title: "That's True Love:" Lived Experiences of Puerto Rican Perinatally HIV-Infected Youth within Their Families' Context.
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.
authors.affiliation: Department of Sociobehavioral and Administrative Pharmacy, Nova Southeastern University, 00926 San Juan, Puerto Rico. gsilvasuar@nova.edu.
authors.forename: Georgina
authors.initials: G
authors.lastname: Silva-Suárez
authors.affiliation: Department of Health Promotion and Disease Prevention, Florida International University, Miami, FL 33199, USA. ebastida@fiu.edu.
authors.forename: Elena
authors.initials: E
authors.lastname: Bastida
authors.affiliation: Department of Sociobehavioral and Administrative Pharmacy, Nova Southeastern University, 33314, Fort Lauderdale, FL &amp; Department of Social Science, School of Public Health, University of Puerto Rico, Medical Sciences Campus, 00921 San Juan, Puerto Rico. rabionet@nova.edu.
authors.forename: Silvia E
authors.initials: SE
authors.lastname: Rabionet
authors.affiliation: Department of Health Promotion and Disease Prevention, Florida International University, Miami, FL 33199, USA. cbecksag@fiu.edu.
authors.forename: Consuelo
authors.initials: C
authors.lastname: Beck-Sagué
authors.affiliation: Department of Pediatrics, University of Puerto Rico, Medical Sciences Campus, 00921 San Juan, Puerto Rico. irma.febo2@upr.edu.
authors.forename: Irma
authors.initials: I
authors.lastname: Febo
authors.affiliation: Department of Obstetrics and Gynecology, University of Puerto Rico, Medical Sciences Campus, 00921 San Juan, Puerto Rico. carmen.zorrilla@upr.edu.
authors.forename: Carmen D
authors.initials: CD
authors.lastname: Zorrilla
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D015658:HIV Infections / Q000523:psychology*; D006630:Hispanic or Latino / Q000523:psychology*; D006801:Humans; D007231:Infant, Newborn; D018445:Infectious Disease Transmission, Vertical; D008149:Love; D008297:Male; D011647:Puerto Rico; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological; D055815:Young Adult
keywords: HIV/AIDS; adolescents; death/bereavement; family; parent/child relations; qualitative