Women's Health Issues 25-4 (2015) 410–419

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Original article

Examining the Health Care Experiences of Women Living with Human Immunodeficiency Virus (HIV) and Perceived HIV-Related Stigma Allyson Ion, BSc, MSc a, Dawn Elston, BA, MA b,* a b

McMaster University, School of Social Work, Hamilton, Ontario, Canada McMaster University, School of Nursing, Hamilton, Ontario, Canada

Article history: Received 8 March 2014; Received in revised form 17 March 2015; Accepted 23 March 2015

a b s t r a c t Introduction: The increased incidence of human immunodeficiency virus (HIV) in women, particularly marginalized women, prompted research to examine women’s health service experiences at a local outpatient clinic. Methods: A qualitative case study using semistructured interviews examined facilitators and barriers to health care services. Seventeen women living with HIV who accessed care at an outpatient HIV clinic in central west Ontario were interviewed. Thematic analysis was used to code health care experiences perceived as HIV-related stigma. Results: Women perceived HIV-related stigma when health care providers lacked basic HIV knowledge and failed to uphold the ethical principles of patient–provider relationships, resulting in women’s disengagement from health care. Conclusions: We propose a community-based participatory research framework to reform health care educational curriculum toward a culture of health care safety that is inclusive of people living with HIV. Copyright Ó 2015 by the Jacobs Institute of Women’s Health. Published by Elsevier Inc.

Human Immunodeficiency Virus Infection in Canada: Current Context Advances in the medical management of human immunodeficiency virus (HIV) including access to combination antiretroviral therapy and improved treatment options have resulted in increased life expectancy for people living with HIV across Canada and North America. From 1996 to 2005, as mortality rates fell from 16% to 10%, life expectancy rose from 36% to 49% (The Antiretroviral Therapy Cohort Collaboration, 2008). Currently in Canada, treatment outcomes have improved dramatically and, for many, HIV is managed as a chronic health condition (Scandlyn, 2000; Thompson, Aberg, Cahn, Montaner, 2010). The intersection of complex medical management of HIV with enduring social challenges experienced by people living with HIV including access to social support and HIV-related stigma, This study was funded by the Gender and Health Education Initiative at McMaster University. The authors have no financial conflicts of interest to disclose. * Correspondence to: Dawn Elston, BA, MA, McMaster University, School of Nursing, Hamilton, ON, Canada L8S 4K1. Phone: þ1 905 525 9140. E-mail addresses: [email protected] (A. Ion), [email protected], elstond@ mcmaster.ca (D. Elston).

however, positions HIV as an episodic disability (O’Brien, Bayoumi, Strike, Young, & Davis, 2008) that is characterized by unpredictable periods of wellness and illness spanning physical, mental, emotional, and social life domains. As an episodic disability, HIV is influenced by living strategies and personal attributes, alleviated by practical, emotional, and social supports, and exacerbated by HIV-related stigma (O’Brien, Davis, Strike, Young, & Bayoumi, 2009). Women Living with HIV in Canada The epidemiology of HIV in Canada has also evolved over time; the number of positive HIV tests reported in women has steadily increased across Canada since the beginning of the HIV epidemic. Before 1999, females represented 11.7% of all positive HIV test reports. By 2006, this figure had increased to 27.8% increasing across almost all age categories (Public Health Agency of Canada [PHAC], 2010a). In 2010, 26% of all new HIV infections occurred in women (PHAC, 2010a), more than 80% in women between the ages of 25 and 44 and primarily through heterosexual contact (71%; PHAC, 2010a). The feminization of the HIV epidemic has largely been driven by key differences in biological and social realities between men and women around the world

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(Carter et al., 2013; Hankin, 2008). Increased rates of HIV in women have necessitated a reconceptualization of the structural and social determinants of HIV. Sandelowski, Lambe, and Barroso (2004) suggest that the changing epidemiology of HIV is related to women’s gender-linked vulnerability that often remains hidden within the context of incarceration, systematic rape and torture in conflict zones, sex trafficking, street involvement, polyaddiction, mental illness, intimate partner violence, and poverty (MacGillivray & Yudin, 2012; Teti, Bowleg, & Lloyd, 2010). Furthermore, in Canada, racialized women, who experience multiple and intersecting oppression based on their gender/ racial/ethnic background (Canadian Research Institute for the Advancement of Women, 2002; Ontario Advisory Committee on HIV/AIDS, 2002) are overrepresented in new infections. In 2011, the HIV infection rate was 3.5 times greater among Aboriginal people in Canada characterized by more diagnoses in younger Aboriginal women (PHAC, 2011). Canadian surveillance data suggest that injection drug use is a particularly important risk factor for HIV among Aboriginal people and accounts for more HIV infections among Aboriginal women than Aboriginal men (PHAC, 2010b, 2010c). Women from HIV-endemic countries (i.e., where the prevalence of HIV is 1% or greater) are also overrepresented in new HIV infections in Canada (PHAC, 2010a). The infection rate among individuals from HIV-endemic countries was estimated to be at least 12.6 times higher than other Canadians in 2005 (PHAC, 2009): “determinants of health, including stigma, racism, income, unemployment, lack of access to culturally appropriate health services and loss of support from extended families in home countries for those who recently moved to Canada, contribute to this population’s vulnerability to HIV/AIDS.” As such, HIV risk is increasingly understood as linked to social determinants of health, that is, social conditions that influence health status and lifespan of individuals and populations (Raphael, 2006), rather than individual risk behaviors (Parker & Aggleton, 2003; Raphael, 2004). In the context of HIV, gender, race, culture, HIV stigma, and discrimination intersect as important determinants of health (Ontario Advisory Committee on HIV/AIDS, 2002).

