Abstract
(197 words)The ideals of community-engaged health research are challenging to realize ethically and methodologically, particularly when focused on substance use disorder (SUD), in which the power differentials inherent to stigma marginalize people with lived experience (LE) as full community participants. This study provides a typology and exploratory data generated through Photovoice to understand relationships among community members with different roles related to LE of SUD (i.e., SUD service providers, service users, and the public) in the context of a large-scale community-engaged opioid overdose reduction intervention. A team of 14 participants and researchers used an adapted thematic analysis method to interpret Photovoice data from 65 total participants in Kentucky, Massachusetts, and Ohio. Photovoice data indicated the influence of stigmatization on perceptions of service users as problems to be solved by service providers without the significant investment of the rest of the community. Service provider burnout is exacerbated by competition for scarce public investments in addressing the dire need for SUD services amid the opioid epidemic. Community-engaged SUD research can be improved by defining the parameters of communities in explicit, participatory, and reflexive ways and recognizing how disinvestment and stigmatization influence relationships among community members occupying different roles in SUD services.
| Original language | English |
|---|---|
| Article number | 100531 |
| Journal | SSM - Qualitative Research in Health |
| Volume | 7 |
| DOIs | |
| State | Published - Jun 2025 |
Bibliographical note
Publisher Copyright:© 2025 The Authors
Funding
This research was supported by the National Institutes of Health and the Substance Abuse and Mental Health Services Administration through the NIH HEAL (Helping to End Addiction Long-term\u00AE) Initiative under award numbers UM1DA049394, UM1DA049406, UM1DA049412, UM1DA049415, UM1DA049417 ( ClinicalTrials.gov Identifier: NCT04111939). We wish to acknowledge the participation of the HEALing Communities Study communities, community coalitions, community partner organizations and agencies, and Community Advisory Boards and state government officials who partnered with us on this study. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, the Substance Abuse and Mental Health Services Administration or the NIH HEAL Initiative\u00AE. This Photovoice project was a supplement to the HEALing Communities Study (HCS) funded by the National Institute on Drug Abuse and Substance Abuse and Mental Health Services Administration to evaluate the impact of implementing evidence-based practices across healthcare, behavioral health, and CLS sectors, paired with community engagement and anti-stigma communication campaigns, on reducing opioid overdose deaths (Walsh et al., 2020). This four-site, parallel-group, cluster-randomized wait-list controlled trial involved partnering with local coalitions within geographically defined communities (i.e., county, towns) and assigning each community to either the intervention (Wave 1) or the wait-list comparison group (Wave 2) (Walsh et al., 2020). HCS comprised 67 communities in Kentucky, Massachusetts, New York, and Ohio that, on average in 2016\u20132017, had twice the national rate opioid-related fatalities (El-Bassel et al., 2020). Of these communities, nearly half were rural and 17 are considered Appalachian, where there are high concentrations of areas facing federally designated Health Care Professional Shortages and significant health disparities (El-Bassel et al., 2020). The 67 HCS communities are home to 8.67 million people, with the average population of an HCS community totaling approximately 129,000 (El-Bassel et al., 2020).Burnout and compassion fatigue are heightened by competition for limited SUD service funding. One provider without SUD-LE said competitors poach her behavioral health staff with \u201C\u2018blood money,\u2019 saying, \u2018I will pay you $10,000, but you have to leave now.\u2019 Like, you don't care about patient care?.The people that she's serving? You're just like, \u2018Leave now and come here.\u2019\u201D Another provider without SUD-LE detailed a cross-sector meeting of CLS, behavioral health, and policy-maker groups that became \u201Cvery heated about who gets to do what, and that possession mentality of I'm the only one that can help this group of people, I'm not going to work with this provider.\u201D Although some providers with and without SUD-LE described improved coordination across agencies and sectors in recent years in response to greater overdose mortality from heroin and fentanyl, they underscored that inadequate funding and staffing for SUD and related social services reduced their capacity to address service users' complex concerns and spend time required to build trust. These mismatches between resource needs and public investments intensify stigma against SUD service users as costly social problems.This study implies that common interests and priorities across roles cannot be assumed in community-engaged SUD research based only on shared areas of residence, given how social harms perpetuated by relational stigma disenfranchise people with SUD-LE and degrade public investments in SUD service provision (Addison et al., 2023). PAR entails building consensus among participants on study design, conduct, and interpretation, which is difficult in the face of conflicting roles in SUD service delivery and funding. A first step in fostering PAR team development is collecting data from researchers, advisory board members, and research participants on not only their sociodemographic characteristics (e.g., race/ethnicity, gender, age) but also their LE of SUD service use and role related to service provision. Early reporting to PAR teams on their composition across roles and other differences followed by strategic recruitment of people in less-represented roles could mitigate the tokenism of including people with SUD-LE only in the recruitment and community outreach stages of research projects. Participatory SUD research teams might be strengthened with processes for members in non-PSS roles to explore disclosure of SUD-LE, against ableist professional cultures where it is perceived as a liability (King et al., 2020). To sustain consensus on research questions, methods, and analysis across roles, participatory SUD research teams could incorporate opportunities for continual communication, support, and reflexivity around team dynamics, emotions, logistics, mutual learning, expectations, and adjustments to project involvement around changing personal and professional demands (Arnold et al., 2022; Egid et al., 2021; Greer et al., 2018; Steketee et al., 2020; Williams et al., 2020). Perspective-taking across roles through narrative PAR methods like Photovoice may help address stigmatization, role strain, and tokenization of SUD-LE so they are not replicated in community-engaged SUD research design and team composition.This research was supported by the National Institutes of Health and the Substance Abuse and Mental Health Services Administration through the NIH HEAL (Helping to End Addiction Long-term\u00AE) Initiative under award numbers UM1DA049394, UM1DA049406, UM1DA049412, UM1DA049415, UM1DA049417 (ClinicalTrials.gov Identifier: NCT04111939). We wish to acknowledge the participation of the HEALing Communities Study communities, community coalitions, community partner organizations and agencies, and Community Advisory Boards and state government officials who partnered with us on this study. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, the Substance Abuse and Mental Health Services Administration or the NIH HEAL Initiative\u00AE.
| Funders | Funder number |
|---|---|
| Substance Abuse and Mental Health Services Administration | |
| Critical Language Scholarship | |
| National Institute on Drug Abuse and Substance Abuse and Mental Health Services Administration | |
| National Institutes of Health (NIH) | UM1DA049412, UM1DA049394, UM1DA049415, NCT04111939, UM1DA049417, UM1DA049406 |
| National Institutes of Health (NIH) |
ASJC Scopus subject areas
- Health(social science)
- Social Sciences (miscellaneous)