“Every time I tell my story I learn something new”: Voice and inclusion in research with Black women with histories of substance use and incarceration

Institutional review and challenges to anti-oppressive research inquiry

Amid the attention toward safeguarding the rights of vulnerable populations, counter concerns have emerged questioning whether gatekeeping procedures enacted in the name of human subject protection may actually potentiate harm through epistemic exclusion. That is, if we exclude participants from research on the grounds that they are too vulnerable to consent or are more likely to suffer harm, our cache of knowledge about marginalized groups may be lacking or systematically biased (Hardesty and Gunn, 2019; Iphofen and Tolich, 2018). With an eye to the interpenetration of power and representation, anti-oppressive researchers have prioritized insider, firsthand accounts as techniques for assuaging power differentials in the research process and privileging the knowledge and accounts of marginalized populations (Brown and Strega, 2005; Etherington, 2004).

Indeed, research efforts are challenging the ethical concept of vulnerability (Iphofen and Tolich, 2018) and framing research participation as an opportunity for individuals to tell their narratives on their own terms and elucidate their challenges to others (East et al., 2010). At the community level, research participation has been levied as a political strategy for redressing biased knowledge and knowledge production (Iphofen and Tolich, 2018), and is regarded as an act of resistance which allows populations to tell their collective stories in ways rarely communicated (Brown and Strega, 2005). At the individual level, the research endeavor can become a potentially empowering, even therapeutic context for people to reframe the meanings they attach to life experiences and vulnerabilities (Holloway and Freshwater, 2007).

With a commitment to accounting for the perspectives of the oppressed in qualitative research, this study focuses on Black women with substance use and incarceration histories who are currently engaged in community-based supervision. More specifically, women were asked to talk about the factors that shaped their decision to participate in the study, their perceptions of the research process, itself, and how the process of talking about stressful experiences shapes their wellbeing as they recover from addiction and past trauma.

Women, incarceration and reentry

Over the past five decades, the population of incarcerated women in US prison and jails has increased by 14%, outpacing the corresponding rate of increase of 7% for males (Belknap and Holsinger 2006). Black women have experienced the greatest upsurge in incarceration, with rates of imprisonment at 97 per 100,000 compared to 49 per 100,000 for White women (Carson, 2015). This rise in predominantly Black female imprisonment can be attributed to both the massive impact of stringent drug policies, as well as higher rates of co-occurring mental health disorders and substance use which disproportionately shape women’s pathways into criminal justice involvement (Van Olphen et al., 2009).

Incarcerated women are 10 times more likely to have histories of substance use problems than women in the general population (Charles et al., 2003). Unfortunately, women with substance use disorders tend to have longer addiction trajectories than men and are more likely to have disorders that are linked to and/or precipitated by trauma (McKim, 2017). Approximately, 70% of women in prisons report histories of sexual and physical abuse experienced as a child and/or an adult (Messina et al., 2006). Trauma and mental health problems often co-occur; incarcerated women are three times more likely than men to experience post-traumatic stress disorder with rates of 40% and 13%, respectively (Carson, 2015). Unfortunately, the criminalization of mental illness, trauma and addiction not only shapes women’s pathways into incarceration, but their reentry.

Reintegrating back into society post-incarceration is a complex transition in itself, as people must often navigate illnesses such as substance abuse and mental illness (Carson, 2015). In addition, they also face structural barriers such as laws that disenfranchise people with felony convictions and impede their access to needed resources such as employment, housing, substance use treatment, and education (McKim, 2017; Van Olphen et al., 2009). For instance, some states require women to prove they are substance use abstinent before receiving benefits, making it more challenging for women to navigate reentry post-incarceration while recovering from substance use (Van Olphen et al., 2009). Formerly incarcerated individuals also encounter barriers to obtaining education and employment; they may be disbarred from various job opportunities and college funding due to felony convictions (Van Olphen et al., 2009).

Moreover, formerly incarcerated women face stigmatization that goes beyond the stigma of being imprisoned that men may face; formerly incarcerated women are often regarded as having violated cultural norms related to societal expectations of proper woman- and motherhood (Covington, 2008; Gunn et al., 2018; O’Brien, 2001). When we consider how stigmas of “black criminality” overlap with already tarnished womanhood as a result of one’s engagement in crime and substance use, it becomes evident how barriers to reentry can become more problematic for Black women (Richie, 2012). Indeed, this current examination is part of a larger study investigating stigma experiences among formerly incarcerated Black women attending a substance use treatment program as part of their reentry service plans. Such research is crucial for creating responsive treatment programs and services; yet, the manifold problems faced by formerly incarcerated women of color also make them vulnerable research participants.