Health Care as a Human Right and Enduring HIV-Related Stigma At the intersection of the social determinants of health and the medical management of HIV, which optimally includes holistic HIV and primary care (Krentz, Dean, & Gill, 2006; O’Brien et al., 2008), is the right for all Ontarians, including people living with HIV, to access equitable health care (Ontario Patient Bill of Rights). All residents of Ontario and Canada have the right to receive “all necessary health care services in a health care system that is accessible, universal, comprehensive,” receive care “with courtesy and respect” and “in a manner that recognizes individual dignity and privacy” (cite Bill 22, pg. 2) (Legislative Assembly of Ontario, 2003). This provincial legislation applies human rights principles to the context of patient care with a particular emphasis on the interactions between patients and providers (Cohen & Ezer, 2013). Furthermore, this provincial law, passed in a context of frameworks promoting international human rights law, highlights government responsibility to support equitable health care and equitable access to health care services especially for vulnerable and marginalized populations in society, in particular people living with HIV (Cohen & Ezer, 2013; UN Committee on Economic, Social and Cultural Rights, 2000).

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Despite legislation to respect the right of accessibility and access to health care without discrimination, women living with HIV continue to experience challenges and barriers to receiving care. At a critical time when people living with HIV are increasingly accessing health services for episodic or chronic health conditions, women with HIV can experience multiple barriers to accessing care, including lack of transportation, care giving responsibilities, employment, drug coverage, housing instability, immigration, HIV disclosure, stigma, and discrimination (Buka, 2002; Marx, Katz, Park, & Gurley, 1997; Melchoir et al., 2001; Wood, Tobias & Mccree, 2004). Women living with HIV experience gender inequality or social marginalization, including HIVrelated stigma. Notwithstanding improvements in longevity and quality of life in the era of combination antiretroviral therapy, women with HIV may experience greater health disparities, which may impact HIV health status and disease outcomes (Krentz et al., 2006; OHTN Rapid Response Service, 2010; The Antiretroviral Therapy Cohort Collaboration, 2008). Women living with HIV in Ontario are less likely to be on combination antiretroviral therapy and have undetectable plasma HIV viral loads, and are more likely to experience HIV symptom burden, compared with men with HIV (Bayoumi et al., 2010; Krentz et al., 2006). Women, particularly those who use drugs and racialized women, are overrepresented in hospitalizations and emergency department visits (Krentz et al., 2006). Women living with HIV are less likely to have medical benefits, but are more likely to have caregiving responsibilities, resulting in financial challenges associated with health disparities (Kates & Carbaugh, 2006). HIV-Related Stigma and Discrimination When considering the various health disparities and challenges women may face when accessing and receiving health and social care, the impact of HIV-related stigma as a determinant of health cannot be ignored. Goffman (1963) defined stigma as a “mark,” aspect of the self and “attribute that is deeply discrediting” (p. 3) and socially devalued. Furthermore, Link and Phelan (2001) conceptualize stigma as a social process where labeling, stereotyping, separation, status loss, and discrimination coexist with power dynamics. Parker and Aggleton (2003) also conceptualize stigma as a social process that operates at the intersection of culture, power, and difference. Regardless of the conceptualization of stigma, we agree with Earnshaw and Chaudoir (2009) that HIV-related stigma can prompt a cascade of deleterious outcomes for people living with HIV. The intersectional model of HIV-related stigma operating at the intersection of culture, power, and difference is supported by a plethora of research, which highlights the layering of HIV stigma on a foundation of marginalized social identities and inequities related to sexism, racism, and homo/transphobia (Land & Linsk, 2013; Logie, James, Tharao, & Loutfy, 2011; Loutfy et al., 2012; Parker & Aggleton, 2002; Voisin, Bird, Shi Shiu, & Kreiger, 2012). For example, differences have been shown between Caucasian and non-Caucasian people with HIV regarding HIV stigma, whereby people of color living with HIV are more likely to report feeling stigmatized because of their HIV status (Emlet, 2007; Land & Linsk, 2013). How does HIV stigma play out in the lives of women? Women are not only more vulnerable to HIV infection, they are also more likely to be stigmatized or blamed for its transmission resulting in greater stigma toward women living with HIV (Lekas, Siegel & Schrimshaw, 2006; Long, 2009a, 2009b). HIV-related stigma and fear of disclosure continue to create barriers for women with HIV

