Abstract
In Miami-Dade County, women with HIV (WWH) enrolled in Ryan White Program (RWP) services belong to groups that have historically faced structural barriers to care. To examine provider perceptions of WWH's barriers to care and elicit possible solutions, we conducted semi-structured interviews (n = 20) with medical case managers and human immunodeficiency virus (HIV) healthcare providers from medical case management sites serving WWH enrolled in the Miami-Dade RWP. Verbatim transcripts were analyzed thematically by two coders through an iterative process; disagreements were resolved through consensus. Barriers included lack of disclosure and stigma, additional psychosocial barriers to care, structural and logistical barriers, and negative interactions with health care providers. Participant suggestions to address these barriers included strategies that support women and foster individualized services that are responsive to their lived experiences and needs. Other solutions, such as those related to transportation, housing, and general funding for the RWP, will require advocacy and policy change.
Introduction
Although great progress has been made in improving human immunodeficiency virus (HIV) care outcomes, women with HIV (WWH) face unique challenges to maintaining care along the HIV care continuum. The Ryan White HIV/AIDS Program (RWP), funded by the Health Resources and Services Administration (HRSA), provides comprehensive HIV medical care, medications, medical case management services, and ancillary support services to over 500,000 individuals in the United States. 1 In 2018, 26.5% of all RWP recipients were female. 2 In Florida, females make up a slightly larger proportion of the RWP recipients at 30.5%. 2 Nationally, the proportion of WWH enrolled in RWP services who are virally suppressed is slightly below the national average (86.8% for WWH compared to 87.1% overall). 2 In Miami-Dade County, WWH enrolled in RWP services belong to groups that have historically faced structural barriers to care: compared to national averages, in Miami-Dade County, a higher proportion identified as Black/African-American in 2018 (67%, including Haitians, compared to 47% nationwide) and Hispanic (29% compared to 23%).3,4 Compared to their male counterparts, WWH in RWP care in Miami-Dade County are also less likely to achieve a suppressed HIV viral load (78% vs 83%). 4 As the payer of last resort, RWP services represent a critical safety net for individuals who do not otherwise have access to healthcare. To be eligible for RWP services in Florida, individuals must be living with HIV, living at or below 400% of the Federal Poverty Level (FPL), and cannot be receiving the same services from Medicaid or another type of insurance. 5
Women-centered care, which recognizes women's lived experiences and intentionally addresses the barriers to care disproportionately experienced by women, has been proposed as a strategy to improve outcomes across the HIV continuum of care for WWH. 6 Providers of HIV medical care, along with medical case managers and other members of the healthcare team, are key stakeholders in any effort that seeks to improve the extent to which women's unique needs are addressed in HIV clinical care and support services. Those who work closely with WWH may also possess a wealth of insight into the barriers experienced by this group, as well as experience implementing formal or informal programs to address barriers to care and retention among their women clients. However, there is a gap in the literature documenting their perceptions. Although it is important to understand WWH's perspectives directly (we have undertaken projects to do so; results are forthcoming), we also believe that there is much to be gained from interviewing a range of providers who spend every day advocating for and treating WWH.
To more fully understand the unique barriers to care faced by WWH enrolled in Miami-Dade County's RWP, this study explored provider perceptions of barriers to care for WWH, along with their ideas for solutions that would improve access to and retention in HIV care for WWH.
Methods
Study Design
Twenty in-depth key informant interviews were carried out with 10 medical case managers and 10 health care providers and administrators who had at least 2 years of experience working with clients in the RWP. Participants were recruited from medical case management sites providing care to women enrolled in the Miami-Dade RWP. Interviews were conducted by the study's principal investigator and co-investigator outside of regular business hours using a semi-structured interview guide. Participants received a $100 incentive. The interviews lasted approximately 60 to 90 min and were digitally recorded after receiving written informed consent from participants. The recordings were transcribed verbatim, and the transcripts were imported into NVivo 12 (QSR) for data management and analysis.
