The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c

While incarcerated, lack of autonomy, substandard medical care, and poor social support exacerbated medical mistrust and avoidance of HIV medical care long after release.

Engagement in HIV medical care and treatment were also impacted by a dynamic interplay of factors including substance use, prolonged periods of denial, poverty, and repeated bouts of incarceration. Given that experiences of HIV diagnosis and medical care while incarcer- ated have long-ranging, adverse effects, we argue that a better understanding of the ways in which PLWH of color experience HIV diagnosis and medical care while incarcerated may serve to inform intervention efforts within correctional institutions to improve HIV health outcomes. ARTICLE HISTORYReceived 1 October 2018 Revised 1 March 2019 Accepted 3 March 2019 KEYWORDScritical race theory; incarcerated populations; interpretive phenomeno- logical analysis; HIV care continuum; med- ical mistrust Introduction The epidemics of mass incarceration and HIV infec- tion are inextricably linked. The prevalence of HIV among those in correctional institutions is 3.5 times greater than it is for the general population. 1An esti- mated one in six (persons living with HIV) PLWH in the United States spends time in a correctional facility each year, 2the vast majority of whom are socioeco- nomically disadvantaged people of color. 3,4 Further, PLWH of color are overrepresented in correctional institutions largely because U.S. drug enforcement policies result in disproportionate arrests, prosecu- tions, convictions and sentences for drug offenses for Blacks and Latinos compared to whites. 5–6 Given the high incidence of HIV among incarcer- ated populations, the Center for Disease Control (CDC) recommends routine opt-out HIV testing of all individuals who enter a correctional facility as well as receipt of HIV medical care and antiretroviral therapy(ART) for those found to be infected with HIV or who present as HIV-positive upon arrival. 3,7 Thus, correctional institutions are uniquely positioned among HIV medical care settings to provide care along each step of the HIV care continuum, namely HIV testing, diagnosis of HIV, linkage to HIV medical care, retention in regular HIV medical care, prescrip- tion of ART, and sustained adherence to antiretroviral therapy (ART) resulting in viral suppression.

7,8 In fact, in a systematic review across 92 studies and 15 states examining HIV care before, during and after incarceration, Iroh et al. (2015) found that PLWH’s HIV health outcomes improved while incarcerated at every step of the HIV care continuum, even exceeding national averages. Yet postrelease, these outcomes plummet and dip below national averages at every step of the care continuum. 9 Maintaining HIV health outcomes for PLWH after leaving correctional institutions is critical for CONTACTAlexandra Kutnick [email protected] Center for Drug Use & HIV/HCV Research, New York University, 380 2nd Ave Rm 305, New York, New York, 10010-5656. 2019 Taylor & Francis Group, LLC BEHAVIORAL MEDICINE 2019, VOL. 45, NO. 2, 153–165 https://doi.org/10.1080/08964289.2019.1591338 individuals and as a public health strategy for prevent- ing forward transmission of HIV infection.

Accordingly, a large body of research has documented the development of systems for linking former inmates to HIV medical care upon release. 9–12 A recent systematic review identified some successes with these interventions yet also found significant variability in their efficacy. Notably, women, African- Americans, and those with substance use disorders, are the least likely to benefit from existing interven- tions to link PLWH to HIV medical care after incarceration. 13 Medical mistrust The asymmetry in medical knowledge and power between medical providers and patients inherently places patients in a vulnerable position particularly in the face of disease or illness. 14 An overall sense of trust in the medical establishment serves to mitigate this sense of vulnerability and engenders expectations of the way in which medical providers deliver care.

However, many people of color, particularly Blacks and Latinos, have high levels of mistrust in the med- ical establishment that profoundly influences their engagement in medical care. 14–17 This mistrust is strongly rooted in historical medical abuses of people of color and reinforced by present-day realities of sig- nificant health disparities. 14,17–19 Although medical mistrust has been conceptualized in a wide variety of ways, in the main, it refers to mistrust of medical pro- viders, systems, and treatments and exists on a spec- trum ranging from a belief that medical providers and/or systems do not prioritize patients’best interest to a belief that providers and systems are actively engaged in rendering harm. 14,15,18,19 The social stigmatization and political context of the 30 year old HIV epidemic coupled with the stark, disproportionate burden of HIV infection, morbidity, and mortality among people of color amplified a pro- found mistrust of the medical establishment and the formation of conspiracy theories among many people of color. 18,19 Mistrust in official sources of medical information about the origins, transmission, preven- tion, and the safety and efficacy of treatments of HIV have been found to be a potent barrier to engagement in medical care among across the HIV care con- tinuum. 15,17,20–22 A systematic review of African Americans’beliefs about HIV medical care by Gaston and Alleyne-Green (2013) found that experiences of racism, conspiracy beliefs, and the quality of provider relationships significantly impacted engagement inHIV medical care for a number of diverse samples of African-Americans. Further, medical mistrust is asso- ciated with low levels of readiness for ART and poor medication adherence among Black and Latino PLWH. 21,22 Although incarceration places individuals in a dependent and vulnerable position, this vulnerability may be exponentially heightened for people of color receiving HIV-related medical care in a correctional facility and profoundly impact their level mistrust in health care providers and systems. 23 Yet, with the exception of an early study that found incarcerated individuals have higher levels of mistrust in health care providers relative to community samples, 24 there is a dearth of research examining medical mistrust among individuals with a history of incarceration, and none to our knowledge examining the experience of PLWH of color receiving HIV testing and treatment while incarcerated. The present study aims to fill this important gap by eliciting the perspectives of PLWH of color regarding their experiences receiving an HIV diagnosis and/or medical care while incarcerated and the ways in which these experiences may have influ- enced their engagement in HIV medical care after release. Guided by an ecological approach which views experiences as embedded in multiple contexts.

