Stigmatization and discrimination are common consequences following disclosure of HIV serostatus; such factors are especially problematic in rural communities where “everyone knows everyone”. In this case study, researchers conducting ethnographic field studies in remote areas of Brazil decided to impersonate friends or relatives of research participants living with HIV as a means to protect participants from inadvertent disclosure of their serostatus to fellow community members. These acts of “wilful deception” raise issues about honesty and integrity in research, and how to balance issues of confidentiality with communicating research findings to communities and the broader public

Guimaraes, Patricia Neves

Hajizadeh, Mohammad

Hongoh, Valerie

Sia, Drissa

Étude de cas / Case studyLa stigmatisation et la discrimination sont des conséquences fréquentes après la divulgation de statuts séropositifs; ces facteurs sont particulièrement problématiques dans les communautés rurales où « tout le monde connaît tout le monde ». Dans cette étude de cas, les chercheurs, qui mènent des études ethnographiques sur le terrain dans les zones reculées du Brésil, ont décidé de se faire passer pour des amis ou des parents des sujets de recherche vivant avec le VIH afin de protéger les sujets de la divulgation accidentelle de leur statut sérologique aux membres de leur communauté. Ces actes de « tromperie délibérée » soulèvent des questions sur l'honnêteté et l'intégrité dans la recherche et la façon d'équilibrer les enjeux de confidentialité dans la communication des résultats de recherche aux communautés et au grand public.Stigmatization and discrimination are common consequences following disclosure of HIV serostatus; such factors are especially problematic in rural communities where “everyone knows everyone”. In this case study, researchers conducting ethnographic field studies in remote areas of Brazil decided to impersonate friends or relatives of research participants living with HIV as a means to protect participants from inadvertent disclosure of their serostatus to fellow community members. These acts of “wilful deception” raise issues about honesty and integrity in research, and how to balance issues of confidentiality with communicating research findings to communities and the broader public

Université de Montréal

Disclosure of HIV status and stigma in rural communities in Brazil: A conundrum for researchers

