First, the research team developed a set of initial descriptive codes based on a review of transcripts, reflecting the domains of the research question and theoretical models e. A trained primary qualitative analyst coded each interview transcript using these codes, refining and creating additional codes when necessary. In this manner we established inter-coder reliability and further refined the existing set of codes. Discrepancies in coding were resolved by consensus.
Codes relevant to CRT, such as race, ethnicity, class, institutions, structures, organizations, discrimination, historical factors, distrust, stigma, specific counter-narratives, experimentation, and pressure, were selected for further analysis. Then, we used the Memo and Code Co-occurrence functions within Dedoose to support the analysis of relationships between and among codes and to thereby develop larger themes. Next, the interpretive community together identified areas of congruence and discrepancy with respect to the broader themes. The final analysis focused on those themes most closely aligned with the tenets of CRT and intersectional theory, exploring both manifest and latent constructs [ 51 ].
Methodological rigor of the analysis was maintained through an audit trail of process and analytic memos and periodic debriefing with the larger research team, which included experts in HIV care continuum issues, CRT, and intersectionality [ 52 ].
Such terms are inconsistent with the CRT approach, as they imply the understandings inherent in such counter-narrative explanations are or may be invalid. Most Most participants Virtually all Approximately two-thirds About half On average, participants had been diagnosed with HIV Approximately half None were on ART at the time they enrolled in the study.
All reported that a health care provider had recommended ART in the past. Half Thus participants were diverse with respect to socio-demographic, health, and other background characteristics, in keeping with the sampling approach. A description of the psychometric characteristics of structured measures used to assess the sample are described elsewhere [ 44 ]. With respect to specific themes, as we describe in detail below, we found structural racism as defined above contributed to 1 perceptions of healthcare settings as overly institutionalized, 2 distrust of medical institutions and healthcare providers, 3 the perception that patients are excluded from the health decision-making process, and 4 an overemphasis on ART over and above other non-HIV related priorities, all of which, in turn, created a sense of dehumanization.
Yet we also found, as might be expected, participants expressed their desires to achieve or maintain good health, and despite strains experienced at the structural or organizational levels, many had productive relationships with individual health care providers. We wish to note not all statements made by participants would be considered factually accurate from the perspectives of the medical establishment. Names presented below are pseudonyms and identifying details have been changed to protect confidentiality.
We found participants in the present study engaged with a wide range of health care, social service for government entitlements and housing support , community-based, and in some cases, criminal justice settings, located in areas with both higher and lower surrounding poverty rates. Participants routinely described these more institutionalized clinical care settings as creating a sense of disempowerment, which was then linked to the degree they felt pressured by providers to initiate ART, and this, in turn, fostered a desire to avoid these settings.
It really was more about the medical setting. I think that the setting made me feel uncomfortable. I felt like just something invisible was speaking to me. Marcus, a year-old African American man diagnosed with HIV over six years ago, described his experiences with HIV care institutions as degrading and demoralizing. He understood the dehumanizing and anonymizing way he was treated as based on both his actual and presumed socio-demographic characteristics, all linked to where he lived, a borough in New York City:.
This is what goes on in this neighborhood, so you get characterized as this and put in a box. And then [health care providers] have all these other assumptions of the drugs, the crime. Soon as [they] find out your address-it changes a lot of things. Darryl, a year-old African American man diagnosed 17 years ago, who had never taken ART, summed up his past health care experiences:.click
We found the theme of medical distrust was pervasive and powerful, and this distrust had profound effects on engagement in HIV care and uptake of ART. Further, distrust was linked to fears that the side effects patients often experience when taking ART — more common in the earlier formulations of the medications — are evidence of its toxicity, and to some, even a form of genocide. The side effects of HIV medications, in general, remained some of the most easily articulated manifestations of medical distrust among AABH-PLWH within the overall historical context of the memory of past medical exploitation of populations of color.
Thus we found that a side effect was not always just a side effect. Indeed, we found ART side effects, or even just the fear of potential side effects, commonly produced major emotional barriers to ART initiation, continuation, and adherence. Participants expressed a sense of vulnerability in relation to institutions they perceived as lacking concern for their well-being, or that, in some cases, which they felt sought to harm them.
For others, distrust of medical institutions was the result of an indefinable sense of wariness passed from generation to generation. And they made it for the less desirables. And it spreaded. Moreover, lack of knowledge and suspected malicious intent on the part of healthcare providers and medical institutions about the efficaciousness and potential dangers of ART contributed to her understanding of taking ART as a type of experimentation, as she noted below:. So what they basically doing is experimenting. I would say my population of people are against medicines because they hear the old AZT, you know, you get fat belly.
