Stigma When There Is No Other Option: Understanding How Poverty Fuels Discrimination toward People Living with HIV in Zambia
In: AIDS, Poverty, and Hunger: Challenges and Responses, S. 181-181
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In: AIDS, Poverty, and Hunger: Challenges and Responses, S. 181-181
In: Journal of the International AIDS Society, Band 15, Heft S1
ISSN: 1758-2652
IntroductionDespite the relatively effective roll‐out of free life‐prolonging antiretroviral therapy (ART) in public sector clinics in Zambia since 2005, and the proven efficacy of ART, some people living with HIV (PLHIV) are abandoning the treatment. Drawing on a wider ethnographic study in a predominantly low‐income, high‐density residential area of Lusaka, this paper reports the reasons why PLHIV opted to discontinue their HIV treatment.MethodsOpened‐ended, in‐depth interviews were held with PLHIV who had stopped ART (n = 25), ART clinic staff (n = 5), religious leaders (n = 5), herbal medicine providers (n = 5) and lay home‐based caregivers (n = 5). In addition, participant observations were conducted in the study setting for 18 months. Interview data were analysed using open coding first, and then interpreted using latent content analysis. The presentation of the results is guided by a social‐ecological framework.FindingsPatient attrition from ART care is influenced by an interplay of personal, social, health system and structural‐level factors. While improved corporeal health, side effects and need for normalcy diminished motivation to continue with treatment, individuals also weighed the social and economic costs of continued uptake of treatment. Long waiting times for medical care and placing "defaulters" on intensive adherence counselling in the context of insecure labour conditions and livelihood constraints not only imposed opportunity costs which patients were not willing to forego, but also forced individuals to balance physical health with social integrity, which sometimes forced them to opt for faith healing and traditional medicine.ConclusionsComplex and dynamic interplay of personal, social, health system and structural‐level factors coalesces to influence patient attrition from ART care. Consequently, while patient‐centred interventions are required, efforts should be made to improve ART care by extending and establishing flexible ART clinic hours, improving patient‐provider dialogue about treatment experiences and being mindful of the way intensive adherence counselling is being enforced. In the context of insecure labour conditions and fragile livelihoods, this would enable individuals to more easily balance time for treatment and their livelihoods. As a corollary, the perceived efficacy of alternative treatment and faith healing needs to be challenged through sensitizations targeting patients, religious leaders/faith healers and herbal medicine providers.
In: Evaluation and Program Planning, Band 25, Heft 4, S. 347-356
Background: Zambia has created new disability policies and updated existing policies to be consistent with the United Nations Convention on the Rights of Persons with Disabilities. These initiatives require the widespread engagement of ministries and departments to achieve effective policy development and implementation. To pursue widespread engagement, the Government of Zambia developed a structure of disability focal point persons (FPPs). The Zambian disability FPP structure has not yet been explored systematically. Objective: To explore disability policy stakeholder perspectives about FPPs as a feature of disability policy development and implementation. Methods: We conducted semi-structured interviews with 24 disability policy stakeholders (10 policymakers, 2 researchers, and 12 disability advocates) as part of a larger study about the development and implementation of disability-related policies in Zambia. Interviews were audio recorded and transcribed. Data were analyzed using content analysis. Results: Participants presented FPPs as a promising way to mainstream disability within the government. According to participants, the initial launch of the FPP structure was ineffective, with a lack of clarity about the structure and an initial cohort of FPPs that wielded minimal influence. The FPP structure has since been revised. Participants express promise that the improved second launch will achieve mainstreaming. Discussion: Zambian disability policy stakeholders describe a disability FPP structure that is different from the models suggested for treaty implementation. Pre-established commitments to mainstreaming among stakeholders might have stimulated interest in following the cyclical development of the disability FPP structure, encouraging a whole-of-government approach to disability policy implementation.
