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. Author manuscript; available in PMC: 2026 Jun 1.
Published in final edited form as: Sociol Health Illn. 2025 Jun;47(5):e70056. doi: 10.1111/1467-9566.70056

“I’m Not A Bad Mom, I’m A Sick Mom”: Using Photovoice to Examine Parental Recovery Narratives Given Institutional Constraints

Marisa D Booty a, Ramona G Olvera b, Peter Balvanz c, Carrie B Oser d, Alexandrea Shouse e, Margaret McGladrey f
PMCID: PMC12311621  NIHMSID: NIHMS2096947  PMID: 40515630

Abstract

Substance use disorder is highly stigmatized despite its contemporary medicalization. Due to the criminalization of substance use, parents with substance use disorder must often navigate recovery while interacting with the criminal legal and child welfare systems. Restitution narratives of illness do not sufficiently capture the recovery experiences of parents with substance use disorder, whose recoveries may better align with a quest narrative. This study uses qualitative Photovoice discussion data to examine the recovery narratives constructed by parents with substance use disorder as they navigate institutional and interpersonal obligations. Using template analysis of 23 transcripts from Photovoice group sessions with 29 individuals who have substance use disorder, we find that criminal legal system and child welfare system obligations limit participants’ ability to fully engage in the recovery process. Carceral institutions act as a barrier to substance use recovery and parenting capacity by conferring punitive consequences that prioritize restitution. Parents in recovery must navigate these restitutive institutions while seeking self-improvement and using their lived experiences to rebuild community with their families. Understanding parental recovery experiences may inform the improved design and implementation of parenting and behavioral health supports available to help break intergenerational cycles of trauma and addiction.

INTRODUCTION

Parental substance use disorder (SUD) can negatively impact children’s life outcomes, such as increased risk of developing SUD, behavioral issues, and difficulty forming attachments (Lander et al. 2013; Peleg-Oren and Teichman 2006). Understanding parental experiences with SUD recovery services while navigating institutions that intersect with substance use (e.g., the criminal legal and child welfare systems) is necessary to effectively address the negative health outcomes associated with parental substance use. This study uses qualitative participatory Photovoice data to examine how parents with SUD construct illness narratives while navigating system involvement. We draw upon Frank’s “quest narrative” framework (2013) as a contrast to the restitution illness narrative to explore the ways in which parents with SUD conceptualize themselves as “bad” versus “sick” within the context of intersecting institutional and interpersonal factors.

Parental Substance Use Disorder and System Involvement

An estimated 12% of children in the United States (U.S.) live in a household with a parent who has a SUD, and county drug hospitalization rates and overdose deaths have been significantly associated with elevated reports of substantiated child maltreatment and foster care entries (Ghertner et al. 2018; Lipari and Van Horn 2013). Parental substance use is a risk factor for child maltreatment (Mayo Clinic 2022), and parents who use substances often face heightened surveillance from the child welfare system (CWS) due to involvement with the criminal legal system (CLS) (Baughman et al. 2021; Ghertner et al. 2018), low socioeconomic status (Canfield et al. 2017), and racial discrimination by law enforcement agencies (Ards et al. 1998; Harp and Oser 2018; Sufrin and Knittel 2021). Substance use during pregnancy is considered child abuse in 23 U.S. states (Sufrin and Knittel 2021), increasing the likelihood of CWS involvement for pregnant people who use drugs. Black women are especially targeted by the CLS and CWS due to structural racism and these institutions’ foundations in the separation and control of Black bodies (Harp and Bunting 2020; Harp and Oser 2018; Mack 2021; Roberts 2022). Thus, parental navigation of SUD and recovery services often involves interaction with the CLS and CWS, a characteristic unique to SUD in comparison to other chronic, medical conditions.

