Navigating Adolescence with HIV: Identity Crisis, School Failure and Social Exclusion

Author(s):

Juan Carlos González-Faraco(presenting / submitting)Inmaculada Iglesias Villarán(presenting)Antonio Luzon

Conference:

ECER 2014

Network:

08. Research on Health Education

Format:

Paper

Session Information

08 SES 05 A, Health, Schools and Inclusion

Paper Session

Time:

2014-09-03

11:00-12:30

Room:

B101 Sala de Aulas

Chair:

Kevin Dadaczynski

Contribution

In Spain AIDS cases have declined substantially, but not the rate of new HIV infections, which are higher than the EU average. Current figures show that two thirds of those infected with HIV are young men who have sex with men (MSM). Nearly 40% of new diagnoses are for foreigners. But mother to child transmission (MTCT) has become relatively rare (only 0.3% in 2011), so much so that this group of subjects is in noticeable decline. Today they are the living testimony of a most tragic stage in the history of the disease: a pioneering and unique group, with a long association with the infection.

In this paper we present some of the first conclusions of an ethnographic study of processes of social exclusion experienced and conceptualized by Spanish adolescents vertically HIV-infected. Since the mid-1990s, Highly Active Antiretroviral Therapy (HAART) has been implemented in countries with advanced public health systems, with the result that children infected at birth manage to survive, reach adolescence, and gain intimate and inescapable awareness of the disease and its social significance. Consequently, for these young people some of the problems usually associated with adolescence are amplified or exacerbated by qualities specifically related to the side-effects of their medication, to their generally low self-esteem and to their fear of social rejection. Initial observations of these phenomena stimulated the research reported here, whose main objective is eventually to discover and represent any cultural model or models and behavioral strategies that adolescents living with HIV might share. We seek to address these goals by examining autobiographical narratives collected through semi-structured interviews. Through their interpretations we hope to assess the nature and degree of social exclusion they suffer, given the powerful stigma associated with HIV/AIDS in Spain. We also seek to discover the strategies and tactics that they employ to avoid or attenuate these outcomes. Specifically, we will describe a form of auto-exclusion we found to describe a number of the HIV positive youth with whom we worked.

In the course of our interviews we sought to understand these facts and circumstances but, above all, the focus has been on how these youth experienced and conceptualized their disease and how they have acted to reduce their exposure to social rejection. Unlike the cases of young people infected by unsafe sex, knowledge of diagnosis does not substantially and immediately alter the medical aspects of the lifestyle of an adolescent who contracted HIV at birth, but only learned of it subsequently. These patients are not only accustomed to the routines of the hospital and medication regimens, their early experiences have been marked deeply by the disease and its treatment. Yet, at the critical moment of transition to adolescence, they abruptly encounter the full impact of the social significance of HIV.

Method

This paper presents only very preliminary findings of an ethnographic study using the consensus model as theoretical and methodological reference. Our general purpose is to identify and describe any cultural models circulating among Spanish youth who have been infected with HIV through vertical transmission from mother to child at birth, relevant to processes of social and educational exclusion. Our fieldwork took place initially at a major hospital in southern Spain in which 67 children (30 males and 37 females) have been diagnosed and treated for HIV since 1984. Of them 44 have so far survived. Up to now we have interviewed 20 patients associated with this hospital plus three more from a hospital in Madrid. Their ages range from 15 to 24 years, with most over 18 years. Seven close relatives of patients have also been interviewed. Therefore, a total of30 people were interviewed between October 2010 and February 2013. Only youths who are aware of their HIV diagnosis were included in this study; most participants were informed of their status between the ages of 12 and 15. Except for three adopted children, all come from families characterized by various combinations of drug addiction, prostitution, crime and poverty. Many are orphans whose parents died of AIDS and most have suffered extremely tumultuous childhoods in urban slums. The families of many of these children have simply disintegrated. Often, their parents lived marginal and chaotic lives before dying young. In other cases some parents abandoned their children, giving them up for adoption or turning them over to the authorities who placed them in state-run centers for the protection of minors. More often, however, close relatives, typically matrilateral aunts or grandmothers, took charge of these children and embraced them often to the point of overprotection.

