726573 research-article2017
HEBXXX10.1177/1090198117726573Health Education & BehaviorSprague et al.
Article
Qualitative Research Methods to Advance Research on Health Inequities Among Previously Incarcerated Women Living With HIV in Alabama
Health Education & Behavior 1–12 © 2017 Society for Public Health Education Reprints and permissions: sagepub.com/journalsPermissions.nav https://doi.org/10.1177/1090198117726573 DOI: 10.1177/1090198117726573 journals.sagepub.com/home/heb
Courtenay Sprague, PhD1,2, Michael L. Scanlon, MPH, MA1, and David W. Pantalone, PhD1,3
Abstract Justice-involved HIV-positive women have poor health outcomes that constitute health inequities. Researchers have yet to embrace the range of qualitative methods to elucidate how psychosocial histories are connected to pathways of vulnerability to HIV and incarceration for this key population. We used life course narratives and intersubjectivity—predicated on interview dialogue—to investigate how familial and social settings established their social patterning of HIV, incarceration risk, and poor health. Working with two Alabama community-based organizations, we recruited and interviewed 24 HIV-positive cisgender women with cyclical incarceration. We analyzed the data by charting women’s life histories and conducting iterative content analyses. Participants described chaotic home environments, marked by exposure to trauma in childhood. The majority experienced repeated sexual and physical abuse that went undiagnosed and untreated until adulthood. Adolescence and young adulthood were characterized by onset of substance use, violent intimate partnerships, and subsequent behavioral and mental health problems. In adulthood, risk behaviors persisted for decades and women lacked mental health treatment and social support. Life course narratives and intersubjectivity contributed to knowledge by affording agency to marginalized participants to reflect on and narrate their life stories; instilling needed trust for researchers to investigate the complex risk pathways and psychosocial histories with this population; illuminating the nature, timing, sequence, and frequency of events underlying women’s vulnerability and exposure to HIV and incarceration; and clarifying that early shaping events in childhood are connected to later risk environments and behaviors in adolescence and adulthood, suggesting the need for earlier interventions than are typically proposed. Keywords correctional health, health disparities, health equity, HIV, intersubjectivity, justice-involved women, life course narratives, qualitative research methods, U.S. South Despite significant gains in the global population’s overall health in the past half century, widening social health inequalities—systematic differences in health outcomes between groups in society on the basis of race, class, income, gender, or geography—have become increasingly visible across and within countries (Anand & Peter, 2004). The influential Black Report (Gray, 1982) and the Whitehall study (Marmot & Shipley, 2006) in the United Kingdom, along with more recent global efforts by the World Health Organization’s Commission on the Social Determinants of Health (2008), have elucidated some of the complex mechanisms through which social factors produce health inequalities. Due to the visibility of these landmark inquiries, both policy makers and citizens are more aware of persistent health inequalities in society and of the need to integrate a focus on improving health into other social policies (Leppo, Ollla, Pena, Wismar, & Cook, 2013).
Much of this work is conducted under the umbrella of health equity. While the terms health inequalities, health disparities, and health inequities are sometimes used interchangeably (Braveman, 2006), Braveman and Gruskin (2003) define health equity as “the absence of systematic disparities in health (or in the major social determinants of health) between social groups who have 1
University of Massachusetts Boston, Boston, MA, USA University of the Witwatersrand, Johannesburg, South Africa 3 The Fenway Institute, Fenway Health, Boston, MA, USA 2
Corresponding Author: Courtenay Sprague, Associate Professor, Department of Conflict Resolution, Human Security & Global Governance, University of Massachusetts Boston, 100 Morrissey Boulevard, Boston, MA 02125, USA. Email:
[email protected]
2 different levels of underlying social advantage/disadvantage—that is, different positions in a social hierarchy” (p. 254). Thus, health inequities may be characterized as a subset of health inequalities that are frequent, substantial, persistent (nonrandom); associated with social disadvantage; and deemed unfair and unjust. Moreover, as social disadvantage underpins health inequities, these inequities are understood to be avoidable and modifiable through both public policy and behavioral interventions, particularly those targeting social factors—and should be a major focus of health researchers (Evans, Whitehead, Diderichsen, Bhuiya, & Wirth, 2001). The U.S. Healthy People 2020 policy framework seeks to “achieve health equity, eliminate disparities, and improve the health of all groups” (U.S. Department of Health & Human Services [DHHS], n.d.). This commitment to health equity presents opportunities for public health practitioners and researchers to further probe what Marmot and colleagues call the “causes of the causes,” or “the fundamental structures of social hierarchy, social arrangements, and the socially determined conditions these create in which people grow, live, work, and age” (Marmot, 2007, p. 1153). The question remains as to how researchers can best probe these “causes of the causes” to promote health equity (Blas et al. 2008). As researchers have engaged more deeply with health inequities, it has become clear that there is a need for the development and utilization of novel research methods that can more nimbly grasp how social context, social stratification, and related social processes shape health and functioning—to inform evidence-based policy recommendations (Diderichsen, Evans, & Whitehead, 2001; Ruano et al., 2017). Qualitative research methods have many positive attributes, relative to quantitative approaches, and are understood to offer distinctive strengths in engaging with the multilevel social processes that underpin the social patterning of disease. Most notably, they are suitable for interdisciplinary investigations into webs of complex and interacting individual, social, and contextual factors—especially those that affect marginalized populations, for whom quantitative data (with random or representative samples) are not readily available (Greenhalgh et al., 2016; Popay & Graves, 2000; Zerden, Scheyett, & Fogel, 2014). Furthermore, it is important for researchers to consider systematically their own role and biases in the process of research. Researchers are positioned participants within research investigations who influence the research process and what type of knowledge is valued and produced in society (Ritchie & Lewis, 2012; Thomas, Quinn, Butler, Fryer, & Garza, 2011). Unfortunately, the reality is that researchers themselves are located within the very social hierarchy that shapes the poor health of socially disadvantaged individuals. Qualitative research methods acknowledge and allow space for this fact.