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to access HIV-specific support (Kako & Dubrosky, 2013; Peterson, 2010; Sandelowski et al., 2004) and can result in women avoiding critical health care services (Nyblade, Singh, Ashburn, Brady, & Olenja, 2011; Turan, Miller, Bukusi, Sande, & Cohen, 2008). Disclosure to friends, family, social support networks, and health care providers has been associated with marginalization, isolation, and social exclusion (Loutfy et al., 2012; Vanable, Carey, Blair, & Littlewood, 2006). HIV stigma may be particularly challenging for midlife and older women as they may be reluctant to discuss HIV and high-risk sexual behaviors because of societal stigma associated with HIV (Jacobs & Kane, 2010; Montoya & Whitsett, 2003), as well as being labeled as having deviant behavior (Kako & Dubrosky, 2013). Methods In 2009, the authors were positioned as research personnel within a regional, outpatient HIV clinic in central west Ontario. The clinic, which served a vast geographical region representing women living with HIV in both urban and rural settings, launched the Gender and Health Study in response to 1) increased representation of women at the clinic, particularly from diverse ethnocultural communities, 2) a clinic relocation that impacted quality of health care and prompted an examination of service delivery, and 3) corporate support for initiatives focusing on women and children. Furthermore, in light of the variable issues facing women in the current context of HIV based on a review of the literature, the authors thought the health care experiences of this population warranted further investigation and understanding. The Gender and Health Study sought to identify the unique challenges, barriers, and needs of women receiving care at the HIV clinic, 67% of whom were newly diagnosed and within their childbearing years; following an increased number women accessing care from 9% in 1996 to 36% in 2012; and an increasingly diverse clinic population. In 1996, 85% of patients identified as White, whereas in 2006, 52% identified as Black, Asian, Aboriginal, or other. Enhancing our understanding of the complex and diverse needs of this patient population was essential to building capacity for women-focused service delivery within a tertiary care setting. Qualitative case study methodology informed by Yin (2003) was used to explore the health care experiences of women living with HIV who accessed care at the clinic. It was important to explore this issue from multiple perspectives, as well as within the boundaries and context of a particular clinical setting (Baxter & Jack, 2008). The project was carried out in two phases. Indepth interviews with providers working in the clinic representing various disciplines (n ¼ 12) were conducted in phase 1 from January to May 2010. This paper focuses on findings from in-depth interviews with women receiving care (n ¼ 17), which were conducted in phase 2, from March 2011 to February 2012. As per the qualitative case study methodology and in light of our literature review of the current context of HIV, specifically women living with HIV in Canada, we identified the following a priori issues affecting access to HIV care: language barriers and need for interpretation services, transportation, geographical distance from the clinic, child care or other care giving responsibilities, employment, drug coverage, ability to navigate financial assistance systems (e.g., Ontario Disability Support Program), housing, immigration, HIV disclosure and the associated legal and social implications, relationships, pregnancy, parenting, and perinatal care. From these prepositions, a semistructured interview guide was finalized (Appendix A).

Sampling Strategy Purposive, convenience sampling was used to enroll women with HIV who were 18 years of age and older as they attended scheduled appointments. It should be noted that this project was presented to women as a clinic quality assurance and program evaluation to improve HIV clinical services for women accessing care at this regional outpatient clinic. As such, we wanted women to be able to maintain anonymity so they could speak unreservedly regarding the care they received at the clinic and within other health care settings. We deliberately chose not to have participants complete an extensive demographic questionnaire so they could be confident that their responses would not have any implications on the health services they received or be connected to their medical records. We aimed for a representative sample reflecting the diversity of women living with HIV in Ontario and the geographic region the clinic served. To ensure thematic saturation, we invited women to participate who represented various socioeconomic, ethnocultural, racial, educational, age, relationship, and citizenship identities and circumstances. A limitation of our sampling was that funding did not permit interpretive services and as a result interviews were conducted in English. Qualitative Data Collection Semistructured interviews lasting approximately 1 hour were conducted to ensure similar issues were discussed with each participant while enabling flexibility to explore other issues as they arose. Seventeen interviews were audiorecorded and transcribed verbatim. Participants were given a $50 honorarium for expenses incurred. The Hamilton Health Sciences/McMaster University Faculty of Health Sciences Research Ethics Board granted ethics approval. All participants signed a consent form before the interview. Qualitative Data Analysis Following Yin’s qualitative case study approach, a set of preliminary codes was developed from the literature review and interview guide. Interview transcripts were then coded for health care experiences using NVivo8 software. Stories of stigma emerged very early in our qualitative analysis. As such, stories of stigma were initially organized as a broad list of initial ideas and themes (Braun & Clark, 2006). Thematic analysis was then used to identify, interpret, and report patterns in the data, in particular, the experiences, meaning and realities of participants (Braun & Clark, 2006). The transcripts were reviewed to determine whether emerging themes aligned with a priori codes related to barriers and facilitators to accessing HIV care and other health care services (Braun & Clark, 2006). Ongoing analysis of the transcripts was conducted to refine each theme (Braun & Clark, 2006). Thematic analysis describes and intersects women’s experiences of health care with experiences of HIVrelated stigma; as such, their health care experiences are contextualized in relation to the literature and broader theoretical implications (Braun & Clark, 2006), in particular, highlighting HIV-related stigma as a determinant of health and health care experience. It should be noted, however, that every attempt was made to honor the voices of women who participated and to avoid applying a researcher’s interpretive lens and ‘reading’ HIVrelated stigma where it did not exist. To incorporate a full range of women’s experiences, we listened carefully to the individual