Theorizing Substance Use Disorder Recovery

One of the foundational sociological perspectives on illness and health is Parsons’ sick role theory (1975), which defined illness as a type of deviance that caused sick individuals to lose the capacity to fulfill normative societal obligations (e.g., to work, family) and thus required quick remedy through medical intervention (Varul 2010). However, this “restitution narrative” (Frank 2013; Frank 2016) of get sick, get treatment, get well has been critiqued as serving imbalanced power structures that prioritize conformity to social norms and contributions to the labor force (Cheshire et al. 2021; Grue 2024). Foucault conceptualized this power imbalance as “biopower” (1990), or the way punitive and medical institutions enact social control via regulation and discipline of human bodies. In theorizing mental illness, specifically, Goffman echoed a skepticism in the benevolence of institutions that address mental illness. Instead, Goffman perceived mental health diagnoses and treatment as driven by society’s discomfort with and moral judgement of deviant behaviors attributed to mental illness diagnoses (Goffman 2017; Shalin 2014), and the social construction of SUD as an illness has been similarly criticized as a means of social control (Peele 1995). Thus, illnesses are viewed as legitimate (or not) depending on the ability to experience restitution and a restoration of a “normalized” pre-illness state (Frank 2013; Frank 2016; Levine and Kozloff 1978). Despite the medicalization of SUD as a chronic, relapsing medical condition requiring treatment (McLellan et al. 2000), SUD is often stigmatized, criminalized, and attributed to behavioral defects (Krendl and Perry 2023). The entanglement of punitive institutions and SUD may therefore reflect conflict between social expectations for restitution and the inability (or unwillingness) to return to a pre-illness existence among those with SUD.

An alternative to the restitution narrative of the sick role is the “quest narrative” (Frank 2013; Frank 2016), which prioritizes lived experience in the interpretation of illness. Through the quest narrative, illness is an opportunity for personal reflection, growth, and development of community, and there is an acknowledgment that a return to the “before” may not be possible or desired (Frank 2013; Frank 2016). For individuals with SUD, a return to the “before” may be undesirable because restitution means a return to situations that resulted in the development of the SUD. Disability scholars have criticized sick role theory and the restitution ideal for ableist assumptions of a return to normal or a requirement to minimize effects of illness, when not all individuals with chronic conditions seek curative measures or a normative health status (Cheshire et al. 2021; Grue 2024; Hahn and Belt 2004; Segall 1976). In fact, an ethnographic study of individuals on methadone maintenance treatment (MMT) found that individuals using MMT cited avoidance of criminalization and withdrawal as treatment motivation more often than a desire for recovery or cessation of drug use (Frank 2018). As such, participants’ experience of SUD was shaped by the threats of surveilling institutions rather than pursuit of a normative recovery state.

The purpose of this study is to use qualitative Photovoice discussion data to explore quest narratives of SUD recovery constructed by parents with SUD despite involvement in institutions that demand illness restitution. Photovoice is a participatory action research method developed by Wang and Burris (1997) that seeks collective understanding of social issues and promotes advocacy through participant photography, discussion, and dissemination of findings. The Photovoice method is ideal for understanding perspectives of vulnerable populations or stigmatized groups, such as individuals with SUD and/or CLS/CWS-involvement, due to its goals of participant empowerment and consciousness-raising (Balvanz et al. 2024; Wang and Burris 1997). Prior studies have utilized Photovoice to understand recovery experiences (Smith et al. 2023) and barriers to and facilitators of access to SUD services (Balvanz et al. 2024; Muroff et al. 2023), as well as to reduce stigma among service providers (Flanagan et al. 2016). This study contributes to the participatory SUD literature by examining the illness narratives among parentings individuals with SUD in three U.S. states. Parents with SUD often face increased contact with surveilling institutions that monitor both substance use behaviors (e.g., the CLS) and parenting ability (e.g., the CWS), so this population can effectively speak to the institutional and interpersonal dynamics involved in the social construction of SUD. Understanding these experiences will allow for improved design and implementation of parenting and behavioral health supports available to people with SUD who are involved in the CLS and CWS to help break intergenerational cycles of trauma and addiction.

METHODS

Data Collection

This study uses data from the NIH HEAL (Helping to End Addiction Long-term®) Initiative’s HEALing Communities Study (HCS) Photovoice supplement. The HCS tested a community-engaged intervention combining implementation of an integrated set of evidence-based practices and communication campaigns to reduce opioid overdose deaths in 67 highly impacted communities across four states (Kentucky, Massachusetts, New York, and Ohio) (Walsh et al. 2020). As part of the HCS, the Kentucky, Massachusetts, and Ohio sites developed a shared Photovoice protocol to examine community strengths and concerns related to the opioid epidemic from the perspectives of those residing in the HCS intervention communities (Balvanz et al. 2024). Participants were recruited through word-of-mouth connections to HCS community coalition partners (e.g., community recovery centers) involved with evidence-based practice implementation, as well as through relevant social media, to serve as key informants with firsthand knowledge of the impacts of the opioid epidemic in their communities (Balvanz et al. 2024). Individuals were eligible to participate if they were at least 18 years old and resided in the HCS intervention communities; in Ohio, the sample was restricted to individuals with lived OUD experience, while the Massachusetts and Kentucky samples included individuals with and without lived OUD experience. Participants represented a variety of intersecting community roles and perspectives, including individuals with or without CLS and/or CWS involvement and those working in SUD services and CLS/CWS settings. For this study, we restricted the analysis to groups comprised solely of individuals with lived OUD experience to focus on firsthand OUD narrative constructions. Participants were paid $25 per session in Massachusetts and $50 per session in Kentucky and Ohio, unless their employment prohibited receipt of incentives.

