ABSTRACT
Title of Document: THE INTERSECTION OF HIV INFECTION
WITH HIV/AIDS BELIEFS AMONG
AFRICAN AMERICANS
Heather M. Walton, PhD, 2007
Directed By: Professor Ruth E. Fassinger, Department of
Counseling and Personnel Services
This dissertation describes a qualitative study of 15 African American, HIV-positive
individuals who were clients in a day treatment program at an HIV clinic in the
Washington, DC, area. Data were collected through semistructured interviews; grounded
theory methodology was used to generate a theory of how the participants gave meaning
to HIV. The theoretical model included Personal Context, Support and Education, Socio-
cultural Meaning, and Personal Meaning, all of which related to the formation of a global
meaning regarding HIV. The emergent theoretical model and its components are
presented, and the implications of the study for research, practice, and advocacy are
discussed.
THE INTERSECTION OF HIV INFECTION WITH HIV/AIDS BELIEFS AMONG
AFRICAN AMERICANS
By
Heather M. Walton
Dissertation submitted to the Faculty of the Graduate School of the
University of Maryland, College Park, in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
2007
Advisory Committee:
Professor Ruth E. Fassinger, Chair
Dr. Patricia D. Hawkins
Professor Clara E. Hill
Professor Mary Ann Hoffman
Associate Professor Susan Jones
Associate Professor Marylu K. McEwen
? Copyright by
Heather M. Walton
2007
ii
Dedication
This dissertation is dedicated to all those who are living with (not dying from) HIV,
particularly my study participants,
my own clients,
and the other clients of the Whitman-Walker Clinic.
iii
Acknowledgements
First, I would like to thank my amazing research team members, who played a
large and crucial role in the analysis, theory-building, and interpretation of this study. To
Amy, Bronwyn, Kate, Kristin, Lynn, Stephanie, and Sueleidy: I could not have done this
without you. Thank you for being as passionate about the project as I was. You are all
extraordinary women.
I also would like to thank everyone at the Whitman-Walker Clinic, particularly
Dr. Patricia Hawkins, David Facenda, and my participants, as well as all of my
dissertation committee members, who gave generously of their time and other resources
so that I could study this important topic.
Thanks, also, to Andrew Semegram, who generously offered his editing expertise,
and to all of my other friends and family who have supported me, especially Kelly,
Kristen, Brian, Erica, Mimi and Ed, and my parents, without whom I most certainly
would not have survived this process. To my parents: Your deep and constant belief in
me has sustained me throughout this project, throughout graduate school, and throughout
my entire life. I am beyond appreciative of your love and support.
Finally, I thank my advisor, Ruth Fassinger, who has not only allowed me to
pursue my passions, but has encouraged me to do so?not only with regard to this
project, but throughout my entire graduate school career and beyond. You continue to
help me make meaning in my own life.
iv
Table of Contents
Dedication ii
Acknowledgements iii
Table of Contents iv
List of Figures vi 
Chapter 1: Introduction 1
Chapter 2: Review of the Literature 7
HIV/AIDS Prevalence among African Americans 7
African Americans? Response to HIV/AIDS 11
Defining HIV/AIDS Beliefs 13
Empirical Research Involving African Americans? HIV/AIDS Beliefs 14
Summary of the Empirical Literature 23
Statement of the Problem 25
Purpose of the Study 29
Framework of the Current Study 30
Research Questions 33
Chapter 3: Method 35
Recruitment 35
Theoretical Sampling 37
Interviews 38
The Interviewer 39
Participants 42
Instruments 43
Research Team 44
Transcription 46
Data Analysis 47
Chapter 4: Results 53
Overview of the Emergent Theory 53
Profile of the Participants? Stories 57
Explication of the Emergent Theory 59
Personal Context 59
Support and Education 67
Socio-cultural Meaning 74
Personal Meaning 80
Global Meaning 83
v
Chapter 5: Discussion 85
Comparison of the Results to Existing Literature 91
Limitations of the Study 98
Implications for Research, Practice, and Advocacy 102
Appendix A: Contact Information Regarding the Study 107
Appendix B: Field Notes Form 108
Appendix C: Interview Protocol 109
Appendix D: Demographics Form 111
Appendix E: Research Team Recruitment Flyer 116
Appendix F: Provisional Code List 117
Appendix G: Second Code List 119
Appendix H: Third Code List 121
Appendix I: Category List 123
Appendix J: Properties and Dimensions of the Categories 126
References 128
vi
List of Figures
1. Figure 1. Making Sense of HIV. 54
1
Chapter 1
Introduction
African Americans are disproportionately affected by HIV/AIDS in the United
States, with rates substantially higher than among Hispanics or Whites (Centers for
Disease Control and Prevention [CDC], 2007). African Americans account for
approximately 49% of AIDS cases in the United States, despite numbering only 13% of
the total population. Thomas and Quinn (1993) stated that the spread of HIV/AIDS has
?highlighted the complex relationship between social class, gender and race in a society
where health care facilities are impoverished, access to care is inadequate and prevention
technology is devalued? (p. 326). Furthermore, they asserted that the response of the
African American community to AIDS must be examined within a socio-political
context, taking into account African Americans? history and treatment in the United
States. Please note that when citing specific sources in discussing these issues, I adopt the
language of the authors I am referencing (e.g., the use of African American or Black, and
the use of HIV or AIDS).
African Americans? responses to HIV/AIDS have consisted largely of mistrust of
Whites and/or the United States government, as reported in anecdotal accounts and
reports from popular media (Thomas & Quinn, 1993). Community-based organizations
have reported that African Americans mistrust government reports on the disease, believe
that HIV is a man-made virus, and believe AIDS is a form of genocide (Thomas &
Quinn). African Americans? distrust is not necessarily limited to HIV?Thomas and
Quinn have asserted that African Americans experience pervasive distrust of the public
health system and public health authorities, likely fueled by the Tuskegee Syphilis Study.
2
The study, conducted by the United States Public Health Service beginning in 1932,
denied available syphilis treatment to African American men for 25 years so that
researchers could continue their study of the course of the disease. Despite the
availability of treatment after 1947, researchers continued to observe untreated
participants as they went blind, became insane, and eventually died (Bird & Bogart,
2005).
Thomas and Quinn (1991) asserted that the legacy of the Tuskegee study has
contributed to African Americans? beliefs that genocide is possible and that public health
authorities cannot be trusted. They described beliefs regarding AIDS as a form of
genocide as a ?legitimate attitudinal barrier? (p. 1503) rooted in the history of the
Tuskegee study. In other words, African Americans? beliefs about HIV/AIDS are formed
in a historical context, which includes an unethical study in which little regard was shown
for the lives of African American men.
After reports appeared in the popular media about such beliefs, empirical
investigations examined the prevalence, correlates, and implications of these beliefs. It
appears evident that some African Americans do possess beliefs about large-scale
discrimination in regard to HIV/AIDS. Estimates of their prevalence vary widely because
different beliefs were assessed in each study. For example, Parsons et al. (1999) assessed
agreement with the statement that the government is not telling the whole truth about
AIDS, with which 70% of participants agreed. Klonoff and Landrine (1999) assessed
African Americans? belief that the government deliberately created AIDS to kill Black
people, which 27% of their participants endorsed. Overall, results demonstrated that
3
endorsement of mild or ?benign? beliefs is more common than endorsement of more
?malicious? beliefs (e.g., Parsons et al.).
Furthermore, African Americans? beliefs about large-scale discrimination
regarding HIV/AIDS are significantly more prevalent than Caucasian Americans?,
regardless of the nature of the beliefs, e.g., benign or malicious. Significant racial
differences were found in the endorsement of statements that the government and the
medical community know more than they are willing to say (Dusenbury et al., 1994), that
the government deliberately put AIDS into African American communities (Goertzel,
1994), that the government is using AIDS to kill off minorities (Herek & Capitanio,
1994), that AIDS was created deliberately to eliminate undesirable people (Dusenbury et
al.), and that the virus that causes AIDS was deliberately created in a laboratory in order
to infect Black people (Crocker et al., 1999). Overall, African Americans are more likely
than Caucasians to endorse beliefs regarding large-scale discrimination regarding
HIV/AIDS.
The literature also suggests explanations for this discrepancy. Klonoff and
Landrine (1999) found that lower levels of acculturation (i.e., stronger immersion in
Black culture) and experiences of racism predicted endorsement of these beliefs. Crocker
et al. (1999) found that when system blame (i.e., the tendency to attribute problems to
prejudice and discrimination) was entered into a regression equation with other relevant
variables (race, income, and other psych-social variables), system blame was the only
predictor of endorsing large-scale discrimination beliefs about HIV/AIDS. Their results
support the theoretical argument that these beliefs have arisen from the cultural history
and experiences of African Americans in the United States, rather than from personality
4
characteristics or defects (Crocker et al.). Results consistently showed that endorsements
of beliefs about large-scale discrimination regarding HIV/AIDS are unrelated to income
or to education (Goertzel, 1994; Parsons et al., 1999); specifically, several researchers
found that once race was entered into their regression equations, income and education
were no longer predictors of these beliefs (Herek & Capitanio, 1994; Klonoff &
Landrine; Crocker et al.).
Finally, potential impact of discriminatory beliefs about AIDS and the
government and medical community has been explored as well. Bogart and Bird (2003)
found that belief in government conspiracies was related to a greater number of sexual
partners in the last three months and a lower perceived quality of condoms. Bogart and
Thorburn (2005) found that HIV/AIDS conspiracy beliefs were related to condom use
only in men. For men, the beliefs were correlated with more negative attitudes about
condom use and a lower likelihood of using condoms consistently.
Thus, existing literature regarding large-scale discriminatory beliefs about
HIV/AIDS among African Americans clearly has demonstrated pervasiveness of these
beliefs and even has explored several implications of these beliefs (e.g., risky sexual
behavior, variable condom use; Bogart & Bird, 2003; Bogart & Thorburn, 2005).
However, the only empirical analysis of such beliefs to date has been achieved through
quantitative measures (i.e., statements constructed by the researchers) that did not allow
for discovery of beliefs generated by the participants themselves. The nature of African
Americans? beliefs about HIV/AIDS has not been explored exhaustively. In addition,
literature has not focused on examining the prevalence or implications of these beliefs
among African American individuals who are HIV-positive. Research findings regarding
5
medication adherence and coping with chronic illness suggest potential implications for
these beliefs among African Americans who are living with HIV/AIDS. The purposes of
the current study were to conduct in-depth research that uncovered, in a more exhaustive
fashion, the nature of African Americans? beliefs about HIV/AIDS, and to explore the
relationship between the beliefs and HIV-positive status among African Americans.
The study utilized grounded theory, a qualitative methodology whose primary
goal is theory development (Glaser & Strauss, 1967). Theory development was important
in achieving the purposes of the study, which included identifying the relationship
between people?s beliefs and experiences. In particular, the study was conducted from a
constructivist standpoint (Charmaz, 2000), which allowed me to explore participants?
subjective experience and acknowledged that the results would reflect one temporally
bound reality as opposed to a universal truth. The first step in theory development is
identifying research questions that give researchers the flexibility and freedom to explore
a phenomenon in depth (Strauss & Corbin, 1990). I developed research questions that
were based on existing literature but allowed room for the discovery of novel concepts.
I constructed a semi-structured interview protocol based on my research questions
and interviewed HIV-positive African Americans who were clients of the Whitman-
Walker Clinic, a non-profit community-based health organization in Washington, DC that
serves individuals who are HIV-positive. The interviews were tape recorded and were
later transcribed and analyzed by me and seven undergraduate research team members.
Our grounded theory analysis involved the identification of concepts (points or ideas
discussed by the participants) and categories (higher-order, more abstract concepts that
encompassed the initial concepts we had identified). Characteristics of the categories also
6
were described and a preliminary theory was developed, representing how the
participants made sense or meaning of HIV. We discovered that participants developed
personal and socio-cultural meanings about HIV and that those constructs combined to
form an overall meaning of HIV for each individual.
