A participatory photovoice investigation of community assets, barriers, and opportunities to curb the opioid epidemic

Abstract

The opioid epidemic remains an entrenched issue in communities due to its multiple and interrelated risk factors. As part of the HEALing Communities Study, we recruited people with lived experience of substance use disorder and practitioners in the field to participate in multi-session Photovoice projects to contextualize the opioid use landscape in their respective communities. Photovoice combines photography and group discussion to explore concerns and strengths in a community. Researchers facilitated 21 Photovoice projects (N = 127 participants) across 19 communities in the Kentucky, Massachusetts, and Ohio HCS sites. We performed template analysis on the Photovoice discussion transcripts to develop a codebook organized by the Socioecological Model domains, analyzed the transcripts, and developed themes reflecting barriers to and facilitators of responding to the opioid crisis at each socioecological level. We engaged a subset of participants across sites to prioritize these results by importance in addressing the opioid epidemic in their communities. A comprehensive list of themes from the 64 photo discussion sessions are presented, with a focus on the themes prioritized by participants that included the importance of peer recovery support, diverse and collaborative services, advocacy and education to diminish stigma, and the need for resources to address social determinants of health such as housing, recreation, and transportation. Our findings offer key insights to address the opioid crisis within communities. Using participatory methods such as Photovoice to engage experts with lived experience and/or direct work with substance use disorder can help identify gaps and opportunities for potential solutions.

1. Introduction

In 2023, fatal overdose involving any opioid declined in the United States for the first time since 2018 (Centers for Disease Control and Prevention, 2024a). While only a modest decline, fatal opioid overdose continues to remain a pressing public health challenge with the number of opioid-related fatalities nearly equaled the combined fatalities from gun violence and automobile accidents for that year (Centers for Disease Control and Prevention, 2024b). Researchers have argued part of the challenges with tackling the opioid epidemic is its multifaceted and evolving nature (Jalali et al., 2020a). Shifts in the drug supply that increasingly includes fentanyl and its analogs as well as other additives such as xylazine represent an ever changing threat (Ciccarone, 2017; D’Orazio et al., 2023). Moreover, resilience and recovery from opioid dependence is contingent upon a number of interrelated social determinants, which vary across and within community contexts (Altekruse et al., 2020; Elinor Haidor, 2022; Farhoudian et al., 2022; Joudrey et al., 2022). Understanding the multilevel factors that drive and sustain the epidemic is, thus, necessary when developing and implementing community-based interventions to prevent overdose fatality and to treat opioid use disorder (OUD).

Studies from a variety of settings have mapped a wealth of factors that can fuel or inhibit the opioid epidemic. One meta-review aggregated OUD treatment barriers and facilitators across 12 systematic reviews organized by ecological domains (Bronfenbrenner, 1977), including the individual (e.g., knowledge, beliefs, attitudes), interpersonal (e.g., relationships with family and friends and peer support), organizational (e.g., treatment services, therapeutic team, harm reduction access), societal (e.g., stigma), and structural levels (e.g., laws, policy) (Farhoudian et al., 2022). Other studies have reported barriers to OUD treatment across ecological domains including anticipated stigma, fear, or lack of self-efficacy (Bremer et al., 2023; Mackey et al., 2020; Scorsone et al., 2021), lack of peer or family support (Drazdowski et al., 2024; Lewis et al., 2024; Mackey et al., 2020; Scorsone et al., 2021; Stanojlović & Davidson, 2021), limited services and/or service fragmentation (Elinor Haidor, 2022; National Academies of Sciences, 2019), social determinants such as lack of housing, employment, transportation, and technology (Ashford et al., 2020; Bremer et al., 2023; Browne et al., 2016; Cernasev et al., 2021; Elinor Haidor, 2022; McLean et al., 2024; National Academies of Sciences, 2019; Scorsone et al., 2021), and laws that reduce access to services (Bremer et al., 2023; Cernasev et al., 2021; Goodman et al., 2020; National Academies of Sciences, 2019). Due to these multilevel, interrelated factors influencing substance use, researchers have highlighted the Socioecological Model (SEM) as a useful framework to conceptualize these factors and to inform the implementation of contextually tailored interventions (Bronfenbrenner, 1977; Jalali et al., 2020b; McLeroy et al., 1988a).

Engaging people with lived experience (PWLE) of OUD in research can deepen our understanding of community contexts, revealing service gaps and intervention opportunities, and drive implementation of tailored interventions. PWLE have offered their unique insight into structural factors that initiate and heighten opioid and drug use behaviors, describe drug supply changes, as well as how to effectively address opioid misuse (Chang et al., 2019; Ledingham et al., 2022; Salazar et al., 2021; Westafer et al., 2024). Researchers have used community-based participatory research (CBPR), which promotes mutually beneficial and equitable partnerships among researchers and populations being researched, to successfully tailor culturally grounded interventions to address substance use disorder (Holliday et al., 2018; Newark Community Collaborative Board (NCCB) et al., 2018; Skewes et al., 2019; Turuba et al., 2024). Researchers have called for more meaningful engagement of participants and greater uptake of CBPR in health research (Leung, 2004; Sprague Martinez et al., 2023; Suarez-Balcazar, 2020), including less tokenistic representation (Brown & Jones, 2021; Colder Carras et al., 2023; Egid et al., 2021; Jones et al., 2023; McGladrey et al., 2025; Simon et al., 2021). Photovoice is a CBPR method that explores community strengths and concerns through photography and discussion and can meaningfully engage PWLE and practitioners in the OUD treatment and recovery field in research to generate landscape analysis data and inform intervention strategies (Balvanz et al., 2024; Wang & Burris, 1997). There are a growing number of studies engaging PWLE with Photovoice (Cabassa et al., 2013; De Seranno & Colman, 2022; Drainoni et al., 2019; Mizock et al., 2014; Muroff et al., 2023; Smith et al., 2022; Van Steenberghe et al., 2021), including using the method as a substance use disorder (SUD) education and stigma-reduction intervention among healthcare providers and students (Flanagan et al., 2016; Tippin & Maranzan, 2019).

