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. Author manuscript; available in PMC: 2022 Oct 1.
Published in final edited form as: AIDS Behav. 2021 May 11;25(10):3425–3436. doi: 10.1007/s10461-021-03297-7

Assessing Provider-, Clinic-, and Structural-Level Barriers and Recommendations to Pre-exposure Prophylaxis (PrEP) Uptake: A Qualitative Investigation among Women Experiencing Intimate Partner Violence, Intimate Partner Violence Service Providers, and Healthcare Providers

Amy Caplon 1,*, Kamila A Alexander 2, Trace Kershaw 3, Tiara C Willie 4
PMCID: PMC8419149  NIHMSID: NIHMS1714783  PMID: 33974167

Abstract

Intimate partner violence (IPV) relates to HIV susceptibility and acquisition. Existing research examined barriers to pre-exposure prophylaxis (PrEP) uptake among women but few studies assess uptake and delivery among IPV service providers, along with provider-, clinic-, and structural-level barriers. We conducted 34 semi-structured interviews with PrEP-eligible cisgender heterosexual women experiencing IPV, Reproductive Health providers, PrEP providers, and IPV service providers in Northeast U.S. Systems theory was used to examine barriers from individuals who either work closely with or are part of the population. The framework method was used to draw descriptive and explanatory conclusions. Findings suggest limited knowledge for Reproductive Health and IPV Service Providers. Providers often did not feel equipped to discussed PrEP in visits or focused efforts solely on safety. Expanding PrEP awareness is necessary and marketing should include women. Future research should investigate how providers can work collaboratively across sectors to ensure women receive comprehensive trauma-informed care.

Keywords: intimate partner violence, pre-exposure prophylaxis, Providers, Barriers, HIV, women

INTRODUCTION

Intimate partner violence (IPV) is a serious public health issue that has been associated with HIV susceptibility and acquisition [1]. Epidemiological data suggest that 36.4% of women in the United States have experienced rape, physical violence, or stalking by an intimate partner at some time in their lifetime, and within Connecticut, 37.7% of women have these experiences [2,3]. Using a nationally representative sample, one study found that women with past-year IPV experience were more than three times more likely to have a diagnosis of HIV, as compared to those without past-year IPV [4]. Though not explicitly stated in studies examined, the majority of established research is based on IPV experiences of cisgender females, perpetrated by male partners. However, IPV can be experienced and perpetrated by any gender identity.

Abusive relationships can create a context that limits women’s sexual autonomy, making it difficult to refuse unwanted risk behaviors [5]. For example, women who experience IPV are more likely to report behaviors such as injection drug use, transactional sex, and condomless sex as compared to women without IPV experiences [1]. These HIV risk behaviors are prevalent among women in abusive relationships, in part, because of the limited ability to refuse sex or negotiate condom use with male partners [6]. Research also suggests that abusive male partners are more likely to engage in risky sexual behaviors such as partner concurrency and refusal to use condoms, which can heighten women’s risk for HIV [7].

Finally, women in abusive relationships often are more likely to experience abuse because of requesting condom use, which may inhibit the efficacy of condom-use interventions for women experiencing IPV [8]. Many condom-based interventions and skills-based models and studies work to increase one’s HIV knowledge, condom attitudes, and confidence in discussing and negotiating condom use. However, these studies often focus on individual-level factors and skills, which may discount the role of partner influence, relationship power, and dependence in a relationship where IPV is present [9,10].

Given the significant susceptibility of HIV among women experiencing IPV, research efforts must focus on women-controlled HIV prevention methods, such as PrEP, for this vulnerable population [11,12,13,14,15,16,17,18,19]. PrEP may allow women to independently control their HIV susceptibility because women do not need to negotiate their use of PrEP with a partner [7]. Despite the clear unmet need for partner-independent HIV prevention among women who experience IPV, current PrEP research and clinical practice have overlooked the importance of IPV. The CDC Clinical Practice Guidelines for PrEP do not explicitly include questions regarding IPV [20]. In addition, other than potentially under the category “persons who inject drugs,” women are only mentioned at substantial risk if she is in a heterosexual relationship with a man. This excludes women of other sexual orientations who may be experiencing IPV and does not specify whether both cis- and trans-gender women are included. Furthermore, despite the potential utility of PrEP, women only represent 4.6% of PrEP users nationally [21]. At the time these interviews were conducted, there were 23 clinical and community sites registered with the Connecticut Department of Public Health focused on providing PrEP services [22]. To date, research has sought to understand the individual-level and relationship-level perceptions and concerns of PrEP among women [7,23,24,25,26,27]; however, research understanding barriers of providers, clinics, and broader structural factors are lacking, and provider’s and women’s perspectives in these realms are under-researched yet necessary components to gain the full picture of a woman’s care and prevention of HIV.