7
Chapter 2
Review of the Literature
A review of the literature pertaining to African Americans? beliefs about
HIV/AIDS is presented in this chapter. First, the status of HIV/AIDS among African
Americans, including risk factors for HIV infection, is discussed. Second, African
Americans? beliefs are defined and explained in relation to the current study. Third,
empirical literature examining the topic is reviewed and summarized. Finally, the
statement of the problem, purpose and framework of the current study, and research
questions are identified.
HIV/AIDS Prevalence among African Americans
African Americans are disproportionately affected by HIV/AIDS in the United
States at all stages of the disease (i.e., from infection to death). African Americans
comprise approximately 13% of the United States population according to the 2000
census. In the 33 states with confidential, name-based HIV reporting (i.e., those states in
which data could be collected), African Americans comprised 49% of the new HIV/AIDS
diagnoses in 2005. Similarly, African Americans accounted for 50% of the estimated
AIDS cases diagnosed in the United States (the 50 states and the District of Columbia),
and accounted for 44% of the people who are living with AIDS in the United States.
Since the beginning of the AIDS epidemic, African Americans have accounted for 42%
of the estimated AIDS cases diagnosed in the United States (Centers for Disease Control
and Prevention, 2007).
The effect of HIV/AIDS upon African Americans is significant when compared
with other racial/ethnic groups. According to the Centers for Disease Control and
8
Prevention (CDC; 2007), ?The rate of AIDS diagnoses for African American adults and
adolescents was 10 times the rate for whites and nearly three times the rate for Hispanics
[in 2005]? (p. 2). Broken down by gender, the rate of AIDS diagnoses for African
American women was over 23 times the rate for white women, and the rate of AIDS
diagnoses for African American men was eight times the rate of that for white men. In
addition, a smaller proportion of African Americans were alive after 9 years compared
with American Indians and Alaska Natives, Hispanics, whites, and Asians and Pacific
Islanders (based upon those who were diagnosed with AIDS from 1997-2004; CDC).
According to the CDC (2007), ?Race and ethnicity, by themselves, are not risk
factors for HIV infection? (p. 3). Data from 2005 indicated that of all African American
men living with HIV/AIDS, the primary mode of transmission was sexual contact with
other men, followed by injection drug use and high-risk sexual contact with women. For
African American women living with HIV/AIDS, the primary mode of transmission was
high-risk sexual contact with men, followed by injection drug use. Thus, the primary risk
factors for HIV/AIDS among African Americans include sexual risk factors and
substance use (CDC). At the same time, research indicates that Black and White men
who have sex with men (MSM) have comparable risk behaviors (Millett, Peterson,
Wolitski, & Stall, 2006), and African Americans in general report less risky sexual
behaviors than their White counterparts (e.g., reported condom use is higher among
Blacks than among other racial and ethnic groups; Blankenship, Smoyer, Bray, &
Mattocks, 2005). African Americans reported (in a 2002 study) less lifetime and past year
use of illicit drugs other than marijuana, and only slightly more use in the past month,
than White adults (Blankenship et al.). In addition, White adolescents have been found to
9
be more likely to use illicit drugs than their African American counterparts, and to begin
using drugs?both legal, e.g., tobacco, alcohol, and illegal?at younger ages. All of this
suggests that race differences in HIV/AIDS are likely related to structural, social, and
contextual factors that determine health, rather than to individual risk factors
(Blankenship et al.).
When such factors are considered, it becomes clear that the disproportionate
effect of HIV/AIDS upon African Americans is related to marginalized social status. The
United States is a racially and economically segregated country in which poverty is
disproportionately concentrated in African American and Hispanic communities
(Fullilove, 2006). According to Anderson and colleagues, such a structure has led to large
numbers of lower-income African Americans in central cities, particularly in
impoverished neighborhoods, with ongoing racial discrimination posing difficulties for
movement out of such areas. When affordable housing is not available to low income
families, most financial resources are spent on housing costs, leaving other needs such as
medical care unmet. Some implications are that African Americans may not have access
to HIV/AIDS testing and treatment (Anderson, St. Charles, Fullilove, Scrimshaw, &
Fielding, 2003). This is particularly significant in light of the fact that most African
Americans who are aware of their HIV-positive status are likely to engage in safer sex
practices, whereas those who are unaware of their status are less likely to do so
(Fullilove).
Living in such poverty is a stressor on those who experience it, and on the
community as a whole. As Fullilove (2006) pointed out, ?Crime tends to flourish,
particularly drug-related offenses? (p. 18). Injection drug use (IDU) accounts for more
10
than 19% of new African American HIV infections in the United States (CDC, 2007). If
African Americans? reported rates of drug use are no higher than Whites?, why would
IDU pose a more significant threat to them? According to Blankenship et al. (2005),
African Americans are disproportionately incarcerated for drug offenses, particularly
since the country?s so-called war on drugs: ?While the number of White state prison
inmates sentenced for drug offenses increased 306% between 1985 and 1995, the number
of African American state prison inmates sentenced for drug offenses increased 707% in
the same time period? (p. 143).
How does incarceration relate to HIV risk? Research supports the fact that HIV
risk behaviors take place in at least one of the nation?s largest state prison systems
(Fullilove, 2006). Because having sex as a prisoner (either with another prisoner or with a
member of the correctional staff) is illegal, as is injection drug use, HIV risk reduction
interventions such as access to condoms and needle exchange are unavailable to most or
all prisoners (Fullilove). Blankenship et al. (2005) noted that sex and drug use appear to
decrease overall among prisoners (i.e., people engage in much less sexual behavior and
drug use when they are in prison than when they are outside of it), but when they do
occur, the behaviors are conducted in a riskier manner than they are outside of prison.
Studies indicate that there is little difference in risk behaviors of African American
prisoners versus Whites, suggesting that the disparity in HIV/AIDS is due to incidence of
incarceration, not to differences in risk behavior while incarcerated (Fullilove).
African Americans? disproportionate incarceration leads to further consequences
after their imprisonment. Fullilove (2006) points out that prisons are a major factor in the
continuing rates of poverty and social disadvantage in the African American community.
11
It is usually difficult for ex-prisoners to secure jobs, which also means difficulty in
securing healthcare (Blankenship et al., 2005). They often are ineligible for housing
assistance or subsidies and are at high risk of becoming homeless (Fullilove). Ex-
prisoners therefore often reside in economically disadvantaged communities (which often
is where they came from; Fullilove), thus closing a circle characterized by racism and
economic disadvantage and perpetuating such a cycle.
African Americans? Response to HIV/AIDS
Anecdotal accounts have suggested that African Americans? responses to
HIV/AIDS have consisted of mistrust of Whites and/or the United States government
(Thomas & Quinn, 1993). For example, community-based organizations have reported
that African Americans mistrust government reports regarding HIV/AIDS, believe that
HIV is a man-made virus, and believe that AIDS is a form of genocide (Thomas &
Quinn, 1993). A 1992 New York Times article (?AIDS Plot,? 1992) described results from
polls indicating that many African Americans believe that HIV was deliberately created
in a laboratory in order to infect Black people and that AZT (a medication used for
HIV/AIDS treatment) is a plot to poison them. Media sources such as PBS programs, the
Los Angeles Sentinel, and Essence magazine examined HIV/AIDS as a potential form of
genocide, exploring the idea that African Americans were potentially infected by the
disease intentionally in order to eliminate that population (Thomas & Quinn, 1993).
Several theorists (e.g., Bird & Bogart, 2005; Thomas & Quinn, 1991) have
explained these beliefs in terms of the cultural history of African Americans in the United
States. Thomas and Quinn (1991) asserted that the history of slavery and racism in the
United States has contributed to the current social environment, in which the American
12
dream of opportunity and equality has failed to be realized by the majority of the African
American population; their consequent anger and despair in the face of persistent
inequality have contributed to the development of their beliefs about Whites and/or the
United States government. These theorists also point specifically to the history of African
Americans? experiences of institutional health care discrimination in particular in
explaining what they call ?conspiracy beliefs? about HIV/AIDS.
Thomas and Quinn (1991) asserted that African Americans? beliefs about
HIV/AIDS stem from an overall distrust of the public health system and public health
authorities, most likely due in large part to the Tuskegee Syphilis Study. Conducted by
the United States Public Health Service, the study (which began in 1932) denied available
syphilis treatment to African American men for 25 years so that researchers could
continue their study of the course of the disease. Treatment became available in 1947, but
researchers withheld treatment from African American men so that they could continue to
observe the course of the disease. Researchers observed participants as they went blind,
became insane, and eventually died (Bird & Bogart, 2005). According to historian James
Jones, the ultimate reason why the study continued for 40 years was the lack of sense of
responsibility and lack of ethical concern among the small group of men who controlled
the study. The experiment was still being conducted when the story broke in the news
because an employee at the United States Public Health Service had come forward after
struggling with ?moral concerns? (Thomas & Quinn, 1991). An official in the Center for
Disease Control publicly stated that the experiment was ?almost like genocide?a literal
death sentence was passed on some of those people? (Thomas & Quinn, 1991).
13
Thomas and Quinn (1991) asserted that the Tuskegee study has fostered beliefs
among African Americans that public health authorities cannot be trusted and that
genocide is possible. African Americans? endorsement of ?conspiracy beliefs? is related
to their history of racist experiences in the United States, particularly to the Tuskegee
Syphilis Study (Thomas & Quinn, 1993). The following section explains how such
beliefs are conceptualized in the current study.
Defining HIV/AIDS Beliefs
In order to understand the focus of the current study, it is important to define the
beliefs to which the study refers. Beliefs of interest in the current study and included in
the review of previous research are ?beliefs about large-scale discrimination, by the
government and health care system, against a group (in this case, African Americans)?
(Bird & Bogart, 2005, p. 110). While the popular media as well as some academic
authors have referred to these beliefs as ?conspiracy beliefs? (e.g., Crocker, Luhtanen,
Broadnax, & Blaine, 1999), the broader definition explicated above is used in the current
study for several reasons. First, given the very small body of literature on this topic, it
allowed the literature to be searched broadly for the study of these types of beliefs,
regardless of the terminology used by the authors. Furthermore, the phrase ?conspiracy
beliefs? might imply some psychological or intellectual malady, while the theory on the
topic actually utilizes a historical and cultural explanation for the phenomenon. As
Thomas and Quinn (1991) explain, a risk of drawing attention to the disproportionate
number of AIDS cases among African Americans is that the epidemic could be attributed
to some innate weakness of this population and could be used to further justify neglect or
14
deprivation. I assert that studying so-called ?conspiracy beliefs? might create the same
effect.
When discussing specific research, I adjust my language to adopt the language of
the authors I am referencing. I applied the same principle for the use of the words Black
and White, as well as the use of HIV or AIDS. This research topic has been examined
from multiple fields (i.e., psychology, sociology, political science), contributing to
difficulties in finding uniform terminology within this literature. The research included in
this review includes studies that focused on HIV/AIDS beliefs specifically as well as
studies that covered a broader range of beliefs but included HIV/AIDS beliefs. In all
cases, the beliefs refer to those concerning large-scale discrimination by the government
or public health care system. This empirical research is reviewed chronologically so that
the reader may understand the development of the research area over time.
Empirical Research Involving African Americans? HIV/AIDS Beliefs
The first research study documenting these types of beliefs tapped into the
prevalence of distrustful HIV/AIDS beliefs by African Americans within a study that
more generally examined AIDS-related attitudes in the United States (Herek & Glunt,
1991). The purpose of the study was to understand American?s attitudes related to the
AIDS epidemic, including dimensions along which attitudes are organized. The
researchers conducted a national telephone survey using random digit dialing (RDD)
techniques with a random sample of English-speaking adults from the pool of all
American households with telephones. In total, 960 interviews were obtained, with a
response rate of 47 percent. The interviews contained four main areas of inquiry:
knowledge/opinion about whether AIDS could be transmitted through each of 12
15
different routes, level of agreement with AIDS policy items, a short form of the Attitudes
Toward Gay Men Scale (ATG); and demographic information.