A team of researchers implemented Photovoice as an optional sub-study within the HEALing Communities Study (HCS), a multisite, randomized, wait-list controlled trial that aimed to reduce fatal opioid overdose (Walsh et al., 2020). HCS employed phased intervention delivery, which included a community-coalition engaged, data-driven selection of evidence-based practice (EBP) strategies. The research team supplemented the HCS with Photovoice in part to engage PWLE and service providers to collect first-hand, contextual nuance of community-based assets and deficiencies related to the opioid epidemic (Balvanz et al., 2024). As the HCS concluded and best practices and lessons from the trial were being shared (NIH HEAL Initiative, 2025), U.S. state and local governments were allocating opioid abatement funding – settlement from corporations selling prescriptions that contributed to the opioid crisis (Alexander & Mansour, 2022). The goal of this paper is to share cross-community themes generated from Photovoice-based engagement with PWLE and SUD/OUD service providers during the HCS. The approach and findings from this paper could inform intervention decisions as U.S. communities navigate how to utilize opioid abatement funding.

2. Methods

2.1. Data collection and interim analysis

HCS Photovoice researchers utilized existing relationships with community partners through HCS community coalitions and implementing partners to recruit Photovoice participants (Balvanz et al., 2024; Sprague Martinez et al., 2020; Walsh et al., 2020). Photovoice study eligibility criteria included: 1) being at least 18 years of age, 2) residing in one of the HCS study communities, and 3) having an interest in the opioid epidemic’s impact on their community. In Ohio (OH) and Massachusetts (MA), researchers recruited PWLE through recovery centers. Kentucky (KY) also recruited staff from agencies partnering with HCS to implement EBPs, including peer recovery support specialists. We conducted community-specific Photovoice projects between January 2022 and December 2023. The study (Pro00038088) was approved by Advarra Inc., the HCS single Institutional Review Board.

Following the HCS Photovoice protocol (Balvanz et al., 2024), a trained group facilitator - often HCS researchers - engaged participants in multiple Photovoice sessions encompassing an orientation, two to four photo discussion sessions, and an action planning session; each session lasted approximately two hours and was recorded and transcribed. Participants received $25–50 (depending on site) for each session they attended, unless their employment prohibited them from receiving incentives. The orientation session consisted of an overview of the Photovoice method, informed consent, and elicitation and selection of photography discussion-topics using nominal group technique (Centers for Disease Control and Prevention (CDC), 2018). Between sessions, participants took photographs on the topic to submit for the subsequent focus group discussion. Photovoice facilitators used the SHOWeD method to guide each photo discussion session, which includes a series of questions to elicit the meanings behind photos, compare and contrast participant experiences related to the photo topic and its meanings, and brainstorm actions that could help address issues discussed (Shaffer, 1985). The action planning session engaged participants to pair photos with discussion quotes or novel captioning, and brainstorm ways that the knowledge generated during the project could be used in advocacy efforts. HCS staff and participants collaborated to disseminate these results at multiple events, including sharing with HCS community coalitions, at state-level advisory board meetings, and broader events with local and state policymakers.

2.2. Analysis

The HCS Photovoice protocol embedded participatory analysis into photo discussion sessions as a first phase of an iterative data collection and interpretation cycle (Fig. 1). This approach addressed the criticism that Photovoice and other participatory action research often do not offer sufficient guidance on participatory analysis techniques (Liebenberg, 2022; Reich et al., 2017). After each photo discussion session, the facilitator completed interim analyses to document barriers of and facilitators to addressing the opioid epidemic by SEM domains and flag representative quotes in transcripts (Bronfenbrenner, 1977; McLeroy et al., 1988b). To start the next session, the facilitator presented these interim analyses to participants as a member-checking confirmation that participant reflections were accurately captured. Our goal was to minimize participants’ burden in post-photo discussion analytical work, considering the time they had already dedicated to the Photovoice project, while collaboratively interpreting focus groups transcripts.

Fig. 1.

Data collection and analysis process.

To facilitate later phases of participatory analysis, in spring 2024, a cross-site coding team of several HCS Photovoice researchers (MM, SS, MB, JM, RGO, PB, SE, AK) and student researchers used the member-checked interim analyses described in Section 2.1 as the basis for creating a comprehensive cross-site codebook based on template analysis (King & Brooks, 2017). First, several authors (MM, SS, MB) reviewed the interim analysis for each photo discussion (n = 64 across sites) and inductively coded them to create a comprehensive list of all topics covered in the photo discussions. These individuals clustered topics based on similarity, then observed the alignment of clustered topics with concepts from sociological stigma frameworks (Fox et al., 2018; Krendl & Perry, 2023; Link & Phelan, 2001) and fundamental cause theory (Hatzenbuehler et al., 2013) and developed preliminary codes from these clusters. Fundamental cause theory directs public health researchers and practitioners to focus interventions at the socioeconomic inequalities that give rise to persistent health disparities transcending specific disease conditions. The coding team discussed these initial codes and then organized each code by SEM domain, drafted code definitions, set inclusion/exclusion criteria and coding guidelines, and added valence codes to flag facilitators, barriers, and action steps. The coding team drafted a codebook and revised codes for clarity. The final codes included self-efficacy/self-stigma, anticipated stigma, disclosure, relational environments supporting recovery, discrimination, organizational operations, stereotypes, contextual recovery facilitators and barriers, cross-system coordination, workforce issues, structural discrimination and power, status loss and labeling, policies needed for recovery, and fundamental causes of the opioid overdose epidemic.