Risks and benefits of research participation

Scholars have explored potential research risks faced by populations who share many lived experiences with the women in this sample. For example, women who had engaged in sex work reported a number of concerns related to research participation, including fear of confidentiality breaches and public shaming that could result if their participation in the sex economy was revealed (Goldenberg, 2005; Urada and Simmons, 2014). But study participation is not only or primarily experienced as risky. Respondents in a study by Bell and Salmon (2011), who researched women with histories of drug use, identified risks such as interactions with researchers described as condescending and disrespectful. This finding underscores the importance of building trust and rapport with research participants. Despite this risk, participants still felt motivated to participate in research both because they received compensation for doing so, and because they felt an obligation to promote awareness about their experiences; they viewed research participation as a way to give back to their communities (Bell and Salmon, 2011). Scholars have also explored whether research with populations who have survived trauma and interpersonal violence created additional stress and discomfort for participants (Campbell and Adams, 2009). Respondents reported that their desire to raise awareness and contribute to knowledge rendered research participation beneficial, despite the anticipated and realized risks of distress due to recalling and discussing sensitive topics.

With evidence suggesting that research participation confers myriad potential risks and benefits, this study aims to garner a deeper understanding of how Black, formerly incarcerated women with substance use histories experienced their participation in a qualitative interview study. While there has been research into the experiences of marginalized populations who engage in research, there is still need to increase understanding of the research engagement experiences of populations managing various intersecting challenges related to their substance use post-incarceration as they navigate multiple overlapping surveillance systems. This study hopes to nuance understandings of this vulnerable group while promoting attuned and socially just research practices, reintegration services, and policies.

Data collection

This analysis draws on a subset of data from a larger parent study which explores women’s experiences with incarceration, substance use, and their reentry process, followed by an ethics-specific debriefing. This debriefing, which this article draws upon, asks respondents how it felt for them to answer questions regarding their perceptions of intersectional stigma, particularly how society views them as Black women with experiences with incarceration and substance use. Respondents were also asked about their perceptions regarding the risks and benefits of participating in research that explores their highly sensitive histories of trauma, addiction, and incarceration. Moreover, the first author asked them about ways the interview process could be improved and how the role of the interviewer may shape the way they experience the research process. Probes were used to more deeply explore whether researcher demographic characteristics such as race, gender, and previous drug and incarceration experiences shape study participation.

This study was developed and carried out in conjunction with a community advisory board (CAB) assembled specifically for this project. This CAB comprised community members, all of whom had direct experience working in criminal justice and drug treatment fields. All individuals who were invited to join the CAB agreed to serve. In all, the CAB was consulted three times throughout the course of this study: while developing and pilot-testing the initial interview guide, in the midst of data analysis when the first author was identifying and refining key themes, and while organizing health and wellness activities geared toward formerly incarcerated people managing substance use. Presentations at local reform events to offer free health and wellness activities for community members were motivated, in part, by the ethos of anti-oppressive research, an approach to knowledge production that conceives the research process as a site for contesting structural oppression and empowering marginalized groups.

While the study specifically utilized interviews as the primary mode of data collection, the first author actively immersed in the reentry, substance use treatment community for approximately 7 months in efforts to understand the population’s needs. ¹ During this timeframe, the researcher attended the substance use recovery meetings that eventually became the site for recruitment. This allowed the principal investigator to establish rapport with both treatment program participants and staff, and also to member check interpretations of the data as the study progressed. To promote clarity and high ethical standards, the first author continually reminded potential participants that this study was separate from any mandated programming obligations they had to fulfill, and that their participation or decision not to participate would have no influence on their programming status. Moreover, the first author engaged in a thoughtful process of introducing herself and the study’s aims in efforts to prevent her role from being conflated with those of treatment providers.