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Life Course Narratives and Intersubjectivity as Methods for Health Equity Research Life course narratives, sometimes referred to as life history narratives, have long been employed as a research method across different social science fields (Bertaux, 1981). Narratives offer an ethnographic approach that engages with participants in a prolonged, in-depth manner to reflect and share important events in their life and, especially, to highlight those they perceive as most influential—often in relation to a later outcome or life event—and to explain why (Moustakas, 1994). The storytelling aspect within narrative approaches often serves as a way to offer participants “voice” and agency that are often denied them by society, particularly for members of vulnerable or stigmatized groups, as is typically the case with people living with HIV and those who have been incarcerated (Goffman, 1963; Sprague, Scanlon, Radhakrishnan, & Pantalone, 2016). For the researchers, the storytelling aspect can assist in uncovering nuance by creating the opportunity to probe the interactive dimensions of health and social life in a conversational style (Wang & Geale, 2015). Through this technique, interviewers explore, interpret, and verify the meaning that participants ascribe to events, as well as temporal, contextual, familial, and situational factors that influence the consequences of those events in the respondents’ lives (Denzin, 1989). This subjective view offers researchers an important window into the lived experience of marginalized individuals, while also probing notions of health as a social construct, perceptions of health and social determinants thereof, and health or risk behaviors (Jacobsen, 2012). Recent work on life course theory in human development can be traced to the work of sociologist Elder (1994, 1998), who was concerned with social institutions, the social trajectories of individuals, and their influence on development pathways. In public health, life course theory has had a major influence in the subfield of epidemiology (Graham, 2002; Kuh, Ben-Shlomo, Lynch, Hallqvist, & Power, 2003). Using a life course approach that employs qualitative narratives recognizes mutually interactive, concentric influences over the life span and allows researchers to attend to both change and continuity, while locating groups with poor health within their specific social and risk environments (Wang & Geale, 2015). Intersubjectivity, also called intersubjective dialogue, was an added qualitative method used in this study. Stern (2013) defines intersubjectivity as integrally interconnected with empathy: “the capacity to share, know, understand, empathize with, feel, participate in, resonate with, and enter into the lived subjective experience of another” (p. 78). Intersubjectivity has been adopted by equity researchers as a method that acknowledges the importance of what takes place within the research
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Sprague et al. process—the content and the process of the interview dialogue itself and the potential for change to be experienced by researchers and the researched. The intersubjective dialogue, established within the interview process, engages disadvantaged participants in in-depth interviews (IDIs) about intimate events taking place in their lives. Doing so hinges on securing access to the study population, which was made possible by working with local community-based organizations (CBOs) trusted by the study participants (Christopher, Watts, McCormick, & Young, 2008). Additionally, for researchers to gain access to the interior world of participants requires a compact of trust to be established. Securing this trust—given the divisions of power, class, education, and experience that typically separate researchers from participants—necessitates a bridge that can close the social and power distance between the two parties. Intersubjective dialogue creates this “bridge” between interviewer and interviewee. While dialogue is the process by which the researcher can enter the participant’s story, empathy is the vehicle that makes the journey, and bidirectional learning, possible. Indeed, as experts note, intersubjective dialogue hinges on the two-way process of learning within the research engagement, which is seen as a “cocreation” in which the process of probing the participants’ experiences brings forth new understanding for both individuals—the interviewer and the interviewee—and presents risks and challenges for both parties that must be managed by the researcher (Tazreiter, Weber, Pickering, Segrave, & McKernan, 2016). This is in keeping with challenges to the classical mode of scientific research more generally to embrace the role of the social environment and social process in advancements in scientific thinking. As Stern (2013) notes, Different scientific models that address the nonlinear rather than the causal and that can deal with the spontaneous emergence of happenings from an interactive matrix. For instance, in developmental thinking, alone, the role of the social environment has become more emphasized in the emergence of language . . . meaning . . . morality . . . identity . . . and the self—all of which are now seen largely in the light of their social co-creation. (p. 78)
In this study, we elected to employ qualitative methods of life course narratives and intersubjectivity via IDIs to facilitate direct engagement with the study population within the context of their social setting (Ritchie & Lewis, 2012). The election of individual life course narratives as a method was (a) based on extant literature (largely quantitative) indicating that formative experiences in childhood and young adulthood—such as physical, sexual, and substance abuse—are associated with risks of both HIV and incarceration in later life (e.g., see Dube et al., 2003; Moloney, van den Bergh, & Moller, 2009; Wu, Schairer, Dellor, & Grella, 2010; Zierler et al., 1991) and (b) selected to investigate how narratives may help untangle the web of factors and processes underlying health disparities for this population. By employing life course narratives rooted in intersubjective assumptions of
the researcher–participant interaction, we probed processes, relationships, perceptions, and multilevel phenomena in innovative ways that fostered sharper insight into the research concern.