Herek and Glunt (1991) report several results that are relevant to the current
study. First, Black respondents agreed significantly more than Whites that the
government is not telling the whole story about AIDS. Second, Blacks were somewhat
more likely than Whites (51% versus 41%) to agree that the AIDS epidemic is being used
to promote hatred of minority groups, though the authors note that the difference was not
statistically significant. Finally, the belief that AIDS could be spread by casual contact
was predicted by distrust for Blacks but not for Whites. Overall, the results, and the way
in which they were reported (e.g., statistical significance unclear), do not offer strong
evidence for significant mistrustful beliefs about HIV/AIDS held by Blacks, especially as
compared to Whites. However, the findings did shed light on this phenomenon and
spawned further research.
The area was next touched upon by Goertzel (1994), who approached the topic by
studying conspiracy theories through the lens of political psychology. This author
conducted a study with the purpose of determining the prevalence of conspiracy beliefs in
general, and of testing possible psychological or sociological correlates of belief in
conspiracies. Goertzel?s (1994) study consisted of a telephone survey, which was given to
348 randomly selected residents of counties in southeastern New Jersey. The survey
included three items that addressed beliefs about HIV/AIDS: ?The AIDS virus was
created deliberately in a government laboratory,? ?The government deliberately spread
the AIDS virus in the homosexual community,? and ?The government deliberately spread
16
the AIDS virus in the Black community.? There was a total of 10 survey items assessing
a variety of beliefs.
Once all responses were recorded, very few (6.2%) of the respondents thought
that none of the conspiracies was at least probably true, while 21% thought that two were
true, and 19% thought that three were true. Overall, belief in conspiracies was not
significantly correlated with gender, educational level, or occupational category. There
was a correlation (r = .44) between conspiracy beliefs and minority status. Overall,
African American respondents were more likely than White or Hispanic respondents to
believe in the conspiracies which specifically affected their community. In particular,
31% believed that the government deliberately put AIDS into African American
communities. This study presented stronger evidence of these beliefs, at least in one
geographic area.
Dusenbury, Diaz, Epstein, Botvin, and Caton?s (1994) study regarding attitudes
toward AIDS and AIDS education was conducted with multi-ethnic parents in New York
City, therefore exploring this phenomenon in a different geographical area than that
examined by Goertzel (1994). In order to obtain a multi-ethnic sample, the researchers
used a random digit dialing procedure of residential telephone numbers in New York
City. Prior to creating and conducting the telephone interviews, the researchers conducted
discussions with three focus groups of parents, one group for each population they
wanted to target (African American, Caucasian, and Latino). The interview items were
developed based on these focus groups, and were organized into six general areas; the
areas relevant to the current review are Beliefs About the Origins of AIDS and Views
About the Level of Public Disclosure. The beliefs area included items such as ?AIDS was
17
created deliberately by government scientists to eliminate undesirable groups of people.?
The origins area included, ?The medical community, that is, doctors and researchers,
know more about AIDS than they are willing to say.? As part of their analysis, the
researchers compared responses by racial group on these items.
In general, the analyses compared the Caucasian group of parents to the African
American parents and to the Latino parents (i.e., African American and Latino parents
were not compared to one another; Dusenbury et al., 1994). African American parents
were more likely than Caucasian parents to believe that AIDS was deliberately created to
eliminate undesirable groups of people (29% versus 9%), that AIDS had been created in
the laboratory but had spread to the public by accident (27% versus 14%), that the
medical community knows more about AIDS than they are willing to say (63% versus
38%), and that the government knows more about AIDS than they are willing to say
(60% versus 38). Statistical significance of the differences between racial groups on the
interview items was not reported, which is clearly a limitation of the study and the
interpretation of its results. One strength of the study, however, lies in the fact that the
researchers conducted focus groups prior to constructing the telephone interviews,
providing more empirical reasoning for the inclusion of certain measurement items than
in some of the other articles reviewed here.
Herek and Capitanio (1994) were perhaps the first researchers to focus a study
solely on investigating trust in relation to perceptions of AIDS. The authors considered
three manifestations of mistrust, measuring each with one item assessing participants?
level of mistrust in these areas: disbelief of medical authorities concerning the safety of
casual social contact, the belief that AIDS is part of a genocidal conspiracy, and the belief
18
that information about AIDS is being deliberately withheld from the public. The
researchers also assessed beliefs about HIV transmission; AIDS-related behavior change,
which assessed whether participants had made any changes in their own sexual behavior
because of AIDS); AIDS-related stigma, which examined participants? opinions about
people with AIDS; sources of information, where participants personally had received
any information about AIDS (participants were asked about each of 11 possible sources);
and demographics.
Results revealed that more than one-third of the respondents gave at least one
response that indicated a lack of trust (Herek & Capitanio, 1994). Overall distrust was
higher among African Americans than among Whites. However, the authors did not state
whether or not the difference was statistically significant. More than one in four Blacks
(27%) expressed distrust of scientists and doctors who say AIDS is not spread by casual
contact, compared to 14% of Whites. Twenty percent of African Americans interviewed
believed that the government is using AIDS to kill off minority groups, compared to 4%
of Whites. Finally, 43% of Blacks and 37% of Whites believed that information about
AIDS is being withheld from the public. Fifty-five percent of Whites and 35% of Blacks
did not give any distrustful responses to any of the three items.
To further assess the relationship between race and trust, the researchers
conducted additional analyses (Herek & Capitanio, 1994). Race predicted mistrust above
and beyond income and education. None of the three distrust items was associated with
exposure to information about AIDS, in that no particular source of information was
significantly correlated with any of the trust items. Distrust of doctors was correlated with
overestimating risks of contracting the disease. Distrust of doctors also was correlated
19
with having stigmatizing beliefs about people with AIDS. The authors conclude that lack
of trust is widespread and is unrelated to access to information. The study points to
African American race, above and beyond correlates such as income and education, as
related to mistrust with regard to AIDS.
Klonoff and Landrine (1999) studied HIV/AIDS beliefs of African Americans
exclusively. Subjects were sampled from ten randomly selected middle- and working-
class census tracts in San Bernardino County, California. The primary survey item posed
to the participants was, ?HIV/AIDS is a man-made virus that the federal government
made to kill and wipe out Black people. How much do you agree with the above
statement?? The responses were: totally disagree?32.7%, disagree somewhat?18%,
neither agree nor disagree?22.7%, agree somewhat?12.2%, totally agree?14.3%.
The authors also examined predictors of agreement with the survey item about
HIV/AIDS being a man-made virus (Klonoff & Landrine, 1999). Predictors included
acculturation (i.e., low or no immersion in Black culture; with low-acculturated
individuals who were more immersed in Black culture more likely to endorse the survey
item), gender (with men more likely to endorse the survey item), and racist experiences.
Education, income, and age were not predictive of agreement with that item. Women?s
agreement was most predicted by low levels of acculturation, while men?s agreement was
most predicted by high experiences of racist events. This study offered the first empirical
examination of potential correlates of trust or mistrust in relation to HIV/AIDS.
Parsons, Simmons, Shinhoster, and Kilburn (1999) analyzed conspiracy theories
among Blacks in one southern state, collecting data through a survey of church
parishioners. A Likert scale was used to measure beliefs in 11 conspiracy theories. Two
20
of the 11 items were related to AIDS; one asked if the government was telling the truth
about AIDS; the other asked if AIDS was intended to wipe Blacks off the face of the
earth. Both items were taken from previous research. In regard to beliefs about
HIV/AIDS, almost 70% of participants reported that the government is not telling the
whole truth about AIDS. One of the least endorsed items of all 11 of the conspiracy
theories was AIDS as a form of genocide, and that belief was held by 27.8% of
participants.
The 11 items grouped into two distinct factors: ?malicious intent,? the belief in a
more active conspiracy by the government, including the AIDS as a form of genocide
item; and ?benign neglect,? belief that the government does not address specific social
problems, the factor that included the item that the government was not telling the truth
about AIDS (Parsons et al., 1999). Overall, beliefs in the benign neglect theories were
more prevalent than beliefs of malicious intent. Age, gender, and education were not
contributors to belief in conspiracy theories. These findings show, once again, that these
beliefs appear unrelated to those demographics but are, rather, related primarily to race.
The factor analysis in this study also helped to reveal the nature and complexity of these
beliefs (e.g., benign neglect versus malicious intent).
The next study undertaken in this area moved beyond the prevalence and
correlates of these beliefs and tested theories related to racial differences. Crocker et al.
(1999) hypothesized that the beliefs would be related to system blame, a tendency to
make external attributions for the problems facing one?s racial group, which may be an
attempt to cope with the threat to the self that the situation of inequality poses.
Participants were recruited primarily from the psychology department?s subject pool at a
21
large, predominantly White, Northeastern university. Belief in government conspiracies
against Blacks was assessed with a 13-item scale developed for the study; two items were
related to AIDS. Black students scored significantly higher on the belief in conspiracies
index than did White students. Moreover, results revealed a significant effect of race on
each individual item. The results also were compared to the New York Times/CBS News
survey (DeParle, 1990). Results demonstrated that belief in conspiracies is at least as
widespread, and perhaps more so, among relatively advantaged college students as
compared to the general population.
Next, Crocker, et al. (1999) sought to examine explanations for the racial divide.
Black students were higher than White students in system blame, meaning that they were
more likely to attribute problems in the Black community to prejudice and
discrimination. Initially, family income (but not parents? education or participant?s sex)
was a significant predictor of belief in conspiracies, but once race was added to the
model, none of the other demographic variables were significantly related to belief in
conspiracies. When all predictor variables were considered together, system blame was
the only variable to predict belief in United States government. Rather than attribute the
wide disparities in the outcomes experienced by Black and White Americans as some
deficit in Blacks themselves, many Black Americans appear to attribute these disparities
to problems associated with the power held by White Americans, namely prejudice and
discrimination.
Bogart and Bird (2003) also began to explore some of the implications of
conspiracy beliefs about HIV/AIDS among African American adults. The researchers
conducted a cross-sectional, anonymous telephone survey with a national sample of
22
African American adults. During the interviews, participants were asked to report the
extent to which they agreed or disagreed with nine statements regarding belief in
HIV/AIDS conspiracy theories, most of which were adapted from prior research. Six
items measured belief in conspiracies about the government and three items assessed
belief in conspiracies about new treatments for HIV; scoring was on a 5-point scale.
Scores on the HIV/AIDS government conspiracy scale averaged around the
midpoint (M = 2.94), and scores on the HIV/AIDS treatment scale were slightly lower (M
= 2.20; Bogart & Bird, 2003). The two scales were significantly, moderately correlated.
Greater endorsement of an HIV/AIDS government conspiracy was significantly related to
greater number of partners in the last three months and to lower perceived quality of
condoms as a method of birth control. Belief in a treatment conspiracy was significantly
related to more positive attitudes about using condoms in the next three months and to
greater intentions to use condoms during the next engagement in sexual intercourse (i.e.,
participants presumably wanted to avoid contracting the disease so that they could avoid
treatment).
