Knowledge From the Afrikan World, For the World

PMC Articles

Social Location and Decision-Making Among Women Living with HIV in the Southern United States: An Intersectional Approach

PMCID: PMC11675124

PMID:

Abstract

HIV care engagement and antiretroviral therapy (ART) adherence interventions aimed at decreasing viral suppression disparities for women living with HIV (WLWH) in the Southern United States (i.e., the South) are few and seldom consider diverse social locations. These refer broadly and dynamically to contextual factors and the position people occupy in a social hierarchy based on intersecting systems of oppression and social determinants of health like gender, race/ethnic, and class inequities; geographic location; and HIV-related stigma. Using an intersectional approach, we conducted in-depth interviews and used a phased approach to directed content analysis to describe women’s perceptions of their social location and how it impacts their decision-making about HIV care engagement and ART adherence. Participants were recruited to participate from a broad geographic area and represented the diverse social locations occupied by WLWH in the South. Findings from 40 in-depth interviews include descriptions of how geographic context impacts HIV care engagement and medication adherence through access to care, quality of care, and the place-based context of day-to-day experiences of living with HIV. Participants spoke of multilevel power relationships based on their gender and racial identities, and how social determinants and intersecting identities occur simultaneously and vary as a function of one another to impact health and HIV care decision-making. The findings offer a nuanced understanding of how WLWH perceive their contextually specific social locations and make critical decisions about their HIV care engagement and medication adherence.

Full Text

Viral suppression, a low or undetectable level of HIV in the body, is the cornerstone of HIV treatment and prevention because it preserves health, prevents disease progression, and effectively eliminates risk of viral transmission to sexual partners [1]. Viral suppression is achieved by successfully linking people to HIV care and supporting adherence to antiretroviral therapy (ART) [1]. Women, based on assigned sex at birth, living in the Southern region of the United States (US) have the highest rate of HIV diagnoses [2] and the lowest rate of viral suppression among women in all regions of the country [3]. Similarly, while epidemiological data monitoring transgender women are lacking, a recent multi-cohort study of transgender women in the eastern and southern US found that HIV incidence and mortality rates were highest among those residing in the South [4]. The collective high rates of HIV, low viral suppression, and high mortality among all women living with HIV (WLWH) in the South represents a stark disparity [3].
HIV care engagement and ART adherence interventions aimed at decreasing viral suppression disparities for WLWH in the South are few and have failed to consider diverse social locations [5,6,7]. These refer broadly and dynamically to contextual factors and the position people occupy in a social hierarchy based on their intersecting systems of oppression and social determinants of health like gender, race/ethnic, and class inequities; geographic location; and HIV-related stigma [6,8,9,10]. Structural and social factors such as poverty, geographic location and HIV-related stigma are driving factors in the differences by race and ethnicity [11,12,13,14]. Black/African American and Latina/Hispanic women, hereafter referred to as Black and Latina, are disproportionately poorer than other subpopulations in the US [15], a significant precipitating factor for acquiring HIV [12,13,14] and subsequent suboptimal treatment and care outcomes [14]. Moreover, since 2008, HIV diagnoses and mortality rates have consistently been the highest in the South, an area affected by high poverty rates, racial inequities, regional resource inequities, and a cultural climate that likely fosters HIV-related stigma [16]. Evidence suggests that HIV-related stigma may be intensified among WLWH [17,18] and act as a structural barrier to HIV care engagement and ART adherence [5,11]. The diverse social locations of WLWH are intersectional, meaning they are uniquely shaped by intersecting systems of oppression and competing structural and social determinants of health [9,10,19,20,21]. Few studies have explicitly examined the pathways that intersecting systems of oppression create viral suppression disparities among women living with HIV, but Norcini Pala et al. (2022) found that the negative impact is likely mediated but not fully explained by lower ART adherence and WLWH who experience more 3 or levels of severe oppression have a 66% probability of ART nonadherence compared to their peers [22].
Women’s perceptions of their social location may not always align with the sociodemographic categories typical of biomedical research approaches [23]. At the individual level, WLWH in similar sociodemographic groups (e.g., women that identify as cisgender, Black, mothers, living with HIV and in poverty) demonstrate considerable heterogeneity in how they perceive their social locations and make decisions about care engagement and ART adherence [24]. In the clinical setting, variability is often observed when people present with what appears to be very similar health conditions and demographic profiles, but based on their perceptions of their circumstances respond quite differently as they attempt to manage their health condition. Interventions are typically aimed at broad demographic groups without considering important within-group variations and how the unique needs of subgroups might vary as they respond to structural and social determinants with both vulnerability and resilience [23]. To improve HIV care engagement, support ART adherence, and decrease disparities in viral suppression rates among the diverse group of WLWH in the South, a better understanding of how WLWH perceive their social locations and make decisions about HIV care engagement and ART adherence is needed. This paper is part of a broader exploratory multistage, sequential mixed methods study [25] guided by an intersectional framework [9], which aims to develop the most salient HIV care engagement and ART adherence messaging for WLWH from diverse social locations in the South. In this paper we present the findings from initial in-depth qualitative interviews centering the voices of cis and transgender WLWH in the South to determine how WLWH perceive their social locations and make decisions about HIV care engagement and ART adherence.