During an orientation session, study facilitators outlined the Photovoice process and ethics of photography and consented participants for data collection and focus group discussions, which were recorded and transcribed (Balvanz et al. 2024). The primary facilitator used nominal group technique (Allen et al. 2004) to generate photo topics. Participants were asked to write down responses to the question “What are strengths and concerns in your community related to addressing the opioid epidemic?”, and then voted on which topics to photograph. Example topics included “the importance of early intervention and peer support for youth substance use,” and “the interaction between SUD treatment and the justice system.” Participants had up to two weeks to take photos (in Kentucky, participants could submit brief videos no more than 10 seconds long) that represented the topics selected by their group, and then groups discussed photos and their relationships to the topics during the following photo discussion sessions (Balvanz et al. 2024). Photovoice participants were encouraged to take photos in which individual persons were unidentifiable, but a consent form was provided for identifiable subjects to indicate the degree to which their photo could be used (e.g., discussion only, community presentations, websites, publications). The facilitators also completed interim analyses of notes taken during photo discussions, which were presented to participants in subsequent sessions as a participatory member-check strategy (Balvanz, Olvera, McGladrey et al. 2024).

For the final Photovoice session, participants contributed to the analysis and dissemination of the collected data. Participants collectively paired their group’s photos with representative quotes from cleaned focus group transcripts or created new quotes that encapsulated the group’s interpretation of the photo discussion. Participants were not necessarily assigned their own photo to promote collective meaning-making, rather than illustrate individualized perspectives of the opioid crisis. The photo-quote combinations were compiled into PowerPoint slides and sent to participants after study completion for use in their own advocacy efforts, and participants also collaborated with local dissemination events (Olvera et al. Under review). The HCS Photovoice study protocol (Pro00038088) was approved by Advarra Inc., the HCS single Institutional Review Board. The study data are available from the corresponding author upon reasonable request.

Analysis

The analysis uses photo discussion session transcripts (n=23) from the Photovoice groups comprised of participants with lived experience of SUD (N = 29 participants across 6 groups). Although parenting and substance use was not an identified photo-topic during the nominal group technique stage, conversations about SUD and parenting were woven throughout the focus group discussions of participants with lived SUD experiences, and CLS and/or CWS involvement was often disclosed. We followed the iterative template analysis method (King and Brooks 2016) to analyze the applicability of restitution narratives to parental conceptualization and navigation of SUD treatment and recovery services. Template analysis is a form of thematic analysis that involves development of a codebook through inductive coding of qualitative data and application of that codebook to the full dataset (Clarke and Braun 2021; King and Brooks 2016). Template analysis is an appropriate method for this study since it can be tailored to methodological approaches and theoretical positions post-data collection. Additionally, thematic analysis does not view consensus coding as necessary for rigorous qualitative analysis, due to the stance that qualitative coding is an interpretive process in which the researcher’s aim is to make meaning from data rather than establish an absolute truth (Braun and Clarke 2021; Nadar 2019).

During the initial data familiarization phase of analysis, the researchers became interested in participants discussions of the public safety and public health functions of the CLS in addressing substance use; we thus began the coding template with the a priori codes of “Public safety” and “Public health.” The first author inductively coded three transcripts and sorted the generated codes into the a priori codes to represent how participants viewed interactions with the CLS/CWS and the roles played by the CLS/CWS in addressing SUD; the coding template was then applied to all transcripts. The prevalence of parenting-related discussions indicated in the creation of the coding template led the researchers to focus this study on data relevant to parental navigation of SUD. After reviewing the codes and coded data for the Photovoice groups with lived SUD experience, we analyzed the ways in which institutional forces contribute to illness experiences of SUD treatment and recovery.