A Population at Risk: Justice-Involved Women in the U.S. South Justice-involved women—that is, those in contact with the criminal justice system who have been arrested, charged, convicted, and sentenced to jail or prison—are at a significantly higher risk for acquiring HIV over the life span compared to non–justice-involved women. This is due to myriad factors related to higher prevalence of sexually transmitted infections, exposure to violence and trauma, and substance use, combined with other social and structural vulnerabilities and adverse gender norms (Centers for Disease Control and Prevention [CDC], 2014, 2015a; Gupta, 2000; Quinn & Overbaugh, 2005). Ample published data show that justiceinvolved women have poorer mental and physical health, with higher rates of suicide, self-harm, anxiety, and depression, compared to incarcerated men and to men and women in the general population (Fogel & Martin, 1992; van den Bergh, Gatherer, Fraser, & Moller, 2011). A large proportion of justice-involved women report interpersonal victimization; up to 25% report experiences childhood abuse (Greenfield & Snell, 1999) and 75% report experiences of intimate partner violence (IPV) in adulthood (Browne, Miller, & Maguin, 1999). Furthermore, there are significant correlates of this interpersonal victimization, including drug or alcohol abuse, reported by up to 74% of justice-involved women (Phillips, Nixon, & Pfefferbaum, 2002). There are few longitudinal studies of “delinquent girls” and their transition to adulthood; some studies suggest that girls who engage in delinquency in adolescence (defined as participation in unlawful activity prior to age 18) transition into crime and reoffending in adulthood. These data suggest that early experiences of girls may serve as predictors of justice-involved women’s later behaviors (Benda, Corwyn, & Toombs, 2001; Warren & Rosenbaum, 1986), and reinforce a life course approach to investigate the health of this population (DeHart, Lynch, Belknap, Dass-Brailsford, & Green, 2014; Elder, 1994). The U.S. South, encompassing 17 states, is characterized by two parallel health challenges: HIV and mass incarceration. The region has become the new epicenter of the HIV epidemic in the United States, responsible for the greatest burden of HIV infection, illness, and mortality of any other region—while at the same time having the highest incarceration rates in the nation (Carson, 2014; CDC, 2015a, 2015b). Black women living in the U.S. South are disproportionately at risk for, and affected by, both HIV and incarceration, compared to women in other regions of the country (Carson, 2014; CDC, 2015b; Prejean, Tang, & Hall, 2012). The
4 Southern region is distinctive for its relatively low investment in health infrastructure and health care, including HIV providers, and high poverty compared to other U.S. regions (Health Resources and Services Administration, 2016; Lichtenstein, 2005; Pelligrino, Zaitzow, Sothern, Scribner, & Philippi, 2015; Whetten & Reif, 2006). Systematic health differences among justice-involved women, defined as a key population (UNAIDS, 2014), are frequent, substantial, persistent (not random or occasional), and associated with social disadvantage (Whitehead, 1992). The extant literature connects exposure to abuse in childhood to justice-involved women’s HIV risk and reoffending behaviors, however, researchers have not fully connected the psychosocial histories of this population to their HIV risk to inform appropriate interventions that would disrupt the mechanisms that shape poor health (Browne et al., 1999; Greenfield & Snell, 1999; Pelligrino et al., 2015; Zahn et al., 2010).
Current Study Study Population and Setting We recruited 24 participants receiving services or otherwise linked to one of two CBOs. One was located in Birmingham (in central), Alabama, and provided social and health services to men and women living with HIV; the other was a CBO based in Montgomery, Alabama (further south near the lone Alabama state women’s prison in Wetumpka), that provided social services and temporary housing to previously incarcerated women. Staff at the two CBOs assisted with recruitment and initial screening of potential participants, based on these eligibility criteria: cisgender women, over age 18, HIV-positive, indicated for HIV treatment, and selfreporting at least two incarcerations in jail or prison within the previous 4 years (indicating cyclical incarceration and multiple exposures to the criminal justice system). Interviews were conducted in private offices on-site at each of the CBOs by two researchers (CS and DWP) who have extensive expertise in qualitative methods and interviewing: together, they have 28 years combined experience with research on HIV in marginalized populations. One researcher (White, female) is a social health scientist specializing in HIV among socially marginalized women and IPV, while the other (White, male) is a clinical psychologist with expertise in HIV, mental health, substance abuse, and interpersonal victimization. Both have extensive experience using qualitative methods. Participants were provided $25 to reimburse them for their time and travel.