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An anthropological study carried out in 2006/7 in rural Zambia and peri-urban South Africa documented the impact of co-infection with TB and HIV on poor households in the context of poverty and overstretched public health services. The anthropological research was conducted in 18 households affected by TB throughout the period of TB treatment and in 17 comparative non-affected households. Findings reveal that families experience disease alongside desperate social and economic inequities, with more absolute poverty and a deeper degree and prevalence of food insecurity in rural Zambia. Charting patient's journeys from falling sick with TB to completing treatment revealed that most faced a protracted diagnostic period, pingponging between treatment options with trips to the government health services the most frequent. Most were extremely sick and emotionally fragile once diagnosed, many had relocated back to their parents' home, and, all were no longer able to contribute to household livelihood. During the first months of TB treatment, patients and caregivers experienced contracted mobility and networks, reduced income and increased expenditure on 'special foods'. Foods prescribed for TB patients were beyond the normal diet of households, especially in rural Zambia. As caregivers did their upmost to provide these foods (soft drinks, meat, eggs, fish, porridge), tensions and food insecurity in the households escalated, often resulting in family quarrels and caregivers themselves falling sick. In peri-urban South Africa, disability grants, food aid from the government health services and chequered food aid and material support from NGOs helped households through this period. But in Zambia, although emotional and technical support reached the households through government health services, a household counselling intervention and visits of church members, no affected household received any food aid or material support from state or NGOs and support from extended kin was very limited. More extreme coping strategies were subsequently adopted—for example selling clothes, begging, relocating—and affected households spun into deeper poverty and by the end of treatment were mostly severely short of food and in nutritional jeopardy. Across both countries, most TB patients were unable to resume previous livelihoods and most (n=13) were co-infected with HIV, throwing them onto another more long term disease trajectory. Accessing antiretroviral therapy (ART) was much more feasible in peri-urban South Africa and much harder in rural Zambia. Stigma related to TB and to HIV was more pronounced in rural Zambia but still persisted in both countries. Outcomes of TB treatment were mixed in both countries. Better outcomes included co-infected patients who started ART and experienced physical and social transformations and HIV-negative TB patients who successfully completed treatment. However, five TB patients died, one fell sick with relapse TB, two co-infected patients never started ART and one patient was not aware of his HIV status and was unwell. In the short term, only one Zambian household and five South African households recovered from the event of TB. Recommendations oscillate around reducing diagnostic delay in government health services and the provision of a comprehensive nutritional programme and social protection for TB patients and people living with HIV (PLWH). ; Non-PR ; IFPRI1; GRP33; Impact of HIV; Food and nutrition security; RENEWAL
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In: African Journal of Disability, Band 7
ISSN: 2226-7220
Background: Understandings of disability are rooted in contexts. Despite the world's significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.Objectives: In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.Method: In this qualitative constructionist study, data collection focused upon life with a disability and services available to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.Results: The participants' main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.Conclusion: This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.