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PN Guimaraes, V Hongoh, M Hajizadeh, D Sia BioéthiqueOnline 2013, 2/13(http://bioethiqueonline.ca/2/13) Disclosure of HIV status and stigma in rural communities in Brazil: A conundrum for researchersÉTUDE DE CAS / CASE STUDYPatricia Neves Guimaraes1,2, Valerie Hongoh3, Mohammad Hajizadeh4, Drissa Sia4,5 Reçu/Received: 1 May 2013 Publié/Published: 30 Jul 2013Éditeurs/Editors: Jason Behrmann & Marleen Eijkholt© 2013 PN Guimaraes, V Hongoh, M Hajizadeh, D Sia, Creative Commons Attribution 3.0 Unported LicenseRésumé SummaryLa  stigmatisation  et  la  discrimination  sont  des conséquences fréquentes après la  divulgation  de statuts séropositifs;  ces  facteurs  sont  particulièrement problématiques dans les communautés rurales où « tout le monde connaît tout le monde ». Dans cette étude de cas, les chercheurs,  qui  mènent  des  études  ethnographiques sur le terrain dans les zones reculées du Brésil, ont décidé de se faire passer pour des amis ou des parents des sujets de recherche vivant avec le VIH afin de protéger les sujets de la divulgation accidentelle de leur statut sérologique aux membres de leur communauté. Ces actes de « tromperie délibérée »  soulèvent  des  questions  sur  l'honnêteté  et l'intégrité  dans  la  recherche  et  la  façon  d'équilibrer  les enjeux  de  confidentialité  dans  la  communication  des résultats  de  recherche  aux  communautés  et  au  grand public.Stigmatization  and  discrimination  are  common consequences following disclosure of HIV serostatus; such factors  are  especially  problematic  in  rural  communities where  “everyone  knows  everyone”.  In  this  case  study, researchers  conducting  ethnographic  field  studies  in remote areas of  Brazil  decided to impersonate friends or relatives of research participants living with HIV as a means to protect participants from inadvertent disclosure of their serostatus  to  fellow community  members.  These acts  of “wilful deception” raise issues about honesty and integrity in research, and how to balance issues of confidentiality with communicating research findings to communities and the broader public.Mots clés KeywordsVIH / SIDA, la stigmatisation, la communauté rurale, l'éthique, l'usurpation d'identité, la confidentialité, l'anonymat des sujets de recherche, la tromperieHIV/AIDS, stigma, rural community, ethics, impersonation, confidentiality, anonymity of research participants, deceptionAffiliations des auteurs / Author Affiliations1 Douglas Mental Health University Institute, McGill University, Montréal, Canada2 Department of Mental and Public Health, State University of Montes Claros, Montes Claros-MG, Brazil3  Groupe de Recherche en Épidémiologie des Zoonoses et Santé Publique (GREZOSP), Université de Montréal, Saint- Hyacinthe, Canada4 Institute for Health and Social Policy, McGill University, Montréal, Canada5 Centre de recherche du Centre hospitalier de l’Université de Montréal, Université de Montréal, Montréal, CanadaCorrespondance / CorrespondencePatricia Neves Guimaraes, patricianguimaraes@gmail.comRemerciements AcknowledgementsLes  auteurs  tiennent  à  remercier  Jason  Behrmann, Marleen  Eijkholt  et  les  stagiaires  du  Programme interuniversitaire  de  formation  en  recherche  en  santé mondiale (Santé-Cap)  pour  leur  rétroaction  constructive pour cette étude de cas. PNG, VH, MH et DS sont financés par le Programme stratégique de formation en recherche en  santé  mondiale,  un  partenariat  entre  les  Instituts  de recherche en santé du Canada (IRSC) et  le  Réseau de recherche en santé des populations du Québec (RRSPQ).The authors would like to thank Jason Behrmann, Marleen Eijkholt  and  the  trainees  of  the  Global  Health  Research Capacity  Strengthening  Program (GHR-CAPS)  for  their constructive feedback with this case study. PNG, VH, MH and DS are funded by the Strategic Training Program in Global  Health  Research,  a  partnership  of  the  Canadian Institutes  of  Health  Research  (CIHR)  and  the  Québec Population Health Research Network (RRSPQ).Conflit d'intérêts Conflicts of InterestAucun declaré None to declareISSN 1923-2799 1 / 4PN Guimaraes, V Hongoh, M Hajizadeh, D Sia BioéthiqueOnline 2013, 2/13(http://bioethiqueonline.ca/2/13) IntroductionEthical issues concerning stigma and the disclosure of one’s HIV statusThe ability to disclose one’s HIV serostatus has important public health implications with regards to reducing HIV transmission and in intervention planning by local health authorities and policy-makers. For example, the necessity to conceal one’s status due to fears of stigma may motivate people living with HIV/AIDS to avoid seeking health services or compromise their adherence to pharmacological treatments. The decision to disclose one’s HIV/AIDS status is difficult  and involves a complicated decision-making process where an individual must weigh many benefits1 and risks of divulging their serostatus to others. Disclosing one’s serostatus can make people vulnerable to financial hardship (e.g.,  denial  of  employment  opportunities),  scapegoating,  threats  to  personal  well-being,  social exclusion, abuse