Stigma Experiences in Marginalized People Living With HIV Seeking Health Services and Resources in Canada

Stigma Experiences in Marginalized People Living With HIV Seeking Health Services and Resources in Canada

Accepted Manuscript Stigma Experiences in Marginalized People Living with HIV Seeking Health Services and Resources in Canada Leeann Donnelly, BDSc, M...

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Accepted Manuscript Stigma Experiences in Marginalized People Living with HIV Seeking Health Services and Resources in Canada Leeann Donnelly, BDSc, MSc, PhD, Lauren Baily, BA, MSc, Abbas Jessani, DDS, MSc, Jonathan Postnikoff, BA, Paul Kerston, Mario Brondani, DDS, MSc, MPH, PhD PII:

S1055-3290(16)30103-0

DOI:

10.1016/j.jana.2016.07.003

Reference:

JANA 838

To appear in:

Journal of the Association of Nurses in AIDS Care

Received Date: 22 January 2016 Accepted Date: 14 July 2016

Please cite this article as: Donnelly L., Baily L., Jessani A., Postnikoff J., Kerston P. & Brondani M., Stigma Experiences in Marginalized People Living with HIV Seeking Health Services and Resources in Canada, Journal of the Association of Nurses in AIDS Care (2016), doi: 10.1016/j.jana.2016.07.003. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Leeann R. Donnelly, BDSc, MSc, PhD Lauren Bailey, BA, MSc Abbas Jessani, DDS, MSc Jonathan Postnikoff, BA Paul Kerston Mario Brondani, DDS, MSc, MPH, PhD

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Stigma Experiences in Marginalized People Living with HIV Seeking Health Services and Resources in Canada

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Leeann Donnelly*, BDSc, MSc, PhD, is an Assistant Professor, Faculty of Dentistry, University of British Columbia, Vancouver, British Columbia, Canada ([email protected]). Lauren Baily, BA, MSc, is a Research Assistant, Faculty of Dentistry, Vancouver, British Columbia, Canada. Abbas Jessani, DDS, MSc, is a Research Assistant, Faculty of Dentistry University of British Columbia, Vancouver, British Columbia, Canada. Jonathan Postnikoff, BA, is a Treatment Outreach Coordinator, Positive Living Society of British Columbia, Vancouver, British Columbia, Canada. Paul Kerston is a Treatment Outreach Coordinator, Positive Living Society of British Columbia, Vancouver, British Columbia, Canada. Mario Brondani, DDS, MSc, MPH, PhD, is an Associate Professor, Faculty of Dentistry University of British Columbia, Vancouver, British Columbia, Canada. Corresponding Author: Leeann Donnelly: [email protected]

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Disclosures The authors report no real or perceived vested interests that relate to this article that could be construed as a conflict of interest.

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Acknowledgments Support for this study came from the Vancouver Foundation funding collaboration agreement #UNR12-0906. The authors extend their acknowledgements to the peer volunteers and to all participants who engaged in lively dialogue during the focus group discussions. The authors are also thankful to the community organizations that contributed to the development of this project and for hosting the discussions.

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Abstract HIV stigma may prevent people from obtaining a timely diagnosis and engaging in life-saving care. It may also prevent those who are HIV infected from seeking health and education

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resources, particularly if they are from marginalized communities. We inductively explored the roots of stigma and its impact on health service and resource seeking as experienced by HIVinfected members of marginalized communities in Vancouver, British Columbia, Canada, using

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a community-based participatory research framework. Five peer-facilitated focus groups were conducted with 33 Aboriginal, Latino, Asian, and African participants. Thematic analysis of the

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experiences revealed 4 dominant themes: beginnings of stigma, tensions related to disclosure, experiences of service seeking, and beyond HIV stigma and discrimination. Persons living with HIV from Aboriginal and refugee communities continue to experience disproportionate rates of stigma and discrimination. Fear remains a prime obstacle influencing these groups’ abilities and

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willingness to access care in various settings.

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Key Words: ethnic, HIV, mental health, patient care, prevention

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Stigma Experiences in Marginalized People Living with HIV Seeking Health Services and Resources in Canada Although HIV infection rates have been declining in Canada in recent years, in British

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Columbia such rates remain particularly high among Aboriginal persons and immigrants who arrived in Canada as refugees (McInnes et al., 2009). Some of these individuals living with HIV have been marginalized socially, economically, and politically, and not fully engaged in

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educational support and collective action. Some may also have felt disempowered and

experienced health inequity (Brondani, Minori, & Kerston, 2012). Although reasons for

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marginalization are complex and not fully understood, Aboriginal and refugee populations appear to be impacted to a greater extent in British Columbia (Brondani et al., 2012; Hogg et al., 1994). Moreover, not-for-profit community organizations have experienced a demographic discrepancy between the number of HIV cases reported and the population accessing their

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health-related HIV education services and peer support information: Those who access services do not fully represent the current documented demographic distribution of those affected by HIV in Vancouver, suggesting some groups are not being reached (Dowshen, Binns, & Garofalo,

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2009). Little is known about the reasons for this lack of engagement and information-seeking behavior (Luseno, Wechsberg, Kline, & Ellerson, 2010), although stigma seems to be one of the

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contributing factors (Brondani et al., 2012; Dowshen et al., 2009; Gilbert & Walker, 2010). HIV was categorized by Bayer (1991) as an exceptional disease, suggesting that those

affected by HIV would also be affected by social stigma. Although there have been immense improvements in quality of life indicators for people living with HIV (PLWH), especially after the development of antiretroviral therapies (ART), PLWH continue to face stigma in almost every realm of inter- and intrapersonal interactions (Sayles, Ryan, Silver, Sarkisian, &

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Cunningham, 2007). HIV stigma presents in many ways, and is most often experienced internally, in social circles, romantic relationships, and the workplace with detrimental psychosocial effects on an individual’s quality of life and mental health (Sayles et al., 2007).

