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Multicenter Study
. 2018 Feb 1;18(1):76.
doi: 10.1186/s12913-017-2826-7.

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

Fabian Cataldo  1 , Janet Seeley  2   3 , Misheck J Nkhata  4 , Zivai Mupambireyi  5 , Edward Tumwesige  3 , Diana M Gibb  6 ; Lablite team
Collaborators, Affiliations
Multicenter Study

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

Fabian Cataldo et al. BMC Health Serv Res. .

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.

Keywords: Community health workers; Defaulters; Loss to follow up; Option B+; PMTCT; Positionality; Tracing.

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Conflict of interest statement

Ethics approval and consent to participate

The study was approved by the National Health Science Research Committee in Malawi (Protocol number 889), the Joint Clinical Research Centre Institutional Review Board, and National Council for Science and Technology in Uganda (Protocol number HS 1039) and the Medical Research Council in Zimbabwe (Protocol number MRCZ/A/1630). Written informed consent was obtained from study participants. Rules for informed consent, privacy and confidentiality were followed at all times; data collection and consent procedures were reviewed and approved by each national ethics committee.

Consent for publication

Written informed consent was obtained from study participants.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. Lehmann U, Sanders D. Community health workers: what do we know about them. Geneva: World Health Organization; 2007.
    1. WHO: Strengthening the performance of community health workers in primary health care: report of a WHO Study Group [meeting held in Geneva from 2 to 9 December 1987]. 1989. - PubMed
    1. Schneider H, Hlophe H, van Rensburg D. Community health workers and the response to HIV/AIDS in South Africa: tensions and prospects. Health Policy Plan. 2008;23(3):179–187. doi: 10.1093/heapol/czn006. - DOI - PubMed
    1. Nading AM. Love Isn't There in Your Stomach. Med Anthropol Q. 2013;27(1):84–102. doi: 10.1111/maq.12017. - DOI - PubMed
    1. Maes K, Kalofonos I. Becoming and remaining community health workers: perspectives from Ethiopia and Mozambique. Soc Sci Med. 2013;87:52–59. doi: 10.1016/j.socscimed.2013.03.026. - DOI - PMC - PubMed

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