and disruption in interpersonal and intimate relationships [1-4]. These stigma-related factors have an overarching negative impact on one’s perception of “self” and feelings of self-worth [5]. While likely to raise challenges in most social contexts, disclosure of an individual’s HIV status is especially difficult  in small  rural  villages where there is little privacy and the risks of experiencing discrimination by fellow community members are significant.Investigations focusing on populations with HIV thus need to be sensitive to the personal values and social contexts of people living with HIV/AIDS; one crucial value is that of upholding confidentiality. In addition  to  being  essential  for  building  trust  between  HIV-positive  research  participants  and researchers, confidentiality is also indispensable for protecting study participants from the significant risks of harm noted above.Presentation of the caseThis case study describes one phase of an HIV/AIDS research project conducted in rural areas of  Brazil. The aim of this investigation was to understand the life experiences, beliefs and behaviours of people living with HIV/AIDS in poor rural areas of the Northern area of Minas Gerais State. Ethics approval for the research was obtained from the Research Ethics Board of the Federal University of São Paulo, located in a large urban centre of the country. In order to better understand the home and community  environments,  and  the  life  experiences  of  people  living  with  HIV/AIDS,  ethnographic observations  were  conducted  in  fourteen  rural  communities  (semi-structured  in-depth  interviews conducted in research participants’ homes). At the time of the study, no published research was yet available concerning HIV in rural areas of Brazil.Recruiting participants and obtaining informed consentIn the initial phase of the study, potential research participants were approached at an HIV outpatient clinic  during their  medical  consultations.  Several participants were interviewed on more than one occasion in order to help establish trust with the researcher. Establishing trust was essential since these interviews centred on sensitive and deeply personal topics ranging from representations of HIV/AIDS illness,  HIV/AIDS transmission,  experiences  of  living  with  HIV/AIDS in  a  rural  context, sexual practices, sexual orientation, and relationships within families and communities.In order to conduct further ethnographic observations within small rural communities, several ethical issues needed to be carefully addressed before starting the fieldwork. During this first stage of the study, the researcher and participants discussed issues pertaining to non-disclosure of a participant’s HIV status within their home communities. The interviewees agreed to participate in the ethnographic fieldwork under the condition that the researcher would not reveal their HIV status to other members 1 Benefits include, for example,  avoiding the significant stress from concealing one’s serostatus and treatment for HIV. Specific to rural areas of Brazil, upon disclosure of one’s HIV status, financial support is available from health municipalities to receive treatment. As HIV treatment is only offered in readily accessible urban areas, health municipalities help cover expenses associated with obtaining treatment outside of rural communities (e.g., travel, shelter and food expenses).ISSN 1923-2799 2 / 4PN Guimaraes, V Hongoh, M Hajizadeh, D Sia BioéthiqueOnline 2013, 2/13(http://bioethiqueonline.ca/2/13) of the community, and under the further condition that the researcher not mention anything that might connect the participants to HIV treatments at outpatient clinics. It became evident that procedures regarding how to protect the participants’ confidentiality had to be developed. The resulting decision of the researcher was to use deceit in the form of impersonating friends or distant relatives of research participants in order to conceal a participant’s serostatus.Observations from the fieldBeing small communities – some with fewer than 2000 residents – the arrival of a ‘foreigner’ did not go unnoticed. Residents would often approach the researcher to introduce themselves and ask what the researcher was doing in these isolated areas. In accordance with the agreement made during the process of obtaining consent, the researcher presented herself as a distant relative or friend visiting a fellow member of their community.While many communities were unaware of the HIV status of research participants, in some cases the serostatus of participants was known before the debut of the field study. Several participants shared experiences of stigmatization within their communities following disclosure of their health condition. Indeed,  under  such  circumstances  it  was  common  for  the  researcher  to  witness  stigmatizing behaviour by others. One of the narratives described by a 29-year-old woman revealed how following her use of a public phone, people would immediately clean the phone with alcohol. In several other cases, HIV-positive members of the community were relegated to live in isolated areas outside