‘She's My Sister‐In‐Law, My Visitor, My Friend’ – Challenges of Staff Identity in Home Follow‐Up in an <scp>HIV</scp> Trial in <scp>W</scp>estern <scp>K</scp>enya

Madiega, Philister Adhiambo; Jones, Gemma M. M.; Prince, Ruth J.; Geissler, Paul Wenzel

doi:10.1111/dewb.12019

Cited by 24 publications

(36 citation statements)

References 13 publications

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“…As other research has shown, the majority of CCWs live in the same communities as those to whom they provide care and often confront similar challenges to the individuals they are meant to be caring for (Fakier, 2014;Mashau, Netshandama, & Mudau, 2014). Further, recent work by Madiega, Jones, Prince, and Geissler (2013) suggests that relationships between carers and clients which transverse formal-informal and professional-personal boundaries come with additional personal responsibilities and sometimes use of personal resources. Similarly, carers in our work often expressed concerns that the personal cost of their care could come at too high a price.…”

Section: Discussionmentioning

confidence: 99%

Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a “Universal Test and Treat” approach in South Africa

Wademan

Reynolds

2016

AIDS Care

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South Africa currently sustains the largest antiretroviral treatment (ART) programme in the world. The number of people on ART is set to grow even more in the coming years as incidence remains stable, people on ART stay healthy, and guidelines for initiation become increasingly inclusive. The South African public health sector has increasingly relied on community-and home-based lay and professional "carers" to carry out the everyday tasks of rolling out the ART programme. Drawing on ethnographic research in one locality in the Western Cape, the paper explores the care practices of two such groups of carers implementing a 'Universal Test and Treat' (UTT) approach. The UTT approach being evlauated in this place is based on one model of the HIV treatment cascade, or care continuum, which focuses on the steps necessary to identify and link HIV-positive individuals to care and retain them in lifelong HIV treatment. In this context, community-based care workers are responsible for carrying out several discrete steps in the HIV care continuum, including testing people for HIV, linking HIV-positive individuals to care, and supporting adherence. In order to retain clients within the continuum, however, carers also perform other forms of labour that stretch their care work beyond more bounded notions of a stepwise progression of care. These broader forms of care, which can be material, emotional, social or physical in nature, appear alongside the more structured technical and biomedical tasks formally expected of carers. We argue that understanding the dynamics of these more distributed and relational forms of care is essential for the effective implementation of the care continuum, and of the UTT approach, in diverse contexts. ARTICLE HISTORY

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Section: Discussionmentioning

confidence: 99%

Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a “Universal Test and Treat” approach in South Africa

Wademan

Reynolds

2016

AIDS Care

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“…Regularly updated 'locator forms' -itineraries including bus directions, landmarks, phone numbers and people to ask for directions (or to avoid) -help them to find participants. Confidentiality is important in urban (especially HIV) research, and workers often present themselves as health workers, or church friends or relatives rather than researchers (Madiega et al 2013), which simultaneously opens space for more personal engagements and adds distance from the field. Fieldwork often involves issues like sexuality or childcare, feeding or hygiene, HIV disclosure and domestic conflict.…”

Section: Collectivesmentioning

confidence: 99%

Stuck in Ruins, or Up and Coming? The Shifting Geography of Urban Public Health Research in Kisumu, Kenya