25 This qualitative study is further informed by Critical Race Theory, a trans-disciplinary theoretical framework that aims to expand the discourse about complex racial concepts by eliciting the lived experiences of people of color. 26–27 Methods The present study is a secondary analysis of qualita- tive interviews from a larger study and draws on qualitative interview data with 28 Black and Latino adults living with HIV who received an HIV diagnosis and/or HIV medical care while incarcerated. Data col- lection for this study took place between 2013 and 2016 in Brooklyn, NY. The study received ethical approval from the New York University Langone School of Medicine Institutional Review Board. 28 Brief description of the larger study The larger study used respondent driven sampling (RDS) 29 in a well-defined, high-risk area (HRA) within Brooklyn, the borough in New York City with the highest heterosexual HIV prevalence at the time of the study. Eligibility criteria included: age 18–60 years; sexually active (vaginal and/or anal sex) 154 A. KUTNICK ET AL. with at least one opposite sex partner within the pre- vious year; reside in the designated HRA in central Brooklyn; Black or Latino race/ethnicity; comprehen- sion of English or Spanish; and not actively psychotic based on a standard screening instrument. 30 All participants engaged in a quantitative, struc- tured baseline assessment lasting 60–90 min on socio- demographic and health history variables including incarceration history and HIV health characteristics.

Following all other study activities, a total of (N¼68) semistructured, qualitative interviews were conducted in-person, and lasted approximately 60–90 minutes.

Participants signed informed consent for all study activities and were compensated $30 plus funds for round-trip local transportation for the quantitative assessment and qualitative interview. The larger study procedures and outcomes have been described else- where . 28,31–33 Eligibility criteria for the present study The present study drew on transcripts from a subset of those who received qualitative interviews in the larger study. We included those: (1) who were HIV- infected, confirmed through HIV testing or medical documentation; and (2) reported receiving HIV med- ical care, including a diagnosis of HIV, while incarcer- ated within the criminal justice system. We determined this second criterion as follows:

Participants were identified as ever having been incar- cerated by the following item in the quantitative base- line assessment:“Have you ever been held in a detention center, jail, or prison for more than 24 hours?”To ensure that participants’experience of incarceration occurred since being infected with HIV, we screened participants using the following question from the qualitative interview:“Since testing positive for HIV, where have you received HIV medical care, including HIV medical care following HIV-testing?

Probe: While incarcerated?”Based on these criteria, a total of 28 participants were included in the present study. (SeeFigure 1for an overview of the sam- pling frame.) Qualitative interview The qualitative interview followed a semistructured guide that aimed to elicit participants’perspectives on their experiences of receiving an HIV diagnosis and/ or HIV-related medical care while incarcerated. These questions were embedded in a larger interview about participants’experiences of their HIV diagnosis andhistory of engagement in HIV medical care.

Grounded in an ecological framework, the interview guide sought to explore individual and contextual influences on participants’experiences (ie, substance use, relationship with healthcare providers, access to medical care, HIV stigma, and medical mistrust).

Interview questions included main questions and probes, and the interviewers were encouraged to attend to emergent themes. Interviews were audio- recorded and professionally transcribed verbatim. All identifying information was removed from the tran- scripts and only pseudonyms are presented.

Interviewing team and positionality The qualitative interviewing team was comprised of six female Masters and doctoral-level research study staff from diverse racial/ethnic backgrounds (Black, White, Latina, and Asian), all trained in qualitative interviewing methods. Positionality challenges related to gender, race/ethnicity, power, socioeconomic status, and privilege were intentionally addressed throughout the data collection process through regular supervision and training.

Qualitative data analysis Interpretative Phenomenological Analysis (IPA) 34–35 was the qualitative analytic approach used for this study, as IPA is committed to exploring how people make sense of their own experiences and emphasizes the context where this meaning-making occurs. 34 In keeping with IPA’s idiographic approach, each inter- view was first analyzed individually, 35 which allowed for the inductive development of themes first within and then across interviews. The next stage of data analysis involved looking for patterns across cases.

