The illness experiences of African Americans residing in an inner city community, Houston, Texas

This dissertation documents health and illness in the context of daily life circumstances and structural conditions faced by African American families living in Clover Heights (pseudonym), an inner city public housing project in the Third Ward, Houston, Texas. Drawing from Kleinman\u27s (1980) model of culturally defined health care systems and using the holistic-content approach to narrative analysis (Lieblich, Tuval- Mashiach, & Zilber, 1998) the purpose of this research was to explore the ways in which social and health policy, economic mobility, the inner city environment, and cultural beliefs intertwined with African American families\u27 health related ideas, behaviors, and practices. I recruited six families using a convenience sampling method (Schensul, Schensul, & LeCompte, 1999) and followed them for fourteen months (2010–2011). Family was defined as a household unit, or those living in the same residence, short or long-term. Single, African American women ranging in age from 29–80 years headed all families. All but one family included children or grandchildren 18 years of age and younger, or children or other relative 18 years of age and older. I also recruited six residents with who I became acquainted over the course of the project. I collected data using traditional ethnographic methods including participant-observation, archive review, field notes, mapping, free-listing, in-depth interviews, and life history interviews. Doing ethnography afforded the families who participated in this project the freedom to construct their own experiences of health and illness. My role centered on listening to, learning from, and interpreting participants\u27 narratives, exploring similarities and differences within and across families\u27 experiences. As the research progressed, a pattern concerning diagnosis and pharmacotherapy for children\u27s behavioral and emotional problems, particularly attention-deficit hyperactivity disorder (ADHD) and pediatric bipolar disorder (PBD), emerged from my formal interactions with participants and my informal interactions with residents. The findings presented in this dissertation document this pattern, focusing on how mothers and families interpreted, organized, and ascribed meaning to their experiences of ADHD and PBD. In the first manuscript presented here, I documented three mothers\u27 narrative constructions of a child\u27s diagnosis with and pharmacotherapy for ADHD or PBD. Using Gergen\u27s (1997) relational perspective I argued that mothers\u27 knowledge and experiences of ADHD and PBD were not individually constructed, but were linguistically and discursively constituted through various social interactions and relationships, including family, spirituality and faith, community norms, and expert systems of knowledge. Mothers\u27 narratives revealed the complexity of children\u27s behavioral and emotional problems, the daily trials of living through these problems, how they coped with adversity and developed survival strategies, and how they interacted with various institutional authorities involved in evaluating, diagnosing, and encouraging pharmaceutical intervention for children\u27s behavior. The findings highlight the ways in which mothers\u27 social interactions and relationships introduced a scientific language and discourse for explaining children\u27s behavior as mental illness, the discordances between expert systems of knowledge and mothers\u27 understandings, and how discordances reflected mothers\u27 ‘microsources of power’ for producing their own stories and experiences. In the second manuscript presented here, I documented the ways in which structural factors, including gender, race/ethnicity, and socioeconomic status, coupled with a unique cultural and social standpoint (Collins, 1990/2009) influenced the strategies this group of African American mothers employed to understand and respond to ADHD or PBD. The most salient themes related to mother-child relationships coalesced around mothers\u27 beliefs about the etiology of ADHD and PBD, ‘conceptualizing responsibility,’ and ‘protection-survival.’ The findings suggest that even though mothers\u27 strategies varied, they were in pursuit of a common goal. Mothers\u27 challenged the status quo, addressing children\u27s behavioral and emotional problems in the ways that made the most sense to them, specifically protecting their children from further marginalization in society more so than believing these were the best options for their children

Physical Aggression, Forced Sex, and Stalking Victimization by a Dating Partner: An Analysis of the National Violence Against Women Survey

This study used the National Violence Against Women Survey (NVAWS) of women and men to estimate noncohabitating dating violence prevalence by type (physical, forced sex, and stalking), associations between dating violence and other types of interpersonal violence across the lifespan, and association of dating violence with longer-term mental health including substance abuse. Among respondents aged 18 to 65, 8.3% of 6,790 women and 2.4% of 7,122 men experienced physical aggression, forced sex, or stalking victimization by a dating partner. Few (20.6% of women and 9.7% of men) reported more than one type of dating violence. Childhood physical aggression by a parent or guardian was strongly associated with subsequent dating violence risk for men and women. Dating violence (physical aggression specifically) was associated with current depressive symptoms, current therapeutic drug use (antidepressants, tranquilizers, or pain medications), and current recreation drug use for women. Implications for parents, survivors, health care, and service providers are discussed

“Snake-oil,” “quack medicine,” and “industrially cultured organisms:” biovalue and the commercialization of human microbiome research

Abstract Background Continued advances in human microbiome research and technologies raise a number of ethical, legal, and social challenges. These challenges are associated not only with the conduct of the research, but also with broader implications, such as the production and distribution of commercial products promising maintenance or restoration of good physical health and disease prevention. In this article, we document several ethical, legal, and social challenges associated with the commercialization of human microbiome research, focusing particularly on how this research is mobilized within economic markets for new public health uses. Methods We conducted in-depth, semi-structured interviews (2009–2010) with 63 scientists, researchers, and National Institutes of Health project leaders (“investigators”) involved with human microbiome research. Interviews explored a range of ethical, legal, and social dimensions of human microbiome research, including investigators’ perspectives on commercialization. Using thematic content analysis, we identified and analyzed emergent themes and patterns. Results Investigators discussed the commercialization of human microbiome research in terms of (1) commercialization, probiotics, and issues of safety, (2) public awareness of the benefits and risks of dietary supplements, and (3) regulation. Conclusion The prevailing theme of ethical, legal, social concern focused on the need to find a balance between the marketplace, scientific research, and the public’s health. The themes we identified are intended to serve as points for discussions about the relationship between scientific research and the manufacture and distribution of over-the-counter dietary supplements in the United States.</p

Is Whole-Exome Sequencing an Ethically Disruptive Technology? Perspectives of Pediatric Oncologists and Parents of Pediatric Patients With Solid Tumors.

BACKGROUND: It has been anticipated that physician and parents will be ill prepared or unprepared for the clinical introduction of genome sequencing, making it ethically disruptive. PROCEDURE: As a part of the Baylor Advancing Sequencing in Childhood Cancer Care study, we conducted semistructured interviews with 16 pediatric oncologists and 40 parents of pediatric patients with cancer prior to the return of sequencing results. We elicited expectations and attitudes concerning the impact of sequencing on clinical decision making, clinical utility, and treatment expectations from both groups. Using accepted methods of qualitative research to analyze interview transcripts, we completed a thematic analysis to provide inductive insights into their views of sequencing. RESULTS: Our major findings reveal that neither pediatric oncologists nor parents anticipate sequencing to be an ethically disruptive technology, because they expect to be prepared to integrate sequencing results into their existing approaches to learning and using new clinical information for care. Pediatric oncologists do not expect sequencing results to be more complex than other diagnostic information and plan simply to incorporate these data into their evidence-based approach to clinical practice, although they were concerned about impact on parents. For parents, there is an urgency to protect their child\u27s health and in this context they expect genomic information to better prepare them to participate in decisions about their child\u27s care. CONCLUSIONS: Our data do not support the concern that introducing genome sequencing into childhood cancer care will be ethically disruptive, that is, leave physicians or parents ill prepared or unprepared to make responsible decisions about patient care