'Between a rock and a hard place': applied anthropology and AIDS research on a commercial farm in Zambia

Fieldwork on a commercial farm in southern Zambia, which was aimed at designing an HIV prevention program for farm workers, gradually exposed the nature of sexual liaisons between young girls, coming to work on the farm from the surrounding villages, and older migrant men workers. Before completing fieldwork, the anthropologist voiced her concern about the implications of these liaisons for the spread of STDs and HIV with the local rural community, farm management and farm workers. The immediate outcome of her intercessions was the decision by management to sack under-age workers. Although some members of the local community, including local research assistants, and some managers and workers welcomed this decision, others were angered by it. Caught between interest groups and conflicting guidelines, the anthropologist, it is argued, was in a no-win situation, ‘between a rock and a hard place’. The paper proposes that the application of anthropological ethics in AIDS research needs some reevaluation

Men, women and the trouble with condoms: problems associated with condom use by migrant workers in rural Zambia

Understanding cultural attitudes to condoms is of the utmost importance in promoting their use as a means of protection against HIV transmission. This article examines condom use in relation to what people see as the purpose of sex, what good sex entails and how this relates to ideas of being a proper woman or man. It seems that the underlying and pervasive ideal is that sex is essentially a procreative act, since an emphasis on male potency and male and female fertility often overrides anxieties about contracting HIV and other sexually transmitted diseases. Hence condom use is usually only negotiated within some short-term relationships and then not consistently. Whilst both men and women have negative attitudes to condoms, women because of their economic and ideological dependence on men are in a much weaker position to negotiate condom use

Zambian Disability Policy Stakeholder Perspectives on the Ways that International Initiatives Influence Domestic Disability Policies

Disability has attracted attention in international human rights and development circles and Zambian domestic policy. The purpose of this research was to explore the perceptions of Zambian disability policy stakeholders about the ways that two international initiatives, namely the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the Sustainable Development Goals (SDGs), are being reflected in domestic policy. We collected data through semi-structured interviews with 22 policy stakeholders (12 disability advocates and 10 policymakers) and analysed these data using thematic analysis. The UNCRPD was perceived to be progressively integrated into Zambian disability policy although insufficiently implemented while the SDGs have provided rhetorical influence

Zambian Disability Policy Stakeholder Perspectives on the Ways that International Initiatives Influence Domestic Disability Policies

Disability has attracted attention in international human rights and development circles and Zambian domestic policy. The purpose of this research was to explore the perceptions of Zambian disability policy stakeholders about the ways that two international initiatives, namely the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the Sustainable Development Goals (SDGs), are being reflected in domestic policy. We collected data through semi-structured interviews with 22 policy stakeholders (12 disability advocates and 10 policymakers) and analysed these data using thematic analysis. The UNCRPD was perceived to be progressively integrated into Zambian disability policy although insufficiently implemented while the SDGs have provided rhetorical influence

'Are We Not Human?' Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services.

BACKGROUND: The advent of anti-retroviral therapy (ART) in Southern Africa holds the promise of shifting the experience of HIV toward that of a manageable chronic condition. However, this potential can only be realized when persons living with HIV are able to access services without barriers, which can include stigma. Our qualitative study explored experiences of persons living with disabilities (PWD) in Lusaka, Zambia who became HIV-positive (PWD/HIV+). METHODS AND FINDINGS: We conducted interviews with 32 participants (21 PWD/HIV+ and 11 key informants working in the fields of HIV and/or disability). Inductive thematic analysis of interview transcripts was informed by narrative theory. Participants' accounts highlighted the central role of stigma experienced by PWD/HIV+, with stigmatizing attitudes closely linked to prevailing societal assumptions that PWD are asexual. Seeking diagnostic and treatment services for HIV was perceived as evidence of PWD being sexually active. Participants recounted that for PWD/HIV+, stigma was enacted in a variety of settings, including the queue for health services, their interactions with healthcare providers, and within their communities. Stigmatizing accounts told about PWD/HIV+ were described as having important consequences. Not only did participants recount stories of internalized stigma (with its damaging effects on self-perception), but also that negative experiences resulted in some PWD preferring to "die quietly at home" rather than being subjected to the stigmatizing gaze of others when attempting to access life-preserving ART. Participants recounted how experiences of stigma also affected their willingness to continue ART, their willingness to disclose their HIV status to others, as well as their social relations. However, participants also offered counter-stories, actively resisting stigmatizing accounts and portraying themselves as resilient and resourceful social actors. CONCLUSIONS: The study highlights a significant barrier to healthcare experienced by PWD/HIV+, with important implications for the future design and equitable delivery of HIV services in Zambia. Stigma importantly affects the abilities of PWD/HIV+ to manage their health conditions