Expected Outcomes

We describe several common themes emerging from the stories that thirty Spanish youths have to tell of the socially excluding consequences of HIV/AIDS. While there is significant individual variability, there are also some common cultural and social responses to the stigmatizing power of HIV/AIDS in Spanish society. In the poor neighborhoods where these children often live, social marginality is the norm. Serious problems with drugs, incarceration, and failure at school are all part of the social landscape. In other words, these collective ‘disorders’ are both widespread and culturally understandable in those blighted urban neighborhoods. But HIV/AIDS, despite its longstanding presence in these communities, persists in being construed as a radical difference, as a stigma of the most profound kind. The young people in our sample have experienced significant educational problems. Most have left school without completing basic compulsory education. In several cases, frequent absences have contributed to their leaving school for fear that others would discover their medical condition. Only two teens revealed their HIV status to school officials. This precipitated the youth’s permanent withdrawal from school. By becoming a chronic disease, the medical profile of HIV/AIDS has changed radically, but its social image has not undergone a similar transformation. Hence, the infected jealously guard their secret, resorting to three typical actions: (1) the development of daily rituals of concealment, (2) the minimization of the social circle of trust and (3) the editing of personal biography in an effort to move it closer to "normality". All three tactics require isolating the disease, confining it strictly to an intimate space inaccessible to the observation of outsiders.

References

Abadía-Barrero, C. & Castro, A. (2006) Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Social Science & Medicine, 62, 1219–1228. Battles, H. & Wiener, L. (2002) From adolescence trough young adulthood: Psychosocial adjustment associated with long–term survival of HIV. Journal of Adolescent Health, 30, 161-168. Bauermeister, J. E., Elkington, K., Brackis-Cott, E., Dolezal, C. & Mellins, C. A. (2009): Sexual Behavior and Perceived Peer Norms: Comparing Perinatally Hiv-infected and Hiv-affected Youth. Journal of Youth and Adolescence, 38, 1110–1122 Biggs, N. (2012) Education and HIV/AIDS. New York, Continuum. Cardoso de Paula, C., Evangelista Cabral, I. & de Oliveira Souza, I. E. (2011) O (não)dito da AIDS no cotidiano de transição da infância para a adolescência. Revista Brasileira da Enfermagem, 64(4), pp. 658-64. De José, M. I. et al (2013) A new tool for the paediatric HIV research: general data from the Cohort of the Spanish Paediatric HIV Network (CoRISpe). BMC Infectious Diseases, 13 (2), doi: 10.1186/1471-2334-13-2. EDUSIDA (2013): Hacia respuestas globales del sector de la educación. Paris, UNESCO. http://unesdoc.unesco.org/images/0015/001583/158309S.pdf González-Faraco, J. C. et al. (2012) El SIDA, una epidemia global: estigma y exclusión social y educativa en adolescentes y jóvenes con VIH. In González Faraco, J. C. et al. (eds.) Identidades Culturales y Educación en la Sociedad Mundial. Huelva (Spain), Servicio de Publicaciones de la Universidad de Huelva. González-Faraco; J. Carlos, Iglesias, I., Jiménez, J. R. & Pérez Moreno, H. M. (2013) La cooperación internacional en la lucha contra el VIH/SIDA: programas sociales y educativos de organismos internacionales. In Lázaro Lorente, L: M. (ed.) Lecturas de Educación Comparada e Internacional. Valencia (Spain), Universidad de Valencia. Merzel, Ch. Vandevanter, N. & Irvine, M. (2008) Adherence to Antiretroviral Therapy among Older Children and Adolescents with HIV: A Qualitative Study of Psychosocial Contexts. AIDS Patient Care and STDs, 22 (12), 977-987. Michaud, P. A. et al. (2009): To Say or Not to Say: A Qualitative Study on the Disclosure of Their Condition by Human Immunodeficiency Virus–Positive Adolescents. Journal of Adolescent Health, 44, 356–362 Persson, A. & Newman, N. (2012): When HIV-Positive Children Grow Up: A Critical Analysis of the Transition Literature in Developed Countries. Qualitative Health Research, 22 (5), 656-667. UNAIDS/ONUSIDA (2013): Global Report. UNAIDS Report on the Global AIDS Epidemic 2013. Joint United Nations Programme on HIV/AIDS, UNAIDS.

Author Information

Juan Carlos González-Faraco (presenting / submitting)

Universidad de Huelva, Spain

Inmaculada Iglesias Villarán (presenting)

University of Huelva

Education

Huelva, Andalucía

Antonio Luzon

University of Granada

Pedagogie

GRANADA

Search the ECER Programme

Search for keywords and phrases in "Text Search"
Restrict in which part of the abstracts to search in "Where to search"
Search for authors and in the respective field.
For planning your conference attendance you may want to use the conference app, which will be issued some weeks before the conference
If you are a session chair, best look up your chairing duties in the conference system (Conftool) or the app.