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and collective accounts and used verbatim stories liberally (Reimer-Kirkham & Anderson, 2002). Findings Participants Seventeen women agreed to participate in the Gender and Health Study (see Table 1 for demographic information). The median age of participants was 48 years (range, 32–74). The majority of women were from Canada (65.7%) followed by 29.4% and 5.9% identifying an African or Caribbean country as their place of origin, respectively. Challenges Accessing Care Across the Health Care System When we asked women about their day-to-day experiences living with HIV, they shared challenges accessing health care in settings outside of HIV clinics and reflected on earlier interactions with the health care system leading up to or at the time of their HIV diagnosis. Women’s memories of these early health care experiences, particularly at the time of HIV diagnosis, were not about the types of services they received, but about -vis how they were treated, which left a feeling stigmatized vis-a lasting impression: You likely won’t remember all the details leading up to a diagnosis, but you’ll remember how you were treated, always. Early experiences of health care particularly at the time of HIV diagnosis developed women’s perceptions of HIV-related stigma and suboptimal care. Because of how an HIV diagnosis played out in non-HIV health care services, women developed a sense of how they “should” be treated as women living with HIV in the health care system, which contributed to women’s perceptions of how they would ultimately be treated when accessing HIV care. As a result, some women were fearful to access HIV-specific care: I wasn’t prepared, just ‘so oh you HIV positive’, and there wasn’t any counselling . so with that impression I, I was scared to come to the clinic at first. Insufficient health counseling at the time of HIV diagnosis and stigmatizing attitudes in non-HIV health care services had broader implications for future interactions with the health care system, as well as women’s health and wellbeing. HIV “Risk” and HIV-Related Stigma Women described interactions with health care providers in diverse settings, for example, walk-in clinics, emergency

Table 1 Demographic Information

Age (y) Country of origin Percent

Median

Min

Max

48 Canada 65.7

32 African country 29.4

74 Other: Caribbean 5.9

Note. We did not ask women to complete a demographic questionnaire because the data collection was connected to a clinic quality assurance and program evaluation. As such, it was important for women to maintain anonymity so they could speak unreservedly about the care they received at the clinic and within other health care settings. We did not want women to feel their responses would have implications on the health services they were accessing, or be connected to their medical records.

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departments, and labor and delivery units, whose conduct suggests a lack of HIV knowledge and an inability to contextualize HIV care into current health care practice. In many cases, lack of preparedness on the part of health care providers resulted in practices that can best be described as unethical; these practices left women feeling stigmatized and insulted. For example, many women described being given their HIV diagnosis in defiance of their health care rights: I’m coming in to get the results with this, they were rushing saying, well, HIV, here’s all the paperwork . and this was a shock, ‘cause I didn’t know I was being tested for it. Women were tested for HIV without their knowledge or consent, and were given their HIV diagnosis without appropriate and sufficient pre- and post-HIV test counselling: I remember I went to the walk-in clinic and then the doctor . came out and said that I was dying.that I was HIV-positive, that I had AIDS.I was devastated. Women felt stigmatized when they were treated hastily by health care providers and did not receive up-to-date and correct information about their HIV diagnosis in a supportive and accessible manner. Furthermore, as part of their HIV testing and diagnosis experience, some women felt stigmatized because of how stereotypes regarding how HIV are transmitted and who is perceived to be “at risk” of acquiring HIV were enacted, for example: It wasn’t a good experience because . he start to ask me about like uh how many guys you have . you have HIV, you are have too many guys. and I was visited by the immunologist.who wanted to know every single um detail.when, who and what and where, he went so far back . I went ‘I was married for 21 (years)’. and I wasn’t active, my husband was my first partner’ but he wanted to know more and it was a little bit insulting. Many women were interviewed in this fashion as part of contact tracing procedures, also referred to as HIV partner notification, which is a public health practice of identifying, locating and informing someone that a partner they have had sex or used drugs with has been diagnosed with HIV (CATIE, 2014). Women undergoing contact tracing by a health care provider who did not “fit” the stereotypes associated with HIV risk, for example, promiscuity and multiple sexual partners, substance use, also perceived their HIV testing and diagnosis experience as HIV-related stigma. Regardless of whether it was contact tracing procedures or providing women their HIV diagnosis, women did not feel the information regarding their HIV status and subsequent prognosis and care opportunities were communicated in a supportive manner and women often felt blame and shame for acquiring HIV. As noted in the above narratives, HIV-related stigma crept into many facets of women’s health care interactions; this was also the case for newly diagnosed women who may themselves be unable to contextualize their HIV risk. HIV Disclosure and HIV-Related Stigma Privacy and confidentiality in the context of receiving health care services is a fundamental and ethical right (Ministry of Health and Long-Term Care, 2004). In most health care

