Family interaction and social stigmatization of people living with HIV and AIDS in Puerto Rico

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.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.