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Moreover, HIV-related stigma may prevent people from timely diagnosis and engagement in life-saving care (Chesney & Smith, 1999; Young & Zhu, 2012). Despite advances in access to information and media, HIV-related stigma remains in society and is experienced by PLWH. For

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example, those infected with and affected by HIV often live in fear and consequently have

decreased utilization of health education information and community services, particularly

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individuals from marginalized communities (Cunningham et al., 2007).

In Canada, there were approximately 71,300 PLWH in 2011 (Public Health Agency of Canada, 2011), many of whom belonged to marginalized groups such as Aboriginal persons and refugees who arrived in Canada and were HIV-infected, and also gay, bisexual men and other

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men who have sex with men (MSM), and people who injected illicit drugs (Gardner, McLees, Steiner, Del Rio, & Burman, 2011; Knowlton, Hua, & Latkin, 2004; Public Health Agency of Canada, 2011). Also of importance, many PLWH identify with more than one of these

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marginalized groups and experience stigma in multiple, intersecting ways (Gardner et al., 2011). Although reasons for marginalization are multifaceted and stigma is only one aspect of this

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complex phenomenon, it remains essential to have a deeper understanding of the roots of stigma to address the unmet needs of PLWH who may be marginalized for one or more reasons. We believe a more nuanced understanding of the stigma that PLWH experience may help in the development of strategies to mitigate discrimination and negative perceptions that may hinder the ability to use resources and support services. Within a community-based participatory research framework (CBPR) that involved

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community members, PLWH, and researchers, our study aimed to explore: (a) how stigma was experienced by PLWH from marginalized communities and (b) barriers and facilitators to the utilization of resources and services by PLWH from Aboriginal, Latino/a, Asian, and African-

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refugee communities in the Greater Vancouver Area. This framework allowed for a collaborative approach to address a question identified by the community and its members as important to the overall health and wellbeing of PLWH. The proposed research question guiding this study was:

groups of PLWH?

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Methods

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How does stigma influence the utilization of health services and resources by marginalized

Peer Facilitators

We employed a CBPR framework to facilitate the sharing of expertise, responsibilities, and ownership of information (Minkler & Wallerstein, 2008). CBPR entails a partnership

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approach that equitably involves community members, organizational representatives, and researchers in all aspects of the research process, who contribute expertise and share the decision-making process and data ownership (Salimi et al., 2012). By rooting our approach

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within various communities, we hoped to increase our understanding of the role of stigma in the everyday lives of PLWH. In addition, the knowledge gained could continue to be used by and for

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these communities (Minkler & Wallerstein, 2008; Salimi et al., 2012) and would be an important step for further research addressing stigma and health inequities in marginalized groups (Mofidi & Gambrell, 2009; Takahashi, 1997). In order to adhere to community-based research principles, we collaborated with Positive

Living British Columbia (PLBC) throughout the course of the project and the PLBC Treatment Outreach Coordinator was a co-investigator for the study. By networking and consulting with

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local AIDS Service Organizations (ASOs; an Aboriginal organization and refugee non-profit organizations in the Greater Vancouver area), partnerships were formed with three main refugee communities affected by HIV: African, Latin-American, and Asian refugees. We employed four

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peer-trained facilitators to lead focus group discussions, our chosen method for gathering the personal experiences and life stories of participants. All facilitators were HIV-infected and selfidentified as either Aboriginal or a refugee and associated with the community partner

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organizations. Peer facilitators were recruited voluntarily and underwent a full-day training about the research project with members of the research team. The peer trainees were introduced to the

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goals of the project and general qualitative research methods. The training day focused on capacity building and empowerment by incorporating strategies for leading focus group discussions and techniques to be an effective facilitator. The peer trainees also provided feedback on the research objectives and research questions that had been initially developed with the

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research team, ASO stakeholders, and members of the HIV community. In accordance with CBPR principles, this feedback was used to refine research objectives and questions (Knowlton

would engage. Focus Groups

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et al., 2004) in order to address issues relevant to each group of participants that the facilitators

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Focus groups (FGs) were chosen to explore the values and beliefs about the nature and

complexity of personal and social factors that shaped our participants’ lives (Finch & Lewis, 2003; Kreuger, 1994). In stigmatized and marginalized communities, FGs can foster socialization and membership, and generate transformative change (Campbell, Nair, & Maimane, 2007; Kreuger, 1994). FGs allowed participants to explore feelings, experiences, opinions, and new ideas in a safe, inclusive, and nonjudgmental space (Kreuger, 1994; Sim, 1998). Facilitators

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were trained to pose comments and prompt the group to further refine the information discussed (Finch & Lewis, 2003; Kreuger, 1994). The peer-trained facilitators followed a semi-structured interview guide (Table 1) that covered the following topics: HIV knowledge, values, and beliefs;

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personal experience with stigma; perceptions of facilitators and barriers for decreasing HIV

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stigma; and perceptions of education and advocacy needed to reduce stigma.