Intersectionality, the work of Black feminists and social scientists [9,10,26,27,28], offers a means of examining social location or intersecting systems of oppression and social determinants of health such as gender, race/ethnic, and class inequities; geographic location; and HIV-related stigma [9,10,29]. Intersectionality is a way of examining complexity in the human experience, including health experiences [10]. The central theoretical tenets of intersectionality include contextually specific social constructions, multilevel power relations, and simultaneity [30]. The first tenet, contextually specific social constructions, means that broad social categories like race and gender are treated as socially constructed phenomena deeply embedded in the social and contextual factors from which they are derived [30], such as geographical location. As a second tenet, intersectional scholars assert that people assigned or self-assigned to these broad social categories engage in social relationships characterized by multilevel power differentials and a social hierarchy reified by structural factors like policies, laws and rules benefiting the most powerful group(s) [30]. Use of an intersectional framework does not inherently suggest a deficit perspective; rather, it is a means of examining how people respond to different axes of power and social determinants with both vulnerability and resilience. A third core tenet posited is that social determinants and intersecting systems of oppression are not additive or multiplicative; rather, these phenomena occur simultaneously and vary as a function of one another [20]. As an example, the social location of a Black WLWH living in poverty may function quite differently than the social location of a White WLWH living in poverty; meaning, gender and class are “raced,” operating differently to influence health outcomes [20]. Simultaneity suggests that no single identity or social determinant of health comprising social location is primary, but that multiple dimensions exist simultaneously and subsequently shape health outcomes [26]. Methodologically, capturing simultaneity can be challenging, but we have applied a theoretically driven analytic approach to the qualitative data as a means for bridging the gap between this theory and praxis.
A convenience sample of participants were recruited from a broad geographic area and represented many social locations occupied by WLWH in the South. Gender was self-reported and included both cis and transgender women. Race, ethnicity, class (i.e., living either above or below the federally designated poverty line), and geographic location were also self-reported. Women self-identifying as Black, Latina, and White were included as they represent the three most highly affected racial/ethnic groups of WLWH in the South. Poverty level was measured using the US Census Bureau standards [31] and geographic location was determined using the participant’s self-reported zip code as the criteria and Federal Office of Rural Health Policy designation as a rural or non-rural [32]. Specifically, this project was implemented in rural and non-rural regions of the Centers for Disease Control and Prevention’s South Census Region for HIV funding which includes the following 16 states: Alabama, Arkansas, Delaware, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia [33].
We used the concept of information power to inform our proposed sample size [34]. There are five dimensions of information power (study aim, sample specificity, established theory, quality of dialog, and analysis strategy) and the more information the sample holds as it relates to the study purpose, the fewer participants are needed [34]. Our initial appraisal of the number of participants considered that the study purpose was somewhat broad, but that applying a well-established intersectional theoretical framework and putting mechanisms in place to foster strong interview dialog quality by having an experienced interviewer and a carefully crafted interview guide vetted by the study’s Community/Clinician Advisory Board (CCAB) enhanced the information power of the sample [34]. Additionally, we planned a theoretically driven analytic strategy that would involve both within and across case analyses [34]. Based on these considerations, a cautious provisional number (n = 36) was estimated and reassessed continually during the research process to ensure a comprehensive exploration of social location [34].
Participants were recruited across a broad geographic area of the South, facilitated by location-specific CCAB members and study personnel at both the North Carolina and Tennessee recruitment sites, and with virtual recruitment through targeted Facebook advertising. We used a multi-pronged approach: (1) placing flyers in community-based organizations and clinics for self-referral; (2) obtaining provider referrals of WLWH both in and out of care; (3) snowball referral recruitment methods [35]; (4) distributing the self-referral flyers via social media and email listservs for HIV/AIDS support organizations to which the CCAB members and study personnel belong; and (5) targeted Facebook advertising specifically aimed at people living in rural zip codes. Eligibility and contact information were gathered on the phone, and the interviews were conducted virtually via a HIPAA-compliant virtual platform (Webex or Zoom), given recruitment began during the peak of the COVID-19 pandemic.
We used qualitative descriptive methods [36,37], conducting in-depth interviews using a single interviewer with expertise in in-depth qualitative interviewing techniques. Participants were given the option of conducting the virtual interview by video or audio-only. The virtual interviews focused on the participants’ perceptions of their social locations and decision-making processes for HIV care engagement and ART adherence and experiences of stigma, discrimination, and resilience associated with HIV [36,37]. The interview questions were informed by prior research conducted by the study investigators, the HIV-related and intersectional stigma literature [6,19,38,39], and the study personnel’s collective experience working with this population. The interview questions were then vetted by the CCAB and revised accordingly prior to implementation [see Supplementary Material File]. Self-reported demographic data were collected by study personnel using REDCap® software (version 14.5.17), a secure online data management system, prior to commencing each participant interview.