This process was lengthy, involved many iterations and was guided by Smith and colleagues (1999)’s ana- lytic approach 33 including the following techniques for cross-case analysis: (1)abstraction,where one puts similar themes together and then develops a new name for the cluster; (2)subsumption, where an emer- gent theme itself becomes a master theme as it draws other related themes towards it; (3)polarization, where one examines transcripts for oppositional rela- tionships; (4)numeration, where one examinesthe fre- quency with which a theme is supported; (5)function, where themes are examined for their function and finally; (6)contextualization,where the contextual ele- ments within a narrative are identified. Each of these techniques were used to varying degrees, and themes BEHAVIORAL MEDICINE 155 were depicted in the narrative when they were deemed primary when discussed by numerous participants.

We assessed validity using Yardley’s (2008) guide- lines 36 for ensuring validity in qualitative research, which is recommended for assessing validity within an IPA approach. 37 The full analytic team comprised of two data analysts, one of whom was also an inter- viewer, and senior research staff, including the PI and Co-I, who formed an“interpretive community.”The analytic team engaged together in an iterative data analytic process guided by Yardley (2008), 36 namely meetings to discuss the most frequent and resonant themes, relationships among codes, and their explicit and underlying, latent meanings. Methodological rigor of the analysis was maintained through an audit trailof process and analytic memos and periodic debriefing with the larger research team, which included experts in HIV testing and treatment, HIV-stigma, criminal justice-involved populations and social and economic inequities. Data were analyzed with the assistance of Dedoose software, 38 for qualitative data analysis.

Quantitative measures in the baseline assessment Sociodemographic characteristics Using a structured instrument, the following were assessed through self-report using single item questions with open-ended items and coded responses:

age; race; gender; educational attainment; employment status; relationship status; family composition; financial Figure 1.Overview of the sampling frame 156 A. KUTNICK ET AL. insecurity (ie, unable to pay for necessities in the past year); health insurance; past and current housing instability (that is, whether has ever been homeless and is currently homeless);Incarceration history, including lifetime and recent incarceration (ever incarcerated and if so, whether incarcerated in the past year) as well as times incarcerated over the course of one’slifetime.

Problematic drug and alcohol usewere assessed for lifetime and recent use, through the Texas Christian University Drug Screen (TCU Drug Screen) and Alcohol Use Disorders Identification Test (AUDIT) measures. The TCU measure has nine items and is coded dichotomously with yes/no responses and established cutoff values for problematic levels of drug use. 39 A sample TCU item is:“Did you try to control or cut down on your drug use but were unable to do it?”(a¼0.91). The AUDIT, a self-report screening instrument developed by the World Health Organization (WHO) 40 to assess problematic alcohol use, is a 10-item measure with a 5-point Likert scale.

A sample AUDIT item is:“How often during the last year have you failed to do what was normally expected of you because of drinking?”(a¼0.89). Both the TCU and AUDIT are widely used assessment instruments for PLWH populations. 41 Medical Mistrustwas assessed through the 7-item Medical Mistrust Index (MMI). 42 The MMI assesses mistrust of healthcare organizations as opposed to mistrust of individual healthcare providers. It is coded on a 5-point Likert scale, ranging from“Strongly Disagree”to“Strongly Agree.”A sample MMI item is:

“Patients have often been deceived or mislead by healthcare organizations”(a¼0.92).

HIV health characteristicswere assessed through self-report using single item questions with open- ended items and coded responses. The variables assessed included: years since HIV diagnosis; as wellas HIV disease progression biomarkers, specifically current CD4 count and HIV viral load. For the quan- titative data, data were analyzed using descriptive sta- tistics including counts, percentages, means, and SDs.

All quantitative analyses were conducted in theRstat- istical computing environment. Results Sample characteristics As shown inTable 1, participants in this sample were mostly male (60.8%), were 47 years old, on average (SD¼7.12 years) and primarily Black (78.6%). Most of the participants had children (96.4%) and were mar- ried or in long-term relationships (92.9%). In terms of socio-economic characteristics, the vast majority of participants (92.9%) were unemployed, and three- fourths (75.0%) of participants were unable to pay for basic necessities in the past year, an indication of extreme poverty. In terms of incarceration histories, most participants had extensive involvement with the criminal justice system, as they had been incarcerated in their lifetimes an average of 8.19 times (SD¼6.64), and 17.9% had been incarcerated in the past year.

Further, the vast majority of the participants who comprised the sample (96.4%) met criteria for lifetime histories of problematic drug and alcohol use based on AUDIT and TCU criterion.

