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“They look at you like you’re contaminated”: how HIV-related stigma shapes access to care for incarcerated women living with HIV in a Canadian setting

Abstract

Objectives

Given the gender disparities in HIV outcomes for women living with HIV (WLWH) who experience incarceration, and the impact of HIV-related stigma on HIV care, this qualitative study investigated how HIV-related stigma within prison settings shapes HIV care for WLWH.

Methods

Drawing from SHAWNA (Sexual Health and HIV/AIDS: Women’s Longitudinal Needs Assessment), a community-based research project with cisgender and transgender WLWH in Metro Vancouver, peer and community interviewers conducted 19 qualitative interviews (May 2017–February 2018) with recently incarcerated WLWH focused on factors that shape incarceration trajectories. Drawing on socio-ecological frameworks and using participatory analysis, this analysis sought to characterize how HIV-related stigma shapes experiences and access to care for incarcerated WLWH.

Results

Participants’ responses focused predominately on experiences in provincial correctional facilities and the ways through which HIV-related stigma within correctional settings was linked to access to HIV care. Experiences of HIV-related stigma within prisons led to isolation and discrimination for WLWH which was reinforced through institutional processes, compromised privacy, and uncertainty about confidentiality. Experiences of HIV-related stigma informed decisions for some participants to withhold HIV status from healthcare staff, compromising access to HIV treatment during incarceration.

Conclusion

Amid ongoing efforts to improve healthcare delivery within Canadian correctional facilities, these findings have important implications for the provision of HIV care for incarcerated WLWH. Culturally safe, trauma-informed programming focused on reducing HIV-related stigma, improved communication regarding medical privacy, and interventions to change processes that compromise privacy is critical to improve healthcare access in correctional facilities.

Résumé

Objectifs

Étant donné les disparités entre les sexes constatées dans les résultats cliniques des femmes vivant avec le VIH (FVAV) qui sont incarcérées et les effets de la stigmatisation du VIH dans les soins du VIH, notre étude qualitative a cherché à déterminer l’influence de la stigmatisation du VIH dans les lieux de détention sur les soins du VIH donnés aux FVAV.

Méthode

En partant de l’étude SHAWNA (Sexual Health and HIV/AIDS: Longitudinal Women’s Needs Assessment), un projet de recherche de proximité mené auprès de FVAV cisgenres et transgenres dans le District régional du Grand Vancouver, des pairs et des enquêteurs communautaires ont mené 19 entretiens qualitatifs (mai 2017 à février 2018) avec des FVAV récemment incarcérées; ces entretiens ont porté sur les facteurs ayant influencé les trajectoires d’incarcération. Notre analyse, qui fait appel à des cadres socioécologiques et à l’analyse participative, a cherché à caractériser l’influence de la stigmatisation du VIH sur les expériences et sur l’accès aux soins des FVAV incarcérées.

Résultats

Les réponses des participantes ont principalement porté sur leurs expériences dans les établissements de correction provinciaux et sur les liens entre la stigmatisation du VIH en milieu carcéral et l’accès aux soins du VIH. Les expériences de stigmatisation du VIH dans les lieux de détention ont mené à l’isolement des FVAV et à la discrimination envers elles, deux facteurs qui ont été renforcés par les processus institutionnels, les atteintes à la vie privée et l’incertitude quant à la protection des renseignements personnels. Leurs expériences de stigmatisation du VIH ont motivé la décision de certaines participantes de ne pas dévoiler leur état sérologique aux personnels de soins de santé, ce qui a compromis leur accès aux traitements du VIH durant leur incarcération.

Conclusion

Avec les efforts en cours pour améliorer la prestation des soins de santé dans les établissements de correction canadiens, ces constatations ont d’importantes conséquences pour la prestation de soins du VIH aux FVAV incarcérées. Pour améliorer l’accès aux soins de santé dans les établissements de correction, il est essentiel d’avoir des programmes culturellement sûrs et sensibles aux traumatismes pour réduire la stigmatisation du VIH et améliorer les communications sur la protection des renseignements médicaux, ainsi que des interventions pour modifier les processus qui portent atteinte à la vie privée.

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Notes

  1. 1.

    The term Two-Spirit reflects the long history of sexual and gender diversity and understanding of gender roles within Indigenous cultures and is a term held by some Indigenous people to reflect their diverse sexual and gender identity, and gender roles.

  2. 2.

    HIV statistics are not recorded for people incarcerated at the provincial level; however, the population is similar for incarcerated women at both types of facilities.

  3. 3.

    Although inclusion criteria for the SHAWNA cohort focused on cis- and transgender women, we recognize that gender identity can be fluid over time.