Subsequently, the cross-site coding team collaboratively coded one transcript using the final codebook to ensure consistency in code definition interpretations. For this step, each team member independently coded the same transcript using comments in Word and then met to review the transcript and discuss which codes were applied and why. Next, site-specific coding teams with deeper familiarity with their site’s data collaboratively coded a set of transcripts from one of their Photovoice groups. Each site assigned their remaining transcripts for independent coding by site-specific coders using NVivo (version 12) (Lumivero., 2023) and completed the first round of coding in the summer of 2024. Coded files were merged and classified by site (KY, MA, OH) and rural/urban status of communities. From the final cross-site coded and merged dataset, PB and JM exported code matrix reports by facilitators and barriers codes and action suggestions, read each report, and inductively and systematically labeled expressions of the code with a subcode. PB and JM then clustered these subcodes to create descriptive themes for barriers, facilitators, and suggested actions and organized themes in tables by SEM domain. PB, RO, MB, JM, and MM discussed the resulting themes to confirm inclusiveness and representativeness of projects for their sites.

2.3. Participatory results prioritization

With the data analyzed, the coding team re-engaged a select group of Photovoice participants (AS, KC, BH, SM, AB, FH, TC, DM, BG, CR, SS, SD) through a series of meetings to help prioritize the themes by importance for informing their communities’ opioid epidemic responses. Each HCS site Photovoice leader recruited at least two participants based on 1) participation in an HCS Photovoice project, and 2) demonstrated interest in Photovoice action planning. This group of 12 prioritization participants met during a series of three virtual sessions to rank order themes in each SEM domain.

During the first meeting, prioritization participants introduced themselves and shared their perceptions of their communities’ strongest assets and largest barriers to overcoming the opioid epidemic. PB then described initial findings of the barrier and facilitator themes at each SEM level. The meeting concluded with an invitation for participants to partner with another prioritization participant prior to the next meeting to read the study results and rank-order themes within an assigned SEM domain by their perceived importance for their communities. The results shared with prioritization participants consisted of SEM domain themes, a brief narrative description of each theme, and selected de-identified quotes that exemplify the theme. At the second meeting, prioritization participant teams shared their rankings of themes and rationale within the assigned SEM domain. After the team presented their rankings, the full group discussed the themes and rankings. The final meeting involved a confirmative review of the prioritized findings from the previous meetings followed by the presentation and discussion of suggested actions that originated from Photovoice sessions.

3. Results

HCS Photovoice facilitators completed a total of 21 Photovoice projects representing 19 communities across KY (n = 10 projects in 8 communities), MA (n = 6 project/communities), and OH (n = 5 project/communities). They collectively engaged 127 people, almost all of whom had a personal connection to OUD and either have lived experience and/or worked in the OUD field. Nearly two-thirds of participants in KY (62 %) and OH (69 %) were female, while those in MA were primarily male (60 %). In each state, 90 % or more of the participants were white. Across sites, the mean age was about 40 years old. The majority of participants in MA and OH had a high school education or less, while in KY, the majority had at least some college experience, likely because this site also recruited staff from service provider agencies (Table 1).

Table 1.

Photovoice participant demographics across participating HCS sites.

	KY (n = 45)	OH (n = 29)	MA (n = 53)*
Gender (%)
Male	38 %	21 %	60 %
Female	62 %	69 %	38 %
Nonbinary	0 %	10 %	2 %
Race and ethnicity (%) **
Hispanic/Latinx	0 %	0 %	2 %
Non-Hispanic White	93.3 %	93 %	90 %
Non-Hispanic Black	6.6 %	3 %	5 %
American Indian/Alaska Native	2.2 %	3 %	2 %
Average age in years (range)	42 (21–74)	41 (25–65)	39 (23–60)
Education level (%)
Less than high school or high school degree	4.4 %	41.3 %	44 %
Some college, no degree	20.0 %	27.6 %	22 %
Associate degree	8.8 %	13.8 %	17 %
Bachelor’s degree	13.3 %	17.2 %	10 %
Graduate education	22.2 %	0 %	5 %
Did not respond	28.8 %	0 %	0 %
Personal connection to SUD ***	62.2 %	100 %	100 %
Service provider	36	5	4
Person in recovery	18	28	41

^*11 participants in MA did not provide demographic information.

^**These percentages do not add up to 100 % because participants were allowed to select multiple race/ethnicity categories for self-identification.

^***Roles are not mutually exclusive (i.e., a person can be a service provider and a person in recovery); because of this, numbers of respondents are provided rather than percentages.

In Sections 3.1 and 3.2, Table 2 (facilitators) and Table 3 (barriers) display the rank-ordered listed themes determined by prioritization participants during the process described in Section 2.3. The tables include a complete list of themes generated through analysis of the photo discussion sessions (n = 64 across sites) as described in 2.2. to show the breadth of factors discussed across communities. Descriptions of the top-three-ranked themes within each SEM domain as determined by participants in the results prioritization activity and representative quotes from the photo discussion sessions follow the tables. Section 3.2. also contains action items identified to tackle the barriers to address the opioid epidemic compiled from suggestions during photo discussion sessions and listed by SEM domain.

Table 2.

Prioritized themes representing facilitators of overcoming the opioid epidemic across SEM domains.