Regarding medical mistrust, as shown inTable 2, based on the MMI index, there was much variability in participants’current attitudes towards healthcare organizations and whether they trust healthcare organizations. Notably, 50% (n¼14) of participants endorsed the statement:“When healthcare organiza- tions make mistakes, they usually cover it up.” Further, 46.4% (n¼13) of participants endorsed the following items:“You’d better be cautious when Table 1.Socio-demographic characteristics (N¼28). %(n)orM(SD) Female39.2% (11) Male60.8% (17) Age in years47.0% (7.12) Black, Not Hispanic 78.6% (22) Latino/Hispanic21.4% (6) Married or in long-term relationship 92.9% (26) Has children96.4% (27) Unemployed92.9% (26) Currently on Medicaid 89.3% (25) Unable to pay for basic necessities in past year 75.0% (21) Ever homeless71.4% (20) Currently homeless7.1% (2) Lifetime number of times incarcerated (>24 hours) 8.19 (6.64) Incarcerated in the past year for>24 hours 17.9% (5) Diagnosed with HIV while incarcerated 60.7% (17) Lifetime history of problematic drug use or alcohol use (TCU & AUDIT criterion) 96.4% (27) Current problematic drug or alcohol use (TCU & AUDIT criterion) 28.6% (8) BEHAVIORAL MEDICINE 157 dealing with healthcare organizations”and“Patients have often been deceived or mislead by healthcare organizations,”suggesting that many participants in the sample struggled with mistrust of the medical establishment. Further noteworthy is the fact that the MMI Index asked about trust in healthcare systems in general, and did not ask specifically about mistrust in healthcare systems in correctional institutions.

Regarding the HIV health characteristics of the sample, the participants had been living with HIV for 14.14 years (SD¼8.01) on average and 60.7% were diagnosed with HIV while incarcerated. Further, 67.8% (n¼19) reported currently being on ART. In terms of self-reported CD4 count, participants reported an average of 482.57 cells/mm 3(SD¼341.83) with a range of 1–1,249. Of the 28 participants in the sample, 39.3% (n¼11) reported being virally sup- pressed. Data is also shown inTable 3.

Overview of qualitative findings We found that participants’experiences of HIV med- ical treatment within correctional institutions mark- edly impacted their trust in mainstream medical providers and HIV treatment, and served as a lens through which health behaviors and health care choices were made long after release. Two overarching multifaceted themes emerged from our analyses. First, we found a unique constellation of factors associated specifically with the experience of being incarcerated, including: (1) the lack of autonomy; (2) medical care experienced as substandard; and (3) poor social sup- port, which amplified feelings of stigma. These factors appeared to compound upon each other and exacer- bated experiences of mistrust of the medical establish- ment, particularly mistrust of ART, which in turn,contributed to difficulties maintaining engagement in HIV medical care after release. Second, we found that substance use played a pivotal role in complicating participants’experiences of HIV-related medical care.

In particular, we found that for most participants, lengthy periods of denial of HIV status were mutually reinforced by the synergistic effects of substance use, poverty and its consequences, and repeated bouts of incarceration and, all of which, taken together, com- pounded medical mistrust and derailed participants’ engagement in HIV medical care after release. Next, we unpack these themes that emerged regarding expe- riences of HIV diagnosis and HIV-related medical care within the criminal justice health care system, and elucidate the long-ranging adverse effects these experiences had on participants’health and well-being after their release.

Unique constellation of factors associated with incarceration and their compounded effects Lack of autonomy We found that the lack of autonomy that is charac- teristic of incarceration challenged the HIV medical care experiences for participants in our study, and reverberated in their health care choices after release.

In particular, we found that participants who received their HIV diagnosis while incarcerated were especially affected by the lack of autonomy they experienced Table 2.Medical mistrust index (N¼28).

Items Strongly Disagree % (n) Disagree % (n) Neutral % (n) Agree % (n) Strongly Agree % (n) You’d better be cautious when deal- ing with healthcare organizations21.4 (6) 7.1 (2) 25 (7) 28.6 (8) 17.9 (5) Patients have often been deceived or mislead by healthcare organizations10.7 (3) 21.4 (6) 21.4 (6) 25 (7) 21.4 (6) When healthcare organizations make mistakes, they usually cover it up14.3 (4) 14.3 (4) 21.4 (6) 35.7 (10) 14.3 (4) Healthcare organizations sometimes do harmful experiments on patients without their knowledge14.3 (4) 25 (7) 28.6 (8) 25 (7) 7.1 (2) Healthcare organizations keep your information private7.1 (2) 14.3 (4) 35.7 (10) 32.1 (9) 10.7 (3) Sometimes I wonder if healthcare organizations really know what they are doing0 (0) 25 (7) 39.3 (11) 25 (7) 10.7 (3) Mistakes are very common in health- care organizations10.7 (3) 21.4 (6) 32.1 (9) 14.3 (4) 21.4 (6) Note. Item is reverse-coded. Table 3.HIV Health characteristics (N¼28).