In: Child abuse & neglect: the international journal ; official journal of the International Society for the Prevention of Child Abuse and Neglect, Band 129, S. 105663
ISSN: 1873-7757
In: Anthropology, culture, and society
"How can we assess the ability of a place to respond to challenges like migration, recession and disease? Places which seem similar can respond very differently, and with varying degrees of success, to external threats and to the interventions designed to manage them. In this ... work, drawing on decades of research, Sandra Wallman explores how we can measure and compare the resilience of communities, looking in detail at neighbourhoods in London, Rome and Zambia. Each locale is examined as a system which is more or less open or closed; open systems tend to be more resilient when faced with external challenges. As well as being a fascinating study in its own right, the book includes detailed accounts of the research methods used, as well as a user-friendly typology for classifying local systems, making it an invaluable tool for students, researchers and policy-makers."--Publisher's website
In: Contributions in Medical Studies, 44
World Affairs Online
In: Journal of the International AIDS Society, Band 20, Heft 4
ISSN: 1758-2652
AbstractIntroductionAdolescent girls in sub‐Saharan Africa are disproportionately affected by HIV due to a range of social and structural factors. As they transition to adulthood, they are recipients of increasing blame for HIV infection and 'improper' sex, as well as increasing scrutiny, restrictions and surveillance. This study used a qualitative and participatory approach to explore the messaging and restrictions imposed on adolescent girls living with HIV in Zambia.MethodsThirty‐four in‐depth interviews and four participatory workshops were carried out with 24 adolescent girls aged 15 to 19 years old living with HIV in Lusaka, Zambia. Key themes explored included experiences living with HIV, finding out about HIV status, disclosure, experiences with antiretroviral treatment, and support needs. Data were organized, coded and analysed using a grounded theory approach to thematic analysis. This analysis uses data on participants' experiences of living with HIV and their interactions with their parents, guardians and healthcare providers.ResultsFamily and healthcare providers, partly in a quest to protect both the health of adolescent girls living with HIV and also to protect them from blaming discourse, imposed restrictions on their behaviour around three main topics: don't disclose your HIV status, don't have sex, and don't miss your medicines. These restrictions were often delivered using tactics of fear, and usually disconnected from other options. Participants responded to these messages in several ways, including internalizing the messages, changing their behaviour either to comply with or resist the restrictions, by remaining silent and anxious when restrictions were broken, and developing concerns around their own health and sexual and reproductive aspirations. Participants also sometimes experiencing stigma when restrictions could not be maintained.ConclusionsRestrictive messages were delivered to adolescent girls living with HIV through the broader social discourses of stigma, religion, and global and local narratives about HIV. Programmes aiming to support adolescent girls living with HIV need to work together with parents and healthcare providers to reflect on the impact of sanctioning messages, and to encourage more enabling and empowering messaging for adolescent girls living with HIV.
In: Journal of the International AIDS Society, Band 17, Heft 1
ISSN: 1758-2652
IntroductionDespite the emerging body of literature on increased vulnerability to HIV among people with disabilities (PWDs), there is a dearth of evidence related to experiences of PWDs who have become HIV‐positive. This priority was identified by a disability advocacy organization in Lusaka, Zambia, where the prevalence of HIV and of disability is each approximately 15%. The purpose of this study was to explore perceptions and experiences of HIV‐related health services for PWDs who are also living with HIV in Lusaka, Zambia.MethodsThis qualitative, interpretive study involved in‐depth, semi‐structured, one‐on‐one interviews with two groups of participants in Lusaka, Zambia: 21 PWDs who had become HIV‐positive, and 11 people working in HIV and/or disability. PWDs had physical, hearing, visual and/or intellectual impairments. Interviews were conducted in English, Nyanja, Bemba or Zambian sign language. Descriptive and thematic analyses were conducted by a multidisciplinary, international research team.ResultsParticipants described their experiences with HIV‐related health services in terms of the challenges they faced. In particular, they encountered three main challenges while seeking care and treatment: (1) disability‐related discrimination heightened when seeking HIV services, (2) communication barriers and related concerns with confidentiality, and (3) movement and mobility challenges related to seeking care and collecting antiretroviral therapy. These experiences were further shaped by participants' profound concerns about poverty and unmet basic needs.DiscussionThis study demonstrates how PWDs who are HIV‐positive have the same HIV care, treatment and support needs as able‐bodied counterparts, but face avoidable barriers to care. Many challenges mirror concerns identified with HIV prevention, suggesting that efforts to promote inclusion and reduce stigma could have widespread benefits.ConclusionsDespite the growing body of literature on increased risk of exposure to HIV among HIV‐negative PWDs, this is the first published study to examine perceptions of testing, treatment and other HIV services for PWDs who have become HIV‐positive. Findings reveal far‐reaching opportunities for improving the quality of care for this population.
