I wrote this dissertation for the School of Advanced Studies at University of Phoenix, Arizona, in 2011. To do the research for the dissertation, I spent quite a bit of time at the Center of Disease Control and Prevention archives as a graduate student. I also interviewed medical doctors and others who knew about the subject matter. Since I wrote this dissertation, there has been more research published that I will continue to research and add to my archival collection. The issues of this dissertation were discussed as the emergent theoretical model and its components, which included implications of research, practice, stigma, burden, advocacy, and awareness. Leadership, education, and community resources were the dominant themes that emerged in the study. The study findings imply an increased need for leaders to present public awareness about the affects HIV/AIDS has on the African American community. Future research should consider the explicit nature of the answers, which benefited the study. The information would be helpful while improving the quality of life available for African American women and would enable leaders to interact with a leadership perspective (USAID, 2009)
A study of the Lack of HIV/AIDS Awareness among African American Women: A Leadership Perspective
AWARENESS THAT ALL CULTURES SHOULD KNOW ABOUTBy Betty L. Ragsdale-HearnsTrafford Publishing
Copyright © 2012 Betty L. Ragsdale-Hearns
All right reserved.ISBN: 978-1-4669-4852-5Contents
LIST OF TABLES.............................................................xixLIST OF FIGURES............................................................xxiCHAPTER 1: INTRODUCTION....................................................1CHAPTER 2: LITERATURE REVIEW...............................................18CHAPTER 3: RESEARCH METHOD.................................................52CHAPTER 4: RESULTS.........................................................68CHAPTER 5: CONCLUSIONS AND RECOMMENDATIONS.................................80REFERENCES.................................................................99APPENDIX A: DEMOGRAPHICS...................................................117APPENDIX B: INFORMED CONSENT...............................................119APPENDIX C: PERMISSION TO USE PREMISES.....................................123APPENDIX D: PERSONAL COMMUNICATION/TELEPHONE INTERVIEW.....................127APPENDIX E: LEADERSHIP QUESTIONNAIRE.......................................129APPENDIX F: SURVEY INSTRUMENT..............................................131
Chapter One
INTRODUCTION
In the last decade, the global pandemic of HIV/AIDS has disrupted the lives of millions of people in the United States (Stampley, 2005). HIV disproportionately affects African Americans, as with many other diseases of poverty and limited resources. The spreading of HIV has been influenced by poverty, lack of access to health care, distrust of health systems, inadequate resources, and a myriad of other social factors and inequities (Global Campaign for Microbicides, 2006). Although African Americans only account for 13 percent of the U.S. population, African Americans account for half of all new AIDS diagnoses in the U.S. (Global-Campaign, 2006).
The solution for this type of epidemic is not short-term. Strategists should look 10-30 years ahead for ways to prevent the disease. Prevention may bridge the gap between those who are HIV negative, HIV positive, and/or infected with AIDS (Global AIDS epidemic, 2005). Almost 40 percent of newly diagnosed HIV positive women in the U.S. are African American (Yellin, 2006), and 23 times more likely to be diagnosed with AIDS than white women (CDC, 2005). The study may inspire a closer review of lack of awareness and their socio-economic status of African American women affected by HIV/AIDS.
Increasing interests have emerged from leader's perspective on HIV/AIDS awareness. This introduction addresses two different audiences. It is both an introduction for persons not familiar with AIDS and the HIV updates, and a resource for activists; it includes information not generally available in one compilation (AIDS. gov, 2010). This chapter provides a theoretical foundation for the remaining chapters. The study examines the purpose of the role of leadership and problems for research on HIV/AIDS awareness and includes a research method, design, and questionnaire to seek awareness results. The results offer a leadership perspective of in-depth awareness and insight about how HIV/AIDS affects African American women.
Background of the Problem
Singer and Baer (2007) report that acquired immune deficiency syndrome (AIDS) has emerged as one of the most devastating diseases in human history. "The virus that causes AIDS, human immunodeficiency virus (HIV), has spread rapidly throughout the world's human population" (Singer & Baer, 2007, p. 201). According to Fauci (2008), Auto-Immunodeficiency Syndrome is the full-blown case of an infection with the Human Immuno Virus I or II, a retrovirus.
According to Smith and Daniel (2006) a retrovirus that causes AIDS by infecting helper T-cells of the immune system was the most common serotype, HIV-1. This retrovirus was distributed worldwide while HIV-2 was primarily confined to West Africa. The disease was termed HIV when the person becomes just infected (Fauci, 2008). The virus has the power of replication, so that the virus remains unharmed by treatment. The HIV virus must infect other cells in order to replicate, and other opportunistic viruses enter the human body, leaving behind the advantage of immunity. The HIV virus will progress, weaken the body cells, and reach its full-fledged state of AIDS.