Bogart and Thorburn (2005) conducted a similar study. The research examined
endorsements of HIV/AIDS conspiracy beliefs and the relationship of those beliefs to
condom attitudes and condom use among African Americans. The study was an
anonymous telephone survey of African American adults. Endorsement of HIV/AIDS
beliefs and the relationship of beliefs with condom attitudes and condom use were the
focus of analyses and results. Total scores on the HIV/AIDS conspiracy beliefs scale
averaged around the midpoint (2.34 on a 5-point Likert scale), with men reporting
significantly stronger conspiracy beliefs than women. HIV/AIDS conspiracy beliefs were
23
not significantly related to condom attitudes or use in the overall sample or with women
only, but were significantly associated among men. Men who held stronger HIV/AIDS
conspiracy beliefs had more negative attitudes about condoms and were less likely to use
condoms consistently. The correlations were significant among males, so the researchers
then tested whether men?s attitudes about condoms mediated the relationship between
endorsement of conspiracy beliefs and condom use. Results indicated that the relationship
between HIV/AIDS conspiracy beliefs and condom use was reduced to nonsignificance
when condom attitudes were included in the model, suggesting that condom attitudes
could be considered a mediator. The relationship between sexual attitudes and behavior
with endorsement of these beliefs suggests, as do the results of all of the reviewed
studies, that these beliefs represent an important research topic.
Summary of the Empirical Literature
Examining the reviewed studies together makes clear, first of all, that many
African Americans possess beliefs about large-scale discrimination in regard to
HIV/AIDS. While estimates of the prevalence vary in terms of level of endorsement and
type of belief (e.g., 70% of participants agreed with the statement that the government is
not telling the whole truth about AIDS [Parsons et al., 1999], while 27% of participants
believed that the government deliberately created AIDS to kill Black people [Klonoff &
Landrine, 1999]), the phenomenon has been pervasive throughout these disparate studies
that have emerged from multiple fields of study. Overall, results demonstrated that
endorsement of mild or ?benign? beliefs is more common that endorsement of more
?malicious? beliefs (e.g., Parsons et al.).
24
Furthermore, African Americans? beliefs about large-scale discrimination
regarding HIV/AIDS are significantly more prevalent than Caucasian Americans?,
regardless of the nature of the beliefs, e.g., benign or malicious (e.g., Dusenbury et al.,
1994; Herek & Capitanio, 1994; Crocker et al., 1999). The literature also suggests
explanations for this discrepancy. Klonoff and Landrine (1999) found that lower levels of
acculturation (i.e., stronger immersion in black culture) and experiences of racism
predicted endorsement of these beliefs. Crocker et al. found that when system blame (the
tendency to attribute problems to prejudice and discrimination) was entered into a
regression equation with other relevant variables (race, income, and other psych-social
variables), system blame was the only predictor of endorsing large-scale discrimination
beliefs about HIV/AIDS; their results support the theoretical argument that these beliefs
have arisen from cultural history and experiences of African Americans in the United
States, rather than from personality characteristics or defects (Crocker et al.). Results
consistently showed that endorsements of beliefs about large-scale discrimination
regarding HIV/AIDS are unrelated to income or to education (Goertzel, 1994; Parsons et
al., 1999); specifically, several researchers found that once race was entered into their
regression equations, income and education were no longer predictors of these beliefs
(Herek & Capitanio; Klonoff & Landrine; Crocker et al.).
Finally, some implications of large-scale discriminatory beliefs about HIV/AIDS
and the government and medical community have been explored as well. Bogart and Bird
(2003) found that belief in government conspiracies was related to a greater number of
sexual partners in the last three months and a lower perceived quality of condoms. Bogart
and Thorburn (2005) found that HIV/AIDS conspiracy beliefs were related to condom
25
use only in men. For men, the beliefs were correlated with more negative attitudes about
condom use and a lower likelihood of using condoms consistently.
Statement of the Problem
Existing literature regarding beliefs about large-scale discrimination with regard
to HIV/AIDS among African Americans clearly has demonstrated pervasiveness of these
beliefs and even has explored several implications of these beliefs (e.g., risky sexual
behavior, variable condom use; Bogart & Bird, 2003; Bogart & Thorburn, 2005).
However, researchers have yet to study the nature of the beliefs exhaustively. Although
several authors conducted focus groups prior to their quantitative analyses in order to
inform the construction of their measures (e.g., Dusenbury et al., 1994; Herek &
Capitanio, 1994), all of the previous research reviewed for the current study relied solely
on asking participants about their agreement with statements constructed by the
researchers (e.g., Goertzel, 1994; Herek & Glunt, 1991; Klonoff & Landrine, 1999;
Parsons et al., 1999). Thus, the only empirical analysis of such beliefs to date has been
achieved through quantitative measures that did not allow for discovery of beliefs
generated by the participants themselves. Such methods raise the question of whether
African Americans? beliefs about HIV/AIDS have been fully explored or uncovered.
Second, previous research has studied African Americans generally. The literature
has not focused on examining the prevalence or implications of these beliefs among
African American individuals who are HIV-positive. Several bodies of literature inform
why such an exploration is important. In particular, research findings regarding
medication adherence and coping with chronic illness suggest potential implications for
these beliefs among African Americans who are living with HIV/AIDS.
26
Medication adherence. The health belief model (Becker et al., 1977) is the most
widely used model for explaining people?s health-related actions or behaviors, including
medication adherence (Barclay et al., 2007). According to the health belief model, a
patient?s decision to be adherent or nonadherent to medication is derived from the
patient?s assessment of the relative costs and benefits of the treatment. If perceived costs
outweigh the perceived benefits, patients are less likely to adhere to their medication
regimen (Lacro et al., 2002; Osterberg & Blaschke, 2005). Thus, among other factors,
attitudes and beliefs about medication are posited to play a role in medication adherence.
Substantial empirical support exists for the health belief model. Janz and Becker
(1984) critically reviewed 29 investigations concerning the health belief model. A
significance ratio was utilized to examine the efficacy of the model; the authors
constructed a ratio that divided the number of positive, statistically significant findings
for dimensions of the model by the total number of studies reporting significance levels
for those dimensions. Results indicated considerable support for the model. Since then,
many subsequent empirical investigations have found support for the model (e.g.,
Juniper, Oman, & Hamm, 2004; Sapp & Jensen, 1998; Winfield & Whaley, 2002),
including at least one study that found support for the model among HIV-positive adults
(Barclay et al., 2007). Thus, strong empirical evidence exists to support the theory that
attitudes and beliefs about medication play a role in medication adherence, including
adherence among HIV-positive individuals.
Based on research discussed in the current review, it is clear that some African
Americans have negative views about HIV medications (e.g., Bogart & Bird, 2003).
Bogart and Bird found that African Americans endorsed beliefs that people who take new
27
medicines for HIV are human guinea pigs for the government (43% of the sample agreed
or strongly agreed), that the medicine that doctors prescribe to treat HIV is poison
(9.3%), and that the medicine used to treat HIV causes people to get AIDS (9.1%). The
health belief model suggests that such beliefs would contribute to nonadherence among
African Americans with HIV.
Why is medication adherence important, particularly among individuals who are
HIV-positive? In general, poor adherence to medication regimens accounts for substantial
worsening of disease and death and also increases health care costs (Osterberg &
Blaschke, 2005). It jeopardizes the outcome of treatment for every medical and
psychiatric condition (Lacro et al., 2002). This is especially true for individuals who take
medications for HIV (Osterberg & Blaschke). Barclay et al. (2007) pointed out that while
the introduction of highly active antiretroviral therapy (HAART) has transformed HIV
treatment and prognosis by substantially reducing morbidity and mortality from
HIV/AIDS, early optimism was offset by the evidence that even occasional nonadherence
can greatly diminish the benefits of treatment. Patterson et al. (2000) found that
adherence greater than 95% is needed to achieve successful biological and clinical
outcomes, and that suboptimal adherence is associated with clinically significant health-
related setbacks. Nonadherence to HAART also has been described as a public health
concern because it results in the development and spread of drug-resistant strains of HIV
(Ickovics & Meade, 2002). Several authors (e.g., Ickovics & Meade, 2002) have cited the
importance of identifying risk factors related to medication adherence generally and
regarding HIV specifically. Thus, examining the beliefs under investigation in the current
28
study as they relate to individuals who are HIV-positive could identify a risk factor for
medication adherence.
Illness representations and coping. Another model that informs the potential
relationship between living with HIV/AIDS and the beliefs under investigation in the
current study is the common sense model of illness representations (Leventhal, Meyer, &
Nerenz, 1980). The model addresses how cognitive factors influence coping and
subsequent outcomes related to illness by identifying factors involved in the processing
of information related to one?s disease or illness, describing how the information is
integrated to form a ?lay? view of the illness, and outlining how the lay view guides
coping behaviors and outcomes. The model suggests that individuals create mental
representations of their illness based on the sources available to them, and that such
representations lead to engaging in coping strategies and adopting ways to manage illness
(Hagger & Orbell, 2003). The cognitive factors, or illness representations, have been
found to consist of several distinct (though somewhat overlapping) dimensions. One such
dimension is known as the cause dimension, which represents one?s beliefs regarding the
causes of one?s illness (Hagger & Orbell, 2003). Beliefs about causes that have been
identified include psychological reasons (e.g., stress, personality, depression, workaholic,
lack of rest), environmental reasons (e.g., chemicals, pollution, sprayed food, use of
medication, and malnutrition), and fate (Heijmans & de Ridder, 1998). As stated above,
the model posits that such beliefs impact coping, and there is empirical support for that
relationship. For example, a strong belief in external causes of illness has been associated
with more social support-seeking and more behavioral-avoidant coping (Heijmans & de
Ridder, 1998).
29
As I discussed earlier, African Americans? responses to HIV/AIDS have included
the formation of beliefs about its cause. My review of the literature showed that some
African Americans have endorsed beliefs that AIDS could be spread through casual
contact (Herek & Glunt, 1991), that the AIDS virus was created deliberately in a
government laboratory (Goertzel, 1994), that HIV is a man-made virus, and that the
medicine used to treat HIV causes people to get AIDS (Bogart & Bird, 2003). The illness
representation model (Leventhal et al., 1980) suggests that if African Americans who are
living with HIV hold such beliefs, such beliefs likely influence how those individuals
cope with their illness. It is well documented in psychological literature that coping styles
relate to individuals? ability to establish and maintain psychological well-being during
chronic stressful events (e.g., illness; Folkman & Moskowitz, 2004). Clearly, African
Americans? beliefs about large-scale discrimination regarding HIV/AIDS have
potentially important implications for people with HIV, and this intersection is thus
deserving of empirical study. However, I did not uncover any existing research
addressing that intersection.
Purpose of the Study
Available literature suggests that some African Americans hold beliefs about
large-scale discrimination against them with regard to HIV/AIDS. However, research
regarding the nature of such beliefs has not been exhaustive. In addition, I was unable to
find any existing theoretical or empirical literature directly addressing how African
Americans? beliefs about HIV (as defined in my literature review) might relate to what it
is like for them to live with the disease. Available literature suggests that such beliefs
30
may be related to medication adherence or to coping styles among individuals who are
living with HIV.
The purpose of the current study was to conduct in-depth research that uncovered
the nature of African Americans? beliefs about HIV/AIDS, and to explore the
implications of such beliefs among those who are actually living with it. In order to
accomplish that goal, I needed a methodology that would allow me to uncover aspects of
the beliefs and their relationship to living with HIV that have not yet been hypothesized
in the literature. Since little is known about the intersection between African Americans?
beliefs about HIV/AIDS and their experiences of living with the illness and no existing
theoretical literature fully explains their connection, it also was desirable for me to use a
methodological approach that would allow me to construct a theoretical framework for
articulating that relationship.
Framework of the Current Study
The current study utilized grounded theory, a qualitative methodology whose
primary goal is theory development (Glaser & Strauss, 1967). Strauss and Corbin (1990)
noted that qualitative methods can be used to uncover and understand what lies behind a
phenomenon about which little is known and can provide details of phenomena that are
difficult to convey with quantitative methods. They also noted that some areas of study
naturally lend themselves to qualitative research. They stated that research attempting to
uncover the nature of people?s experiences with illness is particularly well-suited to
qualitative research. Thus, such an approach allowed me to achieve my research goals of
describing details of a phenomenon (African Americans? beliefs about HIV/AIDS),
31
discussing African Americans? experiences in living with HIV/AIDS, and articulating the
relationship between those beliefs and experiences.