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settings, however, disclosure of one’s HIV status becomes nonnegotiable. because HIV becomes a tool to categorize, describe, and communicate about a patient within medical records and among health care teams. Nonetheless when women perceive health care providers to be insensitive to their privacy, or worse, inadvertently disclose their HIV status, women perceive and relate these behaviors to HIV stigma: [T]he nurses . would say do you have any allergies? I had a bad experience with one of the HIV meds, Kivexa, . my parents would be sitting there ‘what’s that for, what are you allergic to?’ .. I had to.say you know what, please don’t ask me if there’s visitors in my room. By discussing HIV medications in front of her parents, this woman’s HIV status was inadvertently disclosed and she was left to manage the disclosure by downplaying her medications to her parents and holding her nurses accountable to protect her personal health information. This woman felt stigmatized because her health care team did not take the time to understand the implications of discussing her HIV medications in front of hospital visitors, which resulted in a breach of privacy and confidentiality from the woman’s perspective. Regardless of whether a woman was adherent to her antiretroviral medication, was virologically suppressed, which had implications for her medical care, and had fully disclosed her HIV status, health care providers were ill-equipped to incorporate HIV into women’s care plans, for example, in the context of labor and delivery: I’m in there screaming well when you’re in labor.but they were kind of almost saying who’s gonna be the nurse, I don’t want to be the nurse for you know all these bodily fluids .(her partner) could hear them talking. out in the hallway. This woman’s experience of HIV-related stigma occurred during childbirth at a vulnerable time, when all women should expect to receive supportive and sensitive care. Instead, she witnessed “fear of contagion” by her nurses, who were fearful of handling her bodily fluids during childbirth. The nurses present in the labor and delivery unit were unable to appropriately contextualize HIV in obstetrical care, and as a result this woman and her partner felt stigmatized and not supported. Women perceived health care providers’ “fear of contagion,” which manifested as refusal or reluctance to provide treatment, as HIV-related stigma: [S]he got a referral saying I was HIV and I told her I’m on medication . so when I went to see her for the surgery before . she started saying that I never told her that I was HIV and she didn’t want to do my surgery. I had . a doctor . he came in and checked me out but he was treating me like, ‘Oh my god I’m gonna catch this disease,’ like he was even scared to touch me you know and he just see me for 5 minutes and let me go. Women’s interactions with health care providers, even if brief, were experienced as HIV-related stigma when health care providers responded or acted in such a manner that suggested they were fearful of acquiring HIV. Health care providers’ “fear of contagion” manifested even if women were virologically suppressed and the risk of transmission was negligible, suggesting a lack of knowledge on the part of the health care provider regarding HIV transmission.

Women Living with HIV Desire Holistic and Equitable Care Women perceived health care that failed to contextualize HIV as a medically managed health condition as stigmatizing, but also an example of inequality: I don’t expect to be treated any differently that anybody else, I don’t expect to be treated better I don’t expect to be treated worse, you know. Rather than passively internalizing HIV-related stigma experienced during health care interactions, women in our study showed great resilience by holding health care providers accountable to improve their knowledge of and sensitivity toward HIV: [J]ust the awareness for health care providers in every sector, how HIV’s transmitted and how they can best provide care to people who are HIV-positive without just looking at their disease, but treat them as a whole person the way they treat someone with cancer. Moreover, some women framed their expectations for all health care providers and settings as linked to institutional policies and practices. One woman pointed to a broader role of HIV clinics to liaise with non-HIV disciplines and care settings to ensure that all people living with HIV have access to “safe” care, that is, health care free of stigma delivered in a nonjudgmental and supportive manner: This doctor will be okay with this kind of patient cause they referred me.they’re more understanding and more knowledgeable about HIV so if they can keep doing that to other patients too, to say okay you need a family doctor.do a referral, can you take this patient please and this is their situation. The Gender and Health Study participants highlighted how initial interactions with the health care system after an HIV diagnosis set the tone for future health care experiences, which are often perceived as stigmatizing and insensitive to issues of privacy and confidentiality. Women living with HIV know what constitutes appropriate health care, and demonstrate significant strength in holding health care providers accountable as they navigate the health care system. Women living with HIV also understand the leadership and advocacy role that providers working in the HIV sector can play to dispel myths and assumptions about HIV while reducing HIV-related stigma at macro and institutional levels. Major themes that emerged in participant narrative throughout their care trajectory have been summarized in Table 2. What is suggested from women’s voices, and regrettably missing from their health care provider interactions, is the fundamental right to equitable and accessible health care without fear of discrimination or stigma. Discussion Women living with HIV in Ontario, Canada, described poor quality health care experiences, which compromised their emotional and psychological safety, and, in some cases, violated their fundamental right to equitable health care. The research team took great care to identify potential barriers to accessing care in the literature highlighting individual determinants of health. When women living with HIV talked about their health