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Table 1 Focus Group Questions

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Knowledge, awareness, and beliefs related to HIV ● What do you know about HIV transmission? ● How many different strains of HIV are there? ● When was the last time you read any new information about HIV? ● How do you rate your knowledge of HIV? Would you feel confident answering questions about HIV to a peer/friend? ● What are the behaviors/activities that might put somebody at risk for HIV transmission? ● How long do you think an average Canadian person with HIV lives? What if this person is a refugee or immigrant? ● How might oral health be associated with HIV? ● What does a person living with HIV look like to you? Concerns ● If a peer/friend asks you questions about HIV, would you feel confident answering them? Why? ● What are the issues and/or concerns that come to your head when you meet somebody who does know about your HIV status? Why do you think that happens? ● Have you heard of any other concerns or fears from your co-workers, peers, friends? ● What concerns you the most when you interact with somebody who is HIV positive? Why? Seeking Information ● How do you seek health care information about HIV? Why? ● How do you seek dental/oral care as an HIV-positive individual? ● What community services do you use? ● What concerns you the most when you seek for health care information given your HIV status? Why? ● What barriers do you encounter in seeking such information? Why? ● What barriers do you encounter with accessing community services? Why? Interactions with Health Care Providers ● What concerns you the most when you interact with a health care provider? Why? ● Does it differ if she/he is a family doctor, nurse, dental professional, other? Why? ● Have you disclosed your status? If yes, why, when, and to whom? If no, why? Did anybody do something that made you feel more comfortable about your HIV status? Like what? Stigma ● Have you ever experienced stigma/discrimination? If yes, how, when, and why? ● How do you define stigma? ● How do you understand the concepts of stigma, discrimination, and stereotyping? ● How do you think these associations, if any, relate to sexual orientation, ethnicity, and socioeconomic status? ● Why do you think there are such associations?

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Table 2 Demographic Characteristics of Participants

African - FG II

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Latino/a

Self-Reported General Health Fair Good Excellent Didn’t answer Fair Poor Excellent Excellent Excellent Fair Good Good Fair Good Good Good Excellent Good Good Fair Fair Good Good Fair Good Good Good Excellent Good Good Good Good Excellent

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M M M M M M F F M M M F F F F F F F M M M M M M M F F M M M M F M

Years Diagnosed with HIV > 10 6 - 10 > 10 > 10 > 10 > 10 > 10 > 10 > 10 1-5 6 -10 > 10 1–5 > 10 <1 1-5 6 - 10 <1 > 10 Didn’t answer 6 - 10 > 10 > 10 > 10 1-5 > 10 > 10 6 - 10 6 - 10 > 10 > 10 6 - 10 > 10

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59 55 38 50 51 55 45 52 59 35 39 33 39 66 18 53 38 39 49 64 30 54 61 46 48 35 52 41 36 54 45 40 74

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Asian

Gender

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African - FG I

Age

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Focus Group Aboriginal

Note. FG = focus group.

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Five FGs were conducted between July and October 2013, and lasted from 44 to 121 minutes. All FGs took place at locations where participants felt comfortable talking about sensitive experiences and confidential issues. Participants were recruited primarily through the

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peer facilitators or word-of-mouth at community organizations, including Watari Counseling and Support Service Society, AIDS Vancouver, Vancouver Native Health Society, Positive Living Society of British Columbia, and Positive Haven, all of which were located in the Greater

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Vancouver area.

In order to participate in the FGs, individuals had to be at least 18 years of age, identify

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as a refugee or Aboriginal, and be HIV-infected. No exclusions were based on length of diagnosis or time in Canada if participant self-identified as a refugee. The FGs had a mix of male (64%) and female (36%) participants ranging from 18 to 74 years of age and with time after HIV diagnosis ranging from less than 1 year to more than 20 years (Table 2).

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A total of 33 individuals participated in the five FGs and each group had 3-8 participants. Two FGs took place with members from the African community, and one FG was conducted for each of the Asian, Latino/a, and Aboriginal groups. The Latino/a FG was conducted in Spanish

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by one bilingual facilitator; the Asian FG was conducted in English by one multilingual facilitator, with some parts translated into Chinese and Vietnamese; and the FGs with the

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Aboriginal and African participants were conducted in English only. Each FG was audiorecorded and at least one member of the research team was present at all FGs to take field notes to record non-verbal responses and actions of the participants that might have influence on the interpretation of each discussion (Kreuger, 1994). Each participant signed an informed consent form approved by the University of British Columbia Ethics Board # H12-02552, and received 40 Canadian dollars and two transit-tickets as a thank-you for participating in the research.

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Data Analysis Following each FG, the audio-recording was transcribed verbatim by one team member and coded thematically using N-Vivo® 10 software. Field notes were also incorporated into the

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transcript as memos to add context to the narratives (Kreuger, 1994). We employed an iterative six-step process to conduct our thematic analysis (Finch & Lewis, 2003; Kreuger, 1994). The first step consisted of having one research team member read each transcript carefully to become

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familiar with its content while coding for the main ideas in excerpts. The second step had two other members of the research team also code the transcripts, and then all codes were compared

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and contrasted until agreement was reached. The third step consisted of one member combining similar codes so that major assertions could be made about what was found in the data pertaining to our objectives. The fourth step involved the entire team contributing to revising and recombining these similar codes to formulate main themes within the propositions related to our

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research question. The fifth step consisted of the team defining and naming the main themes. Finally, the sixth step involved the development of a map as a visual explanation of how the themes and codes related to each other.