Grounded theory was selected as the specific qualitative methodology utilized in
the current study for several reasons. It was chosen primarily because it allows
researchers to discover categories and relationships among them, fosters the identification
of connections between events, and emphasizes theory development (Charmaz, 2000;
Strauss & Corbin, 1990, 1994). Once again, these characteristics were optimal in
providing me the opportunity to achieve the goals of the current study. Employing a
research method that led to theory development allowed me to articulate the relationship
between HIV-positive African Americans? beliefs and experiences. In addition, grounded
theory focuses on giving participants a voice, which was important given my review of
how the population studied in the current research has been marginalized. Grounded
theory also has been used extensively in studies of chronic illness in the past (e.g.,
Charmaz, 1990). An additional reason that grounded theory was chosen was my personal
familiarity with the method; I had previously worked on a research study that utilized
grounded theory and had learned about the method and analysis.
Even within grounded theory, several different philosophical stances have been
taken. Charmaz (2000) suggested that grounded theory may be conceptualized on a
continuum of objectivist to constructionist. She asserted that most grounded theorists
write as if their data have an objective status and reflect reality, suggesting that one
universal truth and a true, testable, verifiable theory could be found. In contrast,
constructivist grounded theorists distinguish between real and true; they do not seek one
universal truth, but rather attempt to discover what participants define as real and how
32
those definitions of reality impact them. Charmaz asserted that data are narrative
constructions, and as such, they are reconstructions of participants? experiences?data are
not the experiences themselves. She asserts that researchers may place an emphasis on
meaning without assuming the existence of a unidimensional external reality. Thus, the
goal of the analysis is to seek meaning. She explains that constructivist grounded theory
?assumes that people create and maintain meaningful worlds through dialectical
processes of conferring meaning on their realities and acting within them? (p. 521). In
studying such a process, she recommends examining beliefs and ideologies as well as
situations and structures.
A constructivist approach was assumed for the current study in relation to my
goals of understanding people?s beliefs and how they relate to their lived experiences?
that is, how they confer meaning on their realities, and act within them. The decision to
adopt a constructivist approach also was a philosophical one. I agree with Charmaz
(2000) that, in general, research produces one temporally bound reality, as opposed to a
universal truth. In addition, constructivist grounded theory recognizes that the concepts,
categories, and theoretical level of analysis emerge from the researcher?s interactions
with the participants and the data. I conducted my study from a constructivist perspective
because I wanted to work within a framework that shared my philosophical
underpinnings and incorporated them into the analysis. This is accomplished in part
through attention to detail, which sensitizes researchers to multiple realities and
viewpoints. Charmaz also recommended using grounded theory methods as flexible
strategies that are emergent and interactive rather than as guidelines or rules that are
didactic and prescriptive. In so doing, grounded theory can be used to advance
33
?knowledge of subjective experience and expand its representation while neither
remaining external from it nor accepting objectivist assumptions and procedures? (p.
521).
Research Questions
In order to formulate a grounded theory, research questions are needed that give
researchers the flexibility and freedom to explore a phenomenon in depth (Strauss &
Corbin, 1990). The underlying assumption is that not all of the concepts pertaining to the
phenomenon being studied have been identified. Thus, the research questions need to
allow room for the discovery of new concepts related to the phenomenon under
investigation. I constructed research questions for the current study with those goals in
mind. The questions related clearly to the literature review and to my hypotheses about
how HIV-positive African Americans? beliefs and experiences might interact, while also
remaining broad enough to capture potential new concepts.
Research Question 1: What do HIV-positive African Americans believe about
HIV/AIDS, and what are their sources of information?
Research Question 1a: What do HIV-positive African Americans believe about how or
why people get or have HIV/AIDS?
Research Question 1b: What do HIV-positive African Americans believe about the role
of the government in HIV/AIDS?
Research Question 1c: What do HIV-positive African Americans believe about the role
of medications and health care institutions in HIV/AIDS?
Research Question 1d: What have HIV-positive African Americans heard about
HIV/AIDS that they do not believe?
34
Research Question 1e: What sources do HIV-positive African Americans believe
regarding information about HIV/AIDS, and what sources do they not believe?
These research questions were designed to investigate the nature of participants? beliefs,
in keeping with the first goal of the study.
Research Question 2: How do HIV-positive African Americans? beliefs about
HIV/AIDS relate to their experiences of living with HIV/AIDS?
This was the primary research question of the study; it related directly to the goal of
exploring the relationship between African Americans? beliefs about HIV/AIDS and their
experiences of living with the disease.
Research Question 3: How have HIV-positive African Americans? beliefs about
HIV/AIDS changed over time?
This question was included because previous research has shown that individuals?
appraisals of their illnesses (including HIV) sometimes change over time, which suggests
that education and support may influence coping (e.g., Moskowitz & Wrubel, 2005).
35
Chapter 3
Method
Recruitment
Recruitment of participants took place at the Austin Center, one of two outpatient
day treatment centers that are part of Whitman-Walker Clinic, a non-profit, community-
based health organization serving the Washington, DC metropolitan region. The mission
of Whitman-Walker Clinic is to provide or facilitate the delivery of high quality,
comprehensive, accessible health care and community services for gay, lesbian, bisexual,
and transgender people and people living with HIV/AIDS. Whitman-Walker Clinic spans
several locations in the Washington, DC metropolitan region. The Austin Center is
located in Northwest Washington, DC, near the Columbia Heights neighborhood.
The Austin Center provides day treatment services for people living with
HIV/AIDS. The center provides a supportive community where clients receive
medical/nursing care, counseling, socialization, and other services. Depending on
personal needs, clients attend daily groups that address addictions (recovery, relapse
prevention, and harm reduction techniques), health education (focusing on adherence
issues and maximizing wellness), mental health, skills building (including independent
living skills, e.g., cooking, budgeting, communication, assertiveness, and stress
reduction), and general support. In addition, two nutritionally balanced meals are
provided each day, and field trips are frequently planned for the clients, as well. Many of
the clients were long-term clients of the program or the clinic as a whole, and most
clients knew each other quite well, resulting in a culture of support and education.
36
The Austin Center was appropriate as a place of recruitment for the current study
in that it consisted of a large group of African American clients who were gathered in one
place, readily available to participate; nearly 100% of Austin Center clients are African
American, and clients attend the program each weekday from morning through mid-
afternoon. With cooperation from the clinical director of the program, the primary
researcher arranged to attend the program?s daily community meetings in order to recruit
participants.
I explained to clients that I had been an intern at the clinic, was a graduate student
at the University of Maryland, and was conducting a research study as part of my
academic requirements. I explained that the purpose of the study was to learn about
African Americans? beliefs about HIV/AIDS. Clients also were informed that those who
participated in the study would receive a $10.00 grocery card for their participation.
Clients were informed that refusal to participate in any part of the study, i.e., choosing
not to answer an interview question, would not jeopardize the grocery card reward.
My only absolute criteria for recruitment were African American race/ethnicity
and HIV-positive status, which all of the clients met; therefore, everyone to whom I
spoke was eligible to participate. I visited the center every day for approximately two
weeks, simultaneously recruiting and interviewing participants during that time period.
Each time I recruited at the daily meetings, clients were invited to approach me at the end
of the meeting if they would like to schedule an interview appointment. I was available to
schedule two to three appointments per day for approximately two weeks and was able to
accommodate nearly every volunteer. On several occasions, the scheduled participant
was unavailable on the scheduled date and an additional volunteer?at times, a client who
37
had not initially fit into the interview schedule?was available and was interviewed on
that date.
Theoretical Sampling
In outlining the procedures of grounded theory, Corbin and Strauss (1990) stated
that representativeness of concepts, not of persons, is crucial. It is by theoretical sampling
that such representativeness is achieved. Theoretical sampling is a process by which data
analysis occurs concurrently with sampling (Fassinger, 2005). Theoretical sampling is
used to develop emerging categories and to refine ideas (Charmaz, 2000), and is thought
by most researchers to be completed at the point of ?saturation??that is, when new data
fit into the categories already devised (Charmaz).
Some researchers accomplish theoretical sampling by returning to previous
participants or by interviewing additional participants as data analysis proceeds, a
strategy that Charmaz (2000) asserted is not necessary. Charmaz asserted that theoretical
sampling also includes returning to existing data to sample scenes, events, or documents.
In addition, Fassinger (2005) noted that in the interest of time constraints (e.g., limited
time in which to conduct interviews), she chooses a demographically diverse sample
within her population of interest, with the assumption that will provide the widest range
of experience possible within that group. She also conducts interviews that are
sufficiently lengthy to allow for collection of data that has both breadth and depth. She
noted that when she engages in such practices, returning to interviewees is rarely
necessary given the relatively large and diverse data sets she has collected.
Given my time and geographical constraints, I was guided by Charmaz?s (2000)
assertions and Fassinger?s (2005) practices in selecting my interview sample. Thus, the
38
primary goal of recruitment was to select participants who were diverse (e.g., in terms of
gender, sexual orientation, or HIV-related demographics) in order to capture the
maximum variability possible in the sample with regard to the initial data collected. I
ceased data collection when I had a demographically diverse group of participants and I
had begun to hear similar concepts discussed during the interviews.
Interviews
Each interview was held in office space at the Austin Center. All interviews were
audiotaped on two separate tape recorders, to guard against losing data due to technical
difficulties. After completing their interviews, participants were given their $10.00
grocery card rewards (one per participant) for their participation, as well as contact
information for the faculty researcher and the telephone number for Whitman-Walker?s
crisis hotline (see Appendix A). A field notes form (see Appendix B) was completed by
the interviewer (myself) immediately following each interview, documenting the length
of the interview, general themes that emerged, comments on the rapport between
interviewer and participant, and any other relevant information (e.g., interruptions,
technical difficulties).
Interviews were to be considered pilot interviews until the interview protocol and
process were deemed effective. The purpose of conducting pilot interviews was to assess
the efficacy of the field notes form and of the interview protocol. In particular, the
relevancy of the questions and whether any questions might be missing were explored.
Ultimately, only one interview was considered a pilot interview, because it was
determined based on the interviewee?s feedback and the interviewer?s own perceptions
that there was no need for any modifications of the interview protocol or procedures, and
39
that the interviewer had sufficient practice and was ready to complete interviews that
could be used for analysis. The willingness of the participants to answer the questions
and to trust the researcher also was explored; for further discussion, see the following
section.
The Interviewer
I personally conducted all of the interviews. I am a female, European American,
counseling psychology doctoral candidate, and at the time of the interviews, was 26 years
old. Given that the participants were all African Americans and that the background of
the current study suggests that African Americans may be mistrusting of the government
and medical institutions, which they appear to associate with White people and values, a
discussion of my decision to conduct the interviews myself is warranted.
Initially, I was inclined to conduct the interviews myself simply because I am the
primary researcher and am passionate about the project. In consultation with several
faculty members who are experienced in conducting qualitative research, a number of
other advantages to my conducting the interviews were identified. As a fourth year
student, I possessed advanced clinical skills that would likely be useful in conducting the
type of semi-structured interview for which my study called, and that would likely
surpass the skills of someone with less experience whom I might have trained to conduct
interviews for me. I also had prior experience conducting semi-structured interviews for a
grounded theory study. In addition, I had a relatively long-term relationship with the
Whitman-Walker Clinic and some of its clients, having been an intern there for two
years. I hypothesized that my relationship with the clinic was likely to enhance
participants? trust in me. Staff members at all levels of Whitman-Walker Clinic attempt to
40
foster a culture of trust within and between staff and clients. Indeed, the mission of the
clinic is built around the idea that these individuals need health care providers whom they
can trust. At the Austin Center in particular, many clients had long term relationships
with the clinic (refer to Chapter 4 for a detailed discussion regarding participants?
perception of and relationship with the clinic). Even more specifically, I was known well
by one Austin Center client because I had a therapeutic relationship with that client in the
past; that client had expressed trust in me, and I expected that the client would inform
other potential participants that I was trustworthy. In short, consensus among committee
members was that my relationship with the clinic was likely to outweigh perceptions
about my race.