Studies have been conducted to elicit perspectives regarding PrEP use among women at-risk for HIV, though few have examined women who have experienced IPV and barriers at the provider-, clinic-, and structural-level. Women experiencing IPV have an added layer of barriers, as safety and fear of violence or partner concealment are added concerns that can manifest at higher ecological levels [28]. Research is needed to identify IPV-specific barriers among women and their providers in a broader sphere by looking beyond individual and relationship barriers to PrEP uptake.

The current study sought to understand barriers to PrEP uptake at the provider, clinical, and structural-levels, from the perspectives of PrEP-eligible cisgender women experiencing IPV, IPV service providers as well as healthcare providers (i.e., PrEP and Reproductive Health). Participants also provided recommendations to combat these barriers to enhance PrEP care and uptake for all women experiencing IPV. Comparing the voices of these women experiencing IPV, and providers of IPV, PrEP, and Reproductive Health can help inform the development of comprehensive HIV prevention services and support among PrEP-eligible women experiencing IPV [26].

METHODS

A systems theory was used to incorporate the views of stakeholders that take part in a woman’s health care, thereby fully understanding the insights of both patients and providers. This multi-level perspective takes into consideration the integral components of a system, and helps to understand the interdependence of each relationship, through finding patterns and learning of the structure behind each interrelated component [29]. We interviewed three different types of providers (e.g., IPV Service providers, PrEP providers, Reproductive Health providers) as each may encounter women with IPV experiences and could serve as an important role in linking them to HIV prevention services such as PrEP. Through these interviews, it was a goal of the study to compare the perspectives of women who experience IPV, along with those providers they come in most contact with for medical or violence-related services. By learning of any differing perceptions to barriers, we can work to inform PrEP interventions and ensure that we are addressing a woman’s entire health profile, along with the concerns and beliefs of those who may be candidates for PrEP.

Recruitment and Data Collection Procedures

Seven Intimate Partner Violence (IPV) providers, 5 Reproductive Health providers, 3 PrEP providers, and 19 PrEP-eligible women experiencing IPV were recruited. All participants provided verbal consent and were then asked to participate in individual semi-structured interviews. The Yale University IRB approved all study procedures described below.

PrEP-eligible cisgender women experiencing IPV were recruited from an existing prospective cohort study examining associations between IPV and engagement in the PrEP care continuum [19,30]. Women were eligible to participate if they were assigned female at birth, heterosexual, between the ages of 18 and 35, spoke English and/or Spanish, lived in Connecticut, completed the prospective cohort study, and reported at least one of the substantial risk factors stated in the 2017 CDC Clinical Practice Guidelines for PrEP. Potential risk factors deemed “substantial” include having an HIV-positive sex partner, recently contracting a bacterial STI, a high number of sex partners, and more. The average age of the women who participated was 26.5, with slightly over half being Non-Hispanic Black women (52.6%). The majority of women had received less than a bachelor’s degree (68.4%) and were unemployed (63.2%). Although 8 of the women (42.1%) were aware of PrEP before the study, none had a current PrEP prescription. Women provided verbal informed consent in order to participate and were compensated $25. Qualitative interviews were conducted either in-person or over the phone, lasted between 30–90 minutes and were audio-recorded. The content of the interview guide included relationship dynamics; communication about HIV/STD prevention; thoughts, attitudes, experiences with PrEP; and future behavior change to initiate or maintain PrEP use. Interviews were semi-structured, and interview guides were tailored to women experiencing IPV. These methods have been described elsewhere [28]. Interviews were conducted between February 2018 and May 2018, and are the same women and interviews referenced in Willie et. al (2020). Willie et al. (2020) focused on the relationship-level barriers, but this current study will address provider-, clinical-, and structural-level barriers. To ensure that the interview pertained to lived experiences as opposed to hypothetical situations and beliefs, all questions were directed towards the encounters of the participating heterosexual cisgender women experiencing IPV.