HIV Health Characteristics % (n)orM(SD) Years since HIV diagnosis 14.14 (8.01) Ever been prescribed ART 82.1% (23) Currently on ART 67.8% (19) Virally suppressed 39.3% (11) CD4 cells/mm 3 482.57 (341.83) 158 A. KUTNICK ET AL. during such a traumatic and vulnerable time as an HIV diagnosis. Participants diagnosed with HIV while incarcerated described their experiences of both HIV- testing and diagnosis as harsh and coupled with a lack of agency regarding their ability to obtain information and make informed decisions about their healthcare.

Participants commonly noted they did not feel empowered to ask questions about the process of HIV testing, nor about the implications of an HIV diagno- sis on their health. For example, Joseph, a 52-year-old man who had been incarcerated twice, recalled his experience of being diagnosed with HIV while incar- cerated as follows: “[In prison], the nurse first saw me because they tested me, the swab first. Then they called me back to inform me they needed blood. But I didn’t know what for, I mean I felt, I really felt confused, I didn’t know what was going on. But just went along because I didn’t have no choice.” Further, after Joseph tested positive for HIV while incarcerated he was prescribed HIV medication to treat his HIV disease within the prison health- care system.

“When I first started taking the meds in prison, the nurse told me, oh, you’re probably going to be used to it in a couple of days, like the side-effects, and it being okay, but it was more like years. They just say anything to get you to do what they want.” Joseph describes feeling coerced into getting tested for HIV and once diagnosed with HIV experienced a sense of resignation as to his lack of ability to make decisions about his health care. These experiences left Joseph not only with mistrust of his particular medical providers within the prison healthcare system, but also fostered his suspicion of the HIV medications he was prescribed.

In addition, as with Joseph, it is noteworthy that not one of the participants in the sample mentioned the process of being consented for HIV-testing, nor alluded to any pre- or post-test HIV counseling when describing their experiences of HIV testing and diag- nosis while incarcerated. In New York State, where all of the participants were incarcerated, HIV testing is voluntary and must be offered to every inmate at the time of their initial medical evaluation in the correc- tional facility and includes a process of informed con- sent and medical treatment, if found positive. 43 Furthermore, when participants were asked to describe what factors may have facilitated their suc- cessful engagement in medical care after release from prison, the vast majority of participants in the study invoked the critical importance of maintaining theirautonomy to decide whether or not to engage in HIV medical care after release. For example, Helen, a 49- year-old woman who had been incarcerated five times, asserted the following regarding her decision to take HIV medication after her release: “I’m a grown person. I can make my decision, I don’t want to—I don’t want to. I have a choice to say yes or no.” Experiences of medical care as substandard Our analyses demonstrated that in addition to experiencing a lack of autonomy in the context of receiving HIV medical care while incarcerated, the majority of the participants also viewed HIV medical care within the prison healthcare system as substand- ard. Many participants described HIV healthcare experiences where providers failed to educate them about their HIV disease and available medical options, as well as neglected to appropriately inform them about what treatment involved. For example, Jose, a 55-year-old man who was incarcerated once, con- trasted his experiences of HIV medical care within the prison health care system to HIV medical care experi- ences outside of prison, as follows:

“You know, I went to jail, did two years, but as you get older, you get wiser you know. I don’t wanna die in jail, I’m 55 years old. [Chuckles] I got friends that died in jail from the virus too. They don’t treat you well in jail. They don’t give you the right treatment.

Out here there is a better treatment than there.” Jose further articulated how feeling uncared for within the prison healthcare system led to suspicion about the effectiveness of the HIV medication treat- ments among his friends. Jose attributed his friends’ deaths from AIDS to their decision to abstain from HIV medications they could not trust, as he stated the following:

“Because, I got friends that died of AIDS in there, you know. They wasn’t taking their medicine because they didn’t know what it was. [It’s] hard in there [in jail], no one cares about you.” Moreover, a theme that emerged among a number of the female participants in the sample, was that their husbands’experiences of substandard HIV medical care while incarcerated greatly affected them as well.

For example, Lily, a 50-year-old woman who had been incarcerated three times and who contracted HIV from her husband after he was diagnosed with HIV while incarcerated, recalled the following:

“And that’s when I started crying. I said, oh my god. I always protected myself but you know, my husband was in and out of jail. And one time when he came out of jail, he had a bunch of medication he hadn’t BEHAVIORAL MEDICINE 159 taken’cause he didn’t know how to read no English.

And there was a list, and I read it. Carlos is diagnosed with AIDS, and the medication, blah, blah. How many times a day. A whole bunch. But my husband, he didn’t know what was going on, couldn’t read no English, and didn’t do nothing with those medication.” As described above, Lily had only surmised that her husband had been diagnosed with HIV because of paperwork and unused HIV medication she found after he was released. Further, Lily described her hus- band as having received substandard HIV medical care while incarcerated where he did not receive basic, yet critical health education such as dosing schedules of prescribed HIV medication regimens that he could understand. Consequently, Lily believed that as a result of the substandard HIV medical care her hus- band received while incarcerated, he left prison unable to manage his HIV disease.