I also turned to existing literature on cross-race interviewing (i.e., race-of-
interviewer effects). Initial research regarding cross-race interviewing found that race of
interviewer was associated with bias ?only when social distance is high and when an
interview question is highly threatening? (Williams, 1964, p. 338). More recently, Davis
(1997) noted that ?characteristic of the traditional role-playing behavior meant to appease
and accommodate Whites, African-Americans out of a sense of fear or intimidation are
expected to conceal their true political beliefs and place self-imposed limits on their
freedom of expression in response to the White interviewer? (p. 309). On the other hand,
Rhodes (1994) and Hall (2004) have asserted that racial matching (i.e., choosing an
interviewer who is the same race as the participants) runs the risk of portraying the
research topic as solely an ethnic-minority issue, and thus marginalizing the issue.
Rhodes also has noted that racial matching suggests an assumption of a single truth. Such
an assumption is antithetical to the constructivist paradigm in which I placed the current
41
study. Hall herself is White and conducted interviews with South Asian women. She has
stated that a White feminist researcher is likely to be viewed as an outsider by ethnic
minority interviewees, but that there are pros and cons to such a dynamic. For example,
an ethnic-majority interviewer/researcher is likely to hold structural power over ethnic-
minority participants; however, ethnic-minority participants may hold personal power
(i.e., refusing an interview, withholding information). Furthermore, ?in some interview
situations the researcher?s ethnicity, gender and/or class may not necessarily be the focus
upon which the minority ethnic participant relates to the majority-ethnic interviewer?
(Hall, p. 139).
Ultimately, I interpreted the literature to be favorable toward the idea of my
conducting the research interviews. I decided that conducting the interviews myself
would allow me to obtain skillfully conducted interviews that were consistent with the
constructivist stance of the overall study. Rather than simply rely on assumptions, I also
decided to solicit feedback about the interview process from my participants at the close
of the interviews.
Only two participants offered substantive feedback (i.e., more than a word or
phrase) about the interview process, and both sets of feedback were positive. The first of
the two participants essentially noted that any risk regarding trusting me was worth it for
the good of himself and the cause:
If?I?m not doing any harm nowhere, I don?t care what you think about me, I got
to think about myself. If there?s anything along the way that I can help you with,
I?ll help you, but if not, I don?t have time to focus on that, because I?m not doing
anything to you?anything that I might be able to share that may help somebody
else somewhere down the line, well, I?m pretty much willing to do that, you
know?...This thing isn?t something to play with, you know. Hopefully one day,
we?ll find a cure.
42
I commented to the same participant that I hoped my connection to the clinic would help
people to trust me. He responded that, ?Yeah, that made a difference too, when you did
say something about, you worked over there for awhile, you know, that made a difference
too. Because, I mean, like, I?ve actually been to the point where someone would come in,
and I wouldn?t say nothing, anything to them.? The feedback from the second participant
who offered it also involved a reaction to me:
The only thing I would like to say is I?m glad you came and I took part in it [the
study] because it gave me to express my feelings and somebody else could hear
how I feel about things instead of, because, you know, because sometimes you try
and address it here and somebody feels another way?but I like the way I can
express these words?So, it was a positive experience.
Participants
Sixteen participants were recruited and interviewed. Since one interview was
considered a pilot interview, the total number of participants included in the analysis was
15. Ten of the participants were male and five were female, which reflected the greater
ratio of men to women in the program as a whole. Ten of the participants identified as
heterosexual, two participants identified as gay, two identified as bisexual, and one
identified as both bisexual and gay. Nine of the participants were currently in
relationships, while six were not. Three of the participants discussed having been
divorced, and two participants had lost partners through death. Eleven participants had
children: five had two children, four had one child, and two had three children; four
participants had no children. The age range of the sample was 36-60; the average age of
the participants was 52. Eight participants had completed some college, four had
completed high school, two had completed some high school, and one had completed
eighth grade. All participants? source of income was disability?either Supplemental
43
Security Income (SSI) or Social Security Disability Income (SSDI). The participants?
average self-reported income was $693 per month. One participant did not know his
income and therefore was excluded from that calculation. When asked about
identification with a particular religion or spirituality, eight participants identified as
Baptist (with one specifically identifying as an ?open minded Baptist?), three claimed no
religious identification, one identified as Catholic, one as Christian, one as Lutheran, and
one as spiritual. The participants were reported being diagnosed with HIV between the
mid-1980s and 2002. Eight of the participants also were diagnosed with AIDS, all during
the 1980s and 1990s.
Instruments
Interview protocol. The research questions posed by the current study were
explored through the use of a semi-structured interview protocol (see Appendix C)
developed by the primary researcher. The interview protocol included questions that were
designed to assess the nature of the participants? beliefs, connection between beliefs and
the experience of living with HIV, changes in beliefs over time, and experiences at
Whitman-Walker Clinic. The question regarding the nature of participants? beliefs
included prompts regarding the sources of the beliefs. The question regarding the
connection between beliefs and the experience of living with HIV included prompts
about treatment-seeking and about coping. The question regarding changes in beliefs over
time included a prompt about how the changes came about. The question regarding
experiences with Whitman Walker Clinic included prompts regarding how participants
heard about the clinic, services used, and initial and current impressions of the clinic. An
additional question in the protocol also allowed participants to add additional comments
44
that the interviewer?s questions did not address. The efficacy of the protocol was
explored during a pilot interview, and the initial protocol was deemed effective (i.e., no
changes were made to the protocol between the pilot interview and the analyzed
interviews).
Demographics. Demographics were measured by questions created by the
primary researcher (see Appendix D). Personal, HIV/AIDS-related, and clinic-related
demographics were assessed. The questions were contained in a form such that I could
record participants? responses for quick reference at a later point; the forms were not
given to the participants themselves. The questions were asked as part of the interviews
(the protocol included prompts which directed me to turn to the demographic questions),
with participants having the opportunity to discuss their responses at length.
Field notes form. A field notes form (see Appendix B; c.f. Richie et al., 1997) was
completed by the interviewer immediately following each interview. The field notes form
documented the length of the interview, general themes that emerged, comments on the
rapport between interviewer and participant, and additional information that the
interviewer judged to be relevant (e.g., interruptions, technical difficulties).
Research Team
Corbin and Strauss (1990) noted that, ?A grounded theorist need not work alone?
(p. 11). They asserted that discussions among multiple researchers often lead to new
insights and increased theoretical sensitivity. They also noted that involving others in
one?s analysis helps to prevent personal bias. My personal belief, from a more
constructivist perspective, is that rather than prevent bias completely, teamwork tends to
introduce multiple biases. Such biases do not necessarily cancel each other out, but the
45
multiple perspectives from which team members approach the work may add depth to the
emergent theory.
Data for the current study were transcribed and analyzed by me and by seven
undergraduate research team members from the College of the Holy Cross, my alma
mater. Holy Cross is an undergraduate, Jesuit, liberal arts institution in Worcester,
Massachusetts. I chose to work with a research team for the reasons noted above, and
chose to work with Holy Cross students in particular for reasons of convenience. I was
familiar enough with Holy Cross to have ideas regarding how to recruit students there,
and my desire was to hold team meetings in a place near my home or work. I also felt that
leading a research team at my alma mater would give me a chance to mentor students
about whom I had a vested interest. I posted fliers in the Holy Cross building that houses
the psychology, sociology, and anthropology departments (see Appendix E). Nine
students expressed interest in participating; I interviewed all of them and invited seven of
them to participate in the research team.
All interviewees whom I invited to the team accepted, resulting in our eight-
person (including me) team. All eight of us were female. All of the team members except
me were age 20-22. Five of the team members were psychology majors, one was a
double major in psychology and sociology, and one was a sociology major. Four of us
identified as Caucasian or White, three identified as Hispanic or Latina, and one
identified as Haitian-American. All of us identified our sexual orientation as
heterosexual/straight. All members of the team were HIV-negative. Some team members
had previous experiences with people who were HIV-positive. As I discussed earlier, I
worked as a psychotherapy intern at the Whitman-Walker Clinic for two years; I have
46
continued to work as a therapist to HIV-positive individuals since then. Regarding the
other team members? professional or educational experiences, two team members
traveled to Kenya on an educational trip to learn about individuals with HIV/AIDS
during their membership on the research team; two team members volunteered at a local
HIV/AIDS organization and had been heavily involved there during the course of their
college careers, and an additional team member began interning at the same organization
during her course of participation in the current study. In addition, two team members
identified personal experiences that affected their outlook on HIV/AIDS: one had two
uncles who were HIV-positive, one of whom died as a consequence of substance abuse;
and the other had been tested for HIV herself and found the experience scary, which she
reported helped her relate to the participants? experiences.
The team members held a discussion regarding our personal biases related to the
research project. One common theme was that team members? own race/ethnicity and/or
experience (or lack thereof) related to HIV/AIDS contributed in unique ways to each of
us feeling very responsible to take action in the fight against HIV/AIDS, and in
particular, to tell our participants? stories as accurately as we could. We discussed our
experiences of feeling similar or different from the participants, and how those feelings
affected us. Ultimately, we agreed as a team that it felt beneficial to have worked with
team members who each were ?insiders? in some ways and ?outsiders? in others, as
related to the research topic and participants.
Transcription
All audiotaping was successful and no data were lost, with the exception of a
small amount of inaudible content from some interviews (i.e., transcribers? inability to
47
understand a statement or partial statement from an audiotaped interview). Members of
the research team transcribed the audiotaped interviews. After each tape was transcribed,
I checked each transcript by reading it along with the audiotape to check for and correct
any errors.
Data Analysis
All research questions were addressed through grounded theory analysis of
interview data. Data were analyzed by our eight-member research team. Data analysis
also was overseen by the chair of the dissertation committee, the primary researcher?s
advisor. In its essence, the process of grounded theory is about constant comparison
(Corbin & Strauss, 1990)?comparison of concepts to other concepts, concepts to
categories, categories to other categories, participants to other participants, and points in
time to other points in time (Charmaz, 2000). The first level of data to be understood and
compared is the conceptual level. In grounded theory, concepts are the basic unit of
analysis (Corbin & Strauss). Line-by-line coding sharpens attention to such concepts,
which facilitate comparisons, which informs the overall theory. Instead of confining data
to preconceived standardized codes, the researchers? interpretation of the data shapes
emergent codes (Charmaz).
Grounded theory has been criticized for ?fracturing the data??that is, critics
assert that the separation of data (such as transcripts) into codes and categories might
limit understanding by obscuring the participants? experience in its fullness (e.g., Conrad,
as cited in Charmaz, 2000). Although Charmaz asserted that it is possible not to ?lose the
forest for the trees? even through line-by-line coding, my personal experience with
grounded theory had taught me that breaking up data into very minute pieces could
48
obscure the context of the participants? statements. Thus, with a desire to preserve the
constructivist goal of understanding participants? lived experiences, I explained my
concerns to the research team, and we decided to code slightly larger chunks of data than
is described as preferable by Charmaz. The goal was that once the data were sorted by
code number and were no longer visible in the context of an entire transcript, the context
could still be fairly easily understood. We preserved the complexity of the data by
frequently coding sections of the transcripts with more than one concept label.
