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.

Health care utilization behavior of elders in a multicultural urban environment

The objective of this research is to determine the influences of social, environmental, behavioral, and economic forces on the health care service utilization of four racial/ethnic groups of non-institutionalized elders in a multicultural urban environment. To address these issues this dissertation examines three intertwined themes of culture, aging, and health, using a sample of elders residing in Miami-Dade County, FL in four racial/ethnic groups: white non-Hispanic; black non-Hispanic English speakers; Cuban; and non-Cuban Hispanic. ^ The research questions were analyzed using both quantitative and qualitative data. Data for the quantitative component uses telephone survey data from the Dade County Needs Assessment. The purpose of this component is to develop a more comprehensive model of elder health care utilization behavior. The qualitative component uses data from focus groups from Dade County Needs Assessment, archival data and a literature review of previous ethnographic research. The purpose of this component is to gain a better understanding of the social construction of the terms “age”' and “aging,” as well as to place issues of health and health care in the lives of elders. ^ The findings raised several important issues. First, just because people share a common chronological age does not mean that they are the same in every other respect. Examining elders as a homogeneous group of users of formal health care services in a community is simplistic. Placing “aging” and “health” in a cultural context is important. My findings confirm that the meaning of “aging” and “old” are socially constructed. Further, the term “aging” is NOT synonymous with ill health or frailty. This was a consistent finding in both the quantitative and qualitative results. ^ While all aging individuals share a mutual orientation toward aging (i.e., biological process), they do not age the same way (i.e., social construction of “aging”). Thus, policymakers and others serving the elder population must be aware of the particular cultural context, as well as the previous life experiences of the individuals that they serve. This analysis documents the importance of culture and geographic community in understanding health care service utilization of elders. ^

An in-depth analysis of original compositions

The purpose of this thesis is two-fold. It presents six original pieces composed and arranged by the author, and it provides a thorough analysis of each. The compositions draw from many different musical genres: contemporary jazz, swing, funk, fusion, soul, neo-soul, and rhythm and blues. The applications of melodic, harmonic, and rhythmic techniques derived from these genres can be found in these original compositions. These compositions are inspired by -- and attempt to narrate --life experiences. Parallels between life and music are drawn and explained. By way of introduction, some information is given regarding the ensemble that first performed these original compositions. The ensemble comprised trumpet, tenor saxophone, keyboards, piano, electric bass, upright acoustic bass, drums, and percussion.

Life and death in the forest: Landscape agency during the Holocaust

To escape certain death during the Nazi regime, approximately eighty thousand terrorized and persecuted Eastern European Jews sought refuge in the forests surrounding their communities. Most often, their forest deaths were the result of Nazi-sponsored activities such as ghetto deportations and hunts for Jewish escapees. However, anti-Semitic partisans, partisan combat, hostile peasants, and environmental elements were also factors contributing to an estimated ninety percent fatality rate. This dissertation explored the role and meaning of forests to these Jewish fugitives. It investigated the bodily and social practices they developed to enhance their odds of survival in the forest landscape. I develop the concept of landscape agency as a response to my research question: What was it like to live and survive (or die) in the forest during the Holocaust? Moreover, it is an approach to theorizing about the humanity of space. Landscape agency builds upon a phenomenological approach to space and place that links landscape and action through bodily practices. This dissertation analyzed the fugitives' actions as functions of various forms of capital, namely economic, cultural and social. The sample included thirteen individuals who were themselves forest fugitives during the Holocaust. Face-face qualitative interviews were conducted from 2004 to 2006. Primary data from these interviews was used extensively to demonstrate the practices utilized in the fugitives' experiences with life and death in the forest. This study concluded that the odds of survival for forest fugitives were enhanced by use of landscape agency.

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.

Self-Identified Capabilities and Experiences with Mathematics of Adults Who Have Taken a Developmental Algebra Course

Some were born to do math, some persevered past fearful environments, while others withdrew. In this qualitative study, adults describe life with algebra and the meaning they sought. For all, pedagogy was critical, either positively or negatively; and all found salvation in intervention.