The discussion group transcripts were the primary focus of the analysis, but the photographs were also examined when generating themes due to their role in facilitating the group discussions. While the Photovoice literature finds analysis of verbal data can be sufficient, some researchers have criticized the underutilization of photos given the importance of photography to contextualizing dialogue and enhancing shared understanding among participants (Gabrielsson et al. 2022; Smith et al. 2023). Similar to Smith and colleagues’ (2023) methodology, we include photos representative of the themes and retain the quotes that participants paired with the photos as evidence of the synergy between our theorizing and participants’ initial analyses.

RESULTS

Table 1 displays demographic information of participants included in the analysis.

Table 1:

Participant demographic information

N = 29 participants
Number of groups 6
Number of focus group sessions 23
Gender (%)
 Male 24.1%
 Female 75.9%
Race and ethnicity (%)a
 Hispanic/Latinx 0%
 Non-Hispanic White 93.1%
 Non-Hispanic Black 6.9%
 Other 3.4%
Average age in years (range) 37.4 (25 – 56)
Education level (%)
 High school degree or equivalent 27.6%
 Some college, no degree 27.6%
 Associate degree 24.1%
 Bachelor’s degree 10.3%
 Graduate education 3.4%
 Did not respond 6.9%
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a

Participants could select more than one racial category, so does not add up to 100%.

The analysis produced two themes that illustrate the quest narratives constructed by parents with SUD: 1) What “bad” parents get vs. what “sick” parents need, and 2) Reclaiming parental roles as someone in recovery.

What “Bad” Parents Get vs. What “Sick” Parents Need

Photovoice participants described feeling unable to assume authority of their SUD experiences in the face of institutions that demand restitution and conformity. One participant stated, “I’m not a bad mom, I’m a sick mom,” but the analysis demonstrated that participants’ attempts to reclaim the SUD recovery narrative are made impossible by structures that stigmatize rather than honor the recovery process. During discussions of pregnancies that intersected with CLS involvement, participants felt barred from decision-making for a non-SUD health condition (i.e., pregnancy) due to stigmatization of SUD. For example, a participant who had been detained in a jail while pregnant was denied routine obstetric care:

“You did not get medical care. They would not allow you… to go out to the baby doctor by the time that you could. [Jail Name], it took months. I was there for six months, and I only got to go to the baby doctor one time.”

Despite the participant’s desire for prenatal care and attempts at self-advocacy, they were denied compassion and medical treatment from CLS agents due to their substance use history. In this case, one medical status (SUD) prevented access to care for another (pregnancy), and the participant’s agency was impeded by a punitive institution. Several participants noted that transitions in custody between the CLS and healthcare system resulted in confusion about the available options for meeting both recovery and obstetric needs. To promote client involvement in the decision-making process, a participant suggested:

“having a NICU peer supporter for the moms who are there with the babies. Moms in recovery who have babies in the NICU. It’s a unique situation. There’s so many. And that’s the thing. There’s so many situations where we could make so much progress if there were a couple people working together on it.”

From this participant’s perspective, collaborative, individualized patient care should be prioritized, rather than leaving new parents with SUD to fend for themselves.

Participants also mentioned that resources to support parental recovery were inadequate beyond the postnatal period. While some participants received social benefits such as subsidies for housing, education, and childcare, participants overall agreed that more support is needed for parents in recovery. One participant reflected on arbitrary income cut-offs that dictate the receipt of government subsidies, noting that since their income was $50 over the cut-off for childcare vouchers, they had to pay $780 out of pocket for childcare each month. In another group, a participant expressed frustration at the lack of practical information taught by a court-mandated fatherhood class that focused on “the purity of marriage” rather than useful information related to feeding, bathing, and caring for infants. Another participant also reflected on gender differences in recovery resources available to parents:

“…because we talked about the fact that we have the [treatment community], where a woman can go and take her children to treatment with her, but there aren’t places like that for men, and there aren’t places like that for families. So, if you have a married couple who have children who are in active addiction, and they want to seek treatment, the only way for them to do that is for them to destroy their family unit, which just causes more trauma to them and their children.”

Lack of equitable SUD treatment and recovery service options thus creates role strain for parents with SUD, as they are faced with the dilemma of separating from their children to pursue treatment and recovery to improve their families’ futures.

