08 SES 05 A, Health, Schools and Inclusion
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.
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.
- 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.