Extended immersion and member checking promoted rapport with both staff and participants and deepened interpretation of the data. In addition, the auditing process consisted of the first author reflecting on how her social location shapes the research and analytic process. All of the authors identify as women from modest economic backgrounds, who have spent the majority of their academic training in predominantly White institutions. Three of the authors, including the first author, are Black, and all of the authors collectively have decades of experience that span community organizing and teaching and research in the fields of social work, psychology, and criminal justice reform. The background experiences of the first author, particularly in social work and criminal justice reform, combined with intersecting race and gender characteristics undoubtedly shaped her recruitment process, and ability to build trust and engage women in the study. As a whole, these strategies—assembling a CAB, extended engagement in the community, continuous process of reflexivity, and member checking interpretations—strengthen the credibility and internal validity of the results (Padgett, 2016).

All study procedures were approved by IRB at the Principal Investigator’s university, and by the funding institution, Fordham University’s Research Ethics Training Institute. Each participant provided written informed consent to participate in an audio-recorded, semi-structured interview and was compensated with US$40. The participants represent a highly vulnerable population, seeking to reintegrate back into society while recovering from addiction. Many of the participants cited not being able to stay with family members as a result of their vulnerable circumstances as well as court mandates, leaving the women to independently navigate precarious living circumstances. In addition, all of the participants were currently on parole and, therefore, were required to attend several weekly workshops to meet community-correction mandates for release. As such, participation in this process, despite their significant challenges, represented a sacrifice; considering this, the first author chose to compensate participants at a rate that recognized their heightened level of vulnerability and stress. Compensating participants at a rate attuned to their vulnerability can promote the recruitment of hard-to reach populations, enhance the validity and social value of research, and establish trust (Abadie et al., 2019).

The interviews took place at the first author’s university office located in the central downtown area of the city where public transportation is the most readily available. Therefore, a downtown location provided participants easy access to the interview site. When asked during the pilot interviewing stage about interview characteristics that could be improved, many women stated their satisfaction with the interview site. In the pilot interviews, respondents stated that the university downtown center was known as “a place that the community can come to hear talks and it has an open feel,” and another respondent stated, “it was less likely [she] would run into anyone that [she] knew there.” Another study participant gave insights into how the site could shape the interviewee’s sense of self stating “to me this feels like you are inviting me into a place of respect. So often we are not shown respect or value in that way. You are inviting me to your office and that to me shows that you are valuing me.” As a result of these positive responses, the first author decided to offer her office space as an interview site. Interviews lasted between 75 minutes and 90 minutes. All participant names referenced in this study are pseudonyms to safeguard anonymity.

Data analysis

Data analysis was performed utilizing content-based thematic analysis, an iterative process of reviewing and coding transcribed data to identify key themes and patterns. Coding proceeded in a two-stage deductive or inductive process. In order to enhance analytic rigor, three individuals participated in the coding process. Using an initial code list based on the aims of the parent study and previous research findings exploring these topics (citation withheld for review), the three coders independently coded approximately 25% of the transcripts.

After multiple interview transcripts were read thoroughly by all coders, open line-by-line coding was used to reduce the data into codes. Next, constant comparison methods involved evaluating earlier codes against emerging codes, collapsing redundant codes, and eliminating codes that failed to be substantiated by the data (Glaser, 1999; Strauss and Corbin, 1990). To best refine and evaluate codes collaboratively in this second stage, the three researchers met for consensus sessions to discuss emergent themes and enhance the code list. The meetings were a time to discuss contrasting themes, discrepancies, and discuss new codes not previously developed. Once a refined code list was created, the coders proceeded to evaluate the remainder of the interviews, while continuing to consult periodically to discuss findings and reach consensus.

A final step was used by the first author to develop proposed relationships between existing codes and concepts forming analytic explanations (Glaser, 1999). The analysis in this article focuses specifically on identifying relationships within the interview data regarding women’s perceptions of their participation in the parent study. To facilitate this phase of analysis, the first author employed some of the heuristic “six Cs”: Causes, Contexts, Consequences, Conditions, Covariances, and/or Contingencies (Glaser, 1999). In this analytic step, the researcher asks questions of the data, selectively using any or all of the six Cs, to establish the conceptual relationships between emerging themes or concepts. As such, the analysis within this article presents findings from a subset of the six Cs: (1) How do women perceive the research context and (2) what are the conditions shaping their engagement in research? These domains are further discussed within the “Findings” section.