IPV Service Providers, PrEP Providers, and Reproductive Health Providers were recruited through existing lists of possible providers in Connecticut as well as providers who had participated in previous studies by the investigators. To recruit IPV providers, researchers reached out to an IPV organization list provided by the Connecticut Coalition Against Domestic Violence (CCADV). This list identified all 18 of the IPV service provider organizations in Connecticut. We contacted 11 organizations via email based on geographic proximity to the city where most of the PrEP-eligible women experiencing violence were recruited, and 7 IPV service providers agreed to participate. PrEP providers were attained through a Connecticut Department of Public Health (DPH) list, and researchers used an existing network of Reproductive Health providers from a previous study that looked at relationship attachment and postpartum care [31]. The average age of participating providers was 42.1, and the large majority were female (86.6%) and Caucasian/white (80%). Of those with clinical experience, providers had an average of 14.9 years of clinical experience. Providers gave verbal consent. Qualitative interviews were performed either in-person or over the phone and lasted between 40–100 minutes. Providers were entered into a raffle to receive one of two $100 gift cards per provider category. The content of the interview guides for providers included knowledge of and experiences with trauma-informed care; IPV knowledge and procedures; HIV risk perception and services among IPV-exposed women; PrEP knowledge, care, and attitudes; providing PrEP support to IPV-exposed women; and inter-organizational and organizational barriers. Interviews were semi-structured, and interview guides were tailored to each population interviewed.

Data Analysis

Interviews were coded and analyzed using the framework method, a commonly used method to draw both descriptive and explanatory conclusions [32]. Researchers used this method to identify similarities and differences in the qualitative interviews among and between the groups interviewed [32]. Audio recordings for women experiencing IPV were uploaded into Dedoose and coded directly from the audio files, without transcription. Audio coding allowed researchers to understand the tone behind the individual’s perspective and barriers, which may not have been transparent if transcribed. Audio files for providers were transcribed verbatim and the text transcripts were imported into Dedoose for coding. The codebook was developed by assessing common topics found throughout the recordings. An adapted socio-ecological model was used to organize the findings [33]. These buckets were divided into provider-level, clinic-level, and structural-level items. Further, data was organized into perceived barriers and solutions. Inconsistencies in coding were discussed with the entire research team until a consensus was reached. Interviews were not all double-coded, but rather multiple coders began the coding process until the research team felt that all codes were objectively added to excerpts.

RESULTS

Demographics can be found in Table I and II, respectively. A comprehensive chart of the similarities and differences of themes between groups are listed in Table III.

Table I:

Demographics of cisgender women experiencing intimate partner violence

N (%)

Overall 19 (100)
Age, Ma (SDb) 26.5 (5.8)
Race and Ethnicity
 Non-Hispanic Black 10 (52.6)
 Non-Hispanic White 3 (15.8)
 Hispanic 3 (15.8)
 Non-Hispanic Other Race 3 (15.8)
Highest Completed Education
 Less than Bachelor’s degree 13 (68.4)
 Bachelor’s degree or higher 6 (31.6)
Employment Status
 Unemployed 12 (63.2)
 Employed (full- or part-time) 7 (36.8)
Income Status
 <$30,000 9 (47.4)
 $30,000+ 10 (52.6)
Types of IPVc experienced in past 6 months
 Physical and Sexual IPV 8 (42.1)
 Physical IPV only 7 (36.8)
 Sexual IPV only 4 (21.1)
PrEP attitudes and experiences
 Aware of PrEP before study 8 (42.1)
 Intended to receive PrEP 7 (36.8)
 Had a current PrEP prescription 0 (0)
a

M, mean

b

SD, standard deviation

c

IPV, intimate partner violence

Table II.

Demographics of providers

N (%)

Overall 15 (100)
Age, Ma (SDb) 42.1 (12.1)
Gender
  Female 13 (86.6)
 Male 1 (6.7)
 Unknown 1 (6.7)
Race and Ethnicity
  Caucasian/White 12 (80.0)
  Asian 2 (13.3)
  Latina 1 (6.6)
Occupation
  IPVc Service Providers 7 (46.7)
  Reproductive Health Providers 5 (33.3)
  PrEP Providers 3 (20.0)
Average years at current organization, M (SD) 6.2 (5.8)
Average total years of clinical experience (of those with clinical experience), M (SD) 14.9 (11.4)
Average total years of clinical experience of all participants, M (SD) 9.9 (11.7)
Average number of PrEP patients cared for, M (SD) 8.1 – 9.8 (15.0 – 18.1)
a

M, mean

b

SD, standard deviation

c

IPV, intimate partner violence

Table III.