At our initial research team meeting, we created a provisional code list (see
Appendix F) by reviewing one transcript and labeling each small section of the transcript
(i.e., one thought or point discussed by the participant) with a concept (e.g., ?realization
regarding diagnosis?). Between meetings, team members coded three additional
transcripts (two members to each transcript), using the provisional code list and noting
concepts that were missing or problematic. At the following meeting, we discussed
members? findings and amended the code list, resulting in a second working list (see
Appendix G). Between meetings, team members coded three additional transcripts, and
at the following meeting, the list was amended further. At that point, relatively few
changes were made. We decided that the code list was relatively final and that we would
code all previously coded and uncoded transcripts using the updated list (i.e., transcripts
that already had been provisionally coded were recoded with the new list; see Appendix
H). Using the ?final? list (I place the term final in quotes because while we considered it
complete for the time being, we were always open to amending if necessary), all
transcripts were coded independently by two team members each. Transcripts were then
each checked in pairs by the two people who had coded them. The pairs came to
49
consensus on their coding and/or presented problems to the team for final decision-
making. It should be noted that it was permissible to apply as many codes as were
applicable to each block of text. Throughout that process, our code list remained
unchanged, suggesting that we had saturated the concepts (i.e., the addition of the
previously uncoded transcripts did not result in the addition of further concepts to the
code list).
In addition to relying on concepts as the basic units of analysis, grounded theory
relies on the construction of categories (Corbin & Strauss, 1990). This allows researchers
to compare concepts to one another, to compare concepts to categories, and to compare
categories to one another. After all of our transcripts were coded and the code list was
complete, we created a provisional list of categories by identifying and naming higher-
order, more abstract concepts and listing which codes/concepts were related to which
categories (Strauss & Corbin, 1990). It was permissible for concepts to be related to more
than one category. We amended the list several times, changing the names of the
categories as well as the concepts they encompassed, based on further analysis of the
concepts and how they related to one another and to the categories.
Further analysis of the data and the comparisons explained above were
accomplished through a process of propertizing and dimensionalizing outlined by Strauss
and Corbin (1990). Properties are characteristics of categories, and dimensions are the
possible locations of properties along continua. For example, properties of color might
include shade, intensity and brightness. Shade might be dimensionalized as varying from
dark to light, intensity might vary from weak to intense, and brightness might vary from
dark to light. In addition to simply creating properties and dimensions of each category,
50
we identified where each participant was located across each dimension. Charmaz (2000)
criticized such processes as being potentially too formulaic. However, it was helpful to
utilize a process that provided guidelines for examining the characteristics of our
categories, particularly because all members of the research team except for me were new
to qualitative research. At the same time, we tried to remain constructivist by not relying
exclusively on traditional dimensions as outlined by Strauss and Corbin. I encouraged
team members to describe categories in any way that was helpful, and as a result, we
occasionally described or depicted characteristics of the categories in ways other than
dimensions (e.g., lists or graphs).
To organize the data from a logistic standpoint, we created a database that
allowed us to list each concept along with its transcript number and code numbers. In
order to sort the data, we listed each block of text as many times as it was coded?for
example, if Text #1 were given three codes?say 6, 12, and 32?then the text appeared
first in Row #1 with Code #6, then in Row #2 with Code #12, and finally in Row #3 with
Code #32. This allowed us to sort the data by code number and still be able to see each
block of text that was coded with each number. Since blocks of text were repeated in the
database, they were also given what we called a ?blurb? number, so that the database also
could essentially be sorted back into the order of the actual transcripts. This enhanced our
ability to gain more context for any concept we read (i.e., if I did not understand the
meaning of a concept by itself, I could sort the database by ?blurb? number in order to
see it in the context of its own transcript rather than in a list of other concepts that shared
its code number).
51
Thus, members of the research team created properties and dimensions of
categories by sorting the database by code numbers and reading the content of all code
numbers that fell into the category in question. The goal was to identify characteristics of
the category that appeared across the codes that it encompassed, though in some cases,
characteristics were found primarily within one code. We first practiced identifying
properties and dimensions together as a team. Then each member of the team claimed
responsibility for one or more categories and completed the process for ?their?
categories. This allowed us to develop in-depth knowledge of the categories that we were
responsible for; thus, each category was very well understood by at least one member of
the team. (Please see Appendix I for a working draft of our category list, including who
was responsible for each category.)
Throughout the next several meetings, we presented our work to one another,
including thoughts and written statements regarding themes within the categories. We
continued to amend category titles and content as we engaged in the process of constantly
comparing our broader, more thematic work to our raw transcript data. Once our
properties and dimensions were complete, we engaged in another comparison (sometimes
viewed as a form of auditing), in which we checked one another?s work and again
compared our broader, more thematic work to our raw data. We returned to original
transcripts and checked that participants were properly placed along the dimensions we
had created. If participants were placed incorrectly, we edited their placements; we
conducted the process during meeting time so we could consult with one another in our
decision-making. If participants had not been placed at all along a dimension, we added
them when we had enough data from their transcripts to do so.
52
Once our analysis was complete, we turned to discussion about the overall themes
that existed within the raw data and the products of our analyses (i.e., the categories,
properties, and dimensions). We agreed upon what we thought was the primary point of
participants? interviews. As another form of auditing, half of our team created a working
theoretical model that encompassed the constructs that had emerged as a result of our
analyses, and we presented it to the other half of the team for review. During the team?s
final review and discussion, and even during the early stages of the writing process, we
continued to refine the model, categories, properties, and dimensions. During the writing
process, I constantly returned to the raw data, which continued to direct our final product.
Sometimes my conceptualization of the theory guided my search for quotations, and at
other times, the quotations continued to guide the theory. Even during that final stage, I
continued to use the team in an auditing role, consulting with them to come to consensus
about the results. Ultimately, we arrived at a complete and final list of categories and
their properties and dimensions (see Appendix J), as well as an emergent theory
(described in the next chapter).
53
Chapter 4
Results
The purpose of the current study was to articulate a theory reflecting the
intersection between African Americans? beliefs about HIV/AIDS and their experiences
in living with HIV/AIDS. As detailed in Chapter 3, the process began with interviews of
African American people who are living with HIV/AIDS. The interviews were
transcribed and coded by concept. Analysis, discussion, and auditing by me and the
members of my research team resulted in an emergent theory.
Overview of the Emergent Theory
The emergent, grounded theory, represented in Figure 1, reflects how our African
American, HIV-positive participants constructed meanings of HIV/AIDS for themselves.
The theory reflects that our participants found overall meaning by making sense of
HIV/AIDS personally, making sense of HIV/AIDS socio-culturally, and integrating both
forms of meaning. Such meaning relates directly and indirectly to their experiences (or
lack thereof) of education and support, and to their personal contexts. Each component of
the model interacts with the others in a bi-directional way, reflecting that all components
are capable of affecting one another. As such, individuals? personal context, experiences
of support and education, socio-cultural understanding of HIV/AIDS, and personal
understanding of HIV/AIDS all relate to the overall meaning that they create for
themselves with regard to HIV/AIDS.
Personal context. Personal context takes into account individuals? personal
demographics (e.g., gender, sexual orientation, religious affiliation), physical and mental
health, experiences and reactions to medication, and experiences and perceptions of
54
Figure 1. Making Sense of HIV.
Socio-cultural Meaning
 Cause/Contraction
 Perceptions of Society/
Institutions
Personal Meaning
 Emotional Reaction to
Diagnosis
Global Meaning
Support & Education
 Clinic/Support
 Education
Personal Context
 Demographics
 Health
 Medication
 Stigma
55
stigma. Physical and mental health includes HIV and AIDS status, other medical
diagnoses, experiences of symptoms and illness, history of substance abuse, and other
mental health diagnoses and concerns. Experiences with medication include number of
medications taken, side effects, and adherence. Stigma includes ease of disclosing HIV
status, perceptions of stigma experienced by others, and perceptions of stigma
experienced personally.
Support and education. This piece of the model reflects the level and type of
support and education received, including structural and program support, personal
support, and lack thereof. Also reflected is individuals? involvement in educating others.
Specifically, support includes clinic-related experiences, such as attitudes regarding
Whitman-Walker Clinic generally, length of time at the clinic, reactions/perceptions of
other clients, and responses to the gay community. Support also includes the perceived
role of doctors, reliance on or trust in doctors, who may or may not be affiliated with the
clinic, as well as other sources of support unrelated to the clinic or to medical care (e.g.,
friends, family). Education includes sources of education received and what sources are
believed, the role of education in coping, beliefs about what education is needed by
others or at large, and involvement in educating others.
Socio-cultural meaning. Socio-cultural meaning includes individuals? perceptions
about the cause or origin of HIV, and perceptions about institutions? and/or society?s role
in HIV (e.g., whether HIV/AIDS is prioritized, funded, or ignored). Perceptions about the
cause or origin of HIV include whether theories have been heard or believed that are
other than scientific, and what those theories are. Perceptions of institutions and society
56
at large include perceptions of the government, religious institutions, and medical
institutions (particularly pharmaceutical companies), and society in general.
Personal meaning. Personal meaning consists of individuals? emotional reaction
to their HIV diagnosis and their perceptions of their own role in contracting HIV.
Individuals? emotional reaction includes ways of coping, past and current reactions to
diagnosis, and sense of control.
Global meaning. The global meaning of HIV for HIV-positive, African American
individuals consists of the socio-cultural meaning they have constructed, the personal
meaning they have constructed, and the interaction between the two. Each component of
the model is related, implying that the global meaning is influenced not only by the socio-
cultural and personal meanings that individuals create, but also by support, education,
and personal context. In turn, the meaning that people create influences support,
education, and personal context. The global meaning encompasses what we found to be
the pinnacle or culmination of individuals? personal stories.
Profile of the Participants? Stories
What meaning have these individuals made of HIV, personally and socio-
culturally? From what contexts have they emerged, and what sort of support have they
experienced? In this section, I provide an overall profile of the participants by
summarizing the characteristics that they displayed, using the notation discussed above.
Before I begin to discuss participants? stories, allow me to explain how I define
and explicate the experiences of the participants. Charmaz (2000) recommends that
stories of participants analyzed through grounded theory be explicated in narrative
fashion. In order to do so clearly, I use a notation system that has been adopted by other
57
grounded theory authors in the past (e.g., Noonan et al., 2004; Richie et al., 1997).
Wording or phrasing such as most, the majority, many, usually, generally, typically, and
the participants indicate responses from 9 or more of the participants. Words and phrases
such as some, several, and a number of indicate responses from 5-8 participants. Finally,
the phrase ?a few? indicates responses from 4 participants or fewer. In addition, more
specific wording (e.g., all, half, three participants) also is used.
Overall, the participants are positive, determined individuals whose stories are of
perseverance through multiple barriers. Many have been diagnosed not only with HIV
but with other physical disorders (e.g., Hepatitis C, diabetes), and have histories of
substance abuse. Some participants have a diagnosed mental illness. Participants have
experienced side effects from their medications, and some continue to experience side
effects.
Initially, they reacted to their diagnoses with fear and/or a belief that they were
going to die. Most had a specific memory of when they were diagnosed, including a few
people who reported the exact day. Eventually participants sought out support, and
received it. While personal support came from different sources (friends, family, support
groups, church), most participants received some form of it. Participants also turned to
the clinic, particularly to their day treatment program, for support and education. Not all
participants were eager to seek out such support; some wanted to keep their HIV status a
secret and feared that their affiliation with the clinic would expose them, through being
seen entering or leaving the clinic, for example. Some heterosexual participants also were
wary of the clinic?s gay community.
58
While some participants intensely feared stigmatization, especially having heard
others? experiences of stigma, participants did not actually experience much stigma
themselves. Participants began to regard the clinic as their primary source of information.
Those who initially were uncomfortable with the gay community at the clinic came to
accept it. Participants reported overwhelmingly positive attitudes about the clinic; even
those who had initial problems or reservations discussed ways in which the clinic has
been helpful or beneficial. Most participants received their medical care through the
clinic, and doctors were discussed by many participants. Participants reported that they
trusted and relied on their doctors and that their doctors were a major source of
information for them. Participants developed positive views about medication, and most
reported adhering to their medication always or almost always (e.g., reported having
missed one dose).
Through all of their experiences, participants acquired an evolving sense of the
meaning of HIV, both in their own lives and in a broader sense. Most participants
identified that HIV particularly affects Blacks. They expressed concern for the
government only seeking profit-enhancing action and expressed disappointment in the
way government money is spent. They wish for the government to become more involved
with HIV/AIDS prevention and elimination. Many have heard theories about the origins
of HIV that are other than medical, but most do not believe any of them. While
participants still remember when they were diagnosed, their reactions have changed.