Analysis
Thematic analysis of the key informant interviews was completed; sample interview questions are included in Table 1. Coding was completed using an iterative process. To develop the initial codebook, two coders independently coded three interviews; final codes were agreed upon through discussion and consensus. Two additional coders were trained using this initial codebook. As the remaining interviews were coded and additional themes emerged, they were added to the initial codebook after discussion and consensus. A total of 2 coders analyzed each interview; 1 coder coded all 20 interviews to ensure continuity of themes throughout the coding process and prevent drifting. Any disagreements were resolved through discussion and consensus.
Sample Questions Included in the Interview Guide.
Abbreviation: HIV: human immunodeficiency virus.
Ethical Approval and Informed Consent
The Florida International University Social and Behavioral Institutional Review Board approved this study. Participants gave written informed consent prior to completing the interviews.
Results
Demographics
Table 2 shows the characteristics of the 20 key informants who participated in the study. The majority were female (85%); most were medical case managers, and more than half were Black or African-American (55%). Half of the participants had worked with HIV clients for 20 years or more; 60% had worked with RWP clients for 10 years or more (Table 2).
Participant Sociodemographic Characteristics (n = 20).
The total exceeded 20 because two participants belong to more than one category.
Abbreviation: HIV, human immunodeficiency virus.
Summary of Themes
Barriers that emerged from the data included disclosure and stigma, additional psychosocial barriers to care, structural and logistical barriers, and negative interactions with some health care providers. Participants also provided ideas related to possible solutions to address these barriers to care for WWH.
Table 3 summarizes provider suggestions that arose during the interviews to address barriers to care for WWH through the provision of individualized care that is sensitive to women's unique experiences. Participants highlighted efforts at their organizations to provide support for HIV disclosure. They underscored the need to avoid accidental HIV disclosure through individualized services that would not be directly identified as HIV-related. Participants also emphasized the importance of increased availability of childcare services and support groups specific to women, as well as peer navigators who are women.
Provider Perceptions of Barriers to Care for Women Living with HIV and Policy and Programmatic Implications.
Abbreviations: HIV, human immunodeficiency virus; RWP, Ryan White Program.
Disclosure and Stigma
Lack of Disclosure
Lack of disclosure was discussed within the context of sexual partners, family, and friends. One of the most frequently mentioned ways lack of disclosure served as a barrier was by causing women to hide their medication through methods such as switching their HIV medications into vitamin bottles. This impacted adherence, as participants noted that their clients sometimes forget where they put their medication after hiding medications from close relations, or their clients do not carry medication around with them because they don't want others to see the medication and ask questions. Another participant noted their clients don't want to take their medication to work with them and highlighted the importance of medication regimens that only consist of one or two pills per day. Secondary to medication adherence, participants highlighted that lack of disclosure of HIV status also limited preexposure prophylaxis (PrEP) use among partners of WWH and, in relation to the postnatal period, potentially impacted follow-up care for high-risk newborns.
Participants also discussed lack of disclosure due to women's fear of retribution or violence from partners, as shown by the following exemplars:
Another participant highlighted a perceived generational difference in comfort with disclosure due to varying levels of HIV awareness:
As examples of potential solutions for lack of disclosure, participants described the way their agencies provide support services for partner disclosure (Table 3).
Fear of Disclosure Related to HIV Stigma
Participants’ discussions of their clients’ disclosure fear frequently cited issues of stigma. For example, fear of disclosure to family or friends was mentioned in relation to HIV stigma, as highlighted by the following:
Participants emphasized the importance of their clients’ disclosure to family members to build a support system to better manage their HIV care, but also noted that their clients are hesitant to disclose their status to family and friends because they often do not want to discuss how they became infected with HIV. For example:
Participants also described the mental health burden contemplating disclosure has on their clients:
Another provider noted:
Participants related the stigma to the history of HIV, and noted that, as they work with their clients, the clients become more comfortable with the idea of disclosing their HIV status:
To address the challenges caused by lack of disclosure, participants highlighted the importance of healthcare professionals creating a support system when family and friends were not aware of their clients’ HIV status, as well as the significance of creating a safe place for their clients (Table 3).