Disentangling HIV and AIDS Stigma in Ethiopia,Tanzania and Zambia

The International Center for Research on Women (ICRW), in partnership with organizations in Ethiopia, Tanzania, and Zambia, led a study of HIV and AIDS-related stigma and discrimination in these three countries. This project, conducted from April 2001 to September 2003, unraveled the complexities around stigma by investigating the causes, manifestations and consequences of HIV and AIDS-related stigma and discrimination in sub-Saharan Africa. It then uses this analysis to suggest program interventions. Structured text analysis of 730 qualitative transcripts (650 interviews and 80 focus group discussions) and quantitative analysis of 400 survey respondents from rural and urban areas in these countries revealed the following main insights about the causes, context, experience and consequences of stigma: The main causes of stigma relate to incomplete knowledge, fears of death and disease, sexual norms and a lack of recognition of stigma. Insufficient and inaccurate knowledge combines with fears of death and disease to perpetuate beliefs in casual transmission and, thereby, avoidance of those with HIV. The knowledge that HIV can be transmitted sexually combines with an association of HIV with socially “improper” sex, such that people with HIV are stigmatized for their perceived immoral behavior. Finally, people often do not recognize that their words or actions are stigmatizing. Socio-economic status, age and gender all influence the experience of stigma. The poor are blamed less for their infection than the rich, yet they face greater stigma because they have fewer resources to hide an HIV-positive status. Youth are blamed in all three countries for spreading HIV through what is perceived as their highly risky sexual behavior. While both men and women are stigmatized for breaking sexual norms, gender-based power results in women being blamed more easily. At the same time, the consequences of HIV infection, disclosure, stigma and the burden of care are higher for women than for men. People living with HIV and AIDS face physical and social isolation from family, friends, and community; gossip, name-calling and voyeurism; and a loss of rights, decision-making power and access to resources and livelihoods. People with HIV internalize these experiences and consequently feel guilty, ashamed and inferior. They may, as a result, isolate themselves and lose hope. Those associated with people with HIV and AIDS, especially family members, friends and caregivers, face many of these same experiences in the form of secondary stigma. People living with HIV and AIDS and their families develop various strategies to cope with stigma. Decisions around disclosure depend on whether or not disclosing would help to cope (through care) or make the situation worse (through added stigma). Some cope by participating in networks of people with HIV and actively working in the field of HIV or by confronting stigma in their communities. Others look for alternative explanations for HIV besides sexual transmission and seek comfort, often turning to religion to do so. Stigma impedes various programmatic efforts. Testing, disclosure, prevention and care and support for people with HIV are advocated, but are impeded by stigma. Testing and disclosure are recognized as difficult because of stigma, and prevention is hampered because preventive methods such as condom use or discussing safe sex are considered indications of HIV infection or immoral behaviors and are thus stigmatized. Available care and support are accompanied by judgmental attitudes and isolating behavior, which can result in people with HIV delaying care until absolutely necessary. There are also many positive aspects of the way people deal with HIV and stigma. People express good intentions to not stigmatize those with HIV. Many recognize that their limited knowledge has a role in perpetuating stigma and are keen to learn more. Families, religious organizations and communities provide care, empathy and support for people with HIV and AIDS. Finally, people with HIV themselves overcome the stigma they face to challenge stigmatizing social norms. Our study points to five critical elements that programs aiming to tackle stigma need to address: Create greater recognition of stigma and discrimination. Foster in-depth, applied knowledge about all aspects of HIV and AIDS through a participatory and interactive process. Provide safe spaces to discuss the values and beliefs about sex, morality and death that underlie stigma. Find common language to talk about stigma. Ensure a central, contextually-appropriate and ethically-responsible role for people with HIV and AIDS While all individuals and groups have a role in reducing stigma, policymakers and programmers can start with certain key groups that our study suggests are a priority: Families caring for people living with HIV and AIDS: programs can help families both to cope with the burden of care and also to recognize and modify their own stigmatizing behavior. NGOs and other community-based organizations: NGOs can train their own staff to recognize and deal with stigma, incorporate ways to reduce stigma in all activities, and critically examine their communication methods and materials. Religious and faith-based organizations: these can be supportive of people living with HIV and AIDS in their role as religious leaders and can incorporate ways to reduce stigma in their community service activitie

Two approaches to longitudinal qualitative analyses in rehabilitation and disability research.