A professional transcriptionist transcribed the digitally recorded interviews. The transcripts were then verified for accuracy by study personnel and imported into NVivo 12 for analysis. A core team of three study personnel (C.C., M.C., and J.A.) completed the analysis using a phased approach to directed content analysis [40] to describe women’s perceptions of their social location and how it impacts their decision-making about HIV care engagement and ART adherence. During the first phase of the analysis, each of the three study personnel familiarized themselves with the data by reading all of the transcripts [41]. They then independently coded 20% of the data (i.e., eight randomly selected transcripts) using a priori structural codes (Table 1). Not to be confused with structural issues or interventions, structural codes are a specific coding method where codes are derived from the primary theoretical concepts and research questions being explored [42,43,44]. Each of the structural codes was also assigned a valence code [43,44] denoting whether the health determinant was described by the participant as a strength (positive), a vulnerability (negative), or non-determinant (Table 1). By definition, a health determinant was considered a non-determinant when the participant indicated that it was not a factor in their health experiences or engagement and adherence outcomes. The remaining transcripts were then independently coded by two members of the analytic team. In the second phase of the analysis, the team used pattern coding [44] and examined variations in contextually specific social constructions based on geographical location. Additionally, the team analyzed the text for how participants’ social and structural valence patterns (strengths and vulnerabilities) may have influenced their reported HIV care engagement and medication adherence behaviors and for any instances in which two or more social or structural determinants co-occurred within a single statement or unit of text, indicating patterns of intersecting determinants of health (e.g., mutually constituted strengths, mutually constituted vulnerabilities, opposing determinants).
Throughout the analytic process, the analytic team members met regularly to discuss and reconcile discrepant or competing findings by adhering to the principles of study trustworthiness such as clearly linking the findings to the theoretical constructs of intersectionality and exploring rival explanations [43]. The initial coding was an iterative process, and intercoder reliability testing was carried out across several rounds using Cohen’s kappa coefficient until achieving weighted kappa values over 0.75, indicating substantial agreement [45]. The weighted range for all nodes and sources was 0.7500–0.8737 across the three coders. Calculating interrater reliability allowed the analytic team to identify codes that needed clarification, discuss areas where interpretations conflicted, discuss nuance and complexity, practice reflexivity, and refine the codebook and coding procedure [41]. We also considered field notes, practiced reflexivity by journaling personal beliefs and biases, and maintained an audit trail [44]. As a final step, the analytic team presented the preliminary findings to the research team and CCAB members to solicit feedback and refine the findings. Findings have been organized using the tenets of intersectionality to explain the central features of how the participants described and ascribed meaning to their social locations and the role that location played in their decisions regarding HIV care engagement and medication adherence.
Sixty-two potential participants were screened between January and September 2022. Of these, forty (n = 40) eligible participants completed interviews, representing seven (7) different states in the South. Data collection ceased when informational redundancy was noted [46]. The participants ranged in age from 23 to 72 years (M = 51.2) and reported living with HIV for 2 to 36 years with most (85%) reporting over 10 years. Most of the sample identified as Black (87.5%), living below the Federal Poverty level (57.5%), and residing in nonrural areas of the South (75%). All the participants self-identified as women (Table 2).
…especially as the females, [we] deal with low self-esteem, and that we are not wanted, or we are ostracized. But as a female African American living with HIV, I am loving me. I feel confident in who I am. I feel encouraged and endowed to help and to share with other women that they need to get into care, to get the treatment. I am also an advocate of women that needs to know who they are, their self. Loving their self and letting them know it’s not the end of life. We’ll be okay. [Participant L]. Please see Table 3 detailing the findings and additional illustrative quotes.
The purpose of this study was to center the voices of cis and transgender WLWH from diverse social locations in the South to determine how they perceive their social locations and make decisions about HIV care engagement and ART adherence. Women have consistently been underrepresented and understudied in HIV research [47] and in the South, the region of the country objectively most impacted by the HIV epidemic. Therefore, examining HIV care engagement and ART adherence among WLWH in the South through an intersectional lens adds to the literature by incorporating their experiences for a more comprehensive and nuanced view of the social and structural factors affecting their well-being. The study sample reflects the perspectives of a heterogeneous group of WLWH in the South and reveals the variability in their perspectives toward HIV care engagement and ART adherence. The findings from the content analysis also illuminate the jointly determined systems of gender, race/ethnic, and class inequities, geographic location, and HIV-related stigma shaping social location and specifically how WLWH in the South interpret and navigate the implications of their social locations to engage in HIV care and adhere to their medications. A major finding was how the participants’ geographic context impacted their HIV care engagement and medication adherence through access to care, quality of care, and the place-based context of day-to-day experiences of living with HIV.
The contextually specific nature of the study (the South) and its focus on health determinants of a specific condition (HIV) in a specific population (persons who identify as women living with HIV) illustrate how disease-specific phenomena like HIV-related stigma and socially constructed identities like gender may interact to create mutually constituted determinants of health [24]. At the same time, these findings demonstrate the importance of a nuanced understanding of the heterogeneity within contextually specific social locations by examining variability within seemingly similar groups of women. To compare Southern rural dwelling and non-rural dwelling persons living with HIV and simply conclude that rural-dwelling persons lag in HIV care engagement and medication adherence based on locale is not actionable, accurate, or empowering. Rurality itself is not necessarily a negative determinant of health and as demonstrated in the findings, can be positive for some who find safety and tranquility in more rural communities; rather, a more complex examination of how socially constructed identities like gender and race interact with geographical context through mechanisms like stigma is needed to create relevant and contextually specific interventions.