Data Collection We employed a five-part, semistructured question guide in conducting IDIs with 24 HIV-positive previously incarcerated women, recruited from the two sites, in January 2014. The
Health Education & Behavior 00(0) semistructured interview guide was based on an extensive review of the literature. The questions were focused on soliciting women’s life histories from childhood to the present day. The guide included an assessment of sociodemographic characteristics, and a specific focus on life experiences in childhood, adolescence, and adulthood, which probed for violence and trauma (particularly how women perceived potential pathways between violence/trauma, HIV, and the justice system), substance use, mental and psychosocial well-being (and any treatment or lack thereof), HIV risk, diagnoses, and treatment/ care prior, during, and postincarceration (interview guide available on request). Additionally, there was sufficient space for participants to speak at length on aspects of their choice and to return to elaborate on previous statements. Interviews were, thus, not time bounded and, instead, were guided by the participants’ engagement in recounting their life histories as well as interviewers’ consideration of data saturation. On average, interviews were 74 minutes in duration, ranging from 34 minutes to 134 minutes.
Data Analysis Life History Charts. We captured participants’ self-reported histories through life course narratives. We used the data to develop and chart the various “signal” events as participants described them (e.g., child or adolescent abuse, IPV and rape, deaths in the family or of friends, incarceration, HIV acquisition), based on the interview transcripts. We then created a time line from childhood to the day of the interview for each participant (see Figure 1). We charted key events and common factors for each woman. These encompassed types of violence experienced, substance use (type, patterns, duration), reoffending histories (numbers, pattern and duration), mental health issues and effects, presence or absence of psychosocial treatment or intervention, year that participants received HIV diagnoses, and number of years living with HIV. The goal of the charting was to develop a “picture” of each individual and to establish patterns and outliers within the sample (Ritchie & Lewis, 2012). Content Analysis. We then applied qualitative content analysis (Hsieh & Shannon, 2005) to identify dominant themes from the women’s narratives, focusing on repetition and importance participants attributed to events. We identified negative cases that were atypical across the interviews, finding only one. Two individuals in the initial research team independently performed the initial content analysis. They generated initial codes produced from the transcripts, while crosschecking the emerging themes by returning to the transcriptions. We built on the thematic analysis of the codes by performing comparative analysis against the transcriptions, cross-checking, coding, and recoding, to refine (Tong, Sainsbury, & Craig, 2007). As the life history charts were developed, we recoded and refined analytical themes to ensure that reported participant experiences were captured by life
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Lost Behavior baby Drug use problems, Sex and abuse suicidality solicitaon incident 1st drug use 1st cocaine (prescripon use pills)
Sex abuse incidents
Parcipant 8
Chaoc/ unloving home
Mulple rapes Homeless
Consistent sex work and substance abuse IPV (husband) Repeated robbery
Age 0
Signal events
10
20
Life events that the parcipant highlighted as shaping future behaviors, events, etc.
30
1st incarceraon (sex solicitaon)
50
40
Schizophrenia diagnosis
HIV diagnosis (no counseling)
Starts substance rehabilitaon
Repeated incarceraon
Figure 1. Life history chart for Participant 8.
Note. IPV = intimate partner violence. Illustration of a life history chart for a typical study participant. Above the age line, we denote important life events described by the participant (e.g., physical/sexual abuse, trauma, substance use, and homelessness). Horizontal lines parallel to the age line denotes the approximate length (in years) of the event. Below the age line, we denote incarceration, HIV diagnosis, and any rehabilitation events, which are highlighted as key intervention points in the literature (i.e., when an individual touches a potential point-of-care space).
stage (i.e., childhood, adolescence, young adulthood, and adulthood). We then looked at the events in relation to one another and to the weight attached by participants to sequential events (Lincoln & Guba, 1985). Using peer assessment, a third investigator verified some details and facts, corrected discrepancies against the original transcripts, and made some alterations, accordingly (Anfara, Brown, & Mangione, 2002). A different individual verified the final themes by rechecking these using the participant charts and coding. During the data analysis process, the research team met for peer debriefing. Thus, the results were developed and refined iteratively over the course of the data analyses process (Ritchie & Lewis, 2012).
Ethics Approval The study was approved by the University of Massachusetts Boston Institutional Review Board, Protocol Number 2013210. We obtained informed written consent from all participants (the study population) prior to interviews and digital recordings.