Individual-level Facilitators

1. “Moments of clarity” often push support-seeking or treatment

2. Self-care helps support and sustain recovery

3. Self-advocacy helps start treatment

4. Finding and following one’s own recovery journey is important for success

5. Leaning on faith/spirituality helps with the recovery process

6. Motivation to engage within and contribute to the community is a protective factor

7. Engaging in other activities and recreation can replace substance use

Interpersonal-level Facilitators

1. Social support, particularly from others with lived experience, helps people start, stay on, and have accountability on the recovery path

2. Being treated as “equal” by others removes barriers to recovery

3. Champions of SUD and role models facilitate recovery journeys

4. Recovery coaches noted that timing of support, an open mind, and setting boundaries for themselves are important in supporting others

5. Involving family and children in recovery is important

6. Sharing one’s experiences with substance use and recovery helps and can inspire others

Organizational-level Facilitators

1. SUD service availability is a necessity

2. Collaboration among providers strengthens continuum of care

3. Expansion of fellowship venues such as churches and groups in some communities offer activity options

4. Recovery and harm reduction programs provide alternatives to incarceration

Community-level Facilitators

1. Advocacy and education through community events are opportunities to educate and destigmatize SUD treatment

2. General public and leadership acceptance that opioids are a challenge in the community facilitates recovery efforts

3. Access to nature, recreation, and pro-social activities are important alternatives to substance use

4. Improved collaboration among organizations provides a safety net and diverse services

Policy-level Facilitators

1. Progressive court measures reduce incarceration

2. Laws passed help to prevent fatal overdoses and promote recovery

3. Persistent advocacy can reach policymakers

4. Federal aid for student loans helps employ some in recovery

Table 3.

Prioritized themes representing barriers to overcoming the opioid epidemic across SEM domains.

Individual-level Barriers

1. Anticipated stigma can lower self-esteem and prevent help-seeking

2. Lack of knowledge of available services hinders connecting to services

3. Longer-time users can develop a physical dependency for substances

4. Personal history with trauma and unwanted emotions can propel substance use

5. Lack of access to basic needs competes with treatment-seeking

Interpersonal-level Barriers

1. Shame and tough love can separate people who use substances from their families

2. Lack of support can perpetuate use and stall treatment-seeking

3. Generational substance use affects youth’s risk of substance abuse

4. Labeling people who use substances as “less than” dehumanizes and separates

5. Family denial of a member’s substance use perpetuates stigma

Organizational-level Barriers

1. Discrimination hurts people with lived experience by denying access to jobs, housing, healthcare

2. Stigma from healthcare workers deters people who use drugs from getting evidence-based treatments

3. Healthcare prescribing policies can enable risky substance use

4. Church decline and a lack of inter-organizational coordination leaves resource gaps

5. Recovery staff burnout and shortage due to low pay and high stress

6. Delayed access to treatment stalls recovery-seeking

7. Little or no access to MOUD during incarceration increases the risk of overdose

Community-level Barriers

1. Community decline fuels hopelessness and erodes recreation

2. Lack of adequate transportation limits access to recovery services

3. Negative stereotypes of PWLE discourage the adoption of recovery services

4. Insufficient workforce in SUD treatment reduces availability of services

5. Changing drug supply is a danger

6. Lack of collaboration among service providers can limit recovery progress

7. Insufficient treatment services fail to meet diverse community demand

8. NIMBY attitude in communities reduces treatment options

Policy-level Barriers

1. A disabling environment created by discriminatory policies prevent access to basic needs and services

2. Economic disadvantage and health insurance status interact to negatively impact treatment and recovery access

3. Rigid recovery regulations restrict progress

4. Criminal penalties for substance possession and use are disproportionate compared to other crimes

3.1. Facilitators of addressing the opioid epidemic

The following section outlines themes generated from Photovoice sessions that can facilitate addressing the opioid epidemic (Table 2).

3.1.1. Individual-level facilitators

3.1.1.1.

Themes at the individual level reflect knowledge, attitudes, and beliefs that help people with OUD initiate and maintain treatment. The prioritized facilitators at the individual level included: 1) an initial “moment of clarity” to compel individuals to start recovery, 2) self-care, and 3) self-advocacy to access proper treatment that best aligns with their needs.

Participants noted that their rank of individual-level themes reflected an order of operations necessary to first seek and then maintain treatment. This sequence often started with moments of clarity, such as losing custody of children, a desire to overcome stigma, or incarceration. A participant from OH explained:

A lot of times it’s the courts and getting your kids taken away is the turning point. It’s where you get a light shined on. We call it “the moment of clarity” in recovery where people in jail, they take a few days, a few moments to maybe see their lives as it really is. Because the unmanageability, the denial is really thick. But when you get in jail, all of a sudden you got to take a look at things. Or you get your kids taken away, it’s hard to deny that you got a problem.

Participants described how this initial insight was followed by self-care, or an elevated focus on oneself as a base to enable treatment. For several participants, this meant minimizing social interactions that are stressful or might trigger substance use to focus on self-care. As one participant from MA explained:

I didn’t have a relationship with myself. I had a relationship against myself. And being in recovery, I find that self-care is a big part of my recovery. That’s a big positive impact for me, because I’m comfortable in my own skin now.

Participants also prioritized self-advocacy as a means to seek and find the best combination of treatment for themselves, whether through using medications, attending groups, journaling, building relationships, or participating in meditation, recreation, or church.

3.1.2. Interpersonal-level facilitators

3.1.2.1.

Themes at the interpersonal level broadly related to social support. The forms of support prioritized by participants included: 1) instrumental and emotional support from others with lived experience, 2) being treated as “equal” by the general public, and 3) support from champions of SUD recovery. Various participants discussed the need to see that recovery was possible in others before imagining it for themselves, so they gravitated toward professional support from PWLE. A participant from MA summed up the sentiment:

It’s how you learn best, I think, from people who have been there or are there. I’m not gonna listen to somebody who’s never been in my situation.

Participants also described feeling bolstered by people willing to listen to them and treat them as equals despite their substance use history (Fig. 2). Additionally, many prioritized the connection with a professional or community member who served as SUD champion or role model who is connected to community SUD resources and advocated for people with SUD. Participants noted that they relied on champions since many experienced the loss of support from others.

Fig. 2.