A comprehensive assessment of self -report experiences of adoptive parents of special needs children in Florida

Adoption of special needs children is now seen as a life long event whereby the adoptive child and family have unique needs. The need for postplacement resources throughout the life cycle of the adoption process is evident. This exploratory-descriptive research employed a random stratified cross-sectional design. The purpose of the study was to describe, identify, examine, and assess the relative influence of identified empirically and conceptually relevant variables of self-report experiences of adoptive parents of special needs children. Primary areas of exploration included: (1) adoptive children and families' characteristics, (2) postplacement service needs, utilization and satisfaction, and (3) adoptive parents' perceptions of their adoption experiences. A proportionate stratified random mail survey was used to obtain 474 families who had adopted special needs children from the 15 geographic districts which make up the state adoption social service agency in Florida. A 144-item survey questionnaire was used to collect basic information on demographic data, service provision, and adoption experiences. Four research questions were analyzed to test the effect the predictor variables had on willingness to adopt another special needs child, successful adoption, satisfying experience, and realism about problems. All four research questions revealed that the full model and the child's antecedent and the adoptive parents' intervening variable blocks were significant in explaining the variance in the dependent variables. The child's intervening variables alone were only significant in explaining the variance for one of the dependent variables. The results of the statistical analysis on the fifth research question and the three hypotheses determined that (1) only one postplacement service, crisis intervention, had a statistically significant impact on the adoptive parents' perceived level of satisfaction with the adoption experience; (2) adoptive parents who rate their adoption as successful are more likely to express a desire to adopt another special needs child; (3) the more adequate information on the child the adoptive parents perceived that they had prior to placement, the more they perceived they were realistic about the problems they would encounter; and (4) six specific postplacement services were found to be significant in predicting successful adoptions--crisis intervention, outpatient drug/alcohol treatment, maintenance subsidy, physical therapy, special medical equipment, and family counseling. Implications for the social work field and future research are discussed. ^

Toward an understanding of how individuals overcome challenges to development: A phenomenological study of an inner -city student's attitude toward academic orientation and life

The purpose of this qualitative case study was to gain an understanding of the phenomenon of academic orientation by seeking the insights into an inner-city Haitian-American middle school student's attitudes and world view toward education and life. A phenomenological approach was used in order to explore the way in which Cindy, a minority student, gives meaning to her lived-experiences in terms of her desire to meet academic expectations and her ability to overcome social adversity and/or other risk factors.^ The study attempted to answer the following two research questions: (1) What provides the focus for Cindy's (the subject's) approach to her school work and/or life? (2) What are the processes that give meaning and direction to academic orientation and life for Cindy? In-depth interviewing was the primary method of data collection. In addition, journal and sketchbook entries and school district records were used and classroom observations made.^ The nature of the study to understand lived-experience facilitated the use of the case study method and a phenomenological method of description. Data analysis was conducted by means of an adapted form of the constant comparative approach. Patterns in the data which emerged were coded and categorized according to underlying generative themes. Phenomenological reflection and analysis were used to grasp the experiential structures of Cindy's experience. The following textural themes were identified and confirmed to be essential themes to Cindy's experience: personal challenge to do her best, personal challenge to want to learn, having a sense of determination, being able to think for self, having a disposition to like self, achieving self-respect through performance, seeing a need to help others, being intrinsically motivated, being an independent learner, attending more to academic pressure and less to peer pressure, having motivational catalysts in her life, learning and support opportunities, and having a self-culture. Using Mahrer's humanistic theory of experiencing, Cindy's development was interpreted in terms of her progression through a sequence of developmental plateaus: externalized self, internalized self, and integrating and actualizing self.^ The findings of this study were that Cindy's desire to meet academic expectations is guided by a meaning construction internal frame of reference. High expectations of self in conjunction with other protective factors found in Cindy's home and school environments were also found to be linked to her educational resilience and success. Cindy's lived-experiences were also found to be related to Mahrer's theory of human development. In addition, it was concluded that "minority" students do not all fit into social categories and labels. ^

The utility of an Integrated Qualitative /Quantitative Data Analytic Strategy (IQ -DAS) to evaluate the impact of youth development interventions to positive qualitative change in the life course

This study reports one of the first controlled studies to examine the impact of a school based positive youth development program (Lerner, Fisher, & Weinberg, 2000) on promoting qualitative change in life course experiences as a positive intervention outcome. The study built on a recently proposed relational developmental methodological metanarrative (Overton, 1998) and advances in use of qualitative research methods (Denzin & Lincoln, 2000). The study investigated the use the Life Course Interview (Clausen, 1998) and an integrated qualitative and quantitative data analytic strategy (IQ-DAS) to provide empirical documentation of the impact the Changing Lives Program on qualitative change in positive identity in a multicultural population of troubled youth in an alternative public high school. The psychosocial life course intervention approach used in this study draws its developmental framework from both psychosocial developmental theory (Erikson, 1968) and life course theory (Elder, 1998) and its intervention strategies from the transformative pedagogy of Freire's (1983/1970). ^ Using the 22 participants in the Intervention Condition and the 10 participants in the Control Condition, RMANOVAs found significantly more positive qualitative change in personal identity for program participants relative to the non-intervention control condition. In addition, the 2X2X2X3 mixed design RMANOVA in which Time (pre, post) was the repeated factor and Condition (Intervention versus Control), Gender, and Ethnicity the between group factors, also found significant interactions for the Time by Gender and Time by Ethnicity. ^ Moreover, the directionality of the basic pattern of change was positive for participants of both genders and all three ethnic groups. The pattern of the moderation effects also indicated a marked tendency for participants in the intervention group to characterize their sense of self as more secure and less negative at the end of the their first semester in the intervention, that was stable across both genders and all three ethnicities. The basic differential pattern of an increase in the intervention condition of a positive characterization of sense of self relative to both pre test and relative to the directionality of the movement of the non-intervention controls, was stable across both genders and all three ethnic groups. ^

