Refashioning Stigma: Experiencing and Managing HIV/AIDS in the Biomedical Era Yordanos M. Tiruneh Northwestern University

Background Multidimensional stigmatization of HIV/AIDS remains a salient social and psychological issue across sociocultural contexts. The availability of ART generates a significant hope to reconstruct HIV as a chronic manageable condition and reduce the stigma that has been associated with HIV. A few studies afford provisional support for the link between stigma reduction and ART provision (Castro and Farmer 2005; Wolfe, Weiser et al. 2008), while others challenge the argument that availability of treatment reduces stigma (Dlamini, Wantland et al. 2009; Makoae, Portillo et al. 2009; Roura, Urassa et al ; Campbell, Skovdal et al. 2011).Castro and Farmer 2005Wolfe, Weiser et al. 2008Dlamini, Wantland et al. 2009Makoae, Portillo et al. 2009Roura, Urassa et al Campbell, Skovdal et al. 2011

Research Questions How has the introduction of ART alter stigma experiences and management of PLWHA? How do PLWHA in Ethiopia navigate stigma experiences in this biomedicalized era? This qualitative study examines the dynamic relationship between HIV treatment and stigma, three years after free provision of ART in an urban setting in Ethiopia.

Methods Ethnographic study – in an urban HIV clinic Six months of fieldwork – In-depth interviews – Ethnographic observation Participants: Adults who had been on ART for at least six months. Stigma was examined from the sufferers’ perspectives using their lived experiences to anchor the analysis Grounded theory and phenomenology were used (at different phases) to analyze the data.

Study Participants Socio-demographic Female- 59% Mean age - 38 years Average number of months on treatment – 32 Majority (37%) were single Only (14%) had college education (63%) were orthodox Christians. More than two thirds (70%) had no income or had an income of less than $50 a month

Lived Experiences of PLWHA in the Era of ART  Concealing differences-ticket to normalcy » Improving a biophysical trajectory » Minimizing the visibility of physical imperfections that serve as stigma trigger » Restoring functional daily living/competence » Helping regain social and economic liberation

 Creating support -ticket to social capital – Creating substitute social networks – Developing a sense of belongingness and collective identity borne of HIV-tainted blood The medication has earned me a lot of friends. People who come from different Kifle Ketemas [the lowest administrative unit, equivalent to a county] meet here. A person who takes ART and a prisoner are the same. We take care of each other... like prisoners take care of each other. The same is true with people who take the medication.... We help each other.

 Pills as Stigma Trigger Generates new stigma triggers at various levels of regimen management by publicizing discreditable attribute related to HIV Intensifies internalized stigma Internalized fear of disclosure Internalized negative self-concept, inferiority and dependence When I think of the two tablets that keep me alive, I hate myself and I feel that I am dead. Sometimes I get furious to see myself like a walking corpse, and other times I see myself as a doll that functions with a battery. I would say, without these batteries [pills], I am nothing.

Context of Stigma Experiences Location and configuration of healthcare facilities This has been repeatedly said; the location of the HIV clinic is very embarrassing. One time, I met a friend around the waiting area, and while I was talking with him, it was my turn and my name was called. He then knew about my status. (Male, 37) I mean, you see everybody who is attending this clinic; it is kind of out in the open and people obviously know what this clinic is for. I do not believe the clinic is doing a great job in serving us confidentially given the location. (Female, 29)

Culture and exigencies of the clinic – Long wait times – Certain procedures and distinct paper work The [HIV-positive patient’s] chart has a unique cover that makes it different from other patients’ charts. That difference by itself makes you liable to peoples’ gossip. I often see people hiding their charts under their shirts or putting them in a plastic bag when they take them to the pharmacy. I sometimes offer to take other peoples’ charts along with mine when I see their discomfort. (Female, 25)

Handling of pills – Transporting medication, storing medication at home, and discarding empty pill bottles People recognize the medication. It is better these days. Earlier it even had a logo on it, you know, the red ribbon, the HIV logo. It [ART] can be identified. Now the bottle doesn’t have such a mark, but people have already associated that particular bottle with HIV medicine, even if it is not... [Laughter]. (Male, 29) – Actual pill taking- issues related to number of pills per dose/day and packaging. – Physical changes accompanying treatment (both positive and negative)

Management of HIV stigma Concealment work-Impression and information management Lying, silence, hiding, or passing as normal Social withdrawal Self exclusion I used to buy the medicine for fear that people might see me here at the HIV clinic. Then, I had too many expenses, and I had no more money. Afterwards, thanks to my sister’s advice and encouragement, I started taking the medicine here at the ART Clinic.... But when I come to this clinic, my eyes vigilantly look for people I know. I come covering myself. I don’t want others to see me here and know about my status. I don’t want my status to be known. No way! (

Irrespective of which stigma management strategies are used, there are times when stigma triggers are unavoidable In such instances, PLWHA follow one of two schemas a. compromise their prescribed medication practices b. decide to fight back against stigma triggers through public HIV teaching and activism passively, by willfully disregarding stigma concerns

Conclusion ART reduces certain types of stigma while intensifying others and also creating new stigma triggers. External stigma is significantly reduced while internalized stigma is intensified by ART and often found to be more disruptive of illness management and treatment success for PLWHA. Thus, ART refashions rather than wholly diffuse the stigma associated with HIV/AIDS. This refashioned nature of stigma requires that our understanding and intervention be informed by the recognition of patterns of change in peoples’ perceptions, experiences, and management of the illness.

Recommendations Stigma Triggers at health care facilitiesPossible Interventions Concerns associated with location and configuration of the clinic Due attention to privacy; proper waiting room Concerns related to culture and exigencies of the clinic Avoiding identifying paperwork and procedure; simplification of service delivery; decreasing waiting times Concerns associated with handling of pills Simplification of packaging for easy transportation, storage, and disposal; avoiding specific packaging Concerns associated with actual pill taking (number of pills/dose/day) Dose simplification Concerns about physical changes following treatment Counseling and patient education of side effects Concerns about disclosureEducation and counseling

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