  4. 4.

    Within recent years, HIV physicians and nurses from Oak Tree Clinic at BC Women’s Hospital have started doing HIV outreach to the women’s provincial correctional facility so that women do not have to go on medical escort to access HIV care—a process which can be humiliating and distressing, but also infringes on medical privacy as correctional officers provide escorts and would therefore be privy to certain information (i.e., if someone was being escorted to an HIV clinic). This is not necessarily the case at other provincial facilities.

  5. 5.

    Although disclosure of HIV status and access to ART may differ within various provincial and federal institutions in Canada, participants in our study who were incarcerated at the provincial level in BC described being asked about their HIV status through a questionnaire administered by an intake nurse upon arrival to prison. Prior to October 2017, BC correctional healthcare was contracted out by correctional services to a private provider and healthcare staff relied on WLWH to disclose their HIV status upon intake, unless a woman disclosed her HIV-positive status during a previous incarceration to healthcare staff, or had requested an HIV test during incarceration.

  6. 6.

    For example, as offered by BC Women’s Health Centre to WLWH who are incarcerated at the women’s provincial facility to ensure continuity of care.

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Contributions to knowledge

What does this study add to existing knowledge?

  • This is the first study focused on the lived experiences of accessing HIV care among women during incarceration in Canada.

  • This study elucidates how HIV-related stigma within prison settings shaped access to HIV care among women living with HIV.

  • The findings of this study highlight how HIV-related stigma in correctional facilities can be reinforced through institutional processes, compromised privacy, and uncertainties about the confidentiality of medical information.

What are the key implications for public health interventions, practice, or policy?

  • Within prison settings, there is a critical need for sustained educational efforts (for people who are incarcerated and prison staff) that counteract misinformation regarding HIV transmission and treatment.

  • Policy change should focus on enhancing medical privacy and rights to confidentiality, including an emphasis on clear and ongoing communication for people who are incarcerated regarding the confidentiality of their health information.

  • Institutional processes that undermine medical privacy, such as medication dispensing procedures and medical escorts, should be reviewed.

  • An emphasis on strategies to strengthen and incorporate trauma-informed and culturally safe practice and supports within the carceral system is needed.

Acknowledgements

We would like to thank each participant for sharing their time and expertise, as well as all who contributed to this project, including community partners, the SHAWNA Positive Women’s Advisory Board and Community Advisory Board, and the SHAWNA team members: Tara Axl-Rose, Daniella Barreto, Megan Bobetsis, Barb Borden, Melissa Braschel, Shannon Bundock, Lulu Gurney, Carol He, Arveen Kaur, Desire King, Rayka Kumru, Emma Kuntz, Lauren Martin McCraw, Jenn McDermid, Kate Milligan, Sarah Moreheart, Melanie Lee, Lois Luo, Mika Ohtsuka, Harper Perrin, Faaria Samnani, Ariel Sernick, Brittney Udall, Peter Vann, Akanée Yamaki, Yinong Zhao, Lisa Zhang. ME also wishes to thank Amin Ghaziani for his guidance and feedback on early versions of this manuscript.

Author contributions

AK, KS, ME, and FR conceptualized this study with input from REM. ME, FR, and AK developed the interview guide with input from REM and NP. FR and AK conducted interviews and data collection. ME coded the interviews with input from AK, BM, and FR. REM, SP, TH, KS, and NP provided expertise throughout the drafting of the manuscript. ME wrote the manuscript with significant input and guidance from AK. All co-authors provided feedback on the initial and final versions of the manuscript. AK and KS obtained the funding for this study.

Availability of data and material

All relevant data are presented within the paper and are fully sufficient to replicate the study findings.

Code availability

N/A.

Funding

This research was supported by the Canadian Institutes of Health Research (CIHR) CBR-151184; PJM - 169708 and FDN-143349. ME is supported through a CIHR Doctoral Award, and AK is supported through a Michael Smith Foundation for Health Research Scholar Award.

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Correspondence to Andrea Krüsi.

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The study was approved by the Providence Healthcare/University of British Columbia Research Ethics Board—H14-01073.

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Erickson, M., Shannon, K., Ranville, F. et al. “They look at you like you’re contaminated”: how HIV-related stigma shapes access to care for incarcerated women living with HIV in a Canadian setting. Can J Public Health (2021). https://doi.org/10.17269/s41997-021-00562-z

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Keywords

  • HIV care
  • Continuum of care
  • Corrections
  • Prisons
  • Stigma
  • Women

Mots-clés

  • Soins du VIH
  • continuité des soins
  • services correctionnels
  • prisons
  • stigmate social
  • femmes