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Table 2 Major Themes Code

Subcode

Diagnosis and testing Early experiences of HIV care HIV stigma is perceived when the 3Cs of HIV testing are not provided

Diagnosis enacts HIV stigma and stereotypes about who ‘gets’ HIV

HIV disclosure Inadvertent disclosure: privacy and confidentiality are secondary to communicating women’s HIV status HIV knowledge and health care practice Refusal or reluctance to treat women with HIV

Failure to contextualize women’s HIV status in treatment plan Excessive use of contact precautions/fear of contagion

Agency and resistance Holding health care providers accountable to improve their knowledge of and sensitivity toward HIV: Institutional responsibility for safe, equitable HIV care

Quote “You likely won’t remember all the details leading up to a diagnosis, but you’ll remember how you were treated, always.” “I’m coming in to get the results with this, they were rushing saying, well, HIV, here’s all the paperwork . and this was a shock, ‘cause I didn’t know I was being tested for it.”“I wasn’t prepared, just ‘so oh you HIV positive’, and there wasn’t any counselling . so with that impression I, I was scared to come to the clinic at first.”“ I remember I went to the walk-in clinic and then the doctor . came out and said that I was dying.that I was HIV-positive, that I had AIDS.I was devastated.” “It wasn’t a good experience because . he start to ask me about like uh how many guys you have . you have HIV, you are have too many guys.”“I was visited by the immunologist.who wanted to know every single um detail.when, who and what and where, he went so far back . I went ‘I was married for 21 (years)’. and I wasn’t active, my husband was my first partner’ but he wanted to know more and it was a little bit insulting.” “[T]he nurses . would say do you have any allergies? I had a bad experience with one of the HIV meds, Kivexa, .my parents would be sitting there ‘what’s that for, what are you allergic to?’ .. I had to.say you know what, please don’t ask me if there’s visitors in my room.” “[S]he got a referral saying I was HIV and I told her I’m on medication . so when I went to see her for the surgery before .she started saying that I never told her that I was HIV and she didn’t want to do my surgery.” “I don’t expect to be treated any differently that anybody else, I don’t expect to be treated better I don’t expect to be treated worse, you know.” “I had .a doctor .he came in and checked me out but he was treating me like, ‘Oh my god I’m gonna catch this disease’ like he was even scared to touch me you know and he just see me for 5 minutes and let me go.” “[J]ust the awareness for health care providers in every sector, how HIV’s transmitted and how they can best provide care to people who are HIV-positive without just looking at their disease, but treat them as a whole person the way they treat someone with cancer.” “This doctor will be okay with this kind of patient cause they referred me.they’re more understanding and more knowledgeable about HIV so if they can keep doing that to other patients too, to say okay you need a family doctor.do a referral, can you take this patient please and this is their situation.”

care experiences, however, they connected the suboptimal treatment they experienced as individuals to broader systemic issues, in particular, HIV-related stigma as women living with HIV. Women’s stories of HIV-related stigma in health care settings suggest that, to understand barriers to accessing health care and facilitate improvements, we need to move beyond individual determinants of health and refocus our attention to systemic and structural factors. If the disparity between biomedical and treatment advances in HIV and the persistence of HIV-related stigma is understood as occurring in settings that produce and reproduce social inequality, then health services are implicated (Link & Phelan, 2001; Parker & Aggleton, 2003). Suboptimal health care practices fail to redress issues of power and control between health care providers and women who feel marginalized (Van Den Tillaart, Kurtz, & Cash, 2009). This is the case for women living with HIV who contend with HIV-related stigma, societal assumptions of who “gets” HIV, sexism, and, in some cases, racism. Our findings are consistent with research suggesting that health care provider knowledge, attitudes, and beliefs have not kept pace with available knowledge and training about HIV (BradleySpringer, Stevens, & Webb, 2010; OHTN Rapid Response Service, 2010). As HIV continues to evolve as a chronic condition, health care providers across disciplines will increasingly be required to integrate HIV knowledge into their practice (Bradley-Springer et al., 2010). Furthermore, health care providers must consider the broader social determinants of health, including health care itself, to holistically situate their practice in women’s identities and social circumstances while at the same time ensure