Summary table of themes among providers and women who experience IPV

Theme Examples from Healthcare Providers Examples from IPV Service Providers Examples from Women Who Experienced IPV Solutions
Provider-level Barriers Providers’ Lack of PrEP Knowledge • Reproductive Health Providers discussed that many providers do not consider PrEP for high-risk women. • IPV Service Providers discussed their limited knowledge of and support on the clinical aspect of PrEP (e.g., eligibility, payment). • Some women illustrated disbelief in PrEP. • Training on PrEP education and implementation in non-HIV clinical settings for reproductive health and IPV service providers.
• Increase knowledge and awareness of PrEP – to include eligibility criteria, cost/insurance, efficacy, etc.
Side Effects • Not mentioned by Providers, but is important to women • Not mentioned by Providers, but is important to women • Women do not want to take PrEP if there are harsh side effects, and they don’t know enough about it. • Giving women PrEP users a proper platform to discuss their experiences with PrEP.
Clinic-level barriers Barriers within a clinician visit • Some PrEP Providers worry that PrEP is not being brought up by providers.
• Reproductive Health Providers often noted that their providers may not be equipped to discuss PrEP, or that if intimate partner violence was brought up, the appointment shifted to safety discussions.
• IPV Service Providers often felts as if they were walking on eggshells with their clients, and therefore were not always comfortable talking about PrEP or asking sensitive questions. • Women often noted how there was no mention of PrEP by a provider at any clinician visit, nor were there advertisements present at clinician’s offices. • Providing a checklist to providers can help providers feel comfortable discussing PrEP and can guide a conversation for PrEP uptake.
Structural-level barriers HIV/PrEP Stigma • PrEP providers often noted how stigma still exists surrounding HIV, and therefore PrEP by association is tied to the stigma. • Women discussed how the general topic of HIV often makes individuals uncomfortable. • Ensure marketing includes women in heterosexual relationships.
Lack of appropriate marketing • PrEP providers acknowledged that the current advertisements for PrEP are targeted for men. Women may interpret PrEP as something not designed for them. • Most women had not heard about PrEP prior to this study. Of those who had heard of PrEP, some believed the target for PrEP was same-sex male couples. • Expanding marketing efforts to increase awareness but also to include women in the advertisements.
• Using clinician offices as a location for advertising.
Access (cost, insurance, and transportation) • Reproductive Health Providers mentioned barriers for uninsured individuals.
• PrEP Providers mentioned how visits and follow-ups all cost money, on top of the cost of the medicine. They also sometimes worry that insurance will not cover it.
• IPV Providers mentioned insurance issues, but capitalized on transportation being a large barrier to attending appointments. Providers reinforced the idea that partner control could be hindering access to transportation. • Women were often concerned about the cost of PrEP, as well as whether their insurance would cover it.
• Some women also had no way to get to their appointments.
• Encouraging communication between patients and providers.
• Providing PrEP in non-HIV clinics

Barriers

Provider-level Barriers

PrEP providers were most familiar with PrEP screening and dissemination, whereas Reproductive Health providers and IPV Service providers were less familiar with logistics related to PrEP, including definitions, patient eligibility criteria, and cost. While Reproductive Health providers, IPV Service providers, and women who experienced IPV all shared a general lack of knowledge of PrEP, providers knew its existence, whereas some women illustrated disbelief. Side effects was another salient theme, though only present in interviews among women who experienced IPV and not something considered by providers. One IPV provider asked various questions about PrEP:

“This would be something that someone would take before any...interaction that might be?....Is there like an age bracket that’s able to take that?....What’s the cost?” (IPV provider 1)

Although PrEP providers are well-versed in PrEP knowledge, some Reproductive Health and IPV providers had limited PrEP knowledge and thus it would be difficult to conduct constructive conversations with clients or recommend PrEP uptake during a clinical encounter.

Clinic-level Barriers

Participants also noted many clinic-level barriers that impeded their ability to discuss PrEP. Specific to providers, barriers centered around conflicting priorities during their often-rushed visits and shifting to discussing safety when the topic of IPV was mentioned. Outside of PrEP providers, most providers did not feel prepared to discuss PrEP or were concerned that patients would feel alienated in what should be a safe space if providers asked sensitive questions. Women experiencing IPV, however, did not specifically discuss any issues with difficult conversations or lack of time in appointments. Women did share that these conversations were not initiated by providers nor did their clinics offer advertisements or information regarding PrEP.

Clinicians often felt rushed during their visits and believed that patients noticed this rush, leading to shortened conversations and providers spending their time with patients on other medical needs. One Reproductive Health provider mentioned:

“ I think sometimes patients, unfortunately, can see that you’re sort of rushed, and don’t always feel like maybe that you have the time to – to listen to everything that they need to say…– I think one of the biggest barriers is time, and sort of patients seeing that, …you’re sort of hurried and it’s just – it’s unfortunate, but it’s sort of one of the realities that – that we have in the healthcare system.” (Reproductive Health provider 1)

Conversations surrounding PrEP are already potentially sensitive, and if patients feel they are rushed, they may be less inclined to feel as though there is time to discuss PrEP. When IPV was discussed, another Reproductive Health provider explained that safety became the only priority, leaving sexual health for another visit:

“I think that the focus of the visit would shift to more counseling and addressing the intimate partner violence, and trying to focus on that and maybe less on the other health concerns. Just so that we can address safety of the patient.” (Reproductive Health provider 2)