In: Journal of the International AIDS Society, Band 21, Heft S4
ISSN: 1758-2652
AbstractIntroductionQualitative data are lacking on the impact of mobility among people living with HIV (PLHIV) and their decision‐making around anti‐retroviral treatment (ART). We describe challenges of juggling household responsibility, livelihood mobility and HIV management for six PLHIV in urban Zambia.MethodsSix PLHIV (three men and three women, aged 21 to 44) were recruited from different geographic zones in one urban community drawn from a qualitative cohort in a social science component of a cluster‐randomized trial (HPTN071 PopART). Participants were on ART (n = 2), not on ART (n = 2) and had started and stopped ART (n = 2). At least two in‐depth interviews and participant observations, and three drop‐in household visits with each were carried out between February and August 2017. Themed and comparative analysis was conducted.ResultsThe six participants relied on the informal economy to meet basic household needs. Routine livelihood mobility, either within the community and to a nearby town centre, or further afield for longer periods of time, was essential to get by. Although aware of ART benefits, only one of the six participants managed to successfully access and sustain treatment. The other five struggled to find time to access ART alongside other priorities, routine mobility and when daily routines were more chaotic. Difficulty in accessing ART was exacerbated by local health facility factors (congestion, a culture of reprimanding PLHIV who miss appointments, sporadic rationed drug supply), stigma and more limited social capital.ConclusionsUsing a time‐space framework illustrated how household responsibility, livelihood mobility and HIV management every day were like spinning plates, each liable to topple and demanding constant attention. If universal lifelong ART is to be delivered, the current service model needs to adjust the limited time that some PLHIV have to access ART because of household responsibilities and the need to earn a living moving around, often away from home. Practical strategies that could facilitate ART access in the context of livelihood mobility include challenging the practice of reprimand, improving drug supply, having ART services more widely distributed, mapped and available at night and weekends, and an effective centralized client health information system.
In: Emerging adulthood, Band 10, Heft 5, S. 1161-1172
ISSN: 2167-6984
Art-based research methods can enable young people to generate data that provide insights into their lives. We assessed the feasibility, value, and limitations of collages as a participatory research method to understand the experiences of young women living with HIV. Individual collages were created in participatory workshops, firstly in 2015 and secondly in 2017, by a cohort of young women living with HIV in Lusaka, Zambia. Collages were analyzed visually and thematically and compared to other qualitative methods. Participants engaged readily with making collages and expressed how the collages represented themselves. The collages conveyed aspirations, resilience, optimism, and identities beyond HIV. Other data generation methods focused more on challenges associated with HIV. The second collages demonstrated more complex portrayals of participants' life and developmental transitions. Collages provided a feasible, effective, and therapeutic method of empowering young women living with HIV to tell their own stories and express their full selves.
In: Journal of the International AIDS Society, Band 25, Heft 1
ISSN: 1758-2652
AbstractIntroductionThe HPTN 071 (PopART) trial demonstrated that universal HIV testing‐and‐treatment reduced community‐level HIV incidence. Door‐to‐door delivery of HIV testing services (HTS) was one of the main components of the intervention. From an early stage, men were less likely to know their HIV status than women, primarily because they were not home during service delivery. To reach more men, different strategies were implemented during the trial. We present the relative contribution of these strategies to coverage of HTS and the impact of community hubs implemented after completion of the trial among men.MethodsBetween 2013 and 2017, three intervention rounds (IRs) of door‐to‐door HTS delivery were conducted in eight PopART communities in Zambia. Additional strategies implemented in parallel, included: community‐wide "Man‐up" campaigns (IR1), smaller HTS campaigns at work/social places (IR2) and revisits to households with the option of HIV self‐testing (HIVST) (IR3). In 2018, community "hubs" offering HTS were implemented for 7 months in all eight communities. Population enumeration data for each round of HTS provided the denominator, allowing