Fear of Accidental Disclosure
Participants discussed the role stigma plays in relation to issues surrounding their clients’ fears of accidental disclosure when utilizing services:
Participants also discussed issues surrounding accidental disclosure when their clients utilize facilities and services designated for individuals with HIV. For example, in Miami-Dade County, there is only one AIDS Drug Assistance Program (ADAP) pharmacy available for RWP clients who receive their medication through the program. Participants explained that their clients frequently reported avoiding picking up their medication at this location due to fear of being identified by their family, friends, or acquaintances; this resulted in delays and days of missed medication.
In addition to the issues related to the ADAP pharmacy, participants detailed issues with accidental disclosure caused by utilization of other services, such as participation in support groups. For example:
To prevent accidental disclosure, participants emphasized the importance of additional pharmacy options for their clients (Table 3). They also pointed out the importance of HIV interventions that are personalized and take stigma into consideration, such as holding support groups in locations that protect participants from being identified by acquaintances and providing credits for rideshare services like Uber or Lyft that aren't explicitly linked to HIV care (Table 3).
Stigma Unrelated to Disclosure
Stigma also emerged as a major barrier to care independently from fears related to disclosure. One participant highlighted the isolation that can be brought on by the stigma:
In some instances, stigma overlapped with denial. One participant highlighted the stigma surrounding women and HIV, and noted that issues related to HIV and women are not discussed as much as they should be. Still another described fear around HIV, and how they have to explain to their clients that HIV is not a death sentence.
When discussing how stigma impacts HIV care for women compared to men, one participant described the burdens society's caregiving expectations place on women:
Another participant emphasized the intersection between culture and gender norms, and the need as a provider to be sensitive to the varying stigmas and challenges women may face within their communities:
Additional Psychosocial Barriers to Care
Lack of Social Support
Participants explained the importance of positive social support for retention and adherence. Participants discussed the ways a positive support system lifted some of the burdens of managing HIV care alone from their clients, and one participant shared an anecdote of what they perceived to be deadly consequences for a client who lacked positive social support:
Several participants discussed the lack of support groups focused on WWH, noting this approach has been geared toward other groups living with HIV. For example:
However, other participants noted that it would be difficult to get women to attend the support groups due to hours, childcare responsibilities, or other competing priorities. When discussing a peer navigator program, one participant described the fact that peers are frequently men and not women as an additional barrier to women utilizing this program.
Culturally Rooted Beliefs
In other instances, participants described culturally rooted beliefs against the use of antiretroviral medications, and the desire to incorporate traditional practices into their treatment regimen. For example:
Participants described culturally adaptive strategies they use in their educational approach when discussing the importance of antiretroviral medications with their clients (Table 3).
Lack of Valuing One's own Health
Participants also discussed clients who didn't seem to care about their health status for reasons the participants didn't understand, which served as a barrier to engagement in care. One participant described the importance of their clients valuing their own health to achieve the best outcomes:
Structural and Logistical Barriers to Care
Lack of Transportation
Lack of transportation was another frequently cited barrier to care, arising in all but two interviews that were conducted. It was cited as a barrier to engaging women in their own care, as well as adherence to treatment and accessing non-HIV-related care. In relation to adherence, one participant gave the following example, noting the limited availability of assistance for bus passes:
One participant noted that clients need money upfront to fund transportation to even pick up their bus passes and the challenges this presents to those who live a far distance from services. Other transportation-related challenges described by participants included wait times and length of time navigating transportation services. Participants also noted challenges related to the distance between their clients and the location of services or providers, often in reference to the only available ADAP pharmacy in the county, as well as a limited number. of providers for specialty medical care which forced their clients to travel long distances to visit them as needed. When probed on challenges related to bus pass distribution, participants highlighted bureaucratic issues related to the number. of monthly appointments a client must have to be eligible to receive a bus pass, as well as the limited availability of bus passes necessitating distribution to clients on a first come, first served basis. Participants noted that increasing funding for transportation and rideshare services would help address this barrier to care (Table 3).