Results Interviews with 24 women were included in the analyses. Participant demographics are provided in Table 1. The narratives revealed high levels of consistency across the different life periods, and common themes emerged in terms of how women connected these events, across the life course, to
their familial and social environments. A portion of the results are published elsewhere (Sprague, Radhakrishnan, Brown, Sommers, & Pantalone, 2017). Here we focus on the major themes and novel insights that emerged as a result of using these particular research methods of life course narratives and intersubjectivity. First, early childhood was characterized by chaotic home environments and trauma exposure. For example, of 24 participants, 23 experienced traumatic events at an early age. The events reported were typically sexual abuse occurring in childhood or early adolescence (average age at first sexual abuse for those reporting it was 12), generally by a male family member, or the death of a family member. In most cases, the trauma in early life was not recognized and was not treated until adulthood. A pattern emerging from our interviews with this population was that when women shared the fact of their sexual abuse with others (typically their mothers), the participants’ disclosures were generally dismissed as “lies.” The women described their alienation, loss, rage, depression, or anxiety. Thus, childhoods were marked by a traumatic event (typically more than one) and a betrayal (when their disclosure was dismissed), which would later profoundly shape the women’s trajectories over the life span and significantly increase their risk of HIV acquisition by introducing increased vulnerability and exposure to HIV. Additionally, most women described early exposure to alcohol and drugs during childhood (especially crack cocaine) and described socialization into using substances by early adolescence, usually by a family member. The life charts starkly illustrate the number and
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Table 1. Self-Reported Participant Sociodemographic Characteristics. Characteristic, N = 24 (except where noted)
M (range)
Age (years) Age at HIV diagnosis, years No. of incarcerationsa Age of first incarceration (n = 9 missing/not specified), years Age at first sexual abuse (n = 10 missing/not specified), years
49 (32-62) 35 (12-50) n/a (2-50) 24 (13-40)
Race/ethnicity Black White Puerto Rican/Italian Black/West Indian Education completed (n = 3 missing) Elementary school High school College Employment Employed Unemployed On disability Student Volunteer Relationship status Single Partnered Divorced Widowed Incarceration history Jail only Both prison and jail Homelessness historyb Homeless Mental health historyc Depression Anxiety Schizophrenia Bipolar disorder Trauma historyc Childhood sexual abuse Childhood verbal/physical abuse Adolescent sexual abuse Adolescent verbal/physical abuse Rape or attempted rape Intimate partner violence Death of parent (prior to age 18) a
12 (5-32)
Frequency (%) 17 (71) 5 (21) 1 (4) 1 (4) 1 (5) 14 (67) 6 (28) 4 (17) 2 (8) 11 (46) 2 (8) 1 (4) 9 (38) 8 (33) 5 (21) 2 (8) 15 (63) 9 (37) 19 (79) 10 (42) 3 (13) 2 (8) 2 (8) 9 (38) 12 (50) 11 (46) 6 (25) 11 (46) 9 (38) 4 (17)
Most participants were not able to provide a specific number of previous incarcerations and gave ranges, so calculating an average was not possible. b Reports of homelessness at various stages over the life course. cThese are nonmutually exclusive categories (i.e., participants could report more than one) and indicate any previous history of mental health issues or trauma.
sequence of these early traumas and their relation to later events (e.g., perpetuation of risk behaviors and experience of violent revictimization; Figure 1). Second, adolescence and young adulthood were characterized by increasing frequency and intensity of substance abuse, entering unhealthy (often violent) intimate relationships with partners, and behavioral and mental health issues, such as dropping out of school, getting into fights, joining gangs, becoming antisocial, and becoming suicidal. As participants left their home environments, rather than escaping victimization, women’s new social environments were often equally as harmful and traumatic, generating high risk for HIV acquisition. Indeed, all women eventually contracted HIV, typically in their 30s (average age of diagnosis was 35, but infection likely occurred years earlier). Heavy substance use was connected to involvement in sex work, rape, unlawful activity, and homelessness, which led to women’s repeated interactions with the criminal justice system (average age of first incarceration was 24 years, but unlawful activity typically began in adolescence). Many participants described traumatic life events during this period. Importantly, most women explicitly connected their repeated traumas and revictimizations in adolescence and young adulthood to untreated, unprocessed trauma from their childhood—which was captured and elaborated through our use of narratives and intersubjective dialogue. For example, untreated trauma from early sexual abuse often signaled susceptibility to later mental and behavioral health issues (e.g., suicidality and violent behaviors) and self-soothing substance abuse, while unsupportive and unloving familial relationships signaled vulnerability to entering unhealthy intimate, sexual, and other social relationships (Table 2). Third, for many women, their negative social contexts and behaviors, such as substance use, sex work, and IPV victimization, continued for decades as they aged. These behaviors were associated with repeated arrests and incarcerations (one women reported approximately 50 incarcerations) alongside continuing risk environments for HIV acquisition, as well as poor HIV adherence, uptake, and potential transmission to partners who were uninfected. Although some women reported accessing substance rehabilitation and social services through contact with the criminal justice system (often considered a key intervention point in the literature), most were unable to do so. Those who did often struggled with relapses, reporting that services were inadequate. Nonetheless, by the time of the interviews, these women were engaging with the CBOs to access social services, social support, and substance rehabilitation—thus interrupting cyclical experiences of substance abuse, homelessness, and incarceration. By the time of the interviews, most women described themselves as being in a relatively stable situation, while a few women were more recently engaged in treatment and their fears of relapse were a principal concern. The participants overwhelmingly perceived that substance abuse treatment, mental health care, safe housing,