Providers appear to prioritize the perceived needs of their patients in the allotted time, leaving PrEP for another time. Providers may not feel qualified to discuss PrEP with their patients, or may wish to stay clear of sensitive topics, especially with women who experience IPV:

“We spend a lot of time walking on eggshells with our clients just because everything is so – triggering, and…People have certainly refused to answer specific questions, which, you know, is totally understandable. But we’re constantly…walking this line between asking as many questions as we need to make sure that we have addressed all their needs while also not offending or scaring them to the point where they shut down, you know?” (IPV provider 1)

Providers may choose to ask selective questions to ensure the line of communication stays open and discussing PrEP or HIV may lead to a patient’s disengagement.

Structural Barriers

Structural and societal factors such as stigma, access, cost, and transportation were also key barriers discussed by women and providers. Only women experiencing IPV and PrEP providers highlighted the stigma surrounding HIV and PrEP, along with the lack of appropriate marketing. Perceived stigma surrounding HIV and PrEP can prevent individuals from seeking out care. Several participants mentioned that HIV is a taboo subject, as one woman stated:

“I don’t know I feel like that whole topic of like HIV makes people uncomfortable. Even if you’re talking about or giving something to help you prevent it I still think it makes certain people feel uneasy.” (IPV survivor 1)

This woman may prefer to avoid the topic of PrEP due to its association with HIV, even if the goal is prevention. One PrEP provider stated:

“So, there’s still that stigma that, ‘I can’t tell everybody I have this, so, and I don’t want to tell everybody I have, you know, PrEP because then they’ll think I either have HIV,’ ‘cause they don’t understand you’d have to take more medications than just Truvada if you have HIV.” (PrEP provider 3)

This barrier stems from a lack of PrEP knowledge as the general public may associate PrEP with having HIV. Labels on medications, as well as the appearance or perception of a pill can mislead individuals regarding its purpose. PrEP is associated with HIV, adding to both existing HIV stigma but also to stigma surrounding the purpose of PrEP.

Access was also a common structural barrier mentioned by both providers and women experiencing IPV. A PrEP provider mentioned cost as a foreseeable barrier, not just for PrEP medication, but for the entire clinician visit process:

“And obviously, one of the biggest barriers is the cost. So, it’s a cost for you to come to see someone, and then obviously the cost to cover the medicine. At first we were afraid that insurers were just going to deny it. But since it’s been FDA approved, we’re pleasantly surprised that’s not such a huge obstacle. There are still the issues of copays and people who can’t afford some of the copays. So, I got a gentleman the other day, his copay was $600.00. But there are mechanisms to deal with that. So we have to make people aware that there are various ways of handling that.” (PrEP provider 2)

PrEP is often covered by insurance, and payment plans can exist for individuals who cannot afford their copays. However, individuals must be knowledgeable of PrEP before they are able to learn specific information such as cost and coverage. One woman stated that before she would be interested in taking PrEP she wanted to know:

“Just the cost. Like how much does it cost? And I wonder, will my insurance cover that? Will they look at it as if it is a contraceptive method? Because I know for birth control my insurance covers for that. But I remember they had to call the insurance before I can even get the type that I’m on. So I wonder like will my insurance cover it?” (IPV survivor 1)

After women overcome the initial hurdle of learning about PrEP, the next barrier becomes learning the logistical information, and as noted here, an extreme barrier is cost and coverage. A final access barrier is transportation. PrEP use requires individuals to make more than one appointment for intakes and follow-ups, and for some, transportation is an issue. An IPV provider mentioned how transportation inhibits individuals from following through on appointments:

“I look at the huge thing is transportation. Even getting some clients to think about birth control, even getting some clients to self-care, going for checkups, is very, very challenging.” (IPV provider 2)

Attending an appointment often depends on both the distance an individual is from her clinician, as well as her ability to have or use a car. Women experiencing IPV may not make appointments if they know transportation will be an issue. A final structural barrier mentioned was marketing. Marketing either does not exist or is targeted for men who have sex men. The lack of marketing can also bring doubt among patients when they finally learn about PrEP and realize they were never informed. Providers acknowledge that current advertisements are geared toward men, which may exacerbate low perceived susceptibility of HIV for women. A PrEP provider described this issue:

“I think with some of our initial marketing if you look at most PrEP posters that you see, most of them are depicting men, so then you even wonder, is the perception among women is that this is something they should also be learning about or not?” (PrEP provider 1)

This concern was supported by women experiencing IPV:

“I don’t know, maybe just being new and the first thing I had seen of it was like a male couple so it didn’t stick that out like maybe I need it for my relationship. That may have like changed, like I just set the tone in my mind that it was mostly for homosexuals, even though I know it’s not.” (IPV survivor 2)

Unless women are able to frequently see advertisements for PrEP with images or phrases they can identify with, women may not believe that PrEP is a viable option for them.