Photovoice groups wrestled with institutional interference in recovery and parenting and the persistent punishment experienced regardless of compliance with court mandates. On the one hand, participants perceived some validity in systems’ regulatory approaches to addressing child welfare. For example, a participant conceded that their children “did need to be taken” and assured the group that they understood that “[State child welfare agency] are here to protect our children.” However, focus group discussions illustrated that institutional guidelines for reunification with children (and thus, determinations of restitution) are vague at best and overly punitive at worst. Participants overwhelmingly expressed that their children were significant motivation to begin or maintain recovery, but burdensome institutional requirements counteracted their capacity to parent and recover successfully. Reflecting on their history of involvement with the CWS, one participant shared,

“I also remember getting high because I couldn’t see my kids. I couldn’t see my kids because I got high, vicious cycle.”

The following photo-quote combination echoes this sentiment:

Another participant was frustrated at continued negative treatment by the court system and re-traumatization from their child’s prolonged exposure to court, despite the participant being in recovery more than seven years:

“My daughter is traumatized because of my history, and they just keep bringing up all this stuff that happened when I was using, and I have not been using for seven and a half years. …I’ve done every program, every class, every group. I’ve done [Intensive Outpatient Program (IOP)] like six times…And I’d go back and complete another IOP, Parenting Classes, Anger Management, Child Development and Nurturing, Relational Skill Building. I do it all… And now I’m in a custody case with my daughter and they treat us like straight junkies, like we don’t matter.”

Even the mere fear of CWS consequences was a barrier to recovery and parenting. More than one participant mentioned parents going on the run with their children to avoid negative CWS interactions, pointing to stories about “parents who end up living in a hotel on the run from CPS [Child Protective Services] and then mom goes to McDonald’s and overdoses in the bathroom and now we’ve got a three- and five-year-old in a hotel room with no adults.” These realities counter the child-protecting ideals touted by the courts and CWS. When recovery setbacks occur, the punitive consequences imposed by restitutive institutions significantly impact an individual’s ability to freely engage in person-centered SUD treatment and recovery.

Reclaiming Parental Roles As Someone in Recovery

The second theme developed from the analysis was reclaiming parental roles as someone in recovery, which stemmed from discussions about setting children up for success despite the intergenerational nature of SUD and family separations. Participants exemplified the call of the quest narrative to improve their lives and rebuild communities fractured during active substance use; participants were not concerned with a restitution to the “before,” due to the trauma and complex circumstances that played a role in their drug use. This alignment with the quest narrative was illustrated by participants expressing the need for education on how to be a present parent:

“When you know better, you do better. And as a parent or someone who’s active [in their child’s life] now, it’s like you think what you’re doing is the right thing… and then our family got support about how to really be supportive and so then you can do better. So, some of the responses and families need that education about what it really means to be active [as a parent]….”

Another participant praised a specific, local resource that seeks to build father’s parenting skills by providing positive role models and father-child activities, lauding the organization for not “sitting in an office” and instead being “out there in the community” to confer the necessary tools to engage in parent-child relationships. Participants did not want restitution of their parental capacity pre-SUD recovery; rather, they exemplified the quest narrative’s ideal to use illness as a mechanism for self-improvement and fulfillment.

Participants frequently cited social networks as important to fulfilling obligations to parenting, SUD recovery, and the CLS/CWS, especially given the lack of institutional supports indicated by the first theme. One participant noted that familial support was critical during the early days of community reentry from jail:

“I’ve seen a lot of people, none of them completed [treatment] because it was so hard, and so overwhelming because you just don’t have resources, or family, or anything like that… I’m going to be honest, if I hadn’t had my one grandmother that allowed me to stay with her with my baby, my baby would’ve went to foster care, and then I would’ve been dead by now.”

In this case, familial resources not only assisted with parenting but were also lifesaving. However, many participants lamented the reality that bridges burned due to incarceration and actions during active use limited their support networks. One participant’s quest for repairing their relationship with her son was a source of grief and frustration. Reflecting on the situation, the participant said:

“It really sucked to know that I’ve come this far and I’m doing all this great work and I’m making strides in my life and opening doors for other people. That regardless of all of that, my son doesn’t trust my sobriety enough to come with me….”

Institutions relying on restitution illness narratives such as the CLS and CWS deemed the participant ready to engage in their parenting role and resume parenting responsibilities. However, this example highlights the inappropriateness of the restitution narrative in the lived experiences of SUD recovery. Parent-child reunification is a non-linear growth process that involves reflection, time, support and, so prescriptive reunification decisions from punitive institutions will not necessarily reintegrate families.

