This article aims to describe the manifestation of HIV stigma in the family context and how this could impact the life of people living with HIV (PLWH). The data derive from a larger phenomenological study addressing manifestations of stigma in the lives of PLWH when interacting with the health sector. Nine focus groups were carried out in 2011 with PLWH (N=67). Eight themes emerged from the qualitative analysis. For the purpose of this article, we focus on the categories related to family dynamics: the negotiation of disclosure and non-disclosure, fear of the HIV virus and family dynamics, and life as a couple. Socio demographic information showed that 53% were between 44 to 54 years old, 80% were single, 51% were male, 42% did not complete a high school diploma, 82% were unemployed. Also, 82% described themselves as religious persons and 41% had lived with HIV for 10 years or less. Qualitative results show stigma is still present in the family context. PLWH experience fear of disclosure, discrimination, avoid initiating families or couple relationships, experience physical and verbal abuse from relatives, and even separation from other family members. After more than 30 years of the ongoing HIV epidemic, stigma is still manifested by family members with detrimental social and medical implications for PLWH. Research and educational efforts should continue addressing manifestations of stigma among family members of PLWH.
Ellos de la calle, nosotras de la casa: el discurso patriarcal y las experiencias de mujeres que viven con el VIH/SIDA en Puerto Rico 1 Resumen Este trabajo busca comprender cómo el discurso patriarcal podría matizar los procesos de estigmatización en las mujeres puertorriqueñas con VIH/SIDA y cómo podría incidir negativamente en la adherencia al tratamiento. Se realizó un análisis secundario de información de un estudio sobre manifestaciones comportamentales del estigma con diseño mixto secuencial. Se analizaron cuatro grupos focales de mujeres puertorriqueñas con VIH/SIDA (n = 32). Del análisis se identificaron verbalizaciones relacionadas con: a) el papel de la maternidad; b) el acceso a servicios ginecológicos; c) la responsabilidad de la transmisión del VIH/SIDA a la mujer, viéndose el VIH/SIDA como castigo para la mujer puertorriqueña con VIH/SIDA debido a la promiscuidad de otras mujeres vinculadas a sus compañeros. Se reflejaron diferentes grados de estigmatización entre las mujeres puertorriqueñas con VIH/SIDA, y d) experiencias estigmatizantes de la mujer puertorriqueña con VIH/SIDA con profesionales de la salud, quienes las culpabilizan por no utilizar protección en las relaciones heterosexuales. El estigma estuvo matizado por la vía de infección, siendo más relevante aquellas vinculadas al discurso patriarcal. Las verbalizaciones apuntan al discurso de un VIH/SIDA con cuerpo femenino, con resultados nocivos para «aquellas de la casa», contagiadas por «aquellas que no están en la casa». Esta investiga-
Cuadernos de Trabajo Social
Este es un artículo de acceso abierto y distribuido bajo los términos de la licencia y políticas de Creative Commons Attribution 4.0 International License.
Este es un artículo de acceso abierto y distribuido bajo los términos de la licencia y políticas de Creative Commons Attribution 4.0 International License
Somos Dign@s
, a collective, composed by students, professors, and human rights activists, concerned about the crisis of human rights and civil liberties in Puerto Rico designed a successful national campaign for human rights known as: “Trayecto Dignidad” or “The Journey toward Dignity.” This educational campaign emulated the Freedom Riders initiative of the 1960s. Throughout this article, we discuss the participatory action research (PAR) methodology designed by
Somos Dign@s
which frames the work of our Trayecto Dignidad campaign. Our methodology is based on the theoretical approaches of De Sousa-Santos (2002) and his conceptualization of human rights as having to rise through a process of “Globalization from below”; that is, a process of globalization that allows oppressed classes to advocate for their human rights. Five campaigns have been implemented since 2011. Some results have shown the need: (1) to continue educating about human and civil rights; (2) to educate and reinforce public policies to address discrimination based on race, social class, and gender particularly in the work setting; (3) to universalize health services; (4) to conduct a debt audit and advocate for the right of people of Puerto Rico to self-determination (UN Resolution 1514 XV); and (5) to integrate a public policy education based on gender perspective on schools and declare the State of Emergency for the femicides.
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