Our findings related to the detrimental ways unequal power relationships and simultaneity operate to shape the experiences of WLWH and their subsequent health outcomes, particularly for women of color, align with the tenets of intersectionality and offer insights into the ways WLWH navigate their social locations with both resilience and vulnerability. The way in which White participants’ narratives worked to perpetuate racial domination and reify social inequality also warrants acknowledgment and further examination of how whiteness and privilege as the dominant racial group is central to producing health inequities [26]. Additionally, given the findings highlight how particular structural inequities related to gender and race can produce poorer health outcomes, they reinforce the argument for population-based structural interventions that alter the broader context in which people make health choices [48,49].
From a clinical perspective, these exploratory findings have important implications for health practitioners as they consider the social inequities shaping their clients’ health experiences, learn to recognize the power differentials that may be present in any given clinical encounter, and examine the role they may play as providers in ameliorating or perpetuating such factors [50,51]. Clinician participation in policy advocacy is an important strategy for helping to reform the structural forces shaping the health system and HIV care. The findings also strengthen the notion that it is incumbent on healthcare providers and leaders to competently recognize that healthcare systems operate in a larger social context and address areas of structural vulnerability for the populations they serve through equitable policies and practices [49,51]. From a research perspective, the findings provide evidence for the within group heterogeneity of health experiences among WLWH and the need to continue to explore robust qualitative, quantitative and mixed method analytic approaches to capture the complexity inherent in intersectional approaches for the advancement of population health and policy formation [24].
Some limitations of this study should be noted. First, the study sample lacked diversity in certain domains such as self-identified race despite employing a multipronged recruitment strategy making some of the anticipated intercategorical intersectional analytic comparisons challenging. Second, all but two (n = 2) of the participants reported being at least minimally engaged in HIV care, and their experiences may not reflect the experiences of those WLWH in the South who are not at all engaged in care. Investigators may wish to consider our recruitment challenges as they design future studies and refer to the literature for reaching stigmatized populations [52,53] and executing research in a global pandemic [54,55]. Finally, the intentionally broad and open-ended interview questions related to participants’ resources did not yield a comprehensive understanding of their economic resources in relation to a social hierarchy; thus, the class component typically included in intersectional analyses was not examined in this study. However, analytical quality and trustworthiness of the presented findings were ensured through several mechanisms such as intercoder reliability [41]; regular research team meetings to discuss coding and divergent findings [43]; congruence among the study design, methods, and guiding theoretical framework [43]; creating and retaining an audit trail of all analytic procedures [43]; practicing reflexive thinking [43]; and sharing our findings with the CCAB to confirm authenticity and acceptability.

Sections

"[{\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B1-ijerph-21-01575\", \"B1-ijerph-21-01575\", \"B2-ijerph-21-01575\", \"B3-ijerph-21-01575\", \"B4-ijerph-21-01575\", \"B3-ijerph-21-01575\"], \"section\": \"1. Introduction\", \"text\": \"Viral suppression, a low or undetectable level of HIV in the body, is the cornerstone of HIV treatment and prevention because it preserves health, prevents disease progression, and effectively eliminates risk of viral transmission to sexual partners [1]. Viral suppression is achieved by successfully linking people to HIV care and supporting adherence to antiretroviral therapy (ART) [1]. Women, based on assigned sex at birth, living in the Southern region of the United States (US) have the highest rate of HIV diagnoses [2] and the lowest rate of viral suppression among women in all regions of the country [3]. Similarly, while epidemiological data monitoring transgender women are lacking, a recent multi-cohort study of transgender women in the eastern and southern US found that HIV incidence and mortality rates were highest among those residing in the South [4]. The collective high rates of HIV, low viral suppression, and high mortality among all women living with HIV (WLWH) in the South represents a stark disparity [3].\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B5-ijerph-21-01575\", \"B6-ijerph-21-01575\", \"B7-ijerph-21-01575\", \"B6-ijerph-21-01575\", \"B8-ijerph-21-01575\", \"B9-ijerph-21-01575\", \"B10-ijerph-21-01575\", \"B11-ijerph-21-01575\", \"B12-ijerph-21-01575\", \"B13-ijerph-21-01575\", \"B14-ijerph-21-01575\", \"B15-ijerph-21-01575\", \"B12-ijerph-21-01575\", \"B13-ijerph-21-01575\", \"B14-ijerph-21-01575\", \"B14-ijerph-21-01575\", \"B16-ijerph-21-01575\", \"B17-ijerph-21-01575\", \"B18-ijerph-21-01575\", \"B5-ijerph-21-01575\", \"B11-ijerph-21-01575\", \"B9-ijerph-21-01575\", \"B10-ijerph-21-01575\", \"B19-ijerph-21-01575\", \"B20-ijerph-21-01575\", \"B21-ijerph-21-01575\", \"B22-ijerph-21-01575\"], \"section\": \"1. Introduction\", \"text\": \"HIV care engagement and ART adherence interventions aimed at decreasing viral suppression disparities for WLWH in the South are few and have failed to consider diverse social locations [5,6,7]. These refer broadly and dynamically to contextual factors and the position people occupy in a social hierarchy based on their intersecting systems of oppression and social determinants of health like gender, race/ethnic, and class inequities; geographic