We used grounded theory in semi-structured interviews with 32 persons living with HIV (PLWH) in Barcelona, Spain, and found that PLWH live with constant suffering, a core category combining four realities: I need help; My life is constantly controlled; I have a new imposed life; and I have an uncertain reality. Participants described being constantly controlled by health policies and medications. They thought their lives were in the hands of others and that a new life, characterized by the constant fear of stigma, had been imposed on them. They felt they were losing freedom and vitality, as many questions remained unanswered, causing uncertainty related to health and public life. Emotional help was obtained mainly from peers and social networks. Our emergent theory shows a disruptive experience, with serious consequences to individual and social development. Health care has to focus on the real needs of PLWH to reduce suffering and uncertainty.
A principios de 1980 la irrupción del VIH / sida generó miedos, discriminación y estigmatización hacia personas y colectivos afectados. Como respuesta, aparecieron movimientos activistas para defender los derechos de las personas con VIH / sida y promover la introducción de tratamientos efectivos y accesibles. Tras más de tres décadas de epidemia, se han filmado varias películas sobre dichos movimientos. Sin embargo, son escasos los estudios que analicen el valor de la participación ciudadana en la lucha del VIH / sida dentro del cine. El objetivo del artículo es describir y analizar las películas más representativas de este fenómeno. Se analizan How to survive a plague, Larry Kramer In Love and Anger, The Normal Heart, 120 battements par minute y Dallas Buyers Club y se discuten con otras relacionadas. Estas películas nos muestran la fuerza de los movimientos activistas para promover la implicación de los gobiernos, las farmacéuticas y los profesionales en la lucha del VIH / sida. Por ello, se proponen unos objetivos para su debate en entornos docentes de las ciencias sociales y de la salud, para continuar apoyando el compromiso y las estrategias de la sociedad civil en los avances de la investigación, los autocuidados y los tratamientos del VIH / sida. Palabras clave: sida; activismo político; investigación cualitativa; estigma social; docencia. Summary Early 80´s the emergence of VIH generated popular fear coupled with discrimination and stigmatization for patients. In this context, HIV / AIDS activist movements emerged to establish and protect patients´ rights and foster the development of effective and affordable treatments.
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