The utility of an integrated qualitative/quantitative data analytic strategy (IQ-DAS) to evaluate the impact of youth development interventions on positive qualitative change in the life course

This study reports one of the first controlled studies to examine the impact of a school based positive youth development program (Lerner, Fisher, & Weinberg, 2000) on promoting qualitative change in life course experiences as a positive intervention outcome. The study built on a recently proposed relational developmental methodological metanarrative (Overton, 1998) and advances in use of qualitative research methods (Denzin & Lincoln, 2000). The study investigated the use the Life Course Interview (Clausen, 1998) and an integrated qualitative and quantitative data analytic strategy (IQDAS) to provide empirical documentation of the impact the Changing Lives Program on qualitative change in positive identity in a multicultural population of troubled youth in an alternative public high school. The psychosocial life course intervention approach used in this study draws its developmental framework from both psychosocial developmental theory (Erikson, 1968) and life course theory (Elder, 1998) and its intervention strategies from the transformative pedagogy of Freire's (1983/1970). Using the 22 participants in the Intervention Condition and the 10 participants in the Control Condition, RMANOVAs found significantly more positive qualitative change in personal identity for program participants relative to the non-intervention control condition. In addition, the 2X2X2X3 mixed design RMANOVA in which Time (pre, post) was the repeated factor and Condition (Intervention versus Control), Gender, and Ethnicity the between group factors, also found significant interactions for the Time by Gender and Time by Ethnicity. Moreover, the directionality of the basic pattern of change was positive for participants of both genders and all three ethnic groups. The pattern of the moderation effects also indicated a marked tendency for participants in the intervention group to characterize their sense of self as more secure and less negative at the end of the their first semester in the intervention, that was stable across both genders and all three ethnicities. The basic differential pattern of an increase in the intervention condition of a positive characterization of sense of self relative to both pre test and relative to the directionality of the movement of the non-intervention controls, was stable across both genders and all three ethnic groups.

The Effect of Authentic Literacy Experiences as Book Buddies with Hispanic Fourth Graders on Preservice Teachers’ Literacy Content Knowledge and Reading Maturity

From a sociocultural perspective, individuals learn best from contextualized experiences. In preservice teacher education, contextualized experiences include authentic literacy experiences, which include a real reader and writer and replicate real life communication. To be prepared to teach well, preservice teachers need to gain literacy content knowledge and possess reading maturity. The purpose of this study was to examine the effect of authentic literacy experiences as Book Buddies with Hispanic fourth graders on preservice teachers’ literacy content knowledge and reading maturity. The study was a pretest/posttest design conducted over 12 weeks. Preservice teacher participants, the focus of the study, were elementary education majors taking the third of four required reading courses in non-probabilistic convenience groups, 43 (n = 33 experimental, n = 10 comparison) Elementary Education majors. The Survey of Preservice Teachers’ Knowledge of Teaching and Technology (SPTKTT), specifically designed for preservice teachers majoring in elementary or early childhood education and the Reading Maturity Survey (RMS) were used in this study. Preservice teachers chose either the experimental or comparison group based on the opportunity to earn extra credit points (experimental = 30 points, comparison = 15). After exchanging introductory letters preservice teachers and Hispanic fourth graders each read four books. After reading each book preservice teachers wrote letters to their student asking higher order thinking questions. Preservice teachers received scanned copies of their student’s unedited letters via email which enabled them to see their student’s authentic answers and writing levels. A series of analyses of covariance were used to determine whether there were significant differences in the dependent variables between the experimental and comparison groups. This quasi-experimental study tested two hypotheses. Using the appropriate pretest scores as covariates for adjusting the posttest means of the subcategory Literacy Content Knowledge (LCK), of the SPTKTT and the RMS, the mean adjusted posttest scores from the experimental group and comparison group were compared. No significant differences were found on the LCK dependent variable using the .05 level of significance, which may be due to Type II error caused by the small sample size. Significant differences were found on RMS using the .05 level of significance.