Wanting to be heard despite fears

For women with long histories of incarceration and substance use disorders who are still embedded in the therapeutic arm of the criminal justice system, the research interview can provide a non-evaluative context to be heard on her own terms. Tamika’s passage speaks to the process of disclosing within the research inquiry process:

I just want to tell you [researcher] how I’m feeling, and what’s on my mind right now. I don’t need to go see your mental health people, then they talk about what kind of medication I might need, or I’m so crazy I might can’t take care of my kid . . . So no, it [the interview] didn’t bother me. It kind of felt good because I haven’t spoke about it in a while. I was really excited because I wanted to be heard. A lot of people don’t want to hear us . . .

As Tamika points out, women in recovery who are also engaged in the post-incarceration reentry process are continually interfacing with health and social service professionals intent on labeling or diagnosing them—and otherwise making life-changing professional judgments without “hearing” them. In other words, the goal-directed activities of diagnosis and assessment—though they commonly include eliciting biographical information about one’s life—preclude being heard. As a contrast, telling one’s story during a research interview provides a context where women are able to disclose without fear of the story being examined for the ways in which it highlights illness, deficiencies, and the consequent need for medications and child welfare interventions.

Some participants worried that research interviews would lead to consequential judgments vis-à-vis the criminal justice system, if researchers disclosed their information to social service and criminal justice workers. Rhonda explained this line of thinking as follows:

Some women may think, “What are you going to do with this information? Why do you want to know?.” Some women are afraid to trust, they don’t know what will be done with it. When you have had histories of being used, it’s hard to trust, my main concern was if I was going to get in trouble. I’m on parole. Should I be telling my business? So at first, I was kind of skeptical.

For marginalized populations, trusting a researcher by disclosing their lived experiences may place them in a vulnerable position. Concerns may arise as to whether a researcher may share their information in ways that may harm their reentry process, such as with parole. Like Rhonda, many of the women discuss tenuous relationships with community-correction systems where they are often fearful of committing a parole violation for reasons as seemingly innocuous as being 5 minutes late for curfew. Thus, women’s initial concerns about potential breaches in researcher confidentiality—specifically, whether or not a researcher will share information—are rooted in significant fears regarding the many threats to their freedom that can lead to additional surveillance and possibly re-incarceration.

The temporality of Rhonda’s quote is also telling. She reports being skeptical about the research interview, at first, implying that she was less skeptical when she was asked this question than she had been previously, and that a participant’s stance on the safeness of the interview can shift over time. Thus, we see that the interview can be experienced as a positive context for being heard, provided that the participant trusts the researcher, and that conveying a non-judgmental attitude is crucial for building the necessary trust with participants.

Notably, for Tamika and other participants, the research interview could be a therapeutic space, but not because the researcher diagnosed or gave advice, but because they created a place where the research participant acted as both author and audience of an unfolding narrative.

Being author and audience of one’s story

As discussed earlier, women in this study viewed the interview process as one where they can be heard in ways that countered their experiences disclosing in other spaces. However, they also saw the research interview as a transformative process where they can narrate and reframe their story on their own terms. Moreover, it promoted self-revelation and even continued recovery. Karen, who was in recovery from heroin addiction, spoke of the benefits of narrating and consuming a story about the self:

I like talking about it because I hear myself. I like hearing my past and what I have been through cause it helps me remember where I been and how far I am now. I don’t want to go back to that. Because that’s my story. Back in the day I would be ashamed, but I am not anymore. I don’t regret anything. That is my testimony . . . I have to tell my story.

While Tamika thought the non-diagnostic or non-therapeutic purpose of the interview opened up a space to be heard, many participants, like Sandy, thought that hearing themselves in the research interview—or, more broadly, that any instance of talking—was therapeutic. She experienced the non-judgmental “listening ear” of the researcher as beneficial precisely because it was therapeutic:

Sometimes you ask the questions, and maybe its triggering something, but you might need that trigger so it can pull something out of you and release something so you are not walking around holding onto that, angry but you don’t know why you are angry . . . You really need to get it out, speak it to someone who will not judge you, a listening ear. You never know what kinds of questions you need asked to just trigger something to get it out.