sensitivity to issues of oppression and diversity (McGibbon, 2009; OHTN Rapid Response Service, 2010). The Gender and Health Study findings suggest a reconceptualization of the “culture of health care” to understand “how practices, policies and research approaches within healthcare can themselves create marginalizing conditions and inequities” (Browne, Smye, & Varcoe, 2005, p. 32). Our findings challenge conceptions of what constitutes “patient safety” within the context of HIV stigma, privacy, and confidentiality when delivering care to people living with HIV. From the perspective of women who participated in our study, “patient safety” goes beyond practical and logistical approaches to ensure a “safe” health care environment; “patient safety” also includes measures to protect against HIV-related stigma, stereotyping, discrimination, HIV disclosure, and breaches in privacy and confidentiality. Understanding the health care system through this holistic lens and adopting policies, practices, and research approaches that align with these philosophies can ensure women living with HIV are not left feeling diminished and disempowered when accessing health services (Browne et al., 2005). Implications for Health Care Provider Training and Pedagogy Integrating the social determinants of health and considering oppression and diversity within health care practice can only occur if the learning environment in which providers are trained encourages this epistemological perspective. Research conducted with nursing students suggests that, for many health care professionals in training, reluctance to provide

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care to people living with HIV is rooted in fear of contracting HIV (David, Lindy, & Ingrid, 2009) and a lack of sensitivity to cultural and ethical issues when working with diverse service users, such as men who have sex with men, people who use injection drugs, or groups who are racialized or marginalized (OHTN Rapid Response Service, 2010). Raphael (2006) argues that medical school curricula must address the structural barriers that prevent the medical profession from addressing the social determinants of health, which are part of the core curriculum in medical training and identified as key concepts on the Medical Council of Canada’s qualifying exam (Huth & Raphael, 2011). Furthermore, despite a desire and willingness to increase their knowledge of different patient populations, health care providers and trainees continue to experience “structural, skills and knowledge-based and personal barriers” for educational and practical opportunities to deliver HIV care (Drainoni, Dekker, D., Lee-Hood, Boehmer, & Relf, 2009; OHTN Rapid Response Service, 2010). One explanation may be that physicians privileged by social location have little experience with the determinants that create health disparities and inequities (Huth & Raphael, 2011) and, through indoctrination into biomedical traditions, adopt attitudes, beliefs, practices, and language that contribute to marginalizing health care practices and experiences (Van Den Tillaart et al., 2009). Regardless, opportunities can be created for trainees to engage with individuals and communities to understand and contextualize their lived experiences, for example, women living with HIV. Opportunities can also be created for trainees to understand the role of health advocacy, which is the linkage between the social determinants of health and improving health outcomes (Huth & Raphael, 2011). Health care becomes a powerful determinant when it presumes that all patients have transportation, child care, and employment, and ignore hidden or indirect barriers to accessing health care in Canada (McGibbon, 2009). Huth and Raphael (2011) argue that the conservative orientation of medical research and practice, where health care providers are not positioned as advocates or active players in structural change, is ill-suited to investigate and employ the social determinants of health; in fact, a CanMEDS survey showed that, of all core competencies, the role of health advocate had the least incorporation into residency programs (Frank, 2005). We challenge this notion and suggest a framework through which this can be accomplished. Contextualizing Health Care from the Perspective of Women Living with HIV Through the adoption of “knowledge-based practices” (Glasby & Beresford, 2006), the practice wisdom of health care providers and the lived experience of service users (or affected communities) can be equally positioned as valid and valued ways of knowing. In the context of research, participatory research approaches can be adopted within health care settings that meaningfully engage “service users” in program evaluation and research (Ahmed, 2004; Etowa, Bernard, Oyinsan, & Clow, 2007; Israel, Schulz, Parker, & Becker, 1998). For “knowledge-based practice” approaches to be successful within health care settings, participatory models must be welcomed and integrated within the culture of health care, and researchers must develop their skills to ensure the research meaningfully involves affected communities (Ahmed, 2004; Ontario AIDS Network, 2011). Furthermore, the knowledge and experiences of affected