Conflict with Employment
Participants reported that conflicts with employment often arose for clients when they sought HIV care, for example, having to take time off from work or trying to access appointment times that did not conflict with their work hours. Some participants discussed efforts their agencies made to accommodate these challenges, such as extending hours a few times per week or offering appointments on the weekends. One participant described the particular challenges related to shift work, and the efforts clinic staff makes to help with those challenges:
Another participant highlighted barriers associated with requesting days off for HIV-related appointments that take an extended period of time, lost income due to lack of paid leave, and fear of losing employment. Participants also mentioned the need for extended time off as a barrier to accessing RWP-covered residential treatment services for substance use disorders.
Childcare and Caretaking Responsibilities
Participants discussed the challenges their clients face related to childcare, particularly balancing available appointment times with picking their children up from school or childcare responsibilities. For example:
Regarding support groups, another participant noted:
Participants pointed out that their clients often have caretaking responsibilities that extend beyond their own children to their grandchildren or other dependent family members, such as elderly parents or sick siblings. Participants also emphasized that women's childcare responsibilities may impact their ability to be engaged in their own care and contrasted this with men's engagement, as shown in the following exemplar:
In the absence of other childcare support, participants noted the informal role facilities play, and suggested their agencies may want to consider developing formalized childcare areas to support women's retention in care (Table 3).
Housing Instability
Participants described extensive challenges related to housing instability among their clients and the ways it presents challenges related to retention in care and medication adherence:
Participants described additional challenges for their clients experiencing homelessness, including food instability, substance use, and—for women specifically—risks related to their physical safety if they engage in sex work for survival. For example: …
Participants cited lack of space in shelters (particularly for women and children), lack of housing vouchers, and long waiting lists of 2 to 4 years for housing assistance programs as major barriers to navigating how best to assist their clients with finding stable housing options. Housing instability was perceived as a larger, structural barrier that was outside of their agencies’ control.
Negative Interactions with Healthcare Providers
Participants discussed the significance of their client’s trust in their healthcare providers, and the importance of providers spending adequate time educating their clients on the basics of how HIV behaves in their bodies if they do not take their medications. Participants also described how various interactions with members of the healthcare team present barriers to care. One participant explained how their clients seem to be intimidated by medical experts, leading to a fear of asking questions:
Other participants described HIV-related stigma among healthcare providers, and the negative effect that has on access to care for WWH:
Participants suggested better provider education on caring for people with HIV infection as one solution to address this stigma. Others highlighted the importance of a diverse workforce, cultural competency, and training that goes beyond online modules to reduce bias in the treatment of WWH (Table 3).
Other Barriers
Participants pointed out several other barriers to care as well. Although antiretroviral therapy (ART) medication has improved greatly, participants reported that side effects and complex medication regimens are still sometimes barriers to adherence for their clients. Others discussed clients who needed basic education and information related to HIV and HIV medications. One participant shared an anecdote about a client who did not believe the HIV medication really worked:
Discussion
In semi-structured interviews conducted among 20 RWP medical case managers, providers, and administrators, participants discussed perceived barriers for WWH. Perceptions of barriers included issues related to disclosure (such as lack of disclosure and accidental disclosure) and stigma, lack of social support, culturally rooted beliefs, lack of transportation, time-related conflicts with employment, childcare and caretaking responsibilities, and negative interactions with healthcare providers.