location; and HIV-related stigma [6,8,9,10]. Structural and social factors such as poverty, geographic location and HIV-related stigma are driving factors in the differences by race and ethnicity [11,12,13,14]. Black/African American and Latina/Hispanic women, hereafter referred to as Black and Latina, are disproportionately poorer than other subpopulations in the US [15], a significant precipitating factor for acquiring HIV [12,13,14] and subsequent suboptimal treatment and care outcomes [14]. Moreover, since 2008, HIV diagnoses and mortality rates have consistently been the highest in the South, an area affected by high poverty rates, racial inequities, regional resource inequities, and a cultural climate that likely fosters HIV-related stigma [16]. Evidence suggests that HIV-related stigma may be intensified among WLWH [17,18] and act as a structural barrier to HIV care engagement and ART adherence [5,11]. The diverse social locations of WLWH are intersectional, meaning they are uniquely shaped by intersecting systems of oppression and competing structural and social determinants of health [9,10,19,20,21]. Few studies have explicitly examined the pathways that intersecting systems of oppression create viral suppression disparities among women living with HIV, but Norcini Pala et al. (2022) found that the negative impact is likely mediated but not fully explained by lower ART adherence and WLWH who experience more 3 or levels of severe oppression have a 66% probability of ART nonadherence compared to their peers [22].\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B23-ijerph-21-01575\", \"B24-ijerph-21-01575\", \"B23-ijerph-21-01575\", \"B25-ijerph-21-01575\", \"B9-ijerph-21-01575\"], \"section\": \"1. Introduction\", \"text\": \"Women\\u2019s perceptions of their social location may not always align with the sociodemographic categories typical of biomedical research approaches [23]. At the individual level, WLWH in similar sociodemographic groups (e.g., women that identify as cisgender, Black, mothers, living with HIV and in poverty) demonstrate considerable heterogeneity in how they perceive their social locations and make decisions about care engagement and ART adherence [24]. In the clinical setting, variability is often observed when people present with what appears to be very similar health conditions and demographic profiles, but based on their perceptions of their circumstances respond quite differently as they attempt to manage their health condition. Interventions are typically aimed at broad demographic groups without considering important within-group variations and how the unique needs of subgroups might vary as they respond to structural and social determinants with both vulnerability and resilience [23]. To improve HIV care engagement, support ART adherence, and decrease disparities in viral suppression rates among the diverse group of WLWH in the South, a better understanding of how WLWH perceive their social locations and make decisions about HIV care engagement and ART adherence is needed. This paper is part of a broader exploratory multistage, sequential mixed methods study [25] guided by an intersectional framework [9], which aims to develop the most salient HIV care engagement and ART adherence messaging for WLWH from diverse social locations in the South. In this paper we present the findings from initial in-depth qualitative interviews centering the voices of cis and transgender WLWH in the South to determine how WLWH perceive their social locations and make decisions about HIV care engagement and ART adherence.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B9-ijerph-21-01575\", \"B10-ijerph-21-01575\", \"B26-ijerph-21-01575\", \"B27-ijerph-21-01575\", \"B28-ijerph-21-01575\", \"B9-ijerph-21-01575\", \"B10-ijerph-21-01575\", \"B29-ijerph-21-01575\", \"B10-ijerph-21-01575\", \"B30-ijerph-21-01575\", \"B30-ijerph-21-01575\", \"B30-ijerph-21-01575\", \"B20-ijerph-21-01575\", \"B20-ijerph-21-01575\", \"B26-ijerph-21-01575\"], \"section\": \"Theoretical Framework: Intersectionality\", \"text\": \"Intersectionality, the work of Black feminists and social scientists [9,10,26,27,28], offers a means of examining social location or intersecting systems of oppression and social determinants of health such as gender, race/ethnic, and class inequities; geographic location; and HIV-related stigma [9,10,29]. Intersectionality is a way of examining complexity in the human experience, including health experiences [10]. The central theoretical tenets of intersectionality include contextually specific social constructions, multilevel power relations, and simultaneity [30]. The first tenet, contextually specific social constructions, means that broad social categories like race and gender are treated as socially constructed phenomena deeply embedded in the social and contextual factors from which they are derived [30], such as geographical location. As a second tenet, intersectional scholars assert that people assigned or self-assigned to these broad social categories engage in social relationships characterized by multilevel power differentials and a social hierarchy reified by structural factors like policies, laws and rules benefiting the most powerful group(s) [30]. Use of an intersectional framework does not inherently suggest a deficit perspective; rather, it is a means of examining how people respond to different axes of power and social determinants with both vulnerability and resilience. A third core tenet posited is that social determinants and intersecting systems of oppression are not additive or multiplicative; rather, these phenomena occur simultaneously and vary as a function of one another [20]. As an example, the social location of a Black WLWH living in poverty may function quite differently than the social location of a White WLWH living in poverty; meaning, gender and class are \\u201craced,\\u201d operating differently to influence health outcomes [20]. Simultaneity suggests that no single identity or social determinant of health comprising social location is primary, but that multiple dimensions exist simultaneously and subsequently shape health outcomes [26]. Methodologically, capturing simultaneity can be challenging, but we have applied a theoretically driven analytic approach to the qualitative data as a means for bridging the gap between this theory and praxis.