According to health Scout Network (2009) immediately following infection with HIV, most individuals develop a brief, nonspecific viral illness consisting of low-grade fever, rash, muscle aches, headache, and/or fatigue. Like any other viral illness, these symptoms resolve over a period of five to ten days. Then for a period of several years (sometimes as long as several decades), people infected with HIV were asymptomatic (no symptoms). Then, the virus gradually destroys their immune system. When this destruction has progressed to a critical point, symptoms of AIDS appear. These symptoms are as follows: extreme fatigue; rapid weight loss from an unknown cause (more than 10 lbs. in two months for no reason); the appearance of swollen or tender glands in the neck, armpits or groin, for no apparent reason, lasting for more than four weeks; unexplained shortness of breath, frequently accompanied by a dry cough, not due to allergies or smoking; persistent diarrhea; intermittent high fever or soaking night sweats of unknown origin; a marked change in an illness pattern, either in frequency, severity, or length of sickness; the appearance of one or more purple spots on the surface of the skin, inside the mouth, anus or nasal passages; whitish coating on the tongue, throat or vagina; and forgetfulness, confusion and other signs of mental deterioration. "It can take as short as a year to as long as 10 to 15 years to go from being infected with HIV to `full-blown' AIDS" (health Scout Network, 2009, p. 2).
HIV/AIDS signifies the presence of opportunistic infections, which could affect any part of the body and present as pneumonia (Fauci, 2008). The first case was identified in the United States (U.S.) in homosexuals who presented with pneumonia in 1981. Since 1981, more than 1.6 million people have been infected with HIV/AIDS (CDC, 2004).
Problem Statement
In the Dallas and Fort Worth areas of Texas, we are seeing an increase in the incidence of HIV/AIDS amongst African American women. The increase in the infection population brings additional awareness of this disease to the community but infection rates continue to rise and families continue to suffer losses, when African American women die from this disease. Many issues contribute to the problem of increasing death rates and escalating occurrences of HIV/AIDS among African American women (Census, 2007). The increase in death and infection rates presented an urgent need to develop awareness related to the prevention of HIV/AIDS (Wilson, 2010).
The epidemiology research stated by the CDC (2009) and reported by the AIDS education Global Information System, supports HIV/ AIDS prevention findings about the two cities, Dallas and Fort Worth, Texas. Each city has received more than $1 million in city funding over the past three years to support HIV/AIDS prevention (CDC, 2009). The HIV/AIDS Prevention Research Synthesis (PRS) project, initiated by the Prevention Research branch Division of HIV/AIDS Prevention (DHAP) at CDC in 1996, systematically reviews and summarizes HIV behavioral prevention research literature (CDC, 2009). The epidemiological goal of PRS is to translate scientific evidence from the research literature into practical information that is utilizable by prevention providers at state and local health departments throughout the United States and HIV prevention researchers (CDC, 2009). Given this goal, important steps may be taken to conduct more research on the effectiveness of prevention, as measures could relate to HIV/AIDS prevention.
This qualitative grounded theory study explored and identified the level of HIV/AIDS awareness in African American women in the Dallas and Fort Worth areas of Texas. This research study used a population sample of 30 African American women. The study used several data collection methods, such as observations, interviews, and questionnaires to report the findings on HIV/ AIDS awareness. The results are presented as an informational tool about HIV/AIDS awareness, which may increase effective prevention of HIV/AIDS.
Purpose of the Study
The purpose of this qualitative grounded theory research study was to explore HIV/AIDS awareness in African American women from the Dallas and Fort Worth areas of Texas. Quantification was not possible in the present situation therefore the intention was to elicit subjective information from the participants. Many aspects of African American women's knowledge pertaining to this disease were unearthed from the participants via a HIV/AIDS awareness questionnaire. The strategy for this research design was to inform African American women in Dallas and Fort Worth, Texas, about the impact of the HIV/AIDS disease. The primary value of this current study lies in the questionnaire results possibly leading to increased HIV/AIDS prevention and awareness. Additional benefits also lie in finding opportunities to connect the study to existing theoretical formulations obtained from participants at community colleges in Dallas and Fort Worth, Texas.
Significance of the Study
The significance of this current study is the number of women with HIV (human immunodeficiency virus) infection and AIDS (acquired immunodeficiency syndrome) has increased steadily worldwide. According to the World health Organization (WhO), by the end of 2005, 17.5 million women worldwide were infected with HIV (National Institutes of health—NIH, 2007 & Fauci, 2009). efforts to promote responsible awareness and accountability in the community with churches have placed attention on the fact that African American women are dying of the infection of HIV/AIDS (Centers for Disease Control and Prevention, 2008).
The results method and design are useful to the City of Dallas and the City of Fort Worth, Texas. The newspapers in these cities could inform the community about the implications and raise their levels of awareness. The possible benefits of such reports could encourage more cities and community leaders to get involved in HIV/AIDS awareness.
Significance to the Study of Leadership
In the 1990s, the federal AIDS care budget failed to keep pace with the epidemic (Gerald & Wright, 2008). Community leaders have seriously challenged the Dallas and Fort Worth areas of Texas, with prevention and management incidences (Bryant, 2009). The involvement of leaders in the community has improved awareness and brought about indifference from those affected by HIV/AIDS (Bryant, 2009).
