Resumen de Soporte emocional y vivencias del VIH: impactos en varones y mujeres mexicanos desde un enfoque de género

Lourdes Campero, Marta Caballero, Tamil Kendall, Cristina Herrera, Angel Zarco

• español

  Introducción Aun cuando las cifras de infección en México son mayores entre hombres que en mujeres (71.5 y 28.5% respectivamente), el análisis de la epidemia desde un enfoque de género arroja luz sobre posibles similitudes y diferencias en la experiencia de vivir con VIH/SIDA para ambos.

  El interés del presente estudio se centró en identificar diferencias de género en el soporte emocional y social proveniente de las redes de apoyo de estas personas. En este artículo nos referiremos a dos situaciones particulares: primero, la percepción de la manera en que se adquirió el virus, lo cual sirve como ejemplo de la construcción social del género que impacto en las emociones y vivencias de la enfermedad según se sea mujer u hombre, ysegundo, el proceso de transformación por el que las personas con VIH reorganizan sus necesidades y circunstancias después del diagnóstico.

  Material y métodos Se realizaron entrevistas en profundidad a personas que viven con VIH/SIDA (20 hombres y 20 mujeres), en estado ambulatorio y con más de un año de diagnóstico, en cuatro Estados de la República Mexicana (Morelos, Guerrero, Estado de México y el Distrito Federal), todas ellas autodefinidas como heterosexuales. La información se analizó de manera inductiva usando elementos de la teoría fundamentada. Con base en una tipología de códigos y definiciones creada a partir de la guía de entrevista y reconformada a lo largo del proceso de codificación, se organizó la información por temas emergentes.

  Resultados La mayor parte de los hombres tendió a recibir el diagnóstico de VIH como algo «sospechado», mientras que la mayoría de las mujeres como «inimaginable», lo cual se relaciona con normas de género que limitan la capacidad de las personas para actuar frente al VIH.

  Mientras que la mayoría de las mujeres informó tener menos parejas sexuales y más estables a lo largo de su vida, los hombres reportaron mayor número de encuentros sexuales ocasionales, con hombres o mujeres, incluso cuando vivían con una pareja estable.

  Aunque en algunos casos no había certeza sobre quién transmitió el virus a quién, en su mayoría los hombres asumían la responsabilidad de haber infectado a sus parejas. Lo anterior desencadenaba procesos diferenciados de manejo de la información acerca del diagnóstico, de sentimientos de culpa o resentimiento, así como del estado emocional con que unos y otras manejaban su nueva condición de seropositivos(as).

  El contacto con redes sociales alternativas, que permiten re-significar las normas sociales y estructuras rígidas de género, puede tener efectos positivos para hombres y mujeres con VIH.

  La participación en grupos de autoapoyo y la oportunidad de relacionarse con otras personas que viven con VIH/SI DA constituyó para hombres y mujeres la posibilidad de enfrentar la enfermedad deforma menos solitaria, de acceder a información veraz, a mejores condiciones de vida y de atención en salud. Es decir, su participación en grupos posibilitó tomar la enfermedad en sus manos dándoles la oportunidad de modificar sus relaciones personales y estructuras de género.

  Discusión Los efectos positivos así como las limitaciones de los grupos y redes sociales de apoyo a hombres y mujeres con VIH, muestran la necesidad de establecer programas y políticas de prevención y atención bajo una perspectiva de género y de derechos humanos, que entre otros beneficios ayude a incrementar la calidad de vida de estas personas.

• English

  Introduction The Mexican HIV epidemic is characterized by affecting a greater number of men than women, with the bulk of infections occurring among men who have sex with men, and women being exposed primarily through their stable male partner. Since the beginning of the epidemic, the proportion of women with HIV has increased and the most recent estimates indicate that one out of every four Mexicans with HIV is a woman. Analyzing the emotional and psychological impact of HIV from a gender perspective highlights that while there are similarities in how Mexican men and women experience the HIV diagnosis and adjust to life with HIV, there are also important differences. This study sought to understand how gender influences the type of material and emotional support received by Mexican men and women with HIV. In this article, we discuss the ramifications of gender in two specific situations: first, the reaction to the HIVdiagnosis and related perceptions about how infection occurred; and second, the process of learning to live with the virus. We argue that social constructions of gender are determinant for shaping personal experiences, expectations and roles, as well as for creating differential access to the material, social and symbolic resources necessary for personal development among people with HIV. Dominant Mexican gender norms make men and women more vulnerable to HIV infection and also limit access to resources for improving quality of life post-diagnosis.

  Methods This article draws on in-depth semi-structured interviews with 20 adult men and 20 adult women with HIV from Morelos, Guerrero, Mexico City and Mexico State carried out during 2003-2004. Inclusion criteria for participation in the study were having known the HIV-diagnosis for more than a year, self-defining as heterosexual, and being ambulatory. The authors completed an inductive analysis, drawing on the basic elements of Grounded Theory proposed by Glaser and Straus in which data collection and analysis mutually inform the emergence of central themes. The research protocol was approved by the Research, Biosecurity, and Ethics review boards of the Mexican National Institute of Public Health. All research participants completed written informed consent.

