Correspondence

“Opt-out” testing for HIV in Africa: a caution

Women in sub-Saharan Africa are increasingly learning their HIV status in prevention of mother-to-child transmission of HIV (PMTCT) programmes in the context of antenatal care. This paper examines women's decisions about HIV testing and their experience of PMTCT and HIV-related care in one clinic in Lilongwe, Malawi. It is based on qualitative, ethnographic research conducted in 2004 and 2005, including interviews and focus group discussions with 55 HIV-positive women participating in a PMTCT programme, and 21 interviews with key informants from the programme and the health system. Women's expectations from testing were consistent with the benefits for their own health and their infants' health, as communicated by nurses. However, the PMTCT programme only poorly met their expectations. Reasons for this disjuncture included the construction of women as still healthy even when they needed treatment, a focus only on infant health, health system weaknesses, lack of integrated care and timely referral, and defining HIV exclusively as a medical issue, while ignoring the social determinants of health. Women's own health was particularly marginalised within the PMTCT programme, yet good models exist for comprehensive care for women, infants and their families that should be implemented as testing is scaled up.

En Afrique subsaharienne, de plus en plus de femmes connaissent leur statut sérologique grâce aux programmes de prévention de la transmission mère-enfant du VIH (PTME) dans le contexte des soins prénatals. Cet article examine les décisions des femmes sur le test et leur expérience de la PTME et des soins liés au VIH dans un dispensaire à Lilongwe, Malawi. Il est fondé sur une recherche qualitative ethnographique menée en 2004 et 2005 qui comprenait des entretiens et des discussions de groupe avec 55 femmes séropositives participant à un programme de PTME, et 21 entretiens avec des informateurs clés du programme et du système de santé. Les attentes des femmes quant au dépistage cadraient avec les avantages pour leur santé et celle de leur bébé tels que les infirmières les avaient exposés. Néanmoins, le programme de PTME répondait mal à leurs espérances, notamment du fait que les femmes se voyaient encore en bonne santé alors qu'elles avaient besoin d'un traitement. D'autres raisons étaient l'accent mis uniquement sur la santé du nourrisson, les faiblesses du système de santé, le manque de soins intégrés et de transfert ponctuel des patients, et la définition du VIH exclusivement comme une question médicale, au mépris des déterminants sociaux de la santé. La santé des femmes était particulièrement marginalisée dans le programme de PTME. Pourtant, de bons modèles de soins complets existent pour les femmes, les nourrissons et leur famille. Ils devraient être appliqués alors que le dépistage s'étend.

Las mujeres en África subsahariana están conociendo cada vez más su estado de VIH en programas de prevención de la transmisión materno-infantil (PTMI) del VIH, en el contexto de la atención antenatal. Este artículo examina las decisiones de las mujeres respecto a las pruebas de VIH y su experiencia con la PTMI y el tratamiento del VIH en una clínica de Lilongwe, en Malaui. Se basa en una investigación etnográfica cualitativa, realizada en 2004 y 2005, con entrevistas y discusiones en grupos focales con 55 mujeres VIH-positivas, que participaron en un programa de PTMI, y 21 entrevistas con informantes clave del programa y el sistema de salud. Las expectativas de las mujeres en cuanto a las pruebas concordaron con los beneficios para su propia salud y la salud de sus bebés, según informaron las enfermeras. Sin embargo, el programa de PTMI no logró satisfacer bien sus expectativas por las siguientes razones: ver a las mujeres como saludables aun cuando necesitaban tratamiento, centrarse sólo en la salud de los bebés, las debilidades del sistema de salud, la falta de servicios integrados y referencias oportunas, y definir al VIH exclusivamente como un problema médico sin prestar atención a los determinantes sociales de la salud. Aunque la salud de las mujeres fue particularmente marginada en el programa de PTMI, existen buenos modelos de atención integral para las mujeres, sus bebés y sus familias, que deberían implementarse según se vayan ampliando los programas de pruebas del VIH.

In 2007 WHO/UNAIDS issued new HIV testing guidelines recommending ‘provider-initiated HIV testing and counselling’ (PITC). In contrast to existing ‘voluntary counselling and testing’ guidelines (whereby individuals self refer for testing), the PITC guidance recommends that, in countries with generalised epidemics, all patients are routinely offered an HIV test during clinical encounters. In sub-Saharan Africa, PITC aims to dramatically increase HIV testing rates so that PITC becomes a vehicle to increase access to HIV prevention and care. Nurses in this region work on the frontlines of HIV testing but have been neglected in related policy development.

To provide an overview of the PITC policy guidance and to critically consider its implications for the nursing profession in sub-Saharan Africa.

Policy documents and published and unpublished research were identified from organisational websites, electronic databases and conference proceedings.

PITC has generated widespread debate about whether it is the right approach in a context of HIV-related stigma and lack of human/material resources. Key concerns are whether/how informed consent, privacy and confidentiality will be upheld in overstretched health care settings, and whether appropriate post-test counselling, treatment and support can be provided. Limited available evidence suggests that health systems factors and organisational/professional culture may create obstacles to effective PITC implementation. Specific findings are that:

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  PITC greatly increases nurses’ workload and work-related stress.

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  Nurses are generally positive about PITC, but express the need for more training and managerial support.

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  Health system constraints (lack of staff, lack of space) mean that nurses do not always have time to provide adequate counselling.

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  A hierarchical and didactic nursing culture affects counselling quality and the boundaries between voluntary informed consent and coercion can become rather blurred.

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  Nurses are particularly stressed by breaking bad news and handling ethical dilemmas.

Three areas are identified in which the PITC implementation process needs to be strengthened: (i) research/audit (to explore nurse and patient experiences, to identify best practice and key obstacles), (ii) greater nurse participation in policy development, (iii) strengthening of nurse training and mentoring.