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Trustworthiness

Various strategies were employed to ensure trustworthiness in this project. The CBPR

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research method facilitated extended engagement between the research team and the community, which helped develop an important research question and study protocol that would meet the needs of all involved. Furthermore, peer facilitators and stakeholders from the community organizations also periodically shared feedback on the conduct of the study, the focus group discussions, and analysis. The research team also conducted four debriefing sessions during the project to ensure that the analysis was capturing the true meaning of the participants. After our

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initial analysis was completed, we conducted two community forums as a way of member checking with participants, and other PLWH who were members of PLBC, to verify our interpretations and findings. This gave participants and other community members an

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opportunity to provide clarification and further input into the analysis. Finally, we incorporated our participant’s words, as much as possible, into our findings to support our analysis. Findings

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Thematic analysis revealed that the service and resource seeking behaviors of our

participants were similar across the groups and driven by an overarching theme of fear. Each

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group described how stigma and/or the fear of being stigmatized affected their lives and access to health services, education, and other resources. In particular, our analysis revealed four prominent themes: (a) beginnings of stigma, (b) tensions related to disclosure, (c) experiences of service seeking, and (d) beyond HIV stigma and discrimination. Negative reactions from others

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(enacted stigma), hearing of others being stigmatized (vicarious stigma), and the internalization of negative self-worth or value (internalized stigma) were reported by participants within these themes (Liamputtong, 2013). For most of the participants these forms of stigma often intersected

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and were compounded by personal experiences and those of their peers. One, or all, of these forms of stigma played a major role in the perception and/or action of participants when seeking

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health services or resources and were associated with an impact on their utilization. Each of the themes discuss the conditions under which stigma occurs and the outcome and impact they can have on health service and resource seeking. In order to freely explore the experiences of stigma, the interview guide was not bound to any existing framework, nor was our data analysis; the inductive coding process used enabled us to identify patterns across data that were important to the description of stigma as per our participants’ accounts.

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Beginnings of Stigma Stigma, or the fear of stigma, and its relationship to health service and resource seeking emerged as a process as opposed to a linear course that began with an HIV diagnosis and was

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further influenced by societal views and personal experiences. In general, internalized stigma was the primary underlying behavior in all of the focus groups and was highlighted as a key contributor to understanding one’s sense of self. A number of participants indicated that, “Stigma

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starts from you. You stigmatize yourself initially.” This was most evident when participants described their experiences of receiving the HIV diagnosis, and was heard in all focus groups. It

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was clear that participants had pre-conceived thoughts about HIV due to what they had seen and heard prior to their own diagnoses and was a clear driver of the manifestation of internalized stigma:

The fear was like, am I going to be like the people I have seen dying from AIDS? Am I

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going to be the same? Am I going to get sick in the same way? You know because I had seen people dying from HIV and my fear was, “Am I also going to be in that same pain that they went through until they are dead? Are people going to desert me because I saw

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people like when you are HIV-positive and you tell others they are HIV-positive? They die when they are deserting their people, you know? Are they going to desert me?”

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(African, female)

Experiences such as this were often accompanied by feelings of shame and guilt with

individuals blaming themselves for becoming infected. For many of our participants, the way in which the diagnosis was delivered largely contributed to how stigma became entrenched in their thinking. One participant from an HIV-endemic country was appalled at the lack of compassion HIV evoked from health care workers.

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I was [in a refugee camp] so they sent me to the hospital for testing. I didn’t get a good counsellor at all, the counsellor was really cruel [and]…she didn't give me hope at all. She said, “You are positive,” and I didn’t know the difference between positive and

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negative. In fact, I thought negative would mean HIV, so I thought maybe okay, this is good. [Then], she said, “You are going to have to start your meds right away.” I was like, “So you mean I have HIV?” And she was like, “Yes I said you were positive,” and she

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was like, “You have to take your meds or the virus is going to kill you,” in that language. I was so traumatized. I was like, “She is right, I am going to die.” (African, male)

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Negative associations with the disease, both prior to and after a diagnosis, predominantly centered on death and dying as one participant said,

I felt it was the end of me, and it was really a big experience, it was really a hard time to take it … You get to think about many things. First of all, the first you think of is dying,

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that you are going to die. (African, male)

While death and dying tended to occupy a central role in perceptions about HIV, both internally and socially, having an HIV-infected peer to talk to after diagnosis seemed to aid in

I thought of suicide but I had a friend, a good friend…. who saw me sweating and he

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HIV.

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reducing fears about the disease and helped break some of the stereotypes associated with having

said, “What is wrong with you….are you not going to Canada?” In fact, I thought I am not going, because Canada will not take someone who was HIV positive. I lost that hope. I said, “I am going to tell you something, I don’t care if you are going to keep it a secret, you don’t even have to, because it won’t help me, I am HIV positive.” ... He was HIV positive himself! I didn’t know he was! He was healthy, he was playing [mixed martial

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arts]. He sat me down and was like, “You know what, this is not the end. I am HIV positive as well.” I felt so happy! I was thinking like, ...”You are not alone!” (African, male)

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HIV-infected peers also helped participants adjust to and cope with the new diagnosis by providing education about the condition; as one African female said, “Once you get to know someone with the knowledge about HIV, you are good to go.” However, in order to find these

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individuals, it meant the participants needed to first tell someone else about being infected. The fear of disclosure featured prominently in focus groups and, depending on the responses of those

fear and stigma they were experiencing. Tensions Related to Disclosure

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with whom they chose to share this information, the act itself either alleviated or exacerbated the

A major concern discussed by participants in relation to the development of stigma and

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how this influenced health service and resource seeking behavior centered around disclosure. When it came to disclosing their HIV status, regardless of the relationship, there was a fear of, “I don't know how the person is going to take it. That's the only problem everybody has. How the

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person is going to take it,” and whether or not they could “keep a secret” (African, female). Negative reactions from those they told beforehand lead some participants to perceive stigma to

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be true and was further exacerbated by their own self-perceptions of now having HIV. As one Latino male noted, it was hard because, “You feel like a loser,” while another said, “You feel like a sin, or curse, or that god cursed you.” Further sentiments among many of the participants suggested that, “Once you step out, you lose your family, you lose your friends... even your children can desert you,” and, when reactions confirmed those fears, it perpetuated the fear and anxiety that was assumed to be true. Whether these thoughts were intensified by how the

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diagnosis was delivered or the particular societal views that permeated these individuals’ lives, it was apparent that the dangers associated with disclosing their status to others, even friends and family, were real with potentially devastating consequences.