Upon reunification with children, individuals with SUD use their experiential knowledge to reconnect and assume a new role of preventing the generational transmission of SUD. Many participants felt obligated to reduce children’s risk for substance use and were determined to cease the cycles of trauma and addiction in their families. The following photo-quote postcard highlights this determination:

The concern for stopping the cycle of SUD led participants to discuss effective and appropriate ways to communicate their experiences so that children could learn from their parents’ mistakes. In fact, multiple participants referenced “the talk” in a way that suggests these conversations between parents with SUD and the children in their family are commonplace. For example, one participant shared a conversation with her wife’s adolescent sister due to concerns that the teen may misuse a prescribed narcotic:

“And I was like, ‘Do you want to live a life that we’ve had to live?’ And she said, ‘But look at you now. You do so good.’ And I was like, ‘But I’m 33 years old. And I just now got my life together.’ …I hope she takes my advice. She has so far, but I wish I would have had someone telling me that when I was growing up… So, that’s why I felt the need to do that for her.”

For parents whose children were already struggling with substance use, their own recovery progress gave them hope that their children, too, had the potential of “getting well” and finding their own recovery path. Participants viewed the parental recovery experience as a mechanism for destigmatizing SUD and help-seeking behavior among their children and wider community; this is illustrated by the following photo-quote combination:

Participants were adamant that children should not be kept in the dark about SUD recovery and CLS/CWS involvement just because of their age or perceived innocence. A participant explained:

“And I treat my kids as people. I don’t think they’re stupid. I tell them things because I felt like when I was a kid, people treated me like a lesser human being because I was a child, and I was frustrated all the time that people wouldn’t give me the reason why we don’t talk about this or talk about that… Anything that I think they’re emotionally or intellectually able to understand, I’ll explain it to them, I don’t care. You just heard my six-year-old tell me that I went to jail. She knows.”

Another participant used the overdose death of a friend as an instructional moment, telling their child that “you either get clean or die.” When chastised by a friend for this bluntness, the participant explained that the lack of conversation about drugs did not prevent drug use. Participants viewed the lack of sufficient explanations of SUD recovery and CLS/CWS experiences as counterintuitive to parent-child trust-building, which is vital to healing relationships that had been fractured by the consequences of substance use. The intentional measures taken to rebuild parent-child relationships evokes the one of the key purposes of illness in a quest narrative, which is to build community. The following anecdote demonstrates the power of communicating recovery with children:

Participant A: “…his friend had come over…, and we were talking about just how careful you have to be with your children…. And here comes [son] and his little eight-year-old honest self, and he’s like, ‘Well, my mom used to be a drug addict. Now she’s not.’ And I’m like, ‘Oh my God, my son’s...’

Participant B: “You just want to be like, ‘Thanks kid.’

Participant A: “I was like, ‘Okay bub.’ I was like, ‘Yeah, mom’s- I don’t do that stuff anymore.’ ... The lady I was talking to… she was like, ‘Yeah, but look how your mom is here now. And she has straightened up to do better for you guys.’”

Parental SUD recovery is more complicated than the “get sick, get help, get well” narrative. Participants may internalize SUD as a medical condition, but stigmatization and negative structural consequences of SUD necessitate extra social support to heal parent-child relationships and prevent their children from subsequent institutional interactions.

DISCUSSION

This study highlights the unique experiences of parents with SUD who must recover while constrained by punitive institutions. Photovoice discussions indicated that the quest narrative is more relevant to the lived experience of parents with SUD than the restitution ideals enforced by CWS and CLS involvement, and parents with SUD are insufficiently served by the restitution ideals enforced by systemic involvement. CLS and CWS involvement minimized the legitimacy of SUD as a chronic medical condition, demonstrated by participant experiences of criminalization, arbitrary custody decisions, or lack of access to parental resources and arbitrary custody decisions. Despite institutional implications that parents with SUD are “bad” and not “sick,” study participants were highly motivated by their children to engage with SUD recovery and CLS/CWS requirements, seeking support structures to assist with parenting and endeavoring to prevent children from “inheriting” SUD. Institutional prioritization of restitution requires parents to prove themselves to be “well” and “recovered” regardless of time passed since cessation of substance use, which results in undue burden that could increase risk of return to use – and thus the very illness for which they were initially penalized (Harp and Oser 2018). As demonstrated by the participant who was repeatedly court-mandated to classes, stigmatization by punitive systems was as harmful to children’s wellbeing as a parent’s former substance use. Given these findings, we need to revisit SUD policy and practice to remove excessive requirements on parents with SUD to prove themselves to be “recovered” when recovery is usually a long-term, non-linear process.