Purpose: Although relatively unknown within the field of rehabilitation, qualitative longitudinal research is ideal for rehabilitation and disability research that aims to understand health-related challenges over time. We describe the strengths and challenges of longitudinal qualitative research using two concrete examples.Materials and methods: Qualitative longitudinal research often involves in-depth interviews of participants on multiple occasions over time. Analytic approaches are complex, summarizing data both cross-sectionally and longitudinally. We present two detailed analytic approaches used in research with people living with HIV in Zambia and Canada.Results: Our experiences provide three recommendations. First, development of the initial analytic coding framework should include both inductive and deductive approaches. Second, given the large quantity of data generated through longitudinal qualitative research, it is important to proactively develop strategies for data analysis and management. Third, as retention of participants is challenging over time, we recommend the use of a consistent interviewer over the duration of the study to promote a trusting relationship.Conclusions: Longitudinal qualitative research has much to offer researchers and can provide clinicians with insights on the challenges of living with chronic and episodic disability. The flexibility in analytic approaches allows for diverse strategies to best address the rehabilitation and disability research questions and allow for insights into living with disability over time

Community narratives about women and HIV risk in 21 high-burden communities in Zambia and South Africa.

Public health researchers repeatedly represent women as a group vulnerable to ill health. This has been particularly true in the field of HIV research, where women are disproportionately affected by HIV in terms of disease burden and the social effects of the epidemic. Although women have been the focus of many prevention and treatment programs, structural barriers to implementation of these targeted programs persist. In this article we explore how high HIV-burden communities in South Africa and Zambia engage with the concepts of "woman" and "HIV risk". The data are drawn from participatory storytelling activities completed with 604 participants across 78 group discussions between December 2012 and May 2013. During discussions we found that participants made use of the core archetypal caricatures of "goodness," "badness," and "vulnerability" when describing women's HIV risk. Community members shifted between these categories in their characterizations of women, as they acknowledged the multiple roles women play, internalized different stories about women, and sometimes shifted register in the same stories. Findings suggest that health implementers, in consultation with community members, should consider the multiple positions women occupy and how this impacts the wider community's understandings of women and "risk". This approach of taking on board community understandings of the complexity of HIV risk can inform the design and implementation of HIV prevention and care programs by rendering programs more focused and in-line with community needs

Who is answerable to whom? Exploring the complex relationship between researchers, community and Community Advisory Board (CAB) members in two research studies in Zambia

This paper explores the accountability relationships that arise between researchers, the community and community representative structures known as Community Advisory Boards (CABs). It draws on ethnographic and case study research that documented the history, recruitment, composition and representativeness of two CABs and their relationships with researchers and communities, carried out in two studies in Zambia between 2010 and 2014. The findings revealed contradictions, nuances and imbalances in actual community participation and representation. In both studies, the general population was not given the opportunity to participate in the election of their CAB representatives, and the elected CAB members themselves were initially told to have little or no direct contact with research participants whom they were supposed to represent (unless researchers dictated otherwise). Owing to the researchers’ monopoly of scientific knowledge, literacy and financial resources, power relations were imbalanced. Further, researchers were quick to ask for and formalise community commitment through the CABs whilst reticent about their own accountability to the community. Yet despite these imbalances and CABs lacking formal authority over researchers, CABs did have subtle powers arising from their wider influence in the community, which they could tap into to either support or resist research. To achieve a more balanced and open accountability between research stakeholders, more genuine participatory processes need to be built and sustained

Navigating 'ethics in practice': An ethnographic case study with young women living with HIV in Zambia.

While 'procedural ethics' provides essential frameworks for governing global health research, reflecting on 'ethics in practice' offers important insights into addressing ethically important moments that arise in everyday research. Particularly for ethnographic research, renowned for it's fluid and spontaneous nature, engaging with 'ethics in practice' has the potential to enhance research practice within global health. We provide a case study for such reflexivity, exploring 'ethics in practice' of ethnographic research with middle-income young women living with HIV in Lusaka, Zambia. We explore the ethical issues arising from the layered interaction of the population (young women), the disease under investigation (HIV), the method of study (ethnographic), and the setting (Zambia, a lower middle income country). We describe how we navigated five key practical ethical tensions that arose, namely the psycho-emotional benefits of the research, the negotiated researcher-participant relationship, protecting participants' HIV status, confidentiality and data ownership, and researcher obligations after the end of the research. We exemplify reflexive engagement with 'ethics in practice' and suggest that engaging with ethics in this way can make important contributions towards developing more adequate ethical guidelines and research practice in global public health