It has only been a few years that the free provision of antiretroviral medicines (ARVs) poses the opportunity for many people living with HIV/AIDS in sub-Saharan Africa to receive treatment for their infection and to resume their everyday lives. In 2004 the Tanzanian Government established its National Care and Treatment Program which by August 2009 provided the life-prolonging drugs to approximately 235.000 patients.
The multiple hopes associated with ARV provision are yet overshadowed by several adverse factors: Restrictions with regard to treatment access and the provision of intensive medical care and long-time control of individual patients make antiretroviral therapy (ART) a medically and logistically challenging issue. The danger of resistant virus strains developing from insufficient patient adherence to the strict treatment regime highlights the necessity for social science research to go beyond the clinical setting and to focus on the intimate linkage of the drugs with the lives of individual patients, their families and their wider social surrounding.
Selection of ARV compounds
The study assumes that the experiences and actions of ART users and providers are significantly shaped by global political and economic processes, as for example structural adjustment policies, pharmaceutical pricing politics, transnational funding structures and internationally standardized treatment guidelines.
On another level, individual and collective ways of dealing with ARVs need to be understood with regard to specific contexts of kinship based networks of mutual support, widely applied traditional healing practices and a diverse religious landscape that inform the decisions and actions of local actors and simultaneously provide them with space for the renegotiation of existing concepts of illness and healing and for actively dealing with their infection.
Third, the research regards hospitals and treatment centers as potentially conflictive locales where standardized international guidelines and public health concepts are to be translated into well informed patients whose biomedically sound and self-responsible conduct reflects their comprehension and appreciation of knowledge that is transferred by doctors, nurses and voluntary peer educators.
Finally, a close examination of the social relations in which the construction of knowledge about the medicines and the ways of dealing with them are embedded, is considered substantial in order to assess their effectiveness both in medical terms and as stimulators of social change.
Patient files at a Care and Treatment Center
The project investigates the implementation and the effects of antiretroviral treatment programs in urban Tanga, a large city on the shore of the Tanzanian Swahili Coast. It seeks to explore the conditions of establishing access to ARVs and the continuum of living and dealing with the drugs from an individual level to the patients’ social and familial environments and the production of a public discourse about HIV/AIDS. In particular, the project pursues the following goals:
“Exit desk”: After receiving the first supply of ARVs patients are told their next appointment date
During the one-year field work in urban Tanga (2008-2009) a variety of ethnographic and qualitative research methods were applied:
After obtaining basic quantitative information about the medical facilities involved in ARV provision, the multiple challenges of establishing access to ART were traced by semi-structured interviews with medical professionals as well as participant observation at several treatment centers. Information about the funding structures and rationales of different treatment facilities was collected.
Semi-structured interviews with patients and the participation in support group meetings provided insight into individual experiences of the “biographical rupture” caused by ARVs and the everyday life with the drugs. The respondents were differentiated by gender, age, religious affiliation and social background. Gender-specific differences regarding the perception of getting access to and living with ARVs were explored in focus group discussions.
The social relations within families and the wider social environment of the patients were examined through semi-structured interviews as well as participant observation in individual patients’ homes.
Finally, the analysis of messages and reports of print media, TV and radio broadcasts concerning the life with ARVs was complemented through informal interviews with authors of awareness campaigns and policy makers.
Nurse registering blood specimens
Confidentiality and anonymity as well as the absolute transparency of the study towards the participants were core concerns of the study. The names of respondents were changed and any descriptive details that would allow for revealing their identity were excluded from oral and written reports.
Informed consent of the participants was obtained by using a written research statement in English and Kiswahili. Participants were thus informed about the study protocol and the objectives of the research as well as the intended further use of data before participating in an interview or discussion. The participants could withdraw from the study at any stage of data collection and analysis.
“Dispensary” of traditional herbal medicines