And you get more sicker.
That was my idea at first too you know. I think some providers feel, they look down at the person. Not all, not all. You know, who put you in that situation? You did. I can give you a perfect example. We found participants were acutely aware of how structural racism and economic inequality take not only the form of outright discrimination or unintended micro-aggressions but, more importantly, operate as over-arching and invisible features of the healthcare industry. Yet in this context, and despite fear and distrust, we found participants were continually evaluating their health care needs, seeking services, trying medications including ART in some cases , and engaging in health care.
We found participants were emotionally torn between, or perhaps immobilized by, the desire to engage in health care and take ART, and their strong desires to avoid negative reactions received from, and elicited by, health care settings and encounters.
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Thus medical distrust often impeded, but did not necessarily preclude, involvement in health care. This desire for autonomy was often discussed in opposition to the experience of being pressured and even judged by health care providers, who, participants noted, pressed them to immediately begin ART after their initial HIV diagnosis, regardless of other life factors such as treatment anxiety, lack of emotional readiness, fear of stigma, substance use problems, or other health conditions.
This contributed to a feeling that providers often doubted whether patients had the capacity to make decisions in their own best interest. And most people know their bodies. So when they go in, they know what to tell the doctor. Subsequently, Leon decided that his best option was to completely disengage from medical care, in order to preserve his autonomy and dignity. Lawrence described above also reported feeling pressured by providers to initiate ART since his diagnosis. Indeed, participants described how health care providers rightly promote ART to their patients as their best chance to live longer and healthier lives, and to virtually eliminate the risk of transmitting HIV to others.
However, as Lawrence noted:. All my doctors would beg me to take the medication. They wanted me to do DOT [Directly Observed Therapy], you know, come in, pick up the medication, and I ain't like that at all… I didn't like being told. I wanted my medicine when I wanted to take it, and you know.
I want to do what I wanted to do. For Isaac, it was necessary to cede a certain degree of autonomy in order to receive necessary medical care:. As a result, patients reported viewing themselves as potential experimental subjects, and medical treatment was treated with suspicion and associated with non-consensual procedures. In this way, medical distrust and the need for autonomy were closely linked. Within brief health care encounters, participants noted that ART was often prioritized over other concerns.
Gerard, a year-old African American man, described feeling as though his provider was either unaware or uninterested in why he had waited so long to initiate ART, which served as a disincentive to initiate HIV medication for him:. I would walk out of here just as empty as I walked in here. Sam, a year-old Hispanic man, for example, avoided medical treatment for a staphylococcus infection. When he did eventually seek treatment, he experienced providers as ignoring the infection that brought him to the hospital, focusing instead on his decision not to take HIV medication, as he explained:.
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I had not dealt with [the staph infection] before, and I was trying to cure it at home, you know. Doing my own medical cures, you know. But it got worse and worse and worse.
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So I finally went. I need somebody at the top. I need help with the staph infection. Any questions about HIV, you need to ask me, I have the answers for you. Everybody just see the pill. Notably, throughout the study we found women in particular were likely to note that while the negative effects of HIV stigma on social relationships were asymmetrically felt by women, and while the disproportionate burden of childcare and other familial responsibilities fell to women, health care providers were often inattentive to these concerns, thus exacerbating what was already perceived to be a paternalistic relationship between patient and provider.
On an institutional level, the effects of structural racism reverberate throughout strained and over-burdened health care systems, as is evident in the dehumanizing manner by which patients often feel treated by health care workers and staff in such settings. There is a growing awareness, in fact, of the structural foundations of health care dissatisfaction. Similarly, Weiser and colleagues [ 56 ] documented widespread dissatisfaction among HIV care providers in publically funded institutions, finding that compared with providers in private practice, more of those serving the lowest-income patients planned to leave HIV practice within 5 years [ 56 ].
Yet, higher health provider satisfaction leads to better health outcomes among patients [ 57 , 58 ]. Past research has demonstrated the negative effects of discrimination based on race, class, and gender in healthcare settings, especially as it relates to poor ART adherence [ 59 , 60 ]. Indeed, a theme of feeling dehumanized, anonymous, and less than a whole person in health care institutions runs through several of the main findings in the present study, with serious implications for the health and well-being of AABH-PLWH.