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Sprague et al. Table 2. Signal Events and Their Connection to Later Life Events and/or Behaviors for Participant 8. Key excerpts from transcript (P = participant, I = interviewer) Early sexual abuse P: I need to [go for] marriage counseling . . . I need family counseling because there’s a lot of issues I haven’t dealt with like being molested. I: Okay. P: I haven’t really dealt with that. I: After this happens, so it went on for a few years and then it [molestation by uncles] stopped? P: Yeah, it stopped. I: And do you know why it stopped? P: Well, maybe ‘cause we was gettin’ older. I: Was it affecting you in school or anything? P: Yes, and I realized that last year. I started to fight. I: You started to fight with other kids at school? P: Lash out. And they didn’t understand why. I got suicidal. Third grade I was suicidal. I used to sing a song “lord, please let me die.” I would take all my momma’s medicine and just get sick and lay on the floor ‘cause I wanted to die. And then I used [drugs] . . . I didn’t know my father at the time and I used to cry: “Lord, if my daddy knew what I was goin’ through, would he be there for me?” That’s the question and um . . . and my life was miserable and I used to say “Lord, just let me die.” I used to just fight. Just fight. P: And I kept quiet [about sexual abuse in teenage years]. I don’t even know why I kept quiet but I did. I: Yes (affirming response) P: I was up to the age to tell somebody but I didn’t. I didn’t. And then one time this man wanted me to babysit for his daughter and he was comin’ on to me and I asked myself, “Am I a magnet for people to do this?” And I found out the reason why I was fightin’ was ‘cause I was tryin’ to take control. I: Yes (affirming). P: And I never thought of it like that. I: Yes. P: And then I started hearin’ voices and I got to a place where I ‘aint gonna let nobody hurt me, I’m a hurt you. I was mad with the world. I hated people. I hated me. I was (inaudible), I was mad. I just didn’t care. I got to that point. P: Ninth grade. Early drug use P: A therapist, yeah. You need therapy. You need counseling. You need to (inaudible) ‘cause a lot of times people just don’t jump up and get on drugs. The first time I used drugs I was in 3rd grade. My drug of choice was tryin’ to O.D [overdose]. off of pills, prescription pills, you got to find out when you came addicted. I: Yes (affirming). P: You just don’t all of a sudden say “I’m addicted to cocaine.” You start off from when you picked up that first pill. It might not be a problem but on down the line, it’s gonna become a problem. Home/family environment P: You know? “Although he didn’t do it, your brothers did.” You don’t put 2 children (inaudible) like that. You see what I’m sayin’? She [her mother] wasn’t able to protect us (crying). Then when she came home she (inaudible) she thought we should’ve been abortions. We should’ve been a miscarriage. She should’ve never had us. “Your daddy don’t want you.” She used to come home and throw dishes she was so angry and mad (crying). Wasn’t no love. Everybody in my family was on drugs. I: So . . . your uncles were . . . P: Everybody. They was on drugs; Heron (heroin), uppers, downers, every other (inaudible). Everybody in my family been to jail previous. Wasn’t no sayin’, “You can do this.” I was a straight A student in high school. I ain’t have nobody to push me; “you need to get up and go to school.” I: I know. P: (crying) there wasn’t none of that. I got pregnant at 15 because I wanted something to love me. Something that I could get love back.
Connection to later life event(s) and/or behavior(s) - Relationship with partners and family members - Creating stable, safe environment for herself and family - Violent behaviors - Mental health (suicidality)
- Violent behaviors - Anger - Desire for control
- Early drug use as a child affected later susceptibility to substance use as an adult
- Unsupportive and unloving home environment connected to seeking love through early pregnancy
(continued)
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Table 2. (continued) Connection to later life event(s) and/or behavior(s)
Key excerpts from transcript (P = participant, I = interviewer) I: Do you think your mom just had so many other mental health issues of her own? P: I don’t . . . she don’t know how to love. I: Yes (affirming). P: And I see that. She don’t know how to give and that’s . . . she don’t. She don’t. She don’t because she didn’t have nobody to show her any kind of love so how can she love us? How can I show love if I’ve never been loved? (crying). So do you know how long it took me to love [participant’s name omitted, referring to herself]? I ain’t start lovin’ me till I was 35 years old. 35 years old. I stopped putting up boundaries. I start lookin’ at my life. I can’t be . . . I can’t be . . . sad anymore. I can’t keep livin’ in the past anymore. That’s why I don’t talk about it. Drug addiction and risk behaviors P: I just wanted to use. The cravings would come, I was turning tricks, jumpin’ out of cars, sellin’ my baby’s clothes, I was sellin’ everything. I used [to] sell me. Literally, I was hittin’ rock bottom and I didn’t even know it. I: Okay. And so it was really just about trying to support your habit at that time? P: Yes.
and the creation and expansion of positive social support networks were effective (yet inadequately accessible) and, indeed, essential for reducing the risk of HIV infection and recidivism in women. Moreover, the interventions women described engaging with often came later in life, although women highlighted the need for earlier services and support, particularly in childhood and adolescence, where services were less likely to be targeted.