Solutions for PrEP uptake

Solutions for Provider-level Barriers

Strategies for increasing PrEP uptake included increasing awareness and education for providers. Providers noted the need to be knowledgeable regarding the specifics of PrEP, such as the eligibility criteria, answer questions regarding cost/insurance, efficacy, side effects, and link patients to proper resources for care.

Suggestions also included allowing women to learn about PrEP from providers, along with women who have been taking PrEP to truly learn about their experiences. Women highlighted strong influences such as side effects, ease of use, and learning general feelings of PrEP when deciding whether to pursue PrEP, though existence of these barriers were not found in provider interviews. Providing PrEP users a platform to discuss personal insight with PrEP use can allow women experiencing IPV the potential ability to take control of an aspect of their sexual health, while making providers aware of important aspects to consider.

Solutions for Clinic-level Barriers

“Clinical Checklists” were proposed as a solution for ensuring PrEP is introduced during visits. This checklist would provide steps to screen individuals and gain insight into patient behaviors, ensuring PrEP becomes part of normal conversation. A Reproductive Health provider expressed the importance of a clinical checklist in order to productively screen patients, learn histories, and provide the best possible care:

“Before we can incorporate PrEP, we have to sort of change our paradigm of how we do patient histories, to even get to those patients who might even be at risk. Because a lot of patients won’t even know to bring it up, so they might not bring up that their patient’s – their partner’s HIV-positive ‘cause they don’t know that there’s anything out there that could change that, besides, you know, use of condoms.” (Reproductive Health provider 1)

A clinical checklist can help both patients and providers to establish health histories and learn more about a patient’s HIV risk and possible next steps.

To address potential sensitivity around discussing PrEP in a visit and general marketing concerns, one woman felt as though birth control and PrEP should be a simultaneous conversation:

“I feel like we should market it like they market birth control. Make it seem like okay well you know, when you get your birth control, why not get PrEP as well? You know it’s something that you can use.” (IPV survivor 1)

If birth control and PrEP were discussed concurrently, not only would PrEP be incorporated into more conversations, but individuals may perceive PrEP as more of a sexual health tool, and less of a stigmatized HIV preventive.

Solutions for Structural-level Barriers

Individuals expressed the desire to have PrEP widely available at non-HIV clinics, or even anonymously in a broad array of service organizations. At one OBGYN clinic, this suggestion is actually going to be piloted:

“So, we actually sort of put the steps into motion, and we’re actually gonna start providing it to patients at the – at the OBGYN clinic, ‘cause we found that she wasn’t comfortable going to the HIV clinic, that she just – she knew a lot of people in the health system, and didn’t really feel comfortable doing that, and felt more comfortable just getting her care with us, her established doctors.” (Reproductive Health provider 1)

Providing PrEP in primary practitioner or OBGYN offices may help to alleviate access issues, since women may be more familiar and accustomed to attending these offices. In addition, it may be easier to conceal the reason for a visit if a partner needed to drop a woman off for an OBGYN visit, as opposed to a drop off at an HIV clinic, a component of a relationship-level barrier.

Regarding marketing, many advertisements only displayed men who have sex with men, thereby providing the perception that women are not at-risk. Women would like to see advertisements for PrEP that included women. Not only could this help alleviate some stigma, but it could also show women that PrEP exists as a viable option for them.

The structural barrier of stigma was discussed briefly while also addressing clinic-level barriers. Women noted how if birth control and PrEP were discussed concurrently during women’s health clinic visits, individuals may perceive PrEP as a viable, less stigmatized HIV preventive. Finally, a suggestion is to ensure that clinicians are working together and communicating with each other to ensure that patients are receiving safe and quality care. Provider collaboration can help for clinicians to screen and refer patients to receive PrEP, as well as ensure that those who are on PrEP remain in contact with clinicians, potentially through a domestic violence agency, for continued care and support.

One IPV provider explains:

“Doctors are probably not in the position to do that in-depth safety planning. So I think it’s having the resources to know where to refer them to. And then, you know…just really staying in contact with the, um, domestic violence agency and the – the primary care physician to make sure that they’re talking, because that’s always a missing piece. You’ve got a lot of people sometimes working with one victim but nobody is talking to each other.” (IPV provider 7)

Providers can also work together to screen patients for IPV, and then collaborate to provide well-rounded care to the individual:

“One thing that does sound very good with it – I would say collaborating with doctors on, again, how to recognize intimate partner violence and see, you know, what the issues look like for a lot of people who are going through, will probably help service delivery immeasurably.” (IPV provider 4)

This can be done through provider-to-provider education, in order to learn how to identify potential victims, and what steps to then take. If specific providers are more experienced or equipped to deal with certain circumstances, having an open communication between various providers can ensure that women receive necessary quality care.