Geissler¹

2013

Africa

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This article traces the shifting geography of 'street-level' science work in the East African city of Kisumu by comparing two generations of local workers in public health research -one working in the present, the other remembering work and the city thirty or more years ago. Contributing to literature on the interaction of science and place -how science has shaped the city (for example, Packard 1990), how the city can be read as an 'archive' of past inscriptions (Quayson 2010), or how it is made part of producing and legitimizing scientific knowledge (see, for example, Gieryn 2006) -the article focuses on the engagement of place and work in the envisioning, and remembrance, of civic projects: the city as 'man's method of expression' in pursuit of association and well-being, a layered work of pasts and futures (Mumford 1961); or as an ensemble of movements and work that calls forth the polis, a material 'space of appearance' through which one's participation (or not) in a larger social entity takes form (see Arendt 1951Arendt , 1958. 1 One's habitation and circulation in a city reflect and shape how (indeed, whether) one experiences the city as a civitas, and oneself as a citizen with entitlements and responsibilities. This civitas extends into multiple pasts (seen and used differently by different people), and forward by way of urban plans, visions and actions, and in the future's embodiment in urban infrastructures. In turn, citizenship can be threatened by erasure and amnesia, dispossession and fragmentation -and found again, or reinvented (see Arendt 1958: 198-9).'Street-level health work' is exemplary civic work. Focusing on citizens' bodies rather than material infrastructure, it is preoccupied with the continuity of life and the future well-being of the polis. Attending to the places and movements of public health research in an African city we discern their civitas -the 'public' in the notion of 'public health' -and attendant 'geographies of responsibility' PAUL WENZEL GEISSLER teaches at the Institute of Social Anthropology at the University of Oslo; he also works with the research group Anthropologies of African Bioscience at the Department of Anthropology, University of Cambridge. His current work is focused on medical research and intervention in Africa, with particular interest in the interaction between perceptions of time and materiality. His recent publications include The Land Is Dying (with Ruth Prince), and the edited volumes Evidence, Ethos and Experiment: the anthropology and history of medical research in Africa (with C. Molyneux) and Rethinking Biomedicine and Governance in Africa (with J. Zenker and R. Rottenburg). Email: p.w.geissler@sai.uio.no 1 For Arendt the polis is not merely 'the city-state in its physical location' but the 'organization of the people as it arises out of acting and speaking together', that is, a 'space of appearance ' (1958: 198). This polis relies upon the intentional work of those united by it; it 'does not survive the actuality of the movement which brought it i...

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“…CRs bring valuable expertise to the difficult task of identifying and following up with research participants living in precarious or transient circumstances, particularly those who do not access treatment or other services (Griffiths et al, 1993; Madiega et al, 2013). For communities facing discrimination and marginalization, inclusion of CRs as paid research staff can contribute to capacity-building and circulation of scientific knowledge, build collaborations between communities and research organizations, and lead to interventions and policies informed by community expertise (Canadian HIV/AIDS Legal Network, 2005; Aellah & Geissler, 2016; Souleymanov et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

“…For example, when CRs known for their work on HIV or drug use studies conduct research activities in community spaces and private homes, it increases the risk of exposure and stigmatization for research participants (Madiega, 2013; Souleymanov et al, 2016). CRs who work with individuals and communities affected by addiction and serious illness often encounter what has been termed the ‘moral hazard’ of being unable to offer adequate services in the face of great need (Broadhead et al, 1995).…”

Section: Introductionmentioning

confidence: 99%

“…Recent work by Madiega and colleagues (2013) tracked how community researchers working on an HIV trial in Western Kenya responded to the need to maintain confidentiality and mistrust of research by pretending to be a friend or distant relative in the presence of non-participants while visiting participants in community and home settings. They observe how the assumption of these alternative identities helped to protect research participants from stigma, but also raised expectations of reciprocity that went beyond standard researcher-participant relationships.…”

Section: Introductionmentioning

confidence: 99%

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Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research

True¹,

Alexander

Fisher

2017

Social Science & Medicine

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Community researchers are laypersons who conduct research activities in their own communities. In addiction and HIV research, community researchers are valued for their insider status and knowledge. At the same time, their presence on the research team raises concerns about coercion and confidentiality when community researchers and participants know each other personally, and the work of navigating between the worlds of research and community leads to moral distress and burnout for some community researchers. In this paper, we draw upon the concept of ‘moral experience’ to explore the local moral worlds of community researchers in the context of addiction research. In February and March, 2010, we conducted focus groups with 36 community researchers employed on community-based addiction studies in the United States to elicit perspectives on ethical and moral challenges they face in their work and insights on best practices to support their role in research. Community researchers described how their values were realized or thwarted in the context of research, and their strategies for coping with shifting identities and competing priorities. They delineated how their knowledge could be used to inform development of research protocols and help principal investigators build and maintain trust with the community researchers on their teams. Our findings contribute to current understandings of the moral experiences of community members employed in research, and inform policies and practices for the growing field of community-engaged research. Funders, research organizations, and research ethics boards should develop guidelines and standards to ensure studies have key resources in place to support community researchers and ensure quality and integrity of community-engaged work. Investigators who work with community researchers should ensure channels for frontline staff to provide input on research protocols and to create an atmosphere where challenges and concerns can be openly and safely discussed.

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‘She's My Sister‐In‐Law, My Visitor, My Friend’ – Challenges of Staff Identity in Home Follow‐Up in an HIV Trial in Western Kenya

Abstract: ABSTRACT

Cited by 24 publications

References 13 publications

Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a “Universal Test and Treat” approach in South Africa

Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a “Universal Test and Treat” approach in South Africa

Stuck in Ruins, or Up and Coming? The Shifting Geography of Urban Public Health Research in Kisumu, Kenya

Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research

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