Provider perceptions of barriers to care for WWH align with previous findings in studies examining barriers to care among WWH. WWH has identified fear of accidental disclosure, HIV-related stigma from providers,7–9 and lack of social support7,8 as barriers to care. Transportation challenges,8,10–12 access to childcare,11,12 competing priorities, 8 conflict with employment, 10 and the complexities of coordinating care from multiple specialists for treatment of comorbidities 11 have also been identified as barriers to care by WWH.
The focus of the solutions proposed by participants (Table 3) echoes previous calls for women-centered HIV care. 6 Improving provider-patient relationships and offering clinic-based appointment reminders are also within the scope of programmatic changes that will advance women-centered care for WWH.6,13,14 It is important to note, however, that the solutions to some of the identified barriers will require policy solutions that are outside of the realm of programmatic changes to the RWP. For example, addressing chronic housing instability experienced by WWH through improving the availability of temporary shelter beds, providing housing vouchers, and creating permanent housing options that prioritize women with children will likely require active advocacy and policy change at county and state levels. Increasing funding within the RWP to augment the availability of transportation vouchers will require advocacy and policy change at the federal level.
One strength of this study is the degree to which provider perceptions of barriers to care among WWH aligned with previous studies conducted among WWH. Furthermore, because few previous studies have examined provider perceptions related to barriers to care for WWH, this study is an important addition to the literature. Others have examined provider perspectives on contraception counseling for WWH 15 and the role of gender in patient-provider relationships in Western Kenya. 16 Another study examined provider perspectives about the importance of the RWP and potential challenges in relation to Affordable Care Act implementation, but did not address barriers to care for women. 17 To our knowledge, the current study is among the first to detail provider perceptions of barriers to care for WWH enrolled in the RWP.
One limitation to this work includes the representativeness of the participants. During recruitment, the research team reached out to numerous RWP medical case managers and providers in Miami-Dade County; those who completed the interviews volunteered to do so outside of regular business hours and were compensated for their time. Since we could not feasibly use random sampling to select study participants, the responses to the interview questions may represent the views of individuals who are particularly cognizant of the issues facing WWH and may not be representative of the general perceptions of all medical case managers and providers who interact with WWH. Additionally, 85% of participants in this study were women, and perceptions may vary for male providers. Finally, although the findings of this study align with previous studies conducted with WWH, results should be further triangulated with findings among WWH served by the RWP in Miami-Dade County; this work is forthcoming.
Conclusions
RWP services are a critical source of care for WWH. RWP medical case managers, providers, and administrators in Miami-Dade County identified perceived barriers to care for WWH, which included issues related to lack of disclosure about HIV status, accidental disclosure, and HIV stigma. Participant suggestions to address barriers to care for WWH included strategies that support women and foster individualized services that are responsive to their lived experiences and needs. Programmatic changes within the RWP suggested by participants, including advanced training to reduce bias and increased availability of peer navigators, should also be considered to improve the interactions of WWH with RWP services and providers. Other possible solutions to barriers encountered by WWH, such as those related to transportation, housing, and general funding for the RWP will require advocacy and policy change at county, state, and federal levels.
Footnotes
The authors wish to gratefully acknowledge Carla Valle-Schwenk, Ryan White Program Administrator, and the entire Ryan White Part A Program in the Miami-Dade County Office of Management and Budget, for their active assistance, cooperation, and facilitation in the implementation of this study. The authors would also like to thank Sikeade Caleb-Adepoju for her research support on this project. Preliminary results of this study were presented as a virtual poster at the 2020 Annual Conference of the American College of Epidemiology, the proceedings of which were published in the December 2020 issue of the journal
Declaration of Conflicting Interests
The authors declare that there is no conflict of interest.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported in part by National Institute on Minority Health and Health Disparities (NIMHD) under Awards R01MD013563 and 3R01MD013563-02S1. The authors gratefully acknowledge partial support by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number NIMHD (U54MD012393), Florida International University Research Center in Minority Institutions. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