The HIV/AIDS epidemic is having an increasingly disproportionate impact on African American leaders, who represent those already disadvantaged populations: African American women (Kaiser Family Foundation, 1998). AIDS is spreading throughout the African American community closing the gap on those who are not infected (Biology News, 2006). The U.S. Department of health and human Services (2009) reports the results of increased awareness have become an informational tool to inform and possibly prevent the spread of HIV/AIDS.
Nature of the Study
Kaiser Family Foundation (1998) reports showed that HIV/AIDS results are representative of African American women nationwide. The nature of this current study represented African American women in Dallas and Fort Worth, Texas. The results provided new perspectives and insights regarding African American women's awareness of the HIV/AIDS disease. Much of the research contributed to an increased awareness about the ways in which social and cultural contexts shape women's knowledge of HIV/AIDS. The existing literature on African American women's awareness levels suggests HIV/AIDS has seriously challenged our nation calling into question many of our approaches to understanding diseases, prevention, treatment, and management (Kaiser Family Foundation, 1998, p.1).
Research Method
A use of qualitative research uses open-ended techniques such as interviews to collect data for understanding issues or human behavior in terms of reasons for the behavior and elicits the understandings and motives, which cause some actions (Clissett, 2008). This sampling illustrated results from 30 African American women in the Dallas and Fort Worth area. The participants are not a representative group but they were expected to provide some knowledge about the lack of awareness of HIV/AIDS in the African American population (Tavakol, 2006). In quantitative research, the relationships between two individual or two sets of variables are compared: The independent variable and the dependent variables are usually the outcome. They aim to "study things in their natural setting, attempting to make sense of, interpret, and realize phenomena in terms of the meanings people bring to them, and they use 'a holistic perspective', which preserves the complexities of human behavior" (Greenhalgh & Taylor, 2008, p.1).
Quantitative research did not serve this current study's purpose. Quantitative research deals with numerical data. For an accurate estimation of the relationship between the variables in a descriptive quantitative research, hundreds of participants may be required. The large number was not possible here; the costs would multiply to impossible limits. The variables were not identified; therefore, a quantitative descriptive research was not appropriate.
In the experimental quantitative research, subjects are measured before and/or after a treatment. Treatment or any interventions were not involved in the present study. The experimental quantitative research was not applicable here (Creswell, 2002). Future study could be done using the experimental quantitative method of research using the basic ideas obtained from this qualitative study, followed by interventions to increase awareness and then reassessing the awareness. A control group without interventions could also be instituted and studied for comparison. The mixed variety of research employs a quantitative and qualitative research. This was not required as the objective was to elicit maximum unknown information from a selected sample of African American women in a particular area.
Research Design
The grounded theory design was employed for this current study using a qualitative approach. The foundation of grounded theory evolved from Symbolic Interactionism where human beings are seen as the key participants and shapers of this world (Coleman & O'Connor, 2007). The theory was first established by Glaser and Strauss (1967) having been derived from the constant comparative method. This study started with few predetermined ideas and increased in depth of awareness. Towards the end of the study, a set of relationships were evolved that had a systematic theoretical framework and explained relevant social, psychological and/or educational, or events of awareness (Coleman & O'Connor, 2007). A theory evolved from continuous interplay between data collection and analysis. Good theory development was insured by the process of breaking down interviews, observations, and other forms of appropriate data into distinct units of meaning, which are labeled to generate concepts (Coleman & O'Connor, 2007).
The grounded theory method was the right design to incorporate in this research. The theoretical sampling was completed first. The 30 African American women of the Dallas/Fort Worth areas were distributed questionnaires about lack of awareness of HIV/ AIDS. The questions in the first few samples were changed as the interviewer continued with the addition of new questions as new ideas were gathered from the first few answers. Noticing an emergent category, the questions were reframed to benefit the category. This became an ever-changing process and constant comparison was evident. The data collection framed the study, as the information was gathered from the participants. An awareness theory was developed throughout the study. The research questions were changed to benefit new requirements. The nature of data analysis was inductive and interpretive. Through selective sampling, saturation of categories, research variables emerged from the study. Then characteristics of the core variable were repeated. The results linked and explained various data, and had implications for a general or formal theoretical theory, and helped to study maximum variations and analysis.
The results from the questionnaires were analyzed line-by-line using NVIVO coding processes. These results were recorded from the participants' answers, and are not the interpretations of the researcher. Many levels of codes were made following each set of interviews (Coleman & O'Connor, 2007). The main categories were divided into subcategories, which are known as axial coding. Selective coding is a process of re-integrating and redefining of the theory. The core category was then identified. Formal communication was the process of making notes and ideas from the information. These communication strategies were used in the form of questions and statements. They are the building blocks of the final theory (Coleman & O'Connor, 2007). The process involved in reaching the theory was gradual and progressive. The participants' answers were collected and recorded. Attempts were made to categorize the answers. Then the answers were coded based on the results. Redefining and reassessing the codes were completed and theories were formed with particular relevance to the lack of awareness of HIV/AIDS.
Research Questions
All research is socially constructed (Martin, 2007). Two research questions guided the study:
RQ1. What are adverse implications of African American women acquiring HIV/AIDS after awareness measures have been in place?
RQ2. What do African American women know about the impact of the HIV/AIDS epidemic?
(Continues...)
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