Note how Sandy disembodies listening in this passage. Presumably, a “listening ear” does not speak back; but Sandy also refers, perhaps paradoxically, to the value of the interviewer’s triggering questions—and asking questions certainly entails speaking. The listening ear thus appears to refer to a person (researcher) who can elicit talk without judgment, allowing the speaker and co-listener to “pull something [hurtful] out of you,” in part by prompting the speaker to stumble upon a transformative insight while in the midst of talk. The notion that talk can be transformative is a foundational premise of many “talk therapies,” so it is not surprising that women embedded in talk-intensive social services would experience the non-treatment context of the research interview as therapeutically significant.

Kim also remarks on the role of the interviewer in shaping a participant’s engagement as we see here:

Because from the moment you started the interview you spoke to me like, “I’m impressed that you are going through these things and you are managing them . . .” You made me feel like you noticed my efforts in trying to overcome them and that my efforts were validated. People just want to be validated. Even if I am hooker, dammit, validate me.

As evidenced from Kim’s remarks, an interviewer can play a significant part in creating an emotionally safe context—specifically, one that offers validation in disclosure. A researcher’s reactions can signify respect for a participant’s story, and in this case, acknowledgment of one’s journey to recovery from substance abuse. While the interviewer may see their role as someone who offers probes which encourage storytelling, the participant may gather deeper meaning from the interactions which then shapes not just engagement, but how they feel and view the researcher. As Kim states, even a “hooker” needs validation, and the researcher’s reactions provide that. Considering the level of societal and internal stigmas that this community of women experience due to their past incarceration, drug use, and how that may intersect with engagement in sex work, perceiving validation in a non-therapeutic interview context can be significant.

Eliciting and benchmarking personal growth—or the lack thereof

Several participants experienced the research interview either as a transformative interaction or as a storytelling venture that, if not transformative in and of itself, allowed them to track and recognize improvement. Sandy did not describe the interview as an instance of hearing herself, but she too experienced the interview as a benchmark for personal growth and transformation:

Talking about it took me back because sometimes you can forget. It made me kind of bring up some small things that made me appreciate even more what I have right now. Not saying we forget where we come from, but sometimes we keep just thinking about those little things . . . It just kind of brought joy to me to know what I got now. I can see my kids. I couldn’t while in my addiction.

Sandy describes having forgotten the turmoil in her past and how recalling even “small things” led her to appreciate her present life. Considering the barriers that many formerly incarcerated women with competing recovery needs continue to face, this process of remembering can be incredibly useful and health-promoting. Indeed, the transformation theme occurred across many of the interviews and was perceived as both a benefit of research participation, a potential barrier to recalling one’s prior experiences, and as a potential danger or trigger. Karen spoke to this transformation when she said, “I don’t regret anything. That is my testimony . . . I have to tell my story.”

Telling one’s story was deemed more precarious if it led one to the conclusion that she had not “done the work” or undergone the necessary transformation, as Marlie pointed out,

It is part of your story, yeah, but sometimes it keeps bothering you and you don’t want to talk about it. Sometimes you haven’t accepted your past, and you may not be open to sharing it, because you haven’t done the work, you aren’t recovered from it. Maybe you are still trying to figure out what you are doing yourself.

For the respondent who has not undergone a transformation, talking could lead to the recognition that one had not yet changed—or worse, according to the logic of personal transformation that undergirds American substance abuse recovery discourses—that change may not be necessary. Talk, according to Mary, could stir up demons without “releasing them” (see Sandy’s quote earlier):

Sometimes it could bother women talking about it, sometimes talking about things can stir up those demons. Thinking about bad times they might start thinking about good times. It wasn’t all bad using, just didn’t like the consequences.

In this quote, Mary uses the metaphor “demons” to describe happy memories that occurred during active substance abuse or dependence. Stirring up these happy memories could thus interrupt recovery by making drug use seem not all bad. Others worried about stirring up triggers—not the positive kind that Tanya described as “pulling something out” or “releasing something [negative or painful].” These respondents used the word “trigger” to describe events that incite past trauma. Indeed, Carrie implied that it is simultaneously possible to have undergone a transformation when she described a hypothetical respondent, and to be triggered by an interview:

It takes you back to a time you don’t wanna to remember. People may say, “That’s not me anymore, I have moved beyond that. I gave myself to God now,” and they won’t talk about the things they’ve done . . . it could trigger some traumatic things.