OH participant photography to represent the importance of human connection and support needed in recovery with commentary from a KY participant.

3.1.3. Organizational-level facilitators

Participants mentioned how the practices and procedures of different types of agencies (e.g., healthcare, criminal legal, faith-based, and SUD-specific services) impacted responses to the opioid epidemic in their communities. Prioritized organizational-level facilitators included: 1) availability of SUD services, 2) collaboration among providers that has strengthened the continuum of care, and 3) venues that provide fellowship. Participants prioritized the value of an influx of diverse SUD-specific services to improve options for recovery. Additionally, participants reflected on the increased collaboration across the SUD-focused providers in some communities, noting how coordination has replaced competition to provide the individual the best chance at success in recovery. One participant from KY reflected on the dual advancement in the availability of services and coordination in communities:

I’ve been in this field literally working almost in the exact same block for the last 19 years. And so many more doors are opening today than were opening even three years ago, five years ago.... It’s so fluid right now and so many more players are coming to the table and willing to come to the table. It really is starting to feel like… We used to be very territorial of our patients. “I’m the only person that can help them. You can’t fix them. I’ve got to be the person to do it.”

And it just feels like this community has really starting to open those doors…

Participants in numerous communities also noted the proliferation of options for pro-social and sober fellowship offered through groups, churches, and other organizations to support recovery. Participants discussed that the improvements they have seen in support and services reflected a shift in perceptions of SUD and a willingness for cross-sector organizations to become involved in community responses to substance misuse.

3.1.4. Community-level facilitators

Participants reported many community-level factors that help mitigate the opioid epidemic, and they ranked the most important community-level facilitators as: 1) advocacy and education through community events 2) public/leadership recognition of the opioid epidemic, and 3) access to nature, recreation, and pro-social activities. Fig. 3 highlights the finding that community events promoting advocacy and acceptance helped normalize the issue of substance use as one to be addressed and not stigmatized.

Fig. 3.

OH Participant photography representing advocacy and resource distribution in a community with commentary from a KY participant.

Participants pointed out that organizational and community leadership support helped humanize SUD, combat stigma, and provide a more positive environment for those interested in treatment. These leaders served as SUD champions, who participants frequently noted, improved the community as whole. Finally, participants rated access to nature, recreation, and pro-social activities as important to provide options for healthy activities, community engagement, and belonging. One participant from MA reflected on the positive protective factor recreation can offer:

I think it really comes down to the community. Having outlets for the next generation to find their passions, to find things that they enjoy, to put their energy into… I got in trouble when I was running the streets; I got in trouble when I had idle time. It just hit me when we were hanging out at the park that day, I was like, this is exactly what we need more of.

3.1.5. Policy-level facilitators

The highest-ranked themes at the policy level were: 1) progressive court measures, 2) laws passed to support recovery and prevent fatal overdose, and 3) policy advocacy. Participants prioritized progressive courts at the policy level because they valued their impact in reducing incarceration and providing alternative sentencing for people with nonviolent substance possession charges. A participant from OH reflected:

I got lucky. I ended up getting a number [signifying incarceration in corrections, not prison] and not going to prison…. She [judge] revoked my probation so that I got six-months, time-served in county, so I would get a number but not go to prison.

Participants mentioned that changes in policies support recovery, including assistance for low-income housing, reunification with children, court-ordered commitment of family members to inpatient treatment, government-backed initiatives for coordinated care at a single location, and legal protections for bystanders helping at the site of an overdose. Ultimately, participants added that many of these supportive policies came from advocacy, and thus persistent advocacy is necessary to continue to improve laws and regulations affecting access to recovery services and resources.

3.2. Barriers to addressing the opioid epidemic

The following section details themes generated from Photovoice sessions that participants perceive as barriers to addressing the opioid epidemic (Table 3). In addition, each domain reports a recommended action from participants’ responses to the concluding Photovoice sessions question, “What can we do?”

3.2.1. Individual-level barriers

Individual-level barriers prioritized by participants included: 1) anticipation of stigma or judgment that deterred seeking treatment, 2) lack of knowledge of available SUD treatment services, and 3) physical dependence on substances to feel normal. As with individual-level facilitators, participants said that their rankings reflected the perceived order of operations necessary for an individual to seek and stay in recovery. Anticipated stigma reportedly lowered self-esteem and prevented people from asking for help. Participants described their shame that led to avoiding healthcare as well as staying away from recovery centers so as not to be associated with their substance use (Fig. 4).

Fig. 4.

MA participant photograph of “What stigma looks like in my community” with commentary from a MA participant.

For the second barrier, lack of knowledge of available treatment options for SUD, participants explained the overwhelming initial steps required to locate and navigate resources while dealing with the effects of dependence such as withdrawal and maintaining stable housing. A participant from MA explained:

And it’s hard because it’s like now because I’m at a different juncture in my life in recovery because as I look at it now, if someone said, “Well what are you going to do?” I’d be like, “I’m kicking the door down,” because I know how to get to that light now. But if you asked me that 33 years ago, I would’ve been like, “I don’t know. I know there’s a light but Jesus, everything’s in my way”.

Finally, participants highlighted the barrier of the physical dependence on substances to feel normal, recounting how initial use of substances like pain killers led to dependence and the need to consume more to avoid withdrawal symptoms.

Participants’ suggestions that align with the individual-level SEM domain included engagement in activities and self-advocacy. Participants noted that activities such as hiking, art, and music provide individuals with an alternative to substance use. To overcome stigma and help individuals find the best treatment for their needs, participants referenced the need for self-advocacy in healthcare and the community.