Poor social support Findings indicated that inadequate social support while incarcerated was widespread for participants in our study, and operated in conjunction with the above-described factors to impair participants’abil- ities to successfully engage in medical care. We found that poor social support primarily stemmed from two reasons: (1) participants socially isolated themselves due to fear of HIV stigma and discrimin- ation; and (2) participants had limited contact with their closest support systems. In fact, participants described HIV stigma as pervasive within criminal justice institutions, and reported that while incarcer- ated, stigma exacerbated their social isolation, dis- tress and lead to their avoidance of HIV medical care. For example, Louis, a 46-year-old man who had been incarcerated five times recalled how as a result of HIV stigma, he would not disclose his HIV status to anyone in prison nor engage in HIV med- ical care:

“In prison I didn’t tell no-one. Don’t take no medication. Because I don’t want to tell nobody because the discrimination part that comes with it, you know what I mean, and I won’t be I comfortable with that. Better not to tell no one your business.” In addition, because of the way medication is dis- pensed in prison, taking HIV medication was particu- larly fraught and lead participants to further socially isolate themselves, as Helen described:

“I wanted to be treated just, you know, the same as anybody else. Because, in jail, everyone knows that you taking medication…you can see that people look at you kind of different. I would walk by sometime, and everyone talking, and whispering, and looking. And, I know they talking about it, about my being HIVpositive. So I kept to myself. I am not going to be treated that way, you know. No I am not.” Furthermore, because participants were separated from their closest support systems while incarcerated, they missed vital social support in managing the emo- tional implications of receiving a diagnosis of HIV, including dealing with the implications of the disease process and challenges associated with treatment. For example, Clark, a 45-year-old man who had been incarcerated ten times and was diagnosed with HIV while incarcerated recalled his experiences of social isolation in prison, and its consequences, as follows:

“You know, when I go to jail, I don’t have nobody.

Nobody to talk to about it [HIV infection] or to help me out with meds. I’m walking around—no mom, no brothers and sisters, no cousins, you know, that was real hard.” Participants’experience of social isolation and HIV stigma while incarcerated was not only commonplace, but also detrimental, as poor social support often lead to avoidance of HIV medical care. Furthermore, the effects of social isolation while incarcerated are nested within an overall context of medical mistrust, as described before. Hence, it is notable that none of the participants described having supportive relationships with medical providers while incarcerated that could have potentially buffered the effects of stigma they experienced. Rather, it was only after release from incarceration, that any of the participants described establishing trusting and positive relationships with providers that facilitated their ability to get educated about HIV, accept their diagnosis, and learn to man- age their disease. For example, Sarah, a 45-year-old woman who had been incarcerated five times and was diagnosed while incarcerated, recalled the following:

“Like—it was like right after I was diagnosed, and they didn’t educate you that much in jail. So, whatever bits and pieces you heard was like, basically, bits and pieces you heard. I didn’t become—start getting educated till I came home and I got with the doctor I like, and so that was my opening to knowing some things, and learning how to accept this virus and take my medication.” Prolonged denial of HIV status Results of our analysis revealed that the vast majority of participants in this sample struggled with accept- ance of their HIV status. In particular, we found that those participants who received their HIV diagnosis while incarcerated experienced particularly lengthy periods of denial of their HIV status, ranging from 3 160 A. KUTNICK ET AL. to 23 years, which especially challenged their postre- lease HIV medical care. For example, Darren, a 44- year-old man who has been incarcerated six times and who was diagnosed with HIV while incarcerated five years prior to his interview, relayed the following: “What entered my mind when they say it, I don’t believe it. They say it’s true, I don’t believe it and I am going to keep living my life, been living my life and it worked for me to this day. It has been working for me, still never been hospitalized, no complications. So no medicine, none of that.” Darren did not believe his HIV diagnosis when he received his test results while incarcerated, and five years later continues to struggle with this belief, as his experience of his health stands in contrast with this knowledge. Essentially, Darren trusted his own experi- ence more than he trusted the medical information he was provided; as a result Darren did not believe he needed to be treated with antiretroviral medication.

Further, Shirley, a 55-year-old woman who was diagnosed with HIV while incarcerated and has been incarcerated five times in total, described her own lengthy process of denial as follows:

“Well, actually—I actually found out in‘90 when I was on Riker’s Island [where she was incarcerated], but, you know, they didn’t really tell me what was going on, and it go (in) one ear and out the other, so when I got out, I did many, many, many, many, many, many drugs and really didn’t care, really didn’t believe it, until this year [in 2013].” Shirley experienced a particularly long period of denial following her HIV diagnosis while incarcerated.

She reported that her medical providers within the criminal justice system failed to fully inform her about what was going on while she was diagnosed and that she was unable to cognitively or emotionally process her diagnosis. In addition, Shirley emphasized how following her release, her substance use reinforced and compounded her denial, a theme that emerged in this study that will be explored in greater detail next.