One implication of the results is the need for increased equitable resources that support parenting individuals with SUD involved with the CLS and CWS. Reproductive justice is critical as participants noted inhumane treatment and insufficient information to make health decisions while pregnant and incarcerated. Sufrin (2018) named mass incarceration as a reproductive disruption due to the inadequate provision of prenatal care and prevention of informed decision-making related to reproductive health (Sufrin et al. 2015). This is especially the case for Black parents, who face increased surveillance and punishment due to the roots of enslavement embedded into the CLS and CWS (Roberts 2022). Surveillance structures must address intersectional inequity of system involvement, as Black women with SUD face increased parenting surveillance through higher likelihoods of drug testing during pregnancy and reporting to the CWS upon birth compared to white women (Harp and Bunting 2020). Black women who parent are thus particularly constrained from accessing resources that would promote engagement in SUD treatment and recovery services than their white counterparts, and more work is needed to dismantle CLS/CWS policies that perpetuate structural racism.

Beyond carceral systems, there is limited integration of parenting supports into recovery services – only a little over half of SUD treatment centers in the U.S. are estimated to provide specific programming on parenting skills (Arria et al. 2013). Odds that a treatment center has parental programming are significantly more likely if the treatment center only accepts female clients (Arria et al. 2013), and comprehensive wraparound treatment services has been positively associated with number of female clients (Ducharme et al. 2007), despite evidence that fathers are also interested in and benefit from receiving such services (McMahon et al. 2007; Stover et al. 2019). The lack of consideration towards fatherhood and SUD recovery perpetuates gender norms around family labor and attention to health (Daly and Groes 2017; Dore et al. 2024; Hochschild and Machung 2012) and therefore places much burden to recover and stop generational cycles of addiction on women. Implementation of SUD treatment services, including housing options, which serve entire family units is necessary to promote equitable service access and lessen traumas from splitting families. Future research should also examine the expansion of treatment services that address the needs of non-cisgender, non-heterosexual parents with SUD.

Analysis of Photovoice transcripts demonstrated parents’ concern for youth SUD prevention and commitment to using personal experiences as an educational tool. Unlike individuals with other chronic illnesses, those with SUDs are questioned about their parenting capabilities due to the association of SUD with CLS involvement and child neglect and maltreatment (Ghertner et al. 2018; Mayo Clinic 2022; Sufrin 2018). However, research suggests that mothers who have been incarcerated display increased involvement in their children’s lives (Branigan et al. 2023; Cavanagh et al. 2024). Reorienting the narrative from “bad” to “sick” empowers individuals to be the parent their child needs, and the idea of recovery as a tool to reconnect with children reflects the quest narrative ideal to frame illness as mechanism for building community and restoring relationships. Participants felt more prepared to address child SUD risk due to their own experiences and strategized on effective ways to impart wisdom. Randles (2021) coined the phrase “innovative mothering” to describe how mothers in poverty strategize to meet material and social needs of children while confronting gender, race, and class stigma. Similarly, the Photovoice participants are “innovative parenting” through their efforts to ensure child well-being in the short- and long-term. Despite the absence of support structures, participants exerted parental agency by having frequent, open conversations with children about their substance use history, and focus groups discussions of parent-child communication strategies evoked feelings of defiance against the lack of communication in their own upbringings and institutional involvement.

