Applying theory on stigma to the life histories of children living with HIV

The "moral career" of perinatally HIV-infected children: revisiting Goffman's concept.

Cruz ML, Bastos FI, Darmont M, Dickstein P, Monteiro S. AIDS Care. 2014 Jul 23:1-4. [Epub ahead of print]

HIV-infected children usually live in vulnerable situations, experiencing discrimination and stigma commonly felt by other people living with HIV/AIDS. The present study aims to analyse primary socialisation of HIV-infected children and adolescents recruited from a public health service in Rio de Janeiro (Brazil) as a social process that shapes a new generation of stigmatised and vulnerable persons. Research was informed by an interactionist perspective, focusing on key aspects of HIV-infected children and adolescents life histories under the conceptual frame of Erving Goffman's theories regarding "moral careers". Goffman defines the making of a moral career as the process through which a person learns that she/he possesses a particular attribute, which may lead her/him to be discredited by members of the surrounding society. We have identified aspects of life histories of HIV-vertically infected children and adolescents for each aspect of "moral career" as described by Goffman, relating them to as family structure, the experience of living HIV within the family, and the position and family role of a given subject. The patterns of "moral career" proposed by Goffman in 1963 were useful in identifying components of HIV-related stigma among children and adolescents. These include gender and social disadvantages, difficulty in coping with a child with a potentially severe disease, orphanhood, abandonment, adoption and disclosure of one's HIV serostatus. Primary socialisation of HIV-infected children and adolescents is a key piece of the complex HIV/AIDS-labelling process that could be targeted by interventions aiming to decrease stigma and marginalisation. Health care workers and stakeholders should be committed to ensuring education and guaranteeing the legal rights of this specific population, including the continuous provision of quality health care, full access to school and support to full disclosure of HIV diagnosis.

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Editor’s notes: This paper applies Goffman’s theory of ‘moral careers’ to analyse how children and adolescents living with HIV come to be socialised as stigmatised persons. Goffman’s theory identifies the process through which someone becomes defined as possessing a discrediting attribute, and is subsequently discriminated.

The authors collected the life histories of young people living with HIV in Rio de Janeiro, Brazil. Specifically the data were generated through researchers doing clinic observations at one of the city’s public hospitals. They identify four pivotal episodes over the course of an HIV positive young person’s life which socialise them to becoming a stigmatised person. These are: developing symptomatic diseases from an early age; their HIV diagnosis being kept a secret from them; learning of their HIV status as an adolescent having been asymptomatic; and learning about their HIV diagnosis within an orphanage or similar institution. This analysis also illuminates key opportunities to take action and prevent potential damage. The authors consider how, why and when children living with HIV become stigmatised during their early and adolescent lives. Crucially this paper includes important reflections on how children come to stigmatise themselves through absorbing the perceptions of the society within which they are living.  The authors argue that activities are needed, especially delivered by healthcare workers, which focus on these events by providing information and support to young people and their families. Such strategically timed action would positively affect the way these children grow up in their communities.   

Latin America
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