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She knows that she will not come back: tracing patients and new thresholds of collective surveillance in PMTCT Option B+

Cataldo, F; Seeley, J; Nkhata, MJ; Mupambireyi, Z; Tumwesige, E; Gibb, DM; Lablite Team, ; (2018) She knows that she will not come back: tracing patients and new thresholds of collective surveillance in PMTCT Option B+. BMC Health Services Research , 18 , Article 76. 10.1186/s12913-017-2826-7. Green open access

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Abstract

Background: Malawi, Uganda, and Zimbabwe have recently adopted a universal ‘test-and-treat’ approach to the prevention of mother-to-child transmission of HIV (Option B+). Amongst a largely asymptomatic population of women tested for HIV and immediately started on antiretroviral treatment (ART), a relatively high number are not retained in care; they are labelled ‘defaulters’ or ‘lost-to-follow-up’ patients. Methods: We draw on data collected as part of a study looking at ART decentralization (Lablite) to reflect on the spaces created through the instrumentalization of community health workers (CHWs) for the purpose of bringing women who default from Option B+ back into care. Data were collected through semi-structured interviews with CHWs who are designated to trace Option B+ patients in Uganda, Malawi and Zimbabwe. Findings: Lost to follow up women give a range of reasons for not coming back to health facilities and often implicitly choose not to be traced by providing a false address at enrolment. New strategies have sought to utilize CHWs’ liminal positionality - situated between the experience of living with HIV, having established local social ties, and being a caretaker - in order to track ‘defaulters’. CHWs are often deployed without adequate guidance or training to protect confidentiality and respect patients’ choice. Conclusions: CHWs provide essential linkages between health services and patients; they embody the role of ‘extension workers’, a bridge between a novel health policy and ‘non-compliant patients’. Option B+ offers a powerful narrative of the construction of a unilateral ‘moral economy’, which requires the full compliance of patients newly initiated on treatment.

Type: Article
Title: She knows that she will not come back: tracing patients and new thresholds of collective surveillance in PMTCT Option B+
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12913-017-2826-7
Publisher version: http://doi.org/10.1186/s12913-017-2826-7
Language: English
Additional information: Copyright © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Keywords: Community health workers, Tracing, Positionality, Defaulters, Loss to follow upPMTCT, Option B+
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology > MRC Clinical Trials Unit at UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute for Global Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute for Global Health > Infection and Population Health
UCL > Provost and Vice Provost Offices > UCL SLASH
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS > SHS Faculty Office
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS > SHS Faculty Office > UCL Institute for Advanced Studies
URI: https://discovery.ucl.ac.uk/id/eprint/10042419
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