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When I was told I was HIV I just felt like I was out of place. I was on my own and when I went and I told my friend [he]… started avoiding me, so I felt like I am now useless, I am going to lose people because I am HIV positive. (African, male)

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I can tell you that your community, your family rejects you. This is when society comes in... I have seen many people that commit suicide because no one accepts them, they

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don’t fit in. And I mean they find themselves useless [and ask themselves], “Why am I suffering like this after all I am going to die. Let me just die.” Or these are the people who are going to go out and infect others. (African, female)

It was also clear that for many participants, ignorance in the general population still

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existed when it came to knowledge and awareness of HIV transmission and directly resulted in anxiety and stress surrounding disclosure. This reinforced the stigma, impacting decisions to disclose their status. As one woman said:

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When people talk about disclosing, they don’t know the weight of disclosing. I think when people are talking about disclosing to whoever, your family or anyone, people

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should be educated. People are not educated at ALL about HIV in Canada. Children don’t know anything about HIV, even African kids, they know more about HIV than these kids here. (African, female)

To illustrate this ignorance and lack of knowledge, another participant shared a recent story: They think people with HIV are victims. You touch him, you get it, you shake hands with that person, you get it, you share the same table, and you get it. A friend of mine took a

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girlfriend out and this guy was ready to disclose [because] … this girl was interested in the guy. The guy was like, “Before we go far, I want to tell you something… I am HIV positive.” It was a big scene… The girl called the police. She was like, “You have been

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touching my food, you have been touching my glass and you are HIV positive”….They let the guy go because he did the right thing [but] everyone in that restaurant knew that this guy was HIV positive. (African, male)

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While the majority of what we heard was about disclosure and its negative consequences toward stigma, it is important to note that not all experiences of disclosure were negative. When

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experiences of disclosure resulted in a positive reaction, it countered the effects of stigma and lead to at least one participant feeling as though it gave him a bit of an advantage: I know there is a lot of stigma, but I believe if we are willing to talk about it, that’s not always negative…I went to school since last year and I disclosed to most of my teachers,

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and because of that, when I get sick, they actually come to my place, like really close to my place to teach me a class in a coffee shop. And so I got longer time than other students sometimes. (Asian, male)

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Experiences of Service Seeking

The experiences of disclosure discussed by the participants in their general lives had an

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impact on their comfort when seeking health services. Disclosing one’s HIV status to health care professionals was easy for some, as one Latino male described, “I noticed that when I disclose my status they treat me nicer…they give me faster attention.” However, others, especially Aboriginal participants, said, “that’s my own business” or “I have my doctor, my physician, my HIV specialist. That is the only person I feel needs that information.” Much of the decision seemed to have been driven by how they had been treated in the past, with those who had

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negative histories being less willing to openly disclose their status. Regardless of past experiences, all of the participants agreed, as one Asian male stated, “I just want my health care providers to be nonjudgmental.” For the most part the groups agreed that seeking health care in

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HIV-specific clinics was the easiest because those practitioners appeared to understand the impact of disclosure and confidentiality

When you walk in the [HIV clinic] they definitely know your status, we speak the same

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language and you know, you are in a place where you belong. You belong to other people who belong to the same environment like you. And you are never afraid. You just feel

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comfortable where you are…everyone in there is like you, so you are not hiding. (African, male)

While HIV-specific providers were the preference for many participants, visiting such a clinic wasn’t always possible. One participant in the Asian focus group described an experience

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that made her lose hope about accessing care from non-HIV-specific clinics. I have actually been in a restaurant situation where I am listening to the next table. And there are nurses from [the hospital] talking about patients. Naming them, and disclosing. I

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know for a fact that they are supposed to sign this contract or this non-disclosure document. If they can do that in a restaurant, I don’t really have any faith at all in how

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they would actually keep my stuff confidential. (Asian, female) Tensions related to disclosure occupied a central role in the psyche of many of our

participants and, depending on the responses received or the amount of information expected, health service and resource seeking behavior was directly affected. While participants were clear that it was often easier and less stigmatizing to seek care from HIV specific clinics, there were times when it was necessary to go elsewhere, such as in an emergency. Experiences of

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individuals, similar to those related to disclosure, were both good and bad and had an impact on the person’s willingness to seek services there again. I went to the emergency and I was really, really sick. I could hardly breathe and it’s not a

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nurse, it is a doctor. He called on his monitor “HIV patient here.” I almost asked him, “Who is the HIV patient?” Seriously, there were so many people in the room. Yes, people looked at me. I almost said, “It is not me,” but seriously, they knew it was me.

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Immediately someone came and took me. I was so ashamed. I could not even ask because I was really sick, and I was like, “Am I going to fight this?,” but I didn’t. That was the

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second time. The first time it happened was at [another hospital]. (Aboriginal, male) In addition to hospitals, walk-in clinics seemed to be a place our participants were less enthusiastic to visit because of the amount of disclosure that was expected. When you are going to a walk-in clinic, you are going to start from zero. They will even

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ask you when you got tested, they will even ask you, “Did you get it from sex?” or this and that. They will ask me all of those questions, but HIV clinics, no. I mean they know you, they know how to deal with you, they know what is your fear so they will not touch

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that. (African, male)

Other forms of health care outside of specialized HIV clinics were also a problem:

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I do find it difficult to find access to community services. I have walked into clinics [outside of Vancouver] and been refused service. I have walked into dental clinics and was refused service and I got refused application to go to a group for HIV and Hep C. (Aboriginal, female)

Dental clinics, in particular, were perceived as risky environments associated with increased levels of stigma and discrimination because of past occurrences that induced fear in

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some participants. The last time I went, they gave me an appointment, and when I went to the appointment, before I went for examination, [the dentist] asked me [my status] and was like, “If we

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knew that you were like that, then we didn’t have to give you an appointment…We

don’t.... You have to find somewhere else, we don't help HIV people.” And since then, I haven't found a dentist. (African, female)

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Even when participants were able to find a dentist, some felt that there was a sense of “being taken advantage of” resulting in further reluctance to seek needed care.