The change Carrie describes here may signify both spiritual and religious transformation, as well as a shift in personhood and how a person views herself. When one aligns their behaviors with what they believe is expected by a higher power, it becomes harder to remember and discuss behaviors that may be deemed as immoral or misaligned with their new self. Moreover, doing so could disrupt the new person. Taken together, participants’ responses suggest that research interviews can be experienced as de- or re-traumatizing, depending upon a participant’s past history, treatment status, and perspective.

Giving back

Although respondents frequently weighed the risks and benefits of research participation in terms of personal calculus, many also viewed research as an opportunity to give back. The research interview was not only promoting self-healing, but eliciting the desire to help others as communicated by Faith:

I feel heard. I am actually smiling now. Like, “Wow, my life has changed.” It just kinda stirred up something in me, it makes me want to help somebody even more . . . I want to be able say I survived. That there is a chance, there is hope, we can always change.

Faith’s quote speaks to how the storytelling process allows participants to not only reflect on their own transformation but illustrates how sharing these stories can elicit the desire to help others transform and affect greater societal change. After disclosing her own story and remembering her past and the positive changes that have occurred, Faith started to feel compelled to help someone else. She desires to communicate a message of hope and positive change to others facing similar addiction problems. This view of the research interview as not only promoting self-healing, but potentially cultivating the desire to help others can be seen in Brittany’s statement:

I also want to do some education . . . Not necessarily being a drug counselor, but connect people with the programs they need, even just motivationally speaking to somebody. To do this is to be comfortable telling your story to reach others in need. So, for me, it’s not an option, I must do it.

Brittany also wants to be an educator through the telling of her own story. In fact, Brittany says this is more than just a desire of using one’s story to uplift others; for her, this is something she must do; it is almost a calling. Many of the women’s stories positioned “giving back” as a critical part of one’s own recovery as seen here with Rebecca:

I also believe in giving back. I believe whatever you have, you only can keep it [recovery] if you give it away. I don’t want anyone to go through what I did if they can help it. When you have it what do you do when you come home, I’m giving back. You are getting firsthand knowledge from me of my experience in prison, coming home . . . hopefully this information can help someone.

As stated here, in order for an individual to sustain their own recovery, they must help others navigate their own addictions. For Rebecca, that means participating in the interview and sharing her past and current reentry process in efforts to provide needed understanding and knowledge to others. Essentially, it is in looking beyond one’s own needs to help others that a woman comes to sustain and more importantly “earn” her recovery. Significantly, giving back is part of the transformational process of recovery detailed in Alcoholic Anonymous’ 12 Steps program. Thus, it is quite understandable that the giving back narrative is a significant and embedded aspect of the women’s sense of effective recovery strategies.

Limitations

While this study provides important insights about engaging in research with vulnerable populations, there are some limitations to consider. This study, like others, may be influenced by social desirability bias in participant responding. Distrust and fear of societal persecution can impact participants’ reporting of sensitive behaviors, particularly among already stigmatized populations (Guest et al., 2006). Moreover, vulnerable groups often worry about whether their participation will be kept confidential, which can shape the level at which they disclose. With that being said, research studies have attempted to build greater trust through being responsive to characteristics that may promote collective trust, such as the use of gender and/or race concordance for exploring particularly sensitive topics that speak to gendered and racialized forms of oppression. This study utilizes these strategies in efforts to promote respondents’ sense of agency and emotional safety; this included minimizing the fear that participants’ disclosures would be mined for medical or criminal content. However, the fact that the first author shares the gender and racial identity of the respondents may also promote respondents’ proclivity to provide socially desirable answers. Furthermore, the first author devoted significant efforts to explaining to participants that the interview process was a safe space for exploring their viewpoints. In addition, the first author reminded respondents that they could refrain from answering questions and still receive compensation.

Finally, the participants in the study were drawn from a convenience sample of women engaged in substance use treatment as part of their reentry programming. This study cannot purport to speak to the needs of all recently released women, including those of different racial backgrounds who may not have access to gender-specific programming. Reentry programs vary geographically in ways that can shape how one perceives their reintegration process, their ability to access needed support, and possibly their engagement in the research process. This must be considered as a potential limitation of how we apply the findings more broadly.