“That’s True Love:” Lived Experiences of Puerto Rican Perinatally HIV-Infected Youth within Their Families’ Context

Georgina Silva-Suárez, Elena Bastida, Silvia E. Rabionet, Consuelo Beck-Sagué, Irma Febo and Carmen D. Zorrilla
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Georgina Silva-Suárez: Department of Sociobehavioral and Administrative Pharmacy, Nova Southeastern University, 00926 San Juan, Puerto Rico
Elena Bastida: Department of Health Promotion and Disease Prevention, Florida International University, Miami, FL 33199, USA
Silvia E. Rabionet: Department of Sociobehavioral and Administrative Pharmacy, Nova Southeastern University, 33314, Fort Lauderdale, FL & Department of Social Science, School of Public Health, University of Puerto Rico, Medical Sciences Campus, 00921 San Juan, Puerto Rico
Consuelo Beck-Sagué: Department of Health Promotion and Disease Prevention, Florida International University, Miami, FL 33199, USA
Irma Febo: Department of Pediatrics, University of Puerto Rico, Medical Sciences Campus, 00921 San Juan, Puerto Rico
Carmen D. Zorrilla: Department of Obstetrics and Gynecology, University of Puerto Rico, Medical Sciences Campus, 00921 San Juan, Puerto Rico

IJERPH, 2015, vol. 13, issue 1, 1-15

Abstract: The burden of HIV affects not only HIV-infected patients but also their families and caregivers. It is also known that family support is crucial for people living with HIV. A qualitative study was conducted to explore the life experiences, within the family context, of perinatally HIV-infected (pHIV-I) youth in Puerto Rico. Twenty in-depth interviews were performed and audio-recorded. Within the family context, study participants experienced acceptance, love and support but also stigma and discrimination. They reported that family is an essential component in their lives and treatment. Losing one or both parents at a young age was considered more difficult than having HIV. Most participants who lost their parents lived with other family members. This was a challenging situation for both pHIV-I youth and their caregivers. Participants described their healthcare providers as part of their families and would like to keep in touch as they transition to adult care. Despite the challenges, participants expressed a desire to have children. Services targeted to this population should stress social support, incorporate family members into the medical process, provide special guidance and support while transitioning to adult care, and provide them with the latest information regarding HIV and reproductive options.

Keywords: adolescents; HIV/AIDS; death/bereavement; parent/child relations; family; qualitative (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2015
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