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B31-ijerph-21-01575\", \"B32-ijerph-21-01575\", \"B33-ijerph-21-01575\"], \"section\": \"2.1. Sampling\", \"text\": \"A convenience sample of participants were recruited from a broad geographic area and represented many social locations occupied by WLWH in the South. Gender was self-reported and included both cis and transgender women. Race, ethnicity, class (i.e., living either above or below the federally designated poverty line), and geographic location were also self-reported. Women self-identifying as Black, Latina, and White were included as they represent the three most highly affected racial/ethnic groups of WLWH in the South. Poverty level was measured using the US Census Bureau standards [31] and geographic location was determined using the participant\\u2019s self-reported zip code as the criteria and Federal Office of Rural Health Policy designation as a rural or non-rural [32]. Specifically, this project was implemented in rural and non-rural regions of the Centers for Disease Control and Prevention\\u2019s South Census Region for HIV funding which includes the following 16 states: Alabama, Arkansas, Delaware, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia [33].\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B34-ijerph-21-01575\", \"B34-ijerph-21-01575\", \"B34-ijerph-21-01575\", \"B34-ijerph-21-01575\", \"B34-ijerph-21-01575\"], \"section\": \"2.2. Information Power\", \"text\": \"We used the concept of information power to inform our proposed sample size [34]. There are five dimensions of information power (study aim, sample specificity, established theory, quality of dialog, and analysis strategy) and the more information the sample holds as it relates to the study purpose, the fewer participants are needed [34]. Our initial appraisal of the number of participants considered that the study purpose was somewhat broad, but that applying a well-established intersectional theoretical framework and putting mechanisms in place to foster strong interview dialog quality by having an experienced interviewer and a carefully crafted interview guide vetted by the study\\u2019s Community/Clinician Advisory Board (CCAB) enhanced the information power of the sample [34]. Additionally, we planned a theoretically driven analytic strategy that would involve both within and across case analyses [34]. Based on these considerations, a cautious provisional number (n = 36) was estimated and reassessed continually during the research process to ensure a comprehensive exploration of social location [34].\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B35-ijerph-21-01575\"], \"section\": \"2.4. Recruitment\", \"text\": \"Participants were recruited across a broad geographic area of the South, facilitated by location-specific CCAB members and study personnel at both the North Carolina and Tennessee recruitment sites, and with virtual recruitment through targeted Facebook advertising. We used a multi-pronged approach: (1) placing flyers in community-based organizations and clinics for self-referral; (2) obtaining provider referrals of WLWH both in and out of care; (3) snowball referral recruitment methods [35]; (4) distributing the self-referral flyers via social media and email listservs for HIV/AIDS support organizations to which the CCAB members and study personnel belong; and (5) targeted Facebook advertising specifically aimed at people living in rural zip codes. Eligibility and contact information were gathered on the phone, and the interviews were conducted virtually via a HIPAA-compliant virtual platform (Webex or Zoom), given recruitment began during the peak of the COVID-19 pandemic.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B36-ijerph-21-01575\", \"B37-ijerph-21-01575\", \"B36-ijerph-21-01575\", \"B37-ijerph-21-01575\", \"B6-ijerph-21-01575\", \"B19-ijerph-21-01575\", \"B38-ijerph-21-01575\", \"B39-ijerph-21-01575\", \"app1-ijerph-21-01575\"], \"section\": \"2.6. Study Procedures\", \"text\": \"We used qualitative descriptive methods [36,37], conducting in-depth interviews using a single interviewer with expertise in in-depth qualitative interviewing techniques. Participants were given the option of conducting the virtual interview by video or audio-only. The virtual interviews focused on the participants\\u2019 perceptions of their social locations and decision-making processes for HIV care engagement and ART adherence and experiences of stigma, discrimination, and resilience associated with HIV [36,37]. The interview questions were informed by prior research conducted by the study investigators, the HIV-related and intersectional stigma literature [6,19,38,39], and the study personnel\\u2019s collective experience working with this population. The interview questions were then vetted by the CCAB and revised accordingly prior to implementation [see Supplementary Material File]. Self-reported demographic data were collected by study personnel using REDCap\\u00ae software (version 14.5.17), a secure online data management system, prior to commencing each participant interview.