The contribution of substance use One of the most widespread themes that emerged in this study was the pervasive, negative influence of substance use on participants’lives. As described pre- viously, the vast majority of the participants in this study had histories of substance use disorders. We found that the mechanisms through which substance use adversely influenced participants’experiences of HIV diagnosis and medical care within the prison health care system were numerous and complex. Chiefamong them were: (1) substance use leading to increased criminal justice involvement and repeated bouts of incarceration; and (2) substance use com- pounding denial of HIV status and exacerbating avoidance of medical care after release. For example, Clark described how after a long, nonlinear struggle with substance use, it took him many years, many dif- ferent experiences of incarceration, HIV testing, peri- ods of denial, and reckoning with his HIV diagnosis before he was able to begin to successfully engage in HIV medical care. “So I think maybe-maybe the first time [I tested for HIV]—the first time maybe was around 1998-1999 at Riker’s [where he was incarcerated], or then like 2000- 2000 or something, then the second time maybe was around 2005 or 2006 something like that while I was at Riker’s again. And that’s when I really start[ed] thinking about it, but I still didn’t really. I went to the doctor and stuff and then I didn’t go back. And then I started back using [drugs] again and that’s where that I stopped taking my (HIV antiretroviral) medication. I am clean now and go to the doctor…but it’s still hard.” Further, we found that for many participants, struggles with substance use intersected with a host of other difficulties including repeated bouts of incarcer- ation, child welfare involvement and HIV diagnosis that compounded their challenges with managing their health and well-being. For example, Donna, a 49-year- old who has been incarcerated nine times, recalled how she received her HIV diagnosis while incarcerated:

“When I first found out I was positive, I was pregnant actually. I had a baby and uh she was premature by one month. They tested the baby and she was HIV positive and I have it. I lost um the baby, you know.

She went into foster care and then eventually got adopted. I really lost custody because I went to jail and he (her partner) went to jail. I think if I was out, I would’ve got on the program. I would’ve got her back—you know what I’m saying? But that-that jail time, that’s what really messed it up for me.” Certainly Donna’s experience of her HIV diagnosis while incarcerated was difficult, as she attributed the loss of her infant to the child welfare system as due to her being incarcerated and unable to access substance use treatment. Notably, child-welfare involvement as a result of incarceration due to substance use was a fre- quent experience described by the female participants in this study. Further, Donna described a number of years where following her diagnosis she also experi- enced homelessness as part of a vicious cycle of sub- stance use and repeated bouts of incarceration she struggled with, as she recalled: BEHAVIORAL MEDICINE 161 “I was homeless. I was on the street. I slept on roofs. I, you know, going back and forth to jail. There was a period of a few years after finding out [my HIV status] where I was going to jail, back and forth, and that’s not the place to be. It’s depressing. Jail is really depressing, you know. And every time you turn around you’re going back there. I was using [drugs] and going back and forth to jail.” Moreover, in addition to Donna, housing instability was an issue for many of the participants in the study, and contributed to many participants’difficulties with successfully engaging in HIV medical care. For example, Clark described how as a result of subsidized housing regulations, his court-mandated substance use treatment caused him to lose his housing, which not only caused him distress, but also lead to difficulties managing his health, as follows:

“The last time I had got arrested the judge wanted to put me in like a long-term [substance use treatment] program. But I was like how can I go on a long-term program and keep my apartment? I had friends and stuff that when they went to [a long-term] program, they lost everything because they had Section 8 [federal housing subsidy]. So I didn’t want to lose my Section 8. But I did. Ain’t got nothin now that I’m out. And I get stressed out really, because how much I want my own house, you know. Hard to take care of myself, like with my meds now [without my own house], you know” Like many participants in the study, Clark faced enormous obstacles to successfully managing his HIV disease, including complex structural barriers associ- ated with substance use treatment, housing, incarcer- ation, and poverty that left Clark with little autonomy and increased stress.

Certainly, for the participants in this study, under- standing the significance of the experience of being diagnosed with HIV/and or receiving HIV medical care while incarcerated requires an appreciation of the larger context where participants reside. As described, the context for the participants in this study is one of severe socioeconomic disadvantage where frequent incarceration, substance use, homelessness and med- ical mistrust are pervasive, and severely complicate participants’abilities to successfully manage their HIV disease. Discussion The present study explored the experiences of a highly vulnerable sample of PLWH of color who received an HIV diagnosis and/or medical care while incarcerated and continue to struggle with maintaining positive HIV health outcomes after release. We used an in-depth qualitative methodology to elicit the perspec- tives of PLWH of color with histories of incarceration and found that participants’experiences of HIV med- ical-care while incarcerated were influenced by a com- plex and dynamic interplay of factors at all levels of the social ecology.