3.2.2. Interpersonal-level barriers

The barriers at the interpersonal level ranked highest by participants were: 1) family shame and tough love that often separated the person using substances from their family, 2) lack of social support, and 3) witnessing substance use within the family. Participants noted that loss of any support can isolate, but loss of family relationships are the most consequential, as these are the individuals who generally offer the most support. The experience of one participant from MA reflected this sentiment:

I couldn’t be around. My brothers and sisters didn’t even want me around, so it was just like that sucked. And I grew up in a really loving family. I was always a major part of it, and I was in weddings, this, that, and the other. And then heroin just drove me off the cliff.

While loss of some level of family support was said to be common, participants said that a lack of support from others could further isolate individuals. Participants discussed the necessity of cutting ties with acquaintances with whom they used substances and avoiding people who might judge them, which meant losing friendships. Another barrier that some participants described was witnessing multigenerational substance use, which was perceived to elevate youth risk. Numerous participants described growing up with family members using substances or witnessing multi-generational substance use among clients. As one participant from KY recounted:

It’s a generational thing though because families use together or that’s been my findings… Because when I moved back… I was like, my God, the mother, the grandmother and the child are using together or the brother’s selling the product to the family. So, it’s a family thing. And that’s passed down and passed down and your uncle sold before you did, your dad sold before you did - so it’s a family generational thing.

One of the strongest recommendations for action arising during photo discussions was increased direct involvement of PWLE in peer support for prevention, recovery, harm reduction, and advocacy. In addition to being a positive example of progress in recovery, peer supporters offer motivation and resources to those seeking treatment in the wake of diminishing support from family and friends. A participant from MA offered the strategy of paying peers to help distribute naloxone:

I think that was the idea behind stipended peers is having people set up around the high-risk areas [to distribute naloxone], advertise Narcan training via social media.

3.2.3. Organizational-level barriers

While participants noted that the number of organizations that provide SUD care have increased, they also reported that the availability of recovery support services is still insufficient and those that exist present challenges. The barriers that participants prioritized included 1) prevalent institutional discrimination, which prohibited access to jobs, housing, and healthcare, 2) stigma in healthcare, and 3) dangerous prescribing policies at some healthcare organizations. Participants described experiencing discrimination from institutions that impaired their ability to meet basic needs (Fig. 5).

Fig. 5.

OH participant photography depicting the only housing option for those in recovery within a rural community lacking recovery-specific housing from a discussion on housing, with commentary on the topic from a KY participant.

Additionally, participants across states noted that stigmatizing attitudes from providers are a barrier to recovery. This theme was prioritized because when individuals with OUD seek help from healthcare providers, they are often at a crisis point, and how they are treated by staff influence their decisions about treatment initiation and recovery. A provider from KY reflected on this phenomenon:

When the medical community puts that patient down – “Why are you here? Because you’re just a junkie,” which happens all the time, that’s a problem. I had a patient who wouldn’t go to the ER, because they treated him like crap. And yet he had a new murmur, and I said, “You have to go to the emergency room.” And I talked to the emergency room. I told him what I was sending. They took care of him and not quite 48 hours later, he had a heart valve replacement. He would’ve been dead had he not gone to the ER.

Regarding organizational-level prescribing practices, numerous participants reported providers offering excessive pain medication for pain relief without considering their documented opioid use history. Participants perceived lack of adequate provider education to be a cause of the continued practice of overprescription of pain medication, despite its well-known link to the opioid epidemic.

To bolster the response to the opioid epidemic at the organizational level, during photo discussions participants suggested greater education and more collaborative services. Participants proposed education in the form of trainings and print materials to help address stigma. In communities with limited SUD services, participants in one community suggested using space in a recently closed hospital for a methadone clinic, while those in another community suggested satellite centers with one-stop treatment options. Participants recommended increased collaborative services with warm hand-offs between providers to broaden treatment options and ensure best fit of services for the individual needs.

3.2.4. Community-level barriers

Among community-level barriers, participants prioritized: 1) community decline, 2) lack of transportation options, and 3) negative community perceptions of SUD. Participants commented that the closing of industries has had a long-lasting effect on the quality of life of residents, and the resulting disinvestment has led to a decline in positive recreation options and an increase in pervasive hopelessness. Additionally, the lack of transportation options in these and other communities further impeded access to needed treatment and services (Fig. 6).

Fig. 6.

MA participant photography in a rural community to represent the lack of transportation and commentary from a MA participant.

Barriers to transportation are heightened in rural areas, where participants reported traveling up to 45 min for treatment and noted that public transportation is infrequent enough that people might lose a half-day of work or more securing OUD medications. Subsequently, participants highlighted the widespread negative perceptions of substance use and recovery in communities as the third most important barrier because community stigma resulted in a failure to implement critical recovery services. Without allies in the community to support recovery, participants felt that people are left to suffer alone.

Participant suggested actions at the community level included increasing recreation, transportation, and housing, particularly within rural communities. Those proposing recreation exemplified investing in aging infrastructure like nets for basketball hoops, after-hours access to school resources, park clean-up to promote use, and enhancing audio and visual art options. Suggested transportation improvements ranged from increased hours for public services to buying vehicles that peer support navigators could staff to support recovery. One participant from KY suggested a way to increase affordable housing while making SUD services more accessible:

I wish our community as a whole thought a lot along the lines of, “What can we do about our problem? What can we do? How can we help somebody get on their feet?” I love those little communities with the sheds. I’d stick a case management shed right in the center of a little shed community and everybody has to visit the case manager every day and work toward the goal.

Other suggestions to bolster housing included finding ways to use vacant buildings for housing, increased female-specific halfway housing, and giving subsidies to homeowners who rent to individuals in recovery.