Discussion Implications for Theory, Policy, and Practice Illuminating the Risk Pathway on a Life Course Trajectory. Use of life course narratives and intersubjective dialogue afforded significant depth of insight into factors underpinning risk pathways and behaviors in this population that would likely not have been achieved using quantitative or other qualitative methods. These methods allowed for eliciting and deepening—and then more clearly depicting via mapping—how women perceived their familial and social environments in the context of HIV and incarceration (subjective focus), while also allowing us to establish adverse events on a time line to establish the relational connections, their timing, sequence, and interplay over a life course trajectory (objective focus). Paradoxically, and of significance, the narrative life course approach revealed the nonlinearity of experiences of risk factors that emerged during the “thick description,” elicited by the interviews (Ponterotto, 2006), which would have been difficult to replicate with quantitative or even other types of qualitative approaches. For example, a survey would not have captured the depth of detail and nuance, and the participants had uneven literacy levels. Additionally, we would have been
- Mental health, abusive relationships as multigenerational - Negative behaviors connected to addressing unmet needs for love and validation by parents
- High-risk sexual behaviors, including sex work and continued substance abuse
unable to reconstruct such complex life events on a time line if we had failed to use a narrative life course approach. For example, Zerden et al. (2014) undertook qualitative inquiry of perceived HIV risk environments among justice-involved women in North Carolina using a social-ecological framework and reported similar experiences among women regarding substance abuse and victimization. Although their approach was effective at identifying risk environments and behaviors at different interpersonal, intrapersonal, and community levels, it was less nimble at investigating how these risks were experienced as unfolding over the participants’ life course; and further underscores the value of life course approaches in studies of this population (DeHart et al., 2014). Used in conjunction, life course narratives and intersubjectivity thus enabled us to map a risk pathway for both HIV and incarceration and generate analyses in ways that brought into sharper relief the women’s social and familial settings, and their connection to individual behaviors within Alabama’s social context. These methods uniquely highlight key intervention opportunities across different life stages that could potentially improve these women’s health. Importantly, while many women judged corrections-based interventions as helpful, participants also described the need for much earlier interventions, such as in childhood and adolescence, to deal with trauma and abuse. Establishing Trust With a Vulnerable Population. The narrative approach, together with our physical integration into the offices of our CBO partners, also facilitated rapport and trust with a difficult-to-reach population (Christopher, Watts, McCormick, & Young, 2008). Several participants shared deeply personal details of their lives for the first time during interviews, per their report. As investigators, we have mainly
Sprague et al. studied adults (different populations in different settings) living with HIV, but we had not probed early experiences in childhood that might have been related to HIV and incarceration risk in adulthood. We believe early childhood experiences are crucial to grasping social patterning of poor health in this population. By beginning our investigation in their childhoods, and charting signal events as they occurred later in the women’s lives, we could better connect women’s behaviors to the social and familial settings in which their abuse and substance abuse occurred. These routinized patterns, including causal factors, should be investigated and verified in future studies using complementary research methods. This suggests a first conclusion: that qualitative research methods, such as those applied here, focused on eliciting the participants’ phenomenological experience within their social context, may yield rich insight into the complexity of multilevel concentric health risks and behaviors that can advance health equity research among socially disadvantaged populations. Enhancing Participants’ Agency. Additionally, our analysis revealed the seemingly random and disjointedness with which the participants experienced interpersonal victimization, drug use, incarceration, substance rehabilitation, recidivism, family stress, and child loss, which we reconstructed on time lines. The “free-form” storytelling and dialogue of life course narratives—that was necessary to elicit these events—afforded participants the opportunity to grapple with and share their experiences with us as researchers. Our role was simply to assist them in unraveling the dimensions of their experiences. This method introduces an important shift embedded within the research process that affords women—typically situated at the social margins— to be relocated at the center of their narratives. Participants were encouraged to, and did, take up the reins as agents within their own stories. This offered them the advantage of reflecting on their life events in ways that appear to be atypical for this population, while feeling supported to do so. These women reported extreme emotional deprivation, hardship, and lack of social support over most of their lives. Thus, engagement of researchers with these participants in a manner that recognized the value of their experience, acknowledged their loss and alienation, and recognized the violations of their bodily integrity and human dignity seemed to be invaluable. The women told us directly that they benefitted from sharing their life histories with us, an engaged and compassionate audience, who sought only to understand and chronicle their experiences. This suggests a second conclusion: that these methods can generate bidirectional learning and value for participants, as well as researchers, in ways that have been documented but require further study (e.g., Liamputtong, 2006; Wang & Geale, 2015). Qualitative methods are suited to advancing greater equity in health because they are participatory and acknowledge, address, and capitalize on the social dimensions of poor health as well as social
9 dynamics within the research process. This links to the contribution of intersubjectivity. The significance of intersubjective dialogue in studies like this one is that it allows entry by researchers into the participant’s journey. It enables the researcher to accompany the participants where they have been and to listen to what they have felt and experienced in ways that may reshape how researchers perceive the phenomena under study (Trahar, 2013). This has been attributed, in part, to mirror neurons, which Stern (2013) elaborates: Mirror neurons sit adjacent to motor neurons and fire in an observer who is doing nothing but watching another person behave (e.g., reaching for a glass). The pattern . . . mimics the exact pattern that would occur in the observer if she were reaching for the glass herself . . . the visual information received . . . gets mapped onto the equivalent motor representation in our own brain. (p. 80)
Using intersubjectivity helped us to better comprehend how women responded to extreme, harrowing events in their lives in a manner that then generated their cyclical patterns of substance use and reoffending, including as a means of seeking love and validation for their untreated trauma and betrayal. For us, as researchers, it opened new ways of learning and understanding the experiences of women’s marginality on multiple levels that included the family and social settings as interrelated sites of risk and harm over the life course: first as children located within intergenerational cycles of violence, then as adolescents who established patterns to cope with their untreated trauma, then as partners experiencing abuse while seeking love and affection, and in older age as women experiencing violent revictimization and repeated habitual patterns of substance use and incarceration. We were also able to better understand the ways that women’s neglect was reinforced by different social institutions and actors (e.g., jails, prisons, communities, and schools) in the U.S. South. In our estimation, as researchers, the pathway of our own learning and growth opened up because we were able to traverse the bridge of intersubjective dialogue, fueled by empathy, to cross the social divide that often separates researchers from the researched. Significantly, too, this dialogue enabled greater perspective on the role and place of researchers within the social hierarchy, that is, our opportunities to engage with social arrangements and mechanisms that influence poor health in this population. Our approach also highlighted the role of CBOs in providing critical psychosocial support services against the background of women’s social exclusion. Such support was essential for this population who experienced the overlapping stigma of HIV, incarceration, substance use, early sexual abuse as children, and IPV and rape as adults. Ultimately, through the data collection and analysis process, our understanding of the research concern and population both broadened and deepened.