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I went through a bad experience with a dentist and he screwed up my insurance and made sure that my teeth rotted out of my bloody head. I kept going back to him. So, yes, you know what, I don’t trust the medical world because of situations like that. I mean it’s actually happening … its bullshit that he would take advantage of my insurance, right

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through [my insurance], through my band. (Aboriginal, male) In addition to accessing HIV-specific health care clinics, participants preferred receiving education and resources from organizations that provided services to PLWH. Due to the vast

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amount of information available, these organizations were believed to have the most accurate and up-to-date resources because, as one Aboriginal male noted, it was sometimes difficult to

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“know if it is real or not,” and another added “I don’t like learning wrong information where you are being given something that potentially will kill you” (Aboriginal, male). It was apparent that although the participants were grateful for advances in HIV research

to help them live longer and with greater quality of life, the sentiment in some was that all of this information was overwhelming. The participants typically described a sense of confusion and the inability to keep up:

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I have read so much, and there is so much out there that it is very confusing. It has got to that point where I am just confused. I was actually more within tune with what was going on in the beginning as far as learning about the T-cell count and white cell count, and

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now it’s really confusing. I don’t think it is clear enough for simpletons. (Aboriginal, male)

While some participants tried to deal with the mass of information by learning things on a

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“need-to-know basis,” at times they felt they might have missed something important due to the sheer volume of resources available:

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I would say the information gets lost, and it turns into things like old wives’ tales, you know, and different giveaways to deal with the HIV and that. And like he said, it is always changing. That is what is confusing about it. Even the law changes constantly right up to now. I am just hearing things now that I probably should have heard before

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even though there are all of these pamphlets out now. I just should have [but] it’s confusing. (Aboriginal, female)

For this reason, organizations devoted to PLWH were extremely valuable to the

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participants, especially for those who felt overwhelmed or unable to comprehend all of the new information being produced. These organizations not only provided access to the vast amount of

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information available, they also provided opportunities to meet and talk with other PLWH. The ability to converse with others on topics related to HIV reduced the need to understand all the information at once, as one participant, explained: “I don’t read so much about the literature. I have a lot of conversations with people who have HIV and who are caregivers” (Aboriginal, male). Beyond HIV Stigma and Discrimination

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For our participants, HIV stigma began prior to diagnosis and was based on preconceptions about the types of people who get HIV and the perceived trajectory of the disease. This was further perpetuated and reinforced through experiences of disclosing to health

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care and other service providers. We also found that some participants faced an additional

burden of stigma related to their ethnicities. “Sometimes the stigma and discrimination come about as a result of my being Asian,” while an African female added that, “Stigma is not just for

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HIV, stigma is for everything. It is everywhere, it is Black labels or just labels that people make up. Ugly names, hurtful words.” A Latino male explained, “They discriminate [against] you

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because you’re an immigrant…because of your color, how you look, the gestures, and the body language,” highlighting that an HIV-infected status is not necessarily the only criteria for which one might be stigmatized, resulting in a reluctance to seek services and resources. Those who were Aboriginal seemed to sense the greatest amount of stereotyping and stigma due to their

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heritage.

Most people in their ignorance, I will say ignorance because it is a lack of knowledge, treat most Native people as stupid, uneducated, and lacking fundamental skills of

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interacting with people. They believe we are all drunks or drug addicts. And they cannot get it through their head that not everyone is like that. You know what I mean? There is

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just no distinction. (Aboriginal, female)

Stigma for these individuals was further influenced by where they lived, which seemed to evoke a sense of a triple threat of stigma, no matter where they sought services: I go to any one of the specialty clinics or the hospital. I won’t go there without someone with me or they will not give me service – one, being native, and the other is being HIV positive, and third is my address. Anyone of those three, or all three of those [and you]

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may as well be dead in the water. (Aboriginal, male) While organizations devoted to providing service to PLWH are there to support all their members, they were ironically identified by some participants as a source of stigma, which could

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leave them feeling unwelcome.

[One organization] I found discriminates against heterosexuality. There is a lot, I found, of homophobic attitude over there, but it’s directed at heterosexuals. Because that large

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community is all gay, and the minute a hetero walks into there, they are stigmatized. You are bullied right away. You are refused services in some cases, especially upstairs. The

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drag queens and I say that for lack of a better word, “don’t like anybody from the east side,” for some reason. The East side should have its own [organization]; they prefer that we didn’t go up there. They don’t even like us going up there for the food bank. (Aboriginal, male)

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Another participant added:

Maybe three times a year I will go there. ‘Cause they piss me off every time I go there, and then I don’t come back for like 2 months, but then the need for food demands that I

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have to go someplace. And then I have to show up there and get treated like a piece of shit to get it anyway. (Aboriginal, male)

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Similar to heterosexual participants who felt that they received discrimination and

stigmatizing actions, those who were gay thought that, “just for being gay, you will be discriminated to start….and if you have HIV…you will be discriminated for sure…even worse” (Asian, male). These and similar experiences discussed by the participants make it clear that PLWH who were further marginalized by their ethnicity, socio-economic status, and sexual orientation, experienced stigma that ultimately placed unique barriers to the use of health

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services and resources.