3.2.5. Policy-level barriers

The policy-level barriers that participants prioritized included: 1) a disabling environment created by discriminatory practices, 2) public insurance limitations, and 3) rigid recovery regulations. The disabling environment is the product of discrimination and stigma that impede access to basic resources. Legal charges from substance possession and use often restricted access to future housing, employment, and services, leaving participants involved with the criminal legal system unable to fully engage in the recovery process or even meet community supervision requirements. Additionally, public insurance issues included limitations on coverage with some preferred treatments and a dearth of providers that accept Medicaid. Furthermore, participants reported the burden of rigid recovery regulations encountered in some correctional and behavioral settings, such as mandatory in-person group attendance despite transportation impediments, or mandatory abstinence-only program options. One provider from KY recounted the overwhelming pressure of such restrictions on a patient:

I have a recent patient who has had several children removed from their home and actively has one on the way, just had one removed again, after one use. Lapsed one time and the child was removed. [Her] case plan is like really, really, really long, and she lives in a very rural area where there’s not a lot of resources, and she cannot do all of her services all in one location because of transportation issues and financial issues. Now there’s domestic violence involvement, and the one person that was paying for all of the bills is no longer in the home, and she just literally was so frozen with just feeling very overwhelmed.

Participants across communities recommended advocacy to help change policy. One MA recovery coach highlighted the expertise PWLE could leverage in policy advocacy when the group discussed approaching local government with suggestions on how to curb substance use:

Everything, almost nearly every piece of useful information I’ve learned in this field has come from someone who has used drugs or does use drugs. I mean I learn a lot of medical stuff from [Medical Center staff]. But in terms of action and how I wanna move forward with this work and how I wanna treat people, literally the most useful information has come from people who use drugs…

Participants added that Photovoice products, including photography, themes, and representative quotes could be powerful tools in advocacy efforts.

4. Discussion

The HCS Photovoice research team engaged 127 PWLE and SUD-related practitioners across 19 communities within HCS in Photovoice projects to understand community-based assets and barriers to curbing the opioid epidemic. Our team of researchers and participants found Photovoice a highly engaging, action-oriented, and cost-effective research method to access these insights. The collective investigation by participants in this study, all of whom have first-hand experience with substance use and/or recovery work, revealed a breadth of factors perceived to impact the opioid epidemic, as well as offering suggestions on how to overcome these barriers. Although prior literature reports diverse barriers to and facilitators of responding to the opioid epidemic, the personal experiences of PWLE and SUD-related professionals participating in the HCS Photovoice project provided insights into community-specific landscapes of substance use. Participants were able to focus discussions on aspects of the opioid epidemic most relevant to their community and prioritize results, thus sharing ownership over the data, analyses, and resulting actions.

Our study identified a multitude of factors that impact opioid use disorder across communities. Like authors before us, we found the SEM helpful to conceptualize and organize the multilevel factors influencing substance use (Farhoudian et al., 2022; Jalali et al., 2020a). The SEM framework also helped us member-check results within communities and later to prioritize the most pressing themes hindering or helping curb the opioid epidemic from the vantage of practitioners and resource users within the individual, interpersonal, organizational, community, and policy domains. Many of the prioritized themes overlap with actions suggested during photo discussions, and in some cases, cut across multiple SEM domains. These include stigma, importance of support from PWLE, and the impacts of numerous social determinants of health in addressing the opioid epidemic.

Photovoice participants prioritized stigma as a barrier within multiple levels of the SEM including internal, within interpersonal relationships, in SUD service organizations, within the broader community, and in policy guidelines related to housing and employment. According to participants, the disabling environment created by multilevel SUD stigma not only poses a challenge to readiness for treatment but also stymies access to SUD services by those interested in treatment. This finding is supported by prior research on stigma as a barrier to SUD treatment (Bremer et al., 2023; Farhoudian et al., 2022; Mackey et al., 2020), including studies with providers (Ashford et al., 2018; Elinor Haidor, 2022) and PWLE (Goodman et al., 2020; McLean et al., 2024; Westafer et al., 2024). In response, Photovoice participants suggested advocacy with and education in organizations, the broader community, and to policy makers to begin to dismantle stigma and normalize harm reduction and recovery. Similar to participants in our study, Shahwan et al. (2022) suggested the need for more education and advocacy through a variety of venues (Shahwan et al., 2022). Numerous authors have also called for increased education on addiction for cross-sector service providers to reduce stigma within healthcare, social services, and criminal-legal systems organizations (Atkins et al., 2020; Khazaee-Pool et al., 2024).

Some authors have found success in using Photovoice as a tool for education and stigma reduction (Flanagan et al., 2016; Tippin & Maranzan, 2019). For researchers desiring to use Photovoice in this manner, we highly suggest engaging participants as much as possible in shaping messages and sharing project insights with their communities and policymakers. Researchers have warned that engagement in research of stigmatizing conditions can inadvertently help reinforce that stigma (Cecchini, 2019). Involving participants helps ensure that educational and stigma reduction messages represent the depth of experience of those who have experience with the condition. Furthermore, participant involvement can amplify the voice of this marginalized population, making them more relatable to a public frequently exposed to the negative stereotypes of substance use (Bosworth et al., 2024).

Participants also highlighted the importance of having support, guidance, and advocacy from PWLE to facilitate recovery. This need for support was heightened when relationships with family and friends became strained due to substance use. Individuals seeking recovery often prefer peer support specialists and recovery coaches with lived experience, and they have been shown to foster trust, credibility, and hope for the people they serve (Bardwell et al., 2018; Francia et al., 2023). Peer support specialists also are ideally positioned to help dispel internalized stigma and increase retention in medication treatment for OUD (Moffitt et al., 2024). Despite their recommendation to promote the role of peer support specialists in the recovery process, participants echoed recent studies that indicate the need for peers to set boundaries to avoid becoming overextended, particularly when working in an environment that can be triggering for those with SUD (Chen et al., 2023).