10
Limitations and Challenges Life course narratives and intersubjective dialogue have several important limitations and challenges. Neither method is equipped to determine cause and effect, as quantitative methods can do. Both methods rely on self-report, are labor-intensive, and are emotionally draining for all parties. They emphasize the “internal” subjective perspective of participants in contrast with more objective external assessments of health (Sen, 2004). Both qualitative and quantitative methods, then, capture particular dimensions of the participant experience but fail to engage with others, unless additional methods of data collection are used in combination. As with qualitative approaches more generally, our focus was on generating a small sample that would allow for deep insight into the population, but the data do not allow for generalizability, and are not meant to do so (Ritchie & Lewis, 2012). These methods also present risks and challenges to researchers that must be managed with skill and care. The neural explanation associated with intersubjectivity perhaps assists in explaining why the foremost challenge we faced was in managing the vicarious traumatization of members of our research team, who reviewed and analyzed data over 12 months (McCann & Pearlman, 1989). This required continual engagement with participants’ visceral stories of IPV, rape, and molestation throughout their childhoods and adolescence. There are real psychological effects of this engagement on researchers; this underscores some costs to researchers who undertake work with the experiences of marginalized groups, particularly studies of violent victimization. It should be recognized that research on sensitive concerns takes longer. Additional breaks away from consuming and parsing participants’ experiences of violence are needed when researchers are generally encouraged to rapidly analyze and disseminate their data; however, slowing down the research analysis and dissemination process may need to become a more accepted part of the research process. Open dialogue and mutual support would assist researchers in navigating these difficulties, while training and protecting junior researchers from their ill effects. The research community should continue to establish dialogue on ways to manage the effects of secondary trauma on researchers, particularly junior researchers, so as to protect researchers’ psychological health and prevent burnout, while generating knowledge on violence prevention and reduction (Sexual Violence Research Initiative, 2015).
Conclusion The qualitative design and accompanying methods applied in this study enabled us to explore the timing, sequence, and import of life events and behaviors driving risk for HIV and incarceration—while grounding these realities firmly in their unique social context to foster a greater understanding of women’s lived experiences (Ritchie & Lewis, 2012). These
Health Education & Behavior 00(0) methods allowed for exploring the interaction and intersection between different variables, such as abuse and drug use, across the life course. Such interaction effects are poorly controlled for in more quantitative or modelling approaches. Socially marginalized populations typically experience intersecting types of disadvantage and health equity research necessitates untangling the web of concentric factors that underpin poor health outcomes, using appropriate research methods to do so. Qualitative research methods are uniquely able to wrestle with multiple social-structural factors and influences in ways that, despite their limitations, remain unmatched by other methods (Denzin & Lincoln, 2011; Greenhalgh et al., 2016). They are also crucial in advancing participants’ agency in the research process, while fostering sharper researcher insight into social arrangements and structures that shape health inequities for populations neglected in mainstream research efforts, including justiceinvolved women (Campbell & Mannell, 2016; Popay & Graves, 2000). Acknowledgments We would like to express our gratitude to the women who participated in this study, who shared their deeply personal stories with us. We also thank our community partners who helped facilitate this work, including identifying potential participants and providing us with a safe space in which to conduct interviews, particularly Kathie Hiers, Carol Potok, Mitch Tarver, and Elaine Cottle. Finally, we thank the other members of our Alabama research team who contributed to various aspects of the design, implementation, and analysis of this work, including Shelley Brown, Bharathi Radhakrishnan, and Theresa E. Sommers.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors declare that funding for the field research was supported by a public service grant (No. 7-7879) awarded to CS and DWP by the University of Massachusetts Boston.
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