communities, for example, health care experiences of women living with HIV, must be acknowledged and valued by decisionmakers, institutional leaders, and funders (Ahmed, 2004; Jaworsky et al., 2012). This may require a philosophical shift, where health care leaders come to understand the value of participatory approaches and the meaningful involvement of service user communities (Ahmed, 2004; Ontario AIDS Network, 2012). This philosophical shift may also require the evolution of research methodologies to more participatory frameworks and methods (McCoy, 2005; McNaughton et al., 2013; Pence, 2001; Pence & Shepard, 1999; Praxis International, 2010; Sinding, 2010; Wilson & Pence, 2006). In health care administration, “knowledge-based practices” (Glasby & Beresford, 2006) can equate to engaging service users in evaluative and corporate initiatives, for example, dissemination of a patient experience survey, development of a quality council for a specific clinical setting, and changing membership to include service users on leadership committees, boards or working groups (Ahmed, 2004). Through these patient engagement initiatives, it is important to create mentorship opportunities to ensure service users are meaningfully involved (Ontario AIDS Network, 2011, 2012). It has also been proposed that health equity can best be achieved through health system reform that includes both human rights and social justice approaches to guide health care provider practice (McGibbon, 2009). Although in its infancy, health equities competency would integrate meaningfully human rights and social justice into health care policies, practices, and service delivery models (McGibbon, 2009). Equities competence is compatible with participatory approaches that challenge the importance of scientific objectivity in research and biomedicine, advocate the inclusion of critical social science knowledge in medical education and practice, and value the importance of qualitative research for exploring the lived experience of patients in health care (McGibbon, 2009). As many health care institutions face a disconnect between the application of research findings to solving health problems facing communities (Ahmed, 2004), participatory approaches become a viable and important process to conduct research that is meaningful to both academia/health care institutions and affected communities (Ahmed, 2004; Newman, 2009). Because the hallmark of participatory approaches includes emancipatory properties and addressing inequalities, they may be our best tool to address structural and institutional barriers to optimizing patient care. Through participatory approaches to research and practice, knowledge and understanding of health care institutions and academic researchers can be expanded “beyond bedside and clinic to a much broader and more complex setting” (Ahmed, 2004, p. 150); this will in turn account for the social and structural determinants that create health disparities and stigmatizing health care experiences for women living with HIV and other service user communities (Newman, 2009). Furthermore, the organization of service users, as seen in social service sectors (Dumbrill, 2010), can be a catalyst for health care policy and practice change. By becoming more in tune with the needs and experiences of health care consumers, health care providers can support participatory approaches and effectively assume the role of health advocate thereby improving health services and outcomes (Huth & Raphael, 2011; Jaworsky et al., 2012; Ion et al., 2011a, 2011b; Toronto People with AIDS Foundation, 2013; Jaworsky et al., 2010, 2012; Makuwaza et al., 2012; McNaughton et al., 2013; Morin et al., 2011).

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Conclusion The realization that suboptimal health care is perceived as HIVrelated stigma by women living with HIV aligns with literature from North America and globally that connects discrimination and HIV-related stigma in a health care context. The experiences of women living with HIV challenge the notion that health ‘care’ is exempt from critical examination of how organizational culture, service delivery models, and health care teams influence health care utilization and clinical outcomes. Our findings support the position that health care is a social determinant. For women living with HIV, the treatment they receive within health care institutions becomes a health determinant (Newman, 2009), one that leaves a lasting, and often negative, impression. Participatory research approaches become a catalyst for health care reform, offering the health care system an opportunity to reflect on whether its response to HIV has kept pace with epidemiological shifts and treatment advances. Upstream of health care service delivery, we propose that structural health care reform begins with educational curriculum for all health professionals including physicians, nurses and allied health providers. We propose a participatory framework with potential for improving the quality and equity of health care for people living with HIV and arguably for any marginalized persons. Such a framework, integrated into the culture of health care and evidence-based practice, has the potential to shift the epistemic imbalance in health care to a more patient-centered health care model more contemporaneous of the Triple Aims (Stiefel & Nolan, 2012) of health care: better quality, more cost efficient and improved experience of care.

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Author Descriptions Allyson Ion, BSc, MSc, is currently a PhD Student in the School of Social Work at McMaster University. Allyson has contributed to numerous clinical and communitybased HIV research initiatives regarding women, motherhood, health and social service utilization, and peer support since 2006. Dawn Elston, BA, MA, is a Research Coordinator in the Department of Family Medicine at McMaster University. Dawn collaborated on several research projects in the area HIV and women’s health between 2006 and 2012.

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Appendix A. Prepositions We need to identify our prepositions (or hypotheses) of issues that will be identified by the service providers (based on the literature or quantitative data collected from the clinic). May be related to:     

Language barriers and need for interpretation/translation Transportation Geographical distance from the outpatient clinic Child care Employmentddesire to return to work; employment supports; employment training

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 Drug coverage  Navigating Ontario Disability Support Program (ODSP), Ontario Works, and Trillium  Housing  Immigration  Disclosuredlegal and social implications  Relationships  Pregnancy  Parenting  Pre and perinatal care  Lack of diversity of Special Immunology Services (SIS) clinic staffdbarrier?  Assumptions about the needs of womendbarrier?