Our findings indicated that all participants in our study experienced a heightened level of vulnerability and powerlessness receiving HIV medical care while incarcerated which, to varying degrees, appeared to affect their level of medical mistrust and their health status months and years after release. Importantly, we found that participants’experiences with correctional medical providers did little to engender trust in the veracity of their diagnosis of HIV or the necessity, safety, and potential outcomes of the treatments pro- vided by these providers and may have hardened their medical mistrust once they were released. Further, these experiences appeared to drive participants’need to maintain a strong sense of autonomy about their health care choices after release, for many, to the det- riment of their health. Although participants’ responses on the quantitative measure of present-day mistrust of medical systems yielded some variability in the level of mistrust, many participants were quite ambivalent about engaging in HIV-related medical care or firmly decided not to engage in care despite the consequences to their health. These beliefs were reflected in their health care status as only 19 of 28 participants in the sample were on ART, and of those, only 11 were virally suppressed.

In contrast to participants who entered a correc- tional facility with a previously known HIV infection, we found that those who received their initial diagno- sis of HIV while incarcerated (60.7%), had an espe- cially difficult experience with long-ranging adverse effects. Consistent with other studies, 33,44–48 we found that many participants experienced HIV diagnosis as a traumatic stressor and reacted to their HIV diagno- sis with difficulties cognitively processing any HIV education provided while incarcerated, 45 as well as with denial 32 and numbing responses such as prob- lematic substance use. 44,46 Receiving an HIV diagnosis can be traumatic and overwhelming in the best of cir- cumstances but incarceration likely worsens this experience due to social isolation, 48 amplified HIV- stigma, 49 loss of autonomy, 50 and substandard medical care. 22 Based on these findings, clinicians who treat PLWH of color who have received an HIV diagnosis while incarcerated should be aware of and have an understanding that an HIV diagnosis can be trauma- tizing, particularly under the unique circumstances of 162 A. KUTNICK ET AL. being diagnosed with HIV while incarcerated. In add- ition, for providers within the correctional healthcare system, special considerations surrounding HIV test- ing and counseling should be accounted for, including ensuring pre-and posttest counseling processes pro- motes PLWH’s autonomy. 50 Essentially, interventions that emphasize autonomy for PLWH of color, as well as appreciate and account for the challenges of doing so within a context of mistrust, are sorely needed.

Moreover, given the nexus of mass incarceration and HIV, the contextual influences in the lives of PLWH of color are critical to consider. Our findings indicated poverty and its effects were both ubiquitous and detrimental and its impact on participants in this sample cannot be overstated. In addition, given that participants in our study were incarcerated an average of eight times over the course of their lifetimes, we view the context of incarceration as being an all too common experience for many PLWH of color, and accordingly, is a context that is crucial for future research to explore and understand. As such, using an ecologic 24,25 and CRT framework 26,27 proved to be useful for exploring experiences of HIV medical care while incarcerated, as they attend to salient contextual factors that affect PLWH of color’s experiences such as medical mistrust.

Limitations This exploratory study was unable to address sev- eral key confounding factors related to experiences of HIV diagnosis and medical care within the criminal justice system, most notably evidence of resilience, gender dynamics, and mental health concerns, as well as key variations in provision of HIV medical care over time and across settings such as in jails versus prison. 51 Further, our purposive sampling method may limit its generalizability to the population of PLWH of color who have been incarcerated in New York State. In addition, the sample was more homo- genous with respect to age, and included more Black than Latino participants than anticipated, which may limit its representativeness. Further, as a secondary analysis, saturation of themes was not reached, in par- ticular, questions about HIV medical care and diagno- sis experiences while incarcerated were embedded in larger qualitative interviews, which did not explicitly focus on incarceration. Relatedly, this study had a larger sample size than is typical for IPA studies (N¼28).

35 However, given the aims of this study, in order to develop an in-depth interpretation of the data, as well as the fact that there was variability in the quality of the interviews, the sample size was ultimately appropriate for the present study, as therewas no disadvantage evident in using all 28 available transcripts. In addition, the reliability of retrospective data and self-reported health behaviors is not known, and as with many studies of health behaviors and fac- tors that are perceived as stigmatizing, such as sub- stance use, incarceration, and HIV itself, it is possible that social desirability factors prevented participants from fully disclosing their behaviors. Finally, the cross-sectional nature of the design does not allow for an exploration of patterns over time that could pro- vide a broader understanding of participants’percep- tions of their experiences of HIV medical care while incarcerated and its impact. Conclusions The present study extends the literature on the lived experience of PLWH of color receiving an HIV diag- nosis and/or medical care while incarcerated, a highly vulnerable population at high-risk for poor HIV health outcomes. Our study findings highlight the way in which a complex and dynamic interplay of individ- ual-level and contextual factors such as loss of auton- omy, negative healthcare experiences and associated medical mistrust negatively affect PLWH of color who have received HIV medical care while incarcerated after release. These findings have important implica- tions for improving HIV medical care in correc- tional settings.

Funding The study was supported by the National Institute on Drug Abuse.

Conflict of interest No potential conflict of interest was reported by the authors.

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