the family home, often in derelict and substandard buildings with few amenities. One example was that of a female participant exiled to living in a small cabana away from her family; following the disclosure of her HIV status, a living space was built especially for her out of trees and a plastic roof covering. These  examples  illustrate  common  discriminatory  practices  and  social  rejection  experienced  by people living with HIV/AIDS. This unfortunate reality also demonstrates why it is critical to develop strategies to carefully – and discreetly – manage issues related to HIV/AIDS stigma when conducting research in the field, especially when investigations are conducted in rural communities.Questions to consider1. Other than employing deceptive tactics, how can the wish of  HIV-positive people for  non-disclosure  of  their  serostatus  be  protected  during  research  in  rural  communities  where discriminatory practices toward people living with HIV are known to occur? 2. Is it ethical to employ cover stories and impersonations within these communities as a strategy to protect research participants with stigmatizing health conditions? What challenges does this situation  raise  in  terms  of  the  ethical  imperative  to  uphold  transparency,  integrity  and truthfulness when conducting research?3. Should the cover story procedure (or any other forms of  deception used when conducting research) be described in the methodology section of research publications (e.g., explained as a mechanism used when conducting ethnographic observations within rural communities)? 4. How  can  the  results  and  information  obtained  by  the  researcher  be  used  to  benefit  the communities where the research was conducted? Describe more and less ethical means to present  research findings  to  these  communities  in  terms  of  the  non-disclosure  wishes  of people living with HIV.5. Is it  sufficient to obtain research ethics approval from a research ethics board located in a major urban area (e.g.,  São Paulo) where they might not be able to fully assess the local cultural  aspects of  isolated rural  communities,  or should ethics approval be sought  from a research ethics board in the region where the research will be conducted? 6. Is it  ever  justified for a community  to know someone’s HIV/AIDS status regardless of  the individual’s  desire  to  keep  their  health  condition  confidential?  Whose  needs  are  more important  to  protect  from a public  health  perspective:  people  living  with  HIV/AIDS,  or  the community at large?ISSN 1923-2799 3 / 4PN Guimaraes, V Hongoh, M Hajizadeh, D Sia BioéthiqueOnline 2013, 2/13(http://bioethiqueonline.ca/2/13) 7. A primary focus of  this  case study centres on issues of  obtaining consent  from individual  research participants. A growing body of scholarship in public health ethics (see: [6]) questions whether  individual consent  is  sufficient  in  certain  contexts,  namely  in  situations  where  a research  project  implicates  vulnerable  population  groups,  such  as  poor,  isolated  rural communities  in  the  developing  world.  In  such  circumstances,  some  argue  [6]  that  it  is necessary  to  obtain  community  consent,  for  example  from community  leaders,  to  conduct research  implicating  such  populations.  How  might  the  need  for  community  consent compromise the research activities described herein and what would be an ideal strategy to obtain this consent?List of References1. Black BP, Miles MS: Calculating the Risks and Benefits  of Disclosure in  African American Women  Who  Have  HIV.  Journal  of  Obstetric,  Gynecologic,  &  Neonatal  Nursing 2002, 31(6):688-697.2. Gielen AC, O'Campo P, Faden RR, Eke A: Women's Disclosure of HIV Status: Experiences of Mistreatment and Violence in an Urban Setting. Women & Health 1997, 25(3):19-31.3. Lam PK, Naar-King S, Wright K: Social Support and Disclosure as Predictors of Mental Health in HIV-Positive Youth. AIDS Patient Care and STDs 2007, 21(1):20-29.4. Medley  A,  Garcia-Moreno  C,  McGill  S,  Maman  S:  Rates,  barriers  and  outcomes  of  HIV serostatus disclosure among women in developing countries: implications for prevention of mother-to-child  transmission  programmes.  Bulletin  of  the World  Health  Organization 2004, (82):299-307.5. Mayfield Arnold E,  Rice E,  Flannery D, Rotheram-Borus MJ: HIV disclosure among adults living with HIV. AIDS Care 2008, 20(1):80-92.6. Weijer & EJ Emanuel.  Protecting   Communities  in  Biomedical  research .  Science 2000, 289: 1142-1144Further Readings1. Greene K, Delega VJ, Yep GA, Petronio S:  Privacy and disclosure of HIV in interpersonal  relationships: a sourcebook for researchers and practitioners. Mahwah, NJ: Lawrence Erlbaum Associates, Inc.; 2003.2. Mahajan AP, Sayles JN, Patel VA, Remien RH., Ortiz D, Szekeres G, Coates TJ: Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 2008, 22 (Suppl 2): S67–S79.ISSN 1923-2799 4 / 4

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Disclosure of HIV status and stigma in rural communities in Brazil: A conundrum for researchers

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