Discussion

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Five FGs conducted with 33 HIV-infected members of Aboriginal and refugee communities in the Greater Vancouver area of British Columbia revealed that many participants had, and continued to experience, stigma and discrimination in different areas of their lives. Many of the participants believed that stigma began at diagnosis and was based on both their

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individual experiences of HIV as well as the ways in which they received the diagnosis. This preconception and development of internalized stigma was then either reinforced or mitigated in

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social networks, the health care system, and HIV-specific community organizations. The stigma and discrimination that many experienced across the life-course of their HIV resulted in many participants being wary of seeking health services and resources and, overall, they expressed fear and reluctance in doing so.

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In general, participants in our study were from countries or communities in which HIV was prevalent. Growing up and witnessing the health and social impacts of the disease first hand evoked preconceived thoughts and beliefs about HIV that, for the most part, were negative. As

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with other studies exploring HIV stigma in Aboriginal and refugee populations (dos Santos, Kruger, Mellors, Wolvaardt, & van der Ryst, 2014; Loutfy et al., 2012), there was a general

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feeling of fear in our study participants about how people would react to their HIV status and how they would be treated. This fear was compounded by an assumption of death and dying, a common occurrence witnessed by our refugee participants, which precipitated their sense of hopelessness, despair, and isolation. These feelings were less apparent in the Aboriginal participants, and more closely aligned with findings from Cain et al. (2013) where a diagnosis of HIV evoked feelings of shock, disbelief, and anger (Cain et al., 2013; Reading, Brennan, &

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Masching, 2013). These differences may have been due to culture, history of colonization, perceived access to health care, and/or religious beliefs (Jaworsky et al., 2015) because the hardships that Aboriginal peoples have faced from society disrupted their culture, challenged

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their ties to community and their trust in Western health care, and shaped how they coped with life situations, including HIV infection. Nonetheless, it was clear for all participants that the

to access helped them adjust to their health status.

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ways in which the diagnosis was disclosed to them and the support systems that they were able

Similar to findings from other groups that have experienced stigma and discrimination

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(Corrigan, Watson, & Barr, 2006; Luoma, Kohlenberg, Hayes, Bunting, & Rye, 2008), our participants spoke of internalized feelings of shame brought on by self-stigma. This caused a variety of effects such as a negative self-image, low self-worth, depression, anxiety, loneliness, and, sometimes, suicidal thoughts. Many expressed that these feelings were most apparent right

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after they received the HIV diagnosis. While these feelings seemed to subside over time, they had the ability to resurface as a participant dealt with further stigma and discrimination throughout their lives.

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Disclosure of HIV status throughout the life-course surfaced as a major factor to our participants’ social and physical well-being, and quality of life. Participants expressed how

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positive reactions to disclosing their status tended to come from individuals who were more knowledgeable and comfortable with HIV, or those with whom they had a long trusting relationship. Similar to findings from Dako-Gyeke, Dako-Gyeke, and Asampong (2015), we found that our participants were comfortable accessing some health care services, but avoided others because of stigmatizing experiences. Because these types of experiences tended to continue well into the care relationship (Kinsler, 2007), it was not surprising to hear that, upon

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diagnosis, our participants immediately sought services from health care professionals who were not judgmental and who did not act negatively toward them (Patel, Furin, Willenberg, Chirouze, & Vernon, 2015). However, outside of their usual circle of care providers, our participants were

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hesitant to meaningfully engage with health care providers in certain settings. Their hesitancy stemmed from past occurrences of discriminatory and stigmatizing behaviors from a variety of sources. This was particularly evident when discussing visits to the emergency room, walk-in

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medical clinics, and dental offices, and, as others have found, lead to psychological distress (Stutterheim et al., 2009). In particular, dental offices were described by some participants as

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places of last resort to seek services because they had been denied care, offered perceived substandard care, and were inappropriately charged for services. Similar findings have been reported by others who found that behaviors experienced in dental settings created insurmountable barriers for PLWH seeking dental care (Turton & Naidoo, 2014).

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It is difficult to understand why some health care providers behave in a negative manner when people reveal their HIV status. We presume, from our participants’ narratives, that lack of knowledge about HIV transmission and management by providers who are not HIV specialists

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may be a reflection of not having updated HIV education since attending medical, nursing, or dental school. In addition, some providers may not have had the opportunity to care for PLWH

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throughout their careers. Whatever the reasons for this apparent lack of education, Nyblade, Stangl, Weiss, and Ashburn (2009) suggested that stigma levels among health care workers could be decreased with HIV education and when information related to stigmatizing behaviors toward PLWH were explained. When providers exhibited stigmatizing behaviors toward PLWH, they were unable to offer quality care, further reducing PLWH willingness to access these services (Nöstlinger, Castro, Platteau, Dias, & Le Gall, 2014; Wong et al., 2004). Our findings

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corroborated others (Ding et al., 2005; Macapagal et al., 2014) who have highlighted the need for better education and sensitivity training in health care settings that serve marginalized populations, including PLWH. There is a need for additional training of health care service

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providers who deal with PLWH. As a means of reducing stigma toward PLWH, it is imperative that sensitivity training be wide-scale and adopted by numerous institutions, starting with students in health professions education programs (Macapagal et al., 2014).