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B40-ijerph-21-01575\", \"B41-ijerph-21-01575\", \"ijerph-21-01575-t001\", \"B42-ijerph-21-01575\", \"B43-ijerph-21-01575\", \"B44-ijerph-21-01575\", \"B43-ijerph-21-01575\", \"B44-ijerph-21-01575\", \"ijerph-21-01575-t001\", \"B44-ijerph-21-01575\"], \"section\": \"2.7. Data Management and Analysis\", \"text\": \"A professional transcriptionist transcribed the digitally recorded interviews. The transcripts were then verified for accuracy by study personnel and imported into NVivo 12 for analysis. A core team of three study personnel (C.C., M.C., and J.A.) completed the analysis using a phased approach to directed content analysis [40] to describe women\\u2019s perceptions of their social location and how it impacts their decision-making about HIV care engagement and ART adherence. During the first phase of the analysis, each of the three study personnel familiarized themselves with the data by reading all of the transcripts [41]. They then independently coded 20% of the data (i.e., eight randomly selected transcripts) using a priori structural codes (Table 1). Not to be confused with structural issues or interventions, structural codes are a specific coding method where codes are derived from the primary theoretical concepts and research questions being explored [42,43,44]. Each of the structural codes was also assigned a valence code [43,44] denoting whether the health determinant was described by the participant as a strength (positive), a vulnerability (negative), or non-determinant (Table 1). By definition, a health determinant was considered a non-determinant when the participant indicated that it was not a factor in their health experiences or engagement and adherence outcomes. The remaining transcripts were then independently coded by two members of the analytic team. In the second phase of the analysis, the team used pattern coding [44] and examined variations in contextually specific social constructions based on geographical location. Additionally, the team analyzed the text for how participants\\u2019 social and structural valence patterns (strengths and vulnerabilities) may have influenced their reported HIV care engagement and medication adherence behaviors and for any instances in which two or more social or structural determinants co-occurred within a single statement or unit of text, indicating patterns of intersecting determinants of health (e.g., mutually constituted strengths, mutually constituted vulnerabilities, opposing determinants).\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B43-ijerph-21-01575\", \"B45-ijerph-21-01575\", \"B41-ijerph-21-01575\", \"B44-ijerph-21-01575\"], \"section\": \"2.7. Data Management and Analysis\", \"text\": \"Throughout the analytic process, the analytic team members met regularly to discuss and reconcile discrepant or competing findings by adhering to the principles of study trustworthiness such as clearly linking the findings to the theoretical constructs of intersectionality and exploring rival explanations [43]. The initial coding was an iterative process, and intercoder reliability testing was carried out across several rounds using Cohen\\u2019s kappa coefficient until achieving weighted kappa values over 0.75, indicating substantial agreement [45]. The weighted range for all nodes and sources was 0.7500\\u20130.8737 across the three coders. Calculating interrater reliability allowed the analytic team to identify codes that needed clarification, discuss areas where interpretations conflicted, discuss nuance and complexity, practice reflexivity, and refine the codebook and coding procedure [41]. We also considered field notes, practiced reflexivity by journaling personal beliefs and biases, and maintained an audit trail [44]. As a final step, the analytic team presented the preliminary findings to the research team and CCAB members to solicit feedback and refine the findings. Findings have been organized using the tenets of intersectionality to explain the central features of how the participants described and ascribed meaning to their social locations and the role that location played in their decisions regarding HIV care engagement and medication adherence.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B46-ijerph-21-01575\", \"ijerph-21-01575-t002\"], \"section\": \"3.1. Participant Characteristics\", \"text\": \"Sixty-two potential participants were screened between January and September 2022. Of these, forty (n = 40) eligible participants completed interviews, representing seven (7) different states in the South. Data collection ceased when informational redundancy was noted [46]. The participants ranged in age from 23 to 72 years (M = 51.2) and reported living with HIV for 2 to 36 years with most (85%) reporting over 10 years. Most of the sample identified as Black (87.5%), living below the Federal Poverty level (57.5%), and residing in nonrural areas of the South (75%). All the participants self-identified as women (Table 2).\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"ijerph-21-01575-t003\"], \"section\": \"\", \"text\": \"\\u2026especially as the females, [we] deal with low self-esteem, and that we are not wanted, or we are ostracized. But as a female African American living with HIV, I am loving me. I feel confident in who I am. I feel encouraged and endowed to help and to share with other women that they need to get into care, to get the treatment. I am also an advocate of women that needs to know who they are, their self. Loving their self and letting them know it\\u2019s not the end of life. We\\u2019ll be okay. [Participant L]. Please see Table 3 detailing the findings and additional illustrative quotes.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B47-ijerph-21-01575\"], \"section\": \"4. Discussion\", \"text\": \"The purpose of this study was to center the voices of cis and transgender WLWH from diverse social locations in the South to determine how they perceive their social locations and make decisions about HIV care engagement and ART adherence. Women have consistently been underrepresented and understudied in HIV research [47] and in the South, the region of the country objectively most impacted by the HIV epidemic. Therefore, examining HIV care engagement and ART adherence among WLWH in the South through an intersectional lens adds to the literature by incorporating their experiences for a more comprehensive and nuanced view of the social and structural factors affecting their well-being. The study sample reflects the perspectives of a heterogeneous group of WLWH in the South and reveals the variability in their perspectives toward HIV care engagement and ART adherence. The findings from the content analysis also illuminate the jointly determined systems of gender, race/ethnic, and class inequities, geographic location, and HIV-related stigma shaping social location and specifically how WLWH in the South interpret and navigate the implications of their social locations to engage in HIV care and adhere to their medications. A major finding was how the participants\\u2019 geographic context impacted their HIV care engagement and medication adherence through access to care, quality of care, and the place-based context of day-to-day experiences of living with HIV.