Our study results emphasized numerous social determinants. Issues discussed, including lack of transportation, recreation, and housing, are relevant barriers reported through other studies (Cernasev et al., 2021; Elinor Haidor, 2022; McLean et al., 2024). Participants from rural communities noted the dual threat of lack of sufficient SUD services and longer travel times to treatment centers that hinder treatment. Likewise, others have reported the impacts of insufficient SUD services (Moody et al., 2017) and long travel times on treatment continuation (Garnick et al., 2020). Authors have noted that rural communities require multilevel investments, such as telehealth options and internet access (Button et al., 2023), to improve treatment utilization. Recovery housing has become the most widely available form of recovery support infrastructure (Office of National Drug Control Policy, 2022), yet participants highlighted the need for recovery housing absent in some areas, or gender-specific recovery housing. Abstinence-based recovery housing has demonstrated promising outcomes, with cost-savings (Vilsaint et al., 2025). Housing First options, which offer unconditional housing followed by social services, has been proposed as a form of harm reduction for those not ready to stop using substances (Pauly et al., 2013), and could effectively reduce hospital visits among people who use drugs (Milaney et al., 2021).

Participants in our study offered context-specific and creative solutions to address community contextual drivers of the opioid epidemic including advice on how to fill service gaps. In accordance with our protocol, researchers and participants shared results from their projects with their community coalition or the state Community Advisory Board. Additionally, members of each state shared collective community projects at events attended by state-level policymakers. As an example of real-world impact, the sharing of the Photovoice results with policymakers in one community about lack of recreation and transportation inspired community investment in run down basketball courts and the establishment of a recovery-specific ride service.

4.1. Leveraging PWLE insights to inform abatement funding

The availability of resources impacts many of the barriers, facilitators, and action items reported across the SEM domains in this study. Participants’ insights are particularly relevant to current decision-making about use of the opioid abatement settlement funds which local and state governments started allocating as the HCS ended. By early 2025, U.S. state and local governments and the major pharmaceutical opioid manufacturers, marketers, distributors, and retailers reached agreement on $56.9 billion in opioid abatement settlements (Opioid Settlement Tracker, 2025). While there are decision-making tools to guide abatement fund investment, they assume decision-making users have identified opioid abatement priorities through broad-based community engagement (NIH HEAL Initiative, 2025; Opioid Principles, 2025). Although most states have adopted formal grant-making processes for allocating abatement funding, municipal governments face few requirements for public engagement and reporting related to local settlement spending (Opioid Settlement Tracker—Community Grant Tracker, 2025). Less than $1 in $7 in settlement spending is overseen by boards that reserve at least one seat for a PWLE of OUD, and places where this representation is not required may not even include those most affected - PWLE (Mulvihill, 2024). This lack of lived experience in abatement decision-making is evident in some local spending to date on shooting ranges, ballistic vests, drug-sniffing dogs, and vehicles for law enforcement (Mulvihill, 2024; Ramlagan, 2025). Akin to the recent development of SUD research priorities by the NIDA-funded Initiative for Justice and Emerging Adult Populations (JEAP Initiative) led by PWLE and service providers (JEAP Initiative, 2025), findings of this study contribute timely insights from people directly impacted by the opioid epidemic on a priority agenda for local abatement spending. Further, we recommend communities use a participatory method, such as Photovoice, to systematically include insight from PWLE in funding decisions.

4.2. Limitations and strengths

Our sample was predominately white and did not capture the experiences and recommendations of other races/ethnicities. This disparity in racial/ethnic representation limits the transferability of our findings within communities with more diverse demographics, including those with a majority Black or Hispanic population. Our sampling approach, which was often through recovery centers, may be responsible. Capturing the voices of minoritized groups is needed considering the increasing rates of fatal opioid overdose in the non-Hispanic Black population during the time of this study (Larochelle et al., 2021), and non-Hispanic Black and American Indian/Alaskan now have the highest rates of fatal opioid overdose (Saunders et al., 2025). Additionally, Hispanic and non-Hispanic black populations are often under-represented in treatment compared to the White population (Pinedo, 2019). In future studies we recommend collaborating with more diverse local coalitions or advisory boards to seek a more representative sample. Another potential limitation of the study is that each community developed their own photo topics, and some groups delved deeply into single topics, while discussion in other projects crossed a breadth of topics. Deep dives allow for rich context but limit discussion of all potential factors influencing the opioid epidemic in communities. However, this approach empowered each community to explore the issues they believed to be most pertinent to their community. This resulted in highly engaged groups that were solution-oriented to their community contexts. The participant-engaged and action-oriented approach is a strength, as it sought input from participants through all phases of the study including topic selection, data collection, analysis member-checking, results prioritization, and dissemination of results. Also, using the SEM offered a useful framework to organize results and a digestible way to member-check to ensure validity of these results with participants. Similarly, discussing one SEM domain at a time helped focus the prioritization discussions and resulted in a ranked list of barriers and facilitators at each level. Our participant-engaged prioritization process helped identify the most pressing issues in curbing the opioid epidemic from the vantage of practitioners and resource users.

5. Conclusion

Photovoice is a method that can engage PWLE and the SUD-related workforce to contextualize the strengths and barriers that communities face in addressing the opioid epidemic. The gathered insights and suggested actions from Photovoice participants may inform increased investment in the priorities of those most affected by SUD, especially with abatement funding availability. Participants in this study recommended communities take action to reduce stigma toward SUD and recovery, enhance their local treatment service arrays, increase cross-sector coordination in the OUD care continuum, expand recreation and transportation options, and improve affordable recovery housing through subsidies and renovation of abandoned buildings. People who are most impacted by the opioid epidemic in their communities and therefore most knowledgeable about the appropriateness, acceptability, and feasibility of potential interventions must inform local opioid abatement spending based on their hard-won understanding of limitations to their communities’ current responses. The results of Photovoice projects may benefit those policymakers and others interested in advocating for community-led decision-making on public health issues like the opioid epidemic.