DISCUSSION

To our knowledge, this paper is the first to examine perceived barriers and solutions to PrEP uptake at the provider-, clinic-, and structural-levels from the perspectives of women experiencing IPV, IPV Service providers, and Healthcare providers. Prior research examined the perceived barriers of PrEP uptake among women experiencing IPV [19,24,25,28], but it is critically important to build upon this extant research to understand the experiences of providers who work most closely with women experiencing IPV, and also identify barriers beyond the individual- and relationship-level. Understanding the perspectives of these women and any misalignment or disconnect between providers that they interact with most can also allow for quality multifaceted approaches to PrEP care. In addition, women experiencing IPV and those providers involved most in their care had the opportunity to discuss potential solutions for noted PrEP uptake barriers, a perspective that has not been widely assessed.

Barriers

Consistent with previous studies, women were generally unaware of PrEP and its effectiveness prior to participation in this study [7,11,30,34]. Reproductive Health providers and IPV Service providers were aware of PrEP, but often felt unprepared to discuss PrEP or answer questions, and therefore did not mention it during visits. In addition, women experiencing IPV mentioned barriers such as side effects they might face. Side effects was not a barrier mentioned by any of the providers, highlighting a key need for aligning education initiatives and provider conversations to match a woman’s priorities.

A separate study explored women’s perspectives on IPV disclosure within healthcare settings, and how the reactions and experiences of healthcare providers impact care. Results consistently showed that several healthcare providers were largely suggesting their patient leave the abusive relationship [35]. In many cases, safety planning and protection while within an abusive relationship may be the most immediate viable option. PrEP as a partner-independent HIV prevention strategy would be optimal to discuss in these appointments, and given the feedback from providers, current barriers prevent these conversations.

During patient visits, Reproductive Health providers and IPV Service providers listed various reasons for limited provider-led PrEP discussions, which coincides with PrEP providers’ general worry that PrEP is not actively mentioned. Not only did these providers often feel unqualified to discuss PrEP, but the topic of IPV often shifted the focus to probes into safety planning as opposed to PrEP. IPV Service providers often felt as though they were “walking on eggshells” and did not feel comfortable with more sensitive questions. Providers also felt rushed during visits, and believed women noticed this, though not deliberately stated by women. Women did note that PrEP was not discussed in appointments or advertised in clinics. Additional studies coincide with these findings, acknowledging healthcare providers’ time constraints, absent protocols, and screening procedures, along with assessing the readiness of health practitioners in addressing domestic violence and abuse [36,37,38].

On a broader level, women often did not feel comfortable talking about PrEP or HIV because of the stigma attached, and only PrEP providers mentioned this in their interviews. In addition, the women and PrEP providers were the only groups to mention the lack of focused marketing for women, leading to misperceptions that women are not candidates for PrEP. Access was a broad structural barrier, though was highlighted in different ways. While these providers are all involved in a women’s entire health profile, access barriers noted likely represent the most prevalent issues in their specialty. These providers are still relatively siloed—a potential explanation for the varied elements of access noted. Specifically, women experiencing IPV highlighted the barriers of cost, insurance, and general transportation. Reproductive Health providers noted barriers for uninsured patients. IPV Service providers were specifically focused on a partner controlling a woman and inhibiting her ability to attend appointments, along with insurance issues. PrEP providers discussed how follow-up appointments are required for PrEP use, which incurs additional costs, visits, and concerns about insurance. All noted barriers are valid and highlight the need for a collective approach in safety planning and care management.

Solutions

Women highlighted the desire to learn about PrEP and discuss this viable option with providers through solutions such as access, marketing, and education. A solution for increased access and concealment was to provide PrEP in non-HIV clinics that may not be as concerning to partners and may be more readily available to women. A study in rural Kenya and Uganda experimented with providing group-based education in PrEP, HIV testing, post-test counseling, and PrEP at health fairs, followed by follow-up visits at facilities, homes, and community centers [39]. Of those who initiated PrEP, 82% started PrEP the same day they attended the fairs for testing. Providing PrEP and education in broader locations where general HIV/STI testing is available can help to address PrEP access issues, increase PrEP visibility to possibly reduce stigma, and allow PrEP to become part of conversations had at various health-affiliated organizations.

