Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

The effectiveness of antiretroviral therapy (ART) transformed the pediatric HIV epidemic. The disease changed significantly over the course of three decades: while early in the epidemic it was almost always fatal, it has become a chronic condition. This study examined how perinatally-infected youth experience the impact of HIV in their lives. A qualitative study using interpretative phenomenological analysis (IPA) was conducted. Twenty in-depth interviews were carried out among 12 women and 8 men aged 18 to 30 years in Puerto Rico. These were conducted in Spanish, audio-recorded, transcribed and translated into English. While narrating their experiences, participants were interpreting what the situation meant to them and how they make sense of it. Three topics emerged: (1) perception and response to treatment and illness, particularly their lived experiences with ART; (2) disclosure experiences; and (3) family matters. Most participants challenged their therapy, in most cases to force their caregivers to disclose their status. Problems with adherence were attributed to busy schedules or forgetfulness. Participants experienced the disfiguring adverse effects of ART, which they endured for years without being informed that ART was the cause of these. Participants’ experiences with disclosure demonstrated the importance of validating them as individuals capable of managing their health. The paternalistic approach of withholding their diagnosis to spare them suffering resulted in increased anxiety. Participants acknowledged the difficulties of revealing their HIV status to their partners. They referred to family and friends as essential in coping with HIV. However, some encountered discrimination and stigma within their families. Participants who had suffered the loss of their parents found other parental figures such as adoptive parents or other family members. Most participants expressed a desire to have children. Perinatally HIV-infected youth will require health services for the rest of their lives. The adult health care into which they transition should consider their needs and journey. Services should consider including family members. This study underscores the need for improved access to mental health services. It is also essential to transcend medical treatment and develop a broader perspective of health care. Health care services should include reproductive decision-making counselling services.

Pilot study: Intranet communication among chronically ill hospitalized pediatric individuals

Hospitalization can be a very stressful experience, especially for children. With the use of technology, Intranet communication can be successful in obtaining interaction that these individuals lack to accomplish a positive adjustment to the hospital setting. The purpose of this exploratory, pilot project is to examine the use of networking chronically ill, hospitalized children with other hospitalized chronically ill children through Intranet communication.^ A target population of chronically ill hospitalized children, in at least Piaget's concrete operational stage, was asked to use the Intranet system to network with other chronically ill hospitalized children during their hospital stay, for one month or until discharge. The length of time of usage was recorded on a log sheet, and questionnaires were filled out at the end of the study.^ Statistical analysis was utilized to determine frequency of network usage, duration, demographics, and the impact on hospitalization. Results indicated that Intranet communication between chronically ill hospitalized children was utilized by the participants from 7-15 age groups; and had a positive impact on their hospitalization. ^

The body matters: Understanding social differences in mental health

This doctoral dissertation illuminates the salience of body image to sociological investigations of mental health. It is argued that concerns over body-appearance evident in America embody a dimension of distress over the physical self that may be appropriately considered a mental health outcome, called body dysphoria. Using cross-sectional data on 1,183 young adults comprising Hispanic, African American, and non-Hispanic white males and females from varying social classes, a valid and reliable measure of body dysphoria is developed and demonstrated to be a distinct dimension of psychological distress. ^ From the standpoint of the sociology of mental health, the social distribution of body dysphoria makes known individual consequences of the stratified arrangements of society based on gender, race/ethnicity, and social class. Results reveal significant social differences in body dysphoria that are both consistent with and contrary to clinical studies attributing eating disorders to white, upper-class females. Body dysphoria is substantially greater among females supporting that unrealistic cultural ideals and standards of body-appearance remain disproportionately targeted at females in the development and presentation of self. Compared to non-Hispanic whites, Hispanics exhibit higher average levels of body dysphoria while African Americans exhibit lower levels of comparable proportion. The question is addressed whether identification with the dominant (white) culture influences distress over body-appearance among racial/ethnic minorities. A small inverse association is revealed between social class origin and body dysphoria suggesting that individuals from lower social class backgrounds are as greatly affected by body image concerns generally presumed to preoccupy upper social classes. ^ The stress process is a widely used theoretical paradigm for explaining structurally driven social differences in mental health outcomes. New evidence is introduced that the stress process may contribute to understanding body image problems. Regression analyses reveal that stress exposure has a significant positive association with body dysphoria that is mediated by varying psychosocial resources. Overall, the stress process explains the effects of social class origin and African American race/ethnicity on body dysphoria but does not account for the larger effects of being female or Hispanic. ^

Academic orientations of African -American adolescents in Miami-Dade County

The purpose of this research was to answer the following research questions: (a) how high-achieving African-Americans maintain a “racefull” Black identity; (b) how African-American identity affects academic orientation and achievement; (c) how the school's ethnic composition affects African-American students' identity; and (d) how family structure, specifically living in female single-parent households, affects academic orientation and achievement. ^ The data were gathered in an inner-city high school in Miami, Florida. Participants were African-American adolescents, males and females, who started their first-year of high school in the fall of 1995 until their graduation in June 1999. The number of students in the sample varied from 27 students at the beginning of the project to 24 students at the time of graduation. ^ Data were gathered through intensive ethnographic field work, which involved direct participant observation of students in natural contexts; in-depth interviewing of students, peers, teachers, and families; open-ended classroom discussions on matters about the research; and focus groups. Data on demographics, levels of self-esteem and depression, hours spent doing homework, family help with school work, aspirations, and other factors were gained through a survey. ^ African-Americans in this high school developed a racefull persona and still embraced education. They did not need to be raceless to succeed. The ethnic composition of the school where these students were a minority within a minority school resulted in their developing reactive ethnicity formation. Family structure did not affect academic orientation. What made a difference in these students lives were parental support and family ties, which affected their academic orientation. ^