Living positive: Life in community among Puerto Rican men living with HIV in Boston

Negative experiences of stigmatization, discrimination, and rejection are common among people living with HIV in the United States, and particularly when they are also members of a minority group. Some three decades after the first cases of AIDS were identified, people infected with HIV continue to be perceived and characterized negatively. While an HIV/AIDS diagnosis is typically associated with negativity, this study investigates the extent to which collective experiences among HIV-positive people result in healthy responses and positive social adjustment. This study is focused on the ways in which HIV-positive Puerto Rican men in Boston live positive despite being diagnosed with HIV. Rather than wrapping themselves in the social stigma of HIV and the isolation that entails, they participate in processes that affirm themselves and their peers. In so doing, they help generate both healthy and meaningful lives for themselves and others. The study examines the process in which Puerto Rican men living with HIV in Boston participate, promote, and reaffirm an HIV community, la comunidad, as a social entity with a unique culture and identity. This study also investigates how this community influences, supports, and encourages the adoption of positive transformations for living long term with HIV. On the basis of nine months of field research, this qualitative study employed both focus groups and interviews with fifty HIV-positive Puerto Rican men in Boston. These men were recruited, using convenience sampling, from different community-based organizations (CBOs) that provide HIV/AIDS services in Boston. The study finds that HIV-positive Puerto Rican men in Boston build community, not in response to social exclusion, but built on shared positive practices and strategies for living healthy with HIV. These men come together to negotiate and form a unique cultural community expressed in norms, beliefs, and practices that, although centered on HIV, are designed for living healthy. These expressions reaffirm a sense of community in everyday settings and transform the lives of these men with positive behaviors and healthy lifestyles. The findings reveal that this transformation takes place in the context of a community, with the support, encouragement, and at times, policing of others. La comunidad is where the lives of these men are transformed as they learn, adopt, and experience living positive with HIV.

A youth vision of the city: The socio-spatial lives and exclusion of street girls in Bogota, Colombia

This dissertation documents the everyday lives and spaces of a population of youth typically constructed as out of place, and the broader urban context in which they are rendered as such. Thirty-three female and transgender street youth participated in the development of this youth-based participatory action research (YPAR) project utilizing geo-ethnographic methods, auto-photography, and archival research throughout a six-phase, eighteen-month research process in Bogotá, Colombia. ^ This dissertation details the participatory writing process that enabled the YPAR research team to destabilize dominant representations of both street girls and urban space and the participatory mapping process that enabled the development of a youth vision of the city through cartographic images. The maps display individual and aggregate spatial data indicating trends within and making comparisons between three subgroups of the research population according to nine spatial variables. These spatial data, coupled with photographic and ethnographic data, substantiate that street girls’ mobilities and activity spaces intersect with and are altered by state-sponsored urban renewal projects and paramilitary-led social cleansing killings, both efforts to clean up Bogotá by purging the city center of deviant populations and places. ^ Advancing an ethical approach to conducting research with excluded populations, this dissertation argues for the enactment of critical field praxis and care ethics within a YPAR framework to incorporate young people as principal research actors rather than merely voices represented in adultist academic discourse. Interjection of considerations of space, gender, and participation into the study of street youth produce new ways of envisioning the city and the role of young people in research. Instead of seeing the city from a panoptic view, Bogotá is revealed through the eyes of street youth who participated in the construction and feminist visualization of a new cartography and counter-map of the city grounded in embodied, situated praxis. This dissertation presents a socially responsible approach to conducting action-research with high-risk youth by documenting how street girls reclaim their right to the city on paper and in practice; through maps of their everyday exclusion in Bogotá followed by activism to fight against it.^

Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.