcripts. Transcripts were not returned to participants due to feasibility issues.

Domain 3: analysis and findings
There were four data coders and two senior analysts who reviewed the data. The coding tree is provided below (in the eTable). The constant comparison method was used during the analytic process to derive themes that emerged from the data and were not identified in advance. Coding was performed using NVivo 12. Results were reviewed by a member of the Harrisburg (urban) focus group as a means of ensuring that the results were truly reflective of the participants' experiences. Major themes and quotations are presented in the manuscript. Minor themes and outlier cases (e.g., participants who argued that diseases of despair are a result of failures in personal responsibility) are also reported. Change in familial roles, dynamics, responsibilities, structure over time Participant reports changes over time in child discipline, single parenthood, non-involved parents, compounding familial roles and expectations, stressed family dynamics, etc. Community identity; sense of increasing 'outsiders' Participant reports a sense of 'us vs. them' mentality, references to "community culture", changes in generational norms, loss of a sense of security in the community. Other

eAppendix 2. Focus Group Interview Guide
Participant notes a loss of trust or fellow-feeling in the context of neighborhoods. Epidemic of loneliness (individual level) Alienation, loneliness Participant reports loneliness/isolation, nonmeaningful relationships, physical isolation, etc at the individual level, either in reference to themselves or another individual. Role of social media and technology; Mental health; exacerbating alienation and loneliness Participant reports role of technology in deepening loneliness/isolation/alienation.

Other
Participant references an earlier time when people were less lonely and more civically engaged. Failure of educational system Lack of preparation or opportunities for higher education or lack of skilled labor training or schools Participant reports lack of vocational schools, lack of education for practical jobs. Participant reports limited opportunities to pursue college degrees, young people being deterred by cost of education, etc. Lack of cultural sensitivity in schools Participant reports teachers from outside the communities they teach in. Teachers' lack of understanding of their students' lived experiences.

Other
Participant discusses a sense that the way students are raised increases their risk for truancy/misbehavior. Failure of government