“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.

Pregnant Women’s Experiences during Hurricane Maria: Impact, Personal Meaning, and Health Care Needs

“…The interviews were conducted in Spanish, the native language of the study participants and the researchers, by the first author (GSS). GSS is a Hispanic female researcher with an educational background in public health and has worked with vulnerable populations such as sex workers, drug users, youth, and people living with an HIV diagnosis [15][16][17][18]. She has conducted and been involved in various qualitative research studies and had has formal and informal training in conducting qualitative interviews and focus groups.…”

HIV normalization message and its implication on the lives of perinatally HIV-infected youth in Puerto Rico

“…This article specifically analyses the normalization messages that emerged in the narrative of the study participants. Other topics that emerged are published elsewhere . Actual quotes from the study participants (meaning units), under fictional names, are presented to support the results.…”

Transition From Pediatric and Adolescent HIV Care to Adult HIV Care and the Patient–Provider Relationship: A Qualitative Metasynthesis

“…Results of the analysis (Table 2) revealed an overarching theme describing the importance of a strong reciprocal attachment and trusting relationship between the patients and their pediatric care providers (DeSouza et al, 2019; Fair et al, 2012; Fair et al, 2011; Hussen et al, 2015; Machado et al, 2016; Newman et al, 2016; Philbin, Tanner, Chambers, et al, 2017; Philbin, Tanner, Ma, et al, 2017; Pinzon-Iregui et al, 2017; Sharma et al, 2014; Silva-Suarez et al, 2015; Vijayan et al, 2009) . Within this major theme, five primary subthemes related to the PPR in the context of pediatric HIV care and transition were derived.…”

“…To explore the impact of the PPR on the transition of ALWH to adult HIV care, only qualitative studies were retained to keep the methodology pure. The targeted search strategy resulted in a total of 14 qualitative studies (Figure 1), of which 7 were from the United States (Fair et al, 2012; Fair et al, 2011; Hussen et al, 2015; Philbin, Tanner, Chambers, et al, 2017; Philbin, Tanner, Ma, et al, 2017; Sharma et al, 2014; Vijayan et al, 2009) and one each from Australia, Brazil, Dominican Republic, India, Jamaica, Puerto Rico, and Tanzania (DeSouza et al, 2019; Machado et al, 2016; Masese et al, 2019; Newman et al, 2016; Pinzon-Iregui et al, 2017; Silva-Suarez et al, 2015; Verma & Sahay, 2019; Table 1).…”

“…Many of the early studies examining transition from pediatric to adult HIV care used qualitative methods in an attempt to understand the barriers and develop transition plans (DeSouza et al, 2019; Fair et al, 2012; Fair et al, 2011; Hussen et al, 2015; Machado et al, 2016; Newman et al, 2014; Newman et al, 2016; Philbin, Tanner, Chambers, et al, 2017; Philbin, Tanner, Ma, et al, 2017; Pinzon-Iregui et al, 2017; Sharma et al, 2014; Silva-Suarez et al, 2015; Vijayan et al, 2009). Some of these incorporated mixed methods (Fair et al, 2012; Lolekha et al, 2017; Wiener et al, 2007, 2011).…”