Yet fear and medical distrust, even when prominent, do not necessarily eliminate willingness to participate in health care or medical research, as Westergaard and colleagues have noted [ 64 ]. We found participants are torn between, or perhaps immobilized by, the desire to engage in health care and take ART on the one hand, and strong desires to avoid negative health care settings and encounters on the other. There is a substantial literature on the role of counter-narrative understandings as impediments to HIV prevention among people of color [ 65 ], and this body of research calls for addressing current discrimination within the health care system and acknowledging the origins of counter-narratives in the context of historical discrimination.
Further, Self-determination Theory [ 66 ] has served as a grounding for interventions to address this type of ambivalence. Self-Determination Theory highlights the importance of the core needs of relatedness, autonomy, and competence [ 67 ].
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Indeed in a study of HIV-infected women, Quinlivan and colleagues [ 67 ] found that unmet needs for self-determination were common and related to poor HIV outcomes, and conclude that interventions that address core self-determination needs, including autonomy, may enhance the motivation for self-care among HIV-infected women [ 67 ]. Self-Determination Theory is the accepted theoretical underpinning of Motivational Interviewing [ 68 , 69 ], an approach considered culturally appropriate and highly efficacious for populations of color [ 70 ].
Similarly, Wagner and Bogart and colleagues [ 73 ] have developed a promising culturally appropriate ART adherence intervention for African American PLWH, one which foregrounds counter-narratives [ 73 ].
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Yet purposive, rather than a random sampling method, is consistent with the goals of qualitative research, which aims for depth rather than breadth. The present study yields a number of implications for clinical settings and health care and social service providers. The CRT approach highlights the notion that health care settings are located in a society characterized by structural racism and must adapt to that context.
Critical race theory and intersectionality proved to be useful frameworks for uncovering and exploring the principal mechanisms by which these structural factors affect individual health behavior and decisions among AABH-PLWH. Study findings have potential implications for interventions in health care settings. Special thanks to Dr. RF planned the study, conducted analyses, interpreted results, and helped write the manuscript.
MVG conceptualized and led the main study, helped interpret results, and wrote sections of the manuscript. ES conducted qualitative interviews, data analysis, and assisted with interpretation of data. All have given final approval of the version of the manuscript to be published. Participants gave signed informed consent for study activities. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Robert Freeman, Email: moc. Marya Viorst Gwadz, Email: ude. Elizabeth Silverman, Email: ude. Alexandra Kutnick, Email: ude.
Noelle R. Leonard, Email: ude. Amanda S. Ritchie, Email: ude. Jennifer Reed, Email: ude. Belkis Y. Martinez, Email: ude. National Center for Biotechnology Information , U. Int J Equity Health. Published online Mar Leonard , 2 Amanda S. Ritchie , 2 Jennifer Reed , 2 and Belkis Y. Martinez 2. Author information Article notes Copyright and License information Disclaimer. Corresponding author.
Received Dec 18; Accepted Mar This article has been cited by other articles in PMC. Conclusions Critical race theory proved useful in uncovering how macro-level structural racism affects individual-level health decisions and behaviors. Background Treatments for HIV infection have improved dramatically in recent years [ 1 ]. Procedures Participants selected for the present study were contacted by study staff via telephone to schedule one-on-one, in-person interviews at a community-based field site.
Analysis We used a systematic content analysis approach [ 47 , 48 ] that was both theory-driven and inductive. Open in a separate window. The structural correlates of medical distrust We found the theme of medical distrust was pervasive and powerful, and this distrust had profound effects on engagement in HIV care and uptake of ART. Moreover, lack of knowledge and suspected malicious intent on the part of healthcare providers and medical institutions about the efficaciousness and potential dangers of ART contributed to her understanding of taking ART as a type of experimentation, as she noted below: So what they basically doing is experimenting.
However, as Lawrence noted: All my doctors would beg me to take the medication. When he did eventually seek treatment, he experienced providers as ignoring the infection that brought him to the hospital, focusing instead on his decision not to take HIV medication, as he explained: I had not dealt with [the staph infection] before, and I was trying to cure it at home, you know. Implications The present study yields a number of implications for clinical settings and health care and social service providers.
Availability of data and materials Not applicable. Competing interests The authors declare that they have no competing interests. Consent for publication Not applicable. Ethics approval and consent to participate Procedures were approved by the Institutional Review Boards at New York University and two collaborating hospital sites.
Edited by Devon Carbado. Request Exam or Desk Copy. In late , the Million Man March drew hundreds of thousands of black men to Washington, DC, and seemed even to skeptics a powerful sign not only of black male solidarity, but also of black racial solidarity. Yet while generating a sense of community and common purpose, the Million Man March, with its deliberate exclusion of women and implicit rejection of black gay men, also highlighted one of the central faultlines in African American politics: the role of gender and sexuality in antiracist agenda.
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