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While stigma and discrimination due to HIV was a deterrent for many of our participants in the quest to attain health care and services, it quickly became apparent that they faced further

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discrimination and stigma due to gender, sexual orientation, ethnicity, socioeconomic status, and where they lived. Some participants, especially those of Aboriginal descent, found that this had a cumulative effect on the forms of HIV stigma they experienced, while others described a more intersectional effect in that each marginalizing trait had its own impact on oppression (Harris &

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Susannah, 2015). For the heterosexual men in our study, this became most apparent when they were seeking services from ASOs and felt further stigmatized by the perceived sexual culture that was prevalent in some of the organizations. Further, we heard that it was only out of

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desperation for food that they would submit to the harassment and discrimination of the organization and its members. Yet ASOs tended to have much more to offer with regard to peer-

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mentorship, advocacy, and education, which this group of participants seemed to be missing out on. We agreed, as others have suggested, that ASOs need to take into consideration all members’ needs and not further limit access to resources (Antoniou, Loutfy, Glazier, & Strike, 2012; Carter et al., 2015; Logie, James, Wangari, & Loutfy, 2011). Overall, our findings suggested key recommendations to help PLWH from Aboriginal and refugee communities to more effectively and comfortably access health services and

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resources: (a) increase cultural sensitivity training in public health and community service organizations in British Columbia serving Aboriginals, refugees, and those of various racial/ethnic backgrounds; (b) conduct continuing education sessions for health care providers

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about HIV transmission, the challenges of living with HIV, and how to empathize with HIVinfected patients, including maintaining confidentiality, so that equitable patient-provider

relationships can be fostered to allow services to be delivered more effectively and to counter the

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negative effects of past experiences; and, finally, (c) develop policies to support the creation of safe spaces in health care and community settings, so all PLWH feel more comfortable accessing

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services.

The implementation of these education and policy recommendations could ensure that a greater number of service providers were knowledgeable about how attitudes, actions, and communications may be perceived as discriminatory and stigmatizing, leading to reduced health

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service and resource use. If incorporated into undergraduate, graduate, and post-graduate education as well as organization training, there is the potential to influence a large number of individuals in positions to provide services to a wide variety of PLWH, ultimately having a

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positive impact on health service and resource utilization. While our research examined a number of concerns that refugees and Aboriginals living

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with HIV often face, we also finished the project with further questions to be examined. We acknowledge that while focus groups are an excellent and often empowering tool for members of these different communities to come together to discuss their experiences, it was also possible that not everyone felt comfortable disclosing personal stories. Therefore, it would be beneficial to conduct new research exploring similar questions using in-depth qualitative interviews with members of these communities. Additionally, we believe that it would be equally important to

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discover if these findings hold true at a population-level. This question could be addressed by targeting ASOs in the Greater Vancouver area that work with refugee and Aboriginal communities. Working with these community organizations, a quantitative survey could be

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distributed to address similar topics.

As was discussed in our recommendations, our findings have the potential for a large impact in a variety of settings. It may be used to educate health care professionals and to guide

marginalized populations.

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Limitations

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cultural sensitivity trainings in a variety of community and health organizations that deal with

Although our aim was to give voice to PLWH in the context of health services and resource utilization, our study had limitations. Aside from the number of participants and the male predominance, the array of enriched experiences cannot be generalized to other groups

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outside of this cultural context because the context in which one is infected, the length of time one has the virus, and the different socioeconomic backgrounds and psychosocial states of mind are important in shaping the life trajectory. Moreover, we did not explore the influence of

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ethnicity, self-stigma per se, education levels, or age on individual views and experiences with stigma. The focus groups conducted in close proximity to urban centers limited extrapolation to

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those living in more rural and remote regions of the country. As well, the focus groups may have been intimidating to some participants who may have been embarrassed or uncomfortable about sharing their stories. Future studies exploring a similar research question may benefit from the use of personal interviews to minimize this potential limitation. We also acknowledge that, because we did not observe any of the participants’ experiences in seeking health services and/or resources, the reported stigma could have been a misinterpretation of the given situation or

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encounter, albeit significant to the participants. Conclusions PLWH from Aboriginal and refugee communities continue to experience

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disproportionate rates of stigma and discrimination. Fear remains a prime obstacle influencing these groups’ abilities and willingness to access care in some service settings. As our participants reported, stigma began as an internal struggle and was perpetuated by negative experiences; the

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way a diagnosis was delivered and reactions to the diagnosis had a direct impact on the sense of self and identity. Race, ethnicity, sexual orientation, and health status often intersected and

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became important contributors to stigma for PLWH. For many of our participants, HIV stigma was further compounded by other identity markers such as skin color or place of residence. Finally, provider opinions, behaviors, and lack of knowledge influenced willingness to engage or re-engage in health care settings, with unprofessional and inappropriate language causing a

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decrease in service utilization and resource seeking.

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Turton, M., & Naidoo, S. (2014). Stigma and disclosure as barriers to regular dental care for people living with HIV/AIDS in Kwazulu-Natal and Western Cape, South Africa. Ethnicity and Inequalities in Health and Social Care, 7(1), 49-59.

Wong, M.D., Cunningham, W.E., Shapiro, M.F., Andersen, R.M., Cleary, P.D., Duan, N., ... Wenger, N.S. (2004). Disparities in HIV treatment and physician attitudes about delaying

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protease inhibitors for nonadherent patients. Journal of General Internal Medicine, 19(4), 366-374. doi:10.1111/j.1525-1497.2004.30429.x

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Behaviour 16(3), 736-740. doi:10.1007/s10461-011-0018-8

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Young, S.D. & Zhu, Y. (2012). Behavioural evidence of HIV testing stigma. AIDS and

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Key Considerations •

More emphasis needs to be placed on informing health care professionals, particularly those who may not routinely provide care or services to HIV-infected persons, about how attitudes,

a reluctance for PLWH to seek the care and services they need. •

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actions, and communications may be perceived as discriminatory and stigmatizing, leading to

Community organizations providing services to PLWH need to be aware of and make efforts

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to be inclusive of all members/clients and provide a safe environment in which they can seek services.

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Undergraduate and graduate curricula need to ensure that up-to-date information on the biopsychosocial impact of HIV infection is taught in order to produce a well-informed professional health care workforce that can help, and not hinder, PLWH obtain the services

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and resources they require.

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