Several solutions to barriers were structural, such as marketing and concurrent birth control and PrEP conversations as a way of adjusting HIV stigma. Providers also need to be comfortable discussing PrEP within visits, as well as persistently asking individuals if they would be interested. Overall, IPV providers needed additional training to feel prepared to discuss PrEP and suggested that a gynecologist may be a better fit for PrEP discussions. Though IPV providers’ main concern is a woman’s safety, sharing records with healthcare providers may allow women to receive well-rounded healthcare and can also educate providers on the full profile of each patient.

Findings from this study highlight limited PrEP knowledge among both patients and providers. Women cannot learn about PrEP logistics until providers have been trained and are comfortable speaking to patients about PrEP. Providers are much more focused on safety as a barrier to PrEP care, as opposed to some barriers prioritized by women, such as knowledge of side effects. Though there is not one way to approach PrEP care, providers should be cognizant of a patient’s interests in partner-independent prevention strategies. Many women expressed interest in PrEP and noted that they may be taking it if the medication was mentioned during a provider appointment. PrEP education is not the responsibility of the provider alone. Advertisements and marketing should be more inclusive, so that women understand that they too are at risk.

There were several limitations of this study. The sample size for providers was small, though it should be noted, that researchers felt saturation was reached in the provider interviews, since later interviews did not reveal any new themes. Though researchers felt saturation was reached, providers in the state of Connecticut may not be representative of those in other states. Participating providers may differ from those who chose not to participate, especially given the low number of PrEP providers (3). In addition, the women experiencing IPV were sampled from a previous study related to PrEP, and therefore these individuals may not be representative of women outside of the study. All women in the study were cisgender and heterosexual. IPV does not discriminate based on sexual orientation or gender, and therefore additional research must include experiences of this population. Further, many of the interview questions asked participants to speculate on hypothetical situations, as opposed to lived experiences. Despite the limitations, this study is one of the first to examine perspectives of not only women experiencing IPV, but also healthcare providers and IPV service providers that these women most often encounter. Future research should continue to examine how providers can effectively work together to treat a woman’s entire health profile.

Implications for Policy and Practice

Results from this study enhance existing knowledge and recommendations for understanding barriers of PrEP uptake among women who experience IPV. Interviews discussed on various barriers and potential solutions to inform future PrEP interventions, specifically among women who experience IPV. Many barriers exist for all women in accessing PrEP, but when IPV is present, more complications can arise.

Participants expressed the need for a sustainable and culturally inclusive systems-level program for screening of IPV and understanding IPV-specific barriers to care, while also acknowledging how PrEP may play an effective and necessary role in these conversations and procedures. This can be done using clinical checklists, ensuring that proper health histories are established, and specific guidance is provided to ease the conversation. The present study also recognized the necessity for collaborations among teams for coordinated resources and guidance, ensuring that all providers that interact with women experiencing IPV are aware of available resources, medical records, and can provide well-rounded care.

An additional practical solution to consider for PrEP interventions would be to provide PrEP in non-HIV clinics. Many individuals within this study highlighted this potential solution and the perceived benefit for women experiencing IPV for access issues, possible partner concealment, and education/awareness opportunities with providers that women are already in contact with.

CONCLUSION

PrEP is a viable option for women experiencing IPV to take control of their sexual health, as women who experience IPV are at a greater risk of acquiring HIV. Education and awareness for providers is a vital component to expanding PrEP uptake. PrEP marketing must also expand for women to understand their risk of acquiring HIV. Women are interested in learning and starting PrEP, if made are aware of the costs, side effects, and necessary follow-ups. Providers should keep this in mind and learn best practices for discussing PrEP during a visit, while also continuing to worry about a woman’s safety.

ACKNOWLEDGEMENTS

Financial Support and Disclaimer: Funding for this research was provided by the Yale University Center for Interdisciplinary Research on AIDS and the National Institute of Mental Health (NIMH) via P30-MH062294 and F31-MH113508. It was also supported by the Johns Hopkins Population Center and the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD) via R24HD042854. TCW was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number K01MD015005. This article was prepared while Amy Caplon was a student at Yale University. The opinions expressed in this article are the authors’ own and do not reflect the view of the National Institutes of Health, the Department of Health and Human Services, or the United States government.

Footnotes

Conflicts of interest: Authors declare no conflicts of interest.

Conflicts of Interest: Authors declare no conflicts of interest.

Declarations

Ethics approval: The Yale University IRB approved all study procedures

Consent to participate: All participants provided verbal consent to participate

Consent for publication: Participants verbally provided informed consent regarding publishing their data

Availability of data and material: Data and materials will not be made available due to the potential identification of participants

Code availability: Qualitative codes within Dedoose can be made available upon request

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