for calculation of the proportion of men tested as a result of each strategy during different time periods.ResultsBy the end of the three IRs, 65–75% of men were reached with HTS, primarily through door‐to‐door service delivery. In IR1 and IR2, "Man‐up" and work/social place campaigns accounted for ∼1 percentage point each and in IR3, revisits with the option of self‐testing for ∼15 percentage points of this total coverage per IR. The yield of newly diagnosed HIV‐positive men ranged from 2.2% for HIVST revisits to 9.9% in work/social places. At community hubs, the majority of visitors accepting services were men (62.8%). In total, we estimated that ∼36% (2.2% tested HIV positive) of men resident but not found at their household during IR3 of PopART accessed HTS provided at the hubs after trial completion.ConclusionsAchieving high coverage of HTS among men requires universal, home‐based service delivery combined with an option of HIVST and delivery of HTS through community‐based hubs. When men are reached, they are willing to test for HIV. Reaching men thus requires implementers to adapt their HTS delivery strategies to meet men's needs.Clinical Trial NumberNCT01900977
BACKGROUND: In 2014, the Joint United Nations Programme on HIV/AIDS (UNAIDS) set the 90-90-90 targets: that 90% of people living with HIV know their HIV status, that 90% of those who know their HIV-positive status are on antiretroviral therapy (ART), and that 90% of those on treatment are virally suppressed. The aim was to reach these targets by 2020. We assessed the feasibility of achieving the first two targets, and the corresponding 81% ART coverage target, as part of the HIV Prevention Trials Network (HPTN) 071 Population Effects of Antiretroviral Therapy to Reduce HIV Transmission (PopART) community-randomized trial. METHODS AND FINDINGS: The study population was individuals aged ≥15 years living in 14 urban and peri-urban "PopART intervention" communities in Zambia and South Africa (SA), with a total population of approximately 600,000 and approximately 15% adult HIV prevalence. Community HIV care providers (CHiPs) delivered the PopART intervention during 2014-2017. This was a combination HIV prevention package including universal home-based HIV testing, referral of HIV-positive individuals to government HIV clinic services that offered universal ART (Arm A) or ART according to national guidelines (Arm B), and revisits to HIV-positive individuals to support linkage to HIV care and retention on ART. The intervention was delivered in 3 "rounds," each about 15 months long, during which CHiPs visited all households and aimed to contact all individuals aged ≥15 years at least once. In Arm A in Round 3 (R3), 67% (41,332/61,402) of men and 86% (56,345/65,896) of women in Zambia and 56% (17,813/32,095) of men and 71% (24,461/34,514) of women in SA participated in the intervention, among 193,907 residents aged ≥15 years. Following participation, HIV status was known by 90% of men and women in Zambia and by 78% of men and 85% of women in SA. The median time from CHiP referral of HIV-positive individuals to ART initiation was approximately 3 months. By the end of R3, an estimated 95% of HIV-positive women and 85% of HIV-positive men knew their HIV status, and among these individuals, approximately 90% of women and approximately 85% of men were on ART. ART coverage among all HIV-positive individuals was approximately 85% in women and approximately 75% in men, up from about 45% at the start of the study. ART coverage was lowest among men aged 18 to 34 and women aged 15 to 24 years, and among mobile individuals/in-migrants. Findings from Arm B were similar. The main limitations to our study were that estimates of testing and treatment coverage among men relied on considerable extrapolation because, in each round, approximately one-third of men did not participate in the PopART intervention; that our findings are for a service delivery model that was relatively intensive; and that we did not have comparable data from the 7 "standard-of-care" (Arm C) communities. CONCLUSIONS: Our study showed that very high HIV testing and treatment coverage can be achieved through persistent delivery of universal testing, facilitated linkage to HIV care, and universal treatment services. The ART coverage target of 81% was achieved overall, after 4 years of delivery of the PopART intervention, though important gaps remained among men and young people. Our findings are consistent with previously reported findings from southern and east Africa, extending their generalisability to urban settings with high rates of in-migration and mobility and to Zambia and SA. TRIAL REGISTRATION: ClinicalTrials.gov NCT01900977.
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