  Results and discussion While all of the people with HIV interviewed lived an emotional process fraught with sadness and uncertainty as they assimilated the HIV diagnosis, most men «suspected» that they could be HIV-positive before the diagnosis while for most women the HIV diagnosis was «unimaginable». This finding relates directly to gendered constructions of sexuality in Mexico. Congruent with epidemiological findings, most of our women research participants were infected in the context of a stable relationship where they had been sexually monogamous. Consequently, they experienced the diagnosis as a betrayal which shook the foundations of their identity, their relationship and sometimes provoked critical reflection on the dominant social narratives about the rewards of being a «good woman». For other women, the threat recognition of their male partner's sexual infidelity posed to the relationship and to their sense of self made continued avoidance of the evidence preferable. The dominant narratives of romantic love and fidelity which have been inculcated in Mexican women contribute to their vulnerability to HIV infection by encouraging them to deny, or at least remain silent about men's extramarital sexual relationships.

  Social constructions of sexuality also put men at risk of HIV infection. Men had internalized cultural messages about «how to be men»which included having multiplesexual partners and using alcohol and drugs. Among our research participants, the combination of alcohol or drugs with sex was frequently the context for the highest risk behaviour for acquiring HIV, such as unprotected sex between men. Many men described the HIVdiagnosis as confirming their fears about being infected or perceived the diagnosis as a logical outcome of their «voracious» and socially legitimated sexual risk-taking behaviour and substance use. In reflecting on how gender norms had contributed to their HIV infection, men expressed regret and confusion, and when they had exposed their female partner, guilt about harming an «innocent» and «defenseless» woman. Transformation of dominant constructions of heterosexuality and an ethics of mutual honesty and responsibility in the context of greater equality between men and women is clearly needed to prevent new HIV infections and to support resolution of negative feelings about the diagnosis and route of infection.

  Similarly, a gender divide was identified in the realm of social and emotional support. Women continued to «care for others» after the diagnosis, providing emotional support to their male partner and family, and if they were widowed or separated, assuming the breadwinner role. Admitting feelings of sadness or pain and asking for help are culturally constructed as feminine attributes, and doing so challenges men's socially constructed gender role. However, the fact that men are not socialized to solicit emotional and practical support does not imply that it is not available. The gendered social structure is enacted in such a way that women provide support without men asking.

  Men with HIV continued to be cared for by women post-diagnosis; if men were widowed or separated, female friends or family members provided practical and emotional support. Gendered expectations about the respective roles of men and women also limited some men's access to social support because of the belief that they could'not begin a new affective relationship because they had «nothing to offer» without economic earning power.

  For both men and women, learning to live with HIV was a process. In general, the more time had passed since the diagnosis the more likely it was for people with HIV to receive specialized medical care, have access to accurate information about HIV disease, and to report social support from family, friends and other people with HIV. Peer relationships in support groups and civil society networks were a catalyst for personal transformation and improving quality of life post-diagnosis. Men and women who expressed more traditional gender roles experienced higher barriers to support group participation. The men who most fervently defended their heterosexual identity were uncomfortable with the predominantly homosexual composition of support groups. Women who confined themselves to the homemaker role and did not participate in support groups continued to perceive themselves as victims, were treated as dependents within their social networks, and were less able to overcome negative feelings associated with the diagnosis. Other women with HIV used support groups as a resource for reconstructing their lives and social networks, and some became advocates for the rights of women and people with HIV.

  While women framed their HIV activism in the language of maternal caretaking, they also recognized and advocated for gender-appropriate responses to women's treatment, care and support needs. For both men and women, support group participation increased their access to information and improved their capacity to make decisions about sharing the diagnosis. While not all support groups offer ¡deal conditions nor are all social networks truly supportive of people with HIV, we can conclude from this study that in general men and women with HIV who cannot or choose not to participate in support groups have fewer opportunities for the self-reflection that promotes assimilation of the HIV diagnosis and fewer resources for living with HIV. Men and women with HIV who participate in HIV-related social networks are motivated to learn about and acknowledge a wide diversity of life histories and to share their lives with others, resulting in analysis of social stereotypes and prejudices. When men and women with HIV assume social leadership roles, they are better able to assimilate the diagnosis and better prepared to take a proactive role in their treatment, care and quality of life. Participation in civil society networks contributed to a gradual recognition of the human rights of people with HIV, causing people to challenge HIV-related stigma. The positive effects and limitations of support groups and social networks for people with HIV, and in particular the barriers which traditional gender roles posed to participation, suggest the need to create national prevention and care programmes which explicitly adopt and implement a gender perspective and a human rights approach