The results also underscore the need to reapproach parental separation and reunification through a harm reduction lens, which aligns with a quest narrative of SUD. The harm reduction framework prioritizes reducing the negative consequences of risky health behaviors over behavior cessation (Marlatt 1996). Harm reduction has been gaining traction within the SUD treatment field, which views recovery as a life-long process in which return to use may occur and is moving away from abstinence as a measure of recovery success (Substance Abuse and Mental Health Services Administration 2023). However, the CWS enforces a restitution narrative by mandating total abstinence via drug testing and completion of often-rigid treatment programs, which leaves little to no room for return to use (Bosk et al. 2019; Marsh and Smith 2011). Additionally, parents with system involvement face continued surveillance by the CLS and CWS (Samat et al. 2021; Western and Harding 2022), and participants noted that the added requirements to regain parental rights along with CLS supervision obligations can trigger return to use. The restitution narrative demands treatment-seeking behavior from sick individuals and thus assumes that intervention produces positive outcomes; however, for individuals with SUD, restitution often entails punitive carceral structures, and release from incarceration is associated with heightened risk of overdose death (Binswanger et al. 2007; Hartung et al. 2023). Therefore, the common means of becoming well (i.e., CLS/CWS involvement) perpetuate harm for those with SUD and does not take individual quests of wellness into consideration. The Family First Prevention Services Act (FFPSA) enacted in 2018 allocates federal funds for implementation of evidence-based preventative practices in child welfare agencies to incentivize family preservation (Lindell et al. 2020). While the FFPSA resources may enable CWS agencies to support parents with SUD in their innovative parenting, very few states have utilized FFPSA funding for preventative services (Children’s Bureau 2023). Future research should analyze the structural and cultural barriers to FFPSA preventative service uptake among CWS agencies.

Limitations

HCS Photovoice participants were recruited through community coalitions and self-identified as motivated to discuss the impacts of the opioid epidemic on their communities; thus, Photovoice participants may not be representative of their communities and individuals not recruited into the study. For example, structural racism embedded into the CLS and CWS has resulted in gross overrepresentation of minoritized racial and ethnic groups in CLS and CWS agencies (Baughman et al. 2021; Merritt 2021; Samat et al. 2021), particularly in the criminalization of Black motherhood (Harp and Bunting 2020; Roberts 2022). Our predominantly-white sample does not reflect this egregious overrepresentation. Future research efforts should prioritize inclusive recruitment strategies to ensure equitable opportunities for people of color to contribute to community-engaged research related to SUD and parenting experiences. Additionally, Photovoice participants did not identify and select SUD and parenting as a photo-topic; rather, conversations about parenting and SUD were interwoven throughout group discussions, and most participants self-identified as parents over the course of the study. There may be aspects of parenting and SUD not represented by this analysis, and additional Photovoice research on parental SUD recovery narratives should be designed to prospectively recruit diverse parents with SUD and CLS/CWS involvement to gain a more robust dataset specific to parenting and SUD. Similarly, the researchers did not survey participants on CLS and/or CWS involvement as that was not part of the larger HCS project, but this should be considered in future participatory research.

CONCLUSIONS

Parental SUD recovery narratives are informed by social interactions, health systems, and CLS and CWS practices. Institutional enforcement of social norms related to substance use are reflected in the extensive criminalization and stigmatization of SUD, particularly for parents whose SUD has resulted in both CLS and CWS involvement. However, the quest narrative is a more meaningful heuristic for understanding lived experience with SUD and parenthood than the restitution narratives of the CLS and CWS because it accounts for participants’ desires of self-improvement and reconnection with family through the recovery process. Increasing supports and removing reunification barriers for parents in recovery will both improve health outcomes in this population as well as address the negative consequences of substance use on children.

Figure 1: Burdensome institutional requirements.

Figure 1:

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Figure 2: “Breaking the chains” of substance use.

Figure 2:

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Figure 3: Parental and community responsibility for what kids know about substance use.

Figure 3:

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Acknowledgments:

The authors would like to acknowledge the HCS Photovoice participants for their valuable insights into community strengths and concerns related to the opioid epidemic, as well as the research staff who facilitated the Photovoice focus group sessions.

Funding Statement:

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®) Initiative under award numbers UM1DA049394, UM1DA049406, UM1DA049412, UM1DA049415, UM1DA049417 (ClinicalTrials.gov Identifier: NCT04111939). This study protocol (Pro00038088) was approved by Advarra Inc., the HEALing Communities Study single Institutional Review Board. 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. This research was also supported by a National Institute on Drug Abuse R36 dissertation award (R36DA061317). 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®.

Footnotes

Conflict of Interests Disclosure: The authors have no conflicts of interest to report.

Ethics Approval Statement: This study protocol (Pro00038088) was approved by Advarra Inc., the HCS single Institutional Review Board.

Patient Consent Statement: Participants provided verbal consent to participate in the study and obtained documented consent for any identifiable photographs that were taken.

Data Availability Statement:

Please contact Marisa Booty at marisa.booty@uky.edu or Margaret McGladrey at margaret.mcgladrey@uky.edu for data inquiries.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

Please contact Marisa Booty at marisa.booty@uky.edu or Margaret McGladrey at margaret.mcgladrey@uky.edu for data inquiries.

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