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B24-ijerph-21-01575\"], \"section\": \"4. Discussion\", \"text\": \"The contextually specific nature of the study (the South) and its focus on health determinants of a specific condition (HIV) in a specific population (persons who identify as women living with HIV) illustrate how disease-specific phenomena like HIV-related stigma and socially constructed identities like gender may interact to create mutually constituted determinants of health [24]. At the same time, these findings demonstrate the importance of a nuanced understanding of the heterogeneity within contextually specific social locations by examining variability within seemingly similar groups of women. To compare Southern rural dwelling and non-rural dwelling persons living with HIV and simply conclude that rural-dwelling persons lag in HIV care engagement and medication adherence based on locale is not actionable, accurate, or empowering. Rurality itself is not necessarily a negative determinant of health and as demonstrated in the findings, can be positive for some who find safety and tranquility in more rural communities; rather, a more complex examination of how socially constructed identities like gender and race interact with geographical context through mechanisms like stigma is needed to create relevant and contextually specific interventions.\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B26-ijerph-21-01575\", \"B48-ijerph-21-01575\", \"B49-ijerph-21-01575\"], \"section\": \"4. Discussion\", \"text\": \"Our findings related to the detrimental ways unequal power relationships and simultaneity operate to shape the experiences of WLWH and their subsequent health outcomes, particularly for women of color, align with the tenets of intersectionality and offer insights into the ways WLWH navigate their social locations with both resilience and vulnerability. The way in which White participants\\u2019 narratives worked to perpetuate racial domination and reify social inequality also warrants acknowledgment and further examination of how whiteness and privilege as the dominant racial group is central to producing health inequities [26]. Additionally, given the findings highlight how particular structural inequities related to gender and race can produce poorer health outcomes, they reinforce the argument for population-based structural interventions that alter the broader context in which people make health choices [48,49].\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B50-ijerph-21-01575\", \"B51-ijerph-21-01575\", \"B49-ijerph-21-01575\", \"B51-ijerph-21-01575\", \"B24-ijerph-21-01575\"], \"section\": \"4. Discussion\", \"text\": \"From a clinical perspective, these exploratory findings have important implications for health practitioners as they consider the social inequities shaping their clients\\u2019 health experiences, learn to recognize the power differentials that may be present in any given clinical encounter, and examine the role they may play as providers in ameliorating or perpetuating such factors [50,51]. Clinician participation in policy advocacy is an important strategy for helping to reform the structural forces shaping the health system and HIV care. The findings also strengthen the notion that it is incumbent on healthcare providers and leaders to competently recognize that healthcare systems operate in a larger social context and address areas of structural vulnerability for the populations they serve through equitable policies and practices [49,51]. From a research perspective, the findings provide evidence for the within group heterogeneity of health experiences among WLWH and the need to continue to explore robust qualitative, quantitative and mixed method analytic approaches to capture the complexity inherent in intersectional approaches for the advancement of population health and policy formation [24].\"}, {\"pmc\": \"PMC11675124\", \"pmid\": \"\", \"reference_ids\": [\"B52-ijerph-21-01575\", \"B53-ijerph-21-01575\", \"B54-ijerph-21-01575\", \"B55-ijerph-21-01575\", \"B41-ijerph-21-01575\", \"B43-ijerph-21-01575\", \"B43-ijerph-21-01575\", \"B43-ijerph-21-01575\", \"B43-ijerph-21-01575\"], \"section\": \"4. Discussion\", \"text\": \"Some limitations of this study should be noted. First, the study sample lacked diversity in certain domains such as self-identified race despite employing a multipronged recruitment strategy making some of the anticipated intercategorical intersectional analytic comparisons challenging. Second, all but two (n = 2) of the participants reported being at least minimally engaged in HIV care, and their experiences may not reflect the experiences of those WLWH in the South who are not at all engaged in care. Investigators may wish to consider our recruitment challenges as they design future studies and refer to the literature for reaching stigmatized populations [52,53] and executing research in a global pandemic [54,55]. Finally, the intentionally broad and open-ended interview questions related to participants\\u2019 resources did not yield a comprehensive understanding of their economic resources in relation to a social hierarchy; thus, the class component typically included in intersectional analyses was not examined in this study. However, analytical quality and trustworthiness of the presented findings were ensured through several mechanisms such as intercoder reliability [41]; regular research team meetings to discuss coding and divergent findings [43]; congruence among the study design, methods, and guiding theoretical framework [43]; creating and retaining an audit trail of all analytic procedures [43]; practicing reflexive thinking [43]; and sharing our findings with the CCAB to confirm authenticity and acceptability.\"}]"

Metadata

"{}"