They have made meaning of HIV that casts them as active players who can live with their
disease. Particularly in light of their disappointment in the government, they have seen a
need to take action themselves?for example, by living life to the fullest, taking control,
59
keeping busy, and educating others. Overall, despite having faced disappointment and a
lack of control in many ways, participants explicitly or implicitly conveyed that they are
positive, determined individuals whose overall sense of HIV in their lives and in the
world drives them to persist through personal and structural barriers. Perhaps most
importantly, participants? understanding of HIV continues to evolve. As they continue to
live with the disease, all of the components of the model continue to affect one another.
Summarized one participant, ?Everyday I hear something different, even today it be
something totally different, it?s not the same all the time about HIV.?
Explication of the Emergent Theory
The following sections describe the components of the emerging theory in greater
detail. I also attempt to portray, through narrative and excerpts from the interviews, how
the components of the model fit together, and how ?global meaning? was manifested
within our participants. The next sections detail the four primary components of the
theory?Personal Context, Support and Education, Socio-cultural Meaning, and
Personal Meaning, the key categories that compose those components, and the
overarching component of the theory, Global Meaning.
Personal Context
Personal context includes participants? personal demographics, physical and
mental health, experiences and reactions to medication, and experiences and perceptions
of stigma.
Demographics. As dictated by the purpose of the study, participants were African
American individuals. Most of the participants were male. Most were heterosexual,
though some were gay or bisexual. Most participants held a high school degree and/or
60
some college credits. At the time of the study, participants all received income from
disability (either SSI or SSDI). Most participants had at least one child. However, most
participants reported not currently being in a relationship.
Some participants discussed their relationship status being directly or indirectly
related to their HIV status or their general health. Three participants discussed having
made a conscious choice not to date. For example, one bisexual male participant
commented, ?I?m not doing anything. You don?t want to go out and hurt people, you
don?t want to do that. I am not taking the chance.? Two participants chose to remain
single in relation to their sobriety. For example, a heterosexual female participant stated:
Don?t want to be [in a relationship]. No, I feel like I need to?My main focus is
on my health and my recovery. And from what I can see from people that are in
relationships, they are totally stressed all the time. I can be miserable all by
myself.
One heterosexual male participant?s wife died of AIDS six months after he was married,
leaving him to raise their three children alone. Two participants who were in relationships
during the time of our interviews were actually dating fellow clients. Thus, participants?
relationship status clearly was related to their HIV status, at least for some. One
participant summarized the fact the two can be related, though people might feel
differently about how:
You know, we talk about relationships. And everybody here talks about, I hear
somebody say I rather be in a relationship with somebody that?s not HIV and very
vividly I always will oppose, but that is just what they felt. But for any reason for
the type that I am and type of person, if I start a relationship I want it to be with
someone that?s HIV because that way it breaks down the wall, the pain, and all
that, to be deceptive or to be deceived, so you know it tears down, tears down all
that. So that way you can be open, and that way, you know, two people that?s at
the same bridge will help each other across.
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A similar pattern was found regarding participants? religious affiliations?that is,
some participants reported their personal religious experiences as either hurtful/damaging
or helpful/supportive with regard to their HIV status. Some of the participants were
Baptist, a few did not identify with a particular religion, and one participant each was
Catholic, Christian, Lutheran, or spiritual. Only one participant talked about his personal
experience with religious institutions being on the hurtful side. He stated that he did not
identify with a particular religion or spirituality, that ?I used to, but I?ve lost it I guess,
over the last few recent years. I used to be a Seventh Day Adventist, but I found my
church to be growing prejudiced instead of growing broad-minded so I got very
disappointed and left.? He was actually the only participant to report having felt
personally rejected by his religion or church. While many participants had overall
negative views of religious institutions, which I discuss as part of the Socio-cultural
Meaning part of the model, other participants who discussed their own religions reported
them to be personally accepting, and for some, a source of support. (One can begin to see
how the parts of the model overlap and influence one another; religion as a source of
support is discussed further as part of the Support and Education portion of the
theoretical model.) While views and experiences related to religion are further discussed
elsewhere, the current examples highlight how individuals? personal demographics?
relationship status, religion, and more?interact with the other parts of the theoretical
model.
Physical and mental health. In keeping with the purpose of the study, all
participants were HIV-positive. The date of participants? HIV diagnoses encompassed
about a 20-year time span, from the mid-1980s to 2002. However, most participants were
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diagnosed during the latter of those two decades, from 1992 to 2002. Eight of the
participants also had been diagnosed with AIDS. Of the participants who were diagnosed
with AIDS, a few were diagnosed with both HIV and AIDS at the same time. Only a few
participants discussed how they contracted HIV, or how they were diagnosed. A few
participants noted similar patterns of first noticing that they were sick or had physical
symptoms, then seeking treatment, which eventually led to HIV testing and diagnosis.
Some participants discussed physical symptoms either related or unrelated to their
HIV status. Six participants discussed the physical symptoms or illness they experienced
in direct relation to their HIV status. Most participants also mentioned having been
diagnosed with other illnesses or conditions in addition to HIV. These included diabetes,
Hepatitis C, high blood pressure, hypertension, joint disease/arthritis, kidney problems,
and stroke. One participant explained her experience with both HIV symptoms and other
health-related issues:
I know people who have had HIV for six or seven years who have never been ill.
They never had pneumonia. I?ve had three types of pneumonia. I was in the
hospital for months. I been plump all my life. The smallest I ever been in my life
was a size 18. When I got sick I was wearing 11 or 12, I never been that small in
my life. None of my friends knew who I was. You know, so when they see me
now they say, ?You look good. You look good as hell, girl! You know, real
good!? Because I was so sick, I couldn?t even walk. So it was really tough for me.
I think the hardest part that I have now is that I?m a diabetic. Cause I take insulin
four times a day.
In addition to physical health issues, participants discussed mental health issues.
Most participants were former substance abusers and were in recovery. Drugs of choice
included alcohol, cocaine, and heroin; a few participants indicated that they used drugs
but did not specify their drug of choice. Similar to other facets of participants? personal
context, a few participants? substance use related directly to their HIV status. At least one
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participant reported using drugs as a way to cope with finding out about his HIV
diagnosis, while at least one other participant discussed her recovery being a direct result
of having been diagnosed: ?When I got out of college, I started using cocaine?But when
I found out I had HIV, I stopped because I didn?t want to die. I didn?t need no program, I
just stopped.? The same participant also stated, ?I?d love to get high. But then I?d die.?
Participants discussed other mental health issues in addition to substance use and
recovery. Some participants reported having been diagnosed with a mental illness; these
included bipolar depression, unipolar depression, anxiety, and schizophrenia. A few
participants also discussed feeling under stress, a topic that is further discussed as part of
one?s emotional reaction to diagnosis, in the Personal Meaning section of the theoretical
model.
Medication. Participants not only experienced symptoms related to their physical
and mental health diagnoses, but also experienced symptoms in relation to their HIV
medications. Most of the participants experienced side effects from their medications in
the past, and about half of the participants were experiencing side effects during the time
of their interviews. Most participants reported that they were taking three medications. A
few participants were taking the new one-a-day medication, and there was a lot of talk
about that at the clinic when I visited. Most of the participants believed their medications
to be important and beneficial and adhered to them always or almost always. A few
participants reported that they had missed one dose, and one participant stated that he is
adherent ?95% of the time.? The voices of the participants convey their medication-
related thoughts and behaviors the best:
At first, I was too sick, too weak, to even think about it, I think I missed some. If
it wasn?t for my sister, I don?t think I would have taken my medication, but I had
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a sister that pushed me, said, ?You got to take this before leaving.? And I was
saying if I got sick one more time?I had the PCP pneumonia, went into the
hospital?And they kept me in the hospital for about three weeks. I mean, they
made me take my?I hated medicine. I didn?t like medicine before I got my HIV.
I didn?t like Tylenol, aspirin, or none of that stuff. So the doctor started feeding it
through my veins with the medication and two weeks, I was feeling alright. They
took blood from me to see how my CD count was doing. I just got tired of
hospitals, I said, ?I?m not coming back here.? So, when I went home, didn?t
nobody have to tell me to take my medicine or nothing. I did that all myself. And
from then on, I?ve been doing okay.
Sometimes I get that feeling, that everyday I was going there, I was going there
like every day in the beginning?my therapy?I would go every day, I mean, I
had to take my medicine in front of the doctor or whatever at the clinic everyday.
I was tired. But I kept going, because I knew these people were trying to help
me?I am just amazed they have these different types of medicine now that we
can take, one time there wasn?t?Things are getting a little better, you know?
One participant summed up his opinion succinctly: ?Well, if you don?t take the
treatments, and take the stuff, you?re going to die. Yeah. You might hang on for awhile,
but you?re going to die.?
In contrast, a few participants were wary of certain medications or regimens. One
participant was actually worried about stopping her medication. She stated:
Actually, they wanted me to take a year drug holiday, and I refused. My medicine
making me sick now, what is it going to do in a year. So I said no, I don?t think
so. Not going to experiment on me. Mm-mm. So I refused that?My CD4
count?well, it?s very good, and to take the drug holiday would determine to
them, you know, if I really, really need the medication. But I don?t want them to
experiment on me with that. You?re not going to experiment on me with
medication. When I came my CD4 count was 2. So from 2 to 1,035 within four
years is excellent. But you?re not going to experiment on me and get it back
down.
For the most part, however, participants had largely positive views about their
medications, despite having experienced side effects. Such views are very connected with
the other components of the model, particularly support and education, and are discussed
further in that section.
65
Stigma. Another construct that provides context regarding participants? personal
experiences and how they approach and think about HIV is that of stigma. Some
participants discussed stigma that they had feared or heard about from others, as well as
stigma (or lack thereof) that they had experienced themselves. In addition, most
participants discussed what it was like to disclose their HIV status to others.
A few participants talked about stigma that they heard others talk about or
expected, such as that people would not sit next to them on the bus, that people would
assume they were gay, that they might be given special plates and utensils that would be
cleaned with bleach, and that they would not be accepted. The following excerpts
highlight such beliefs.
I heard it from people I know, you know, if you contact it, automatically they
would think that you had sex with somebody of the same sex.
When I first came here, I wouldn?t sit outside, because I didn?t want anybody to
know, if they see Whitman Walker, they know I have the virus, you know, or that
it?s a lot of gay people, and all those types of things, you know, but then after
being here, it?s a situation where, you know, gay people, everybody, people that
weren?t gay, uh, you know, I mean, just that everybody was getting it, and people
got it in so many different types of ways, not necessarily through sex, that it
didn?t discriminate.
I wouldn?t even go sit in the front, you know, for a long time, you know. It took
me awhile to go out there, and I found that to be true of a lot of other people that
first came?I wouldn?t go out there?it says Whitman-Walker up there, I knew
people knew Whitman-Walker. I called it the AIDS clinic, you know. So, you
know, I wouldn?t go out there. The air conditioning could be off, and everything
else, and it could be 100 [degrees], and the breeze could be blowing out there, I
wouldn?t go sit out there, I?d sit there and sweat. (laughter)
Clearly, a few participants were concerned about how they would be viewed. Some
participants discussed how they actually were treated; a few felt accepted, while one did
feel stigmatized. The person who experienced stigma explained that it was difficult to
find people to live with (i.e., to share housing). One participant reported that people think
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she?s lying when she tells them that she has HIV because she looks good and does not fit
a stereotype. The others each reported that they felt accepted at church, that family didn?t
treat them differently, and that they have been treated ?fine,? respectively. The following
excerpt summarizes one participant?s experience in moving from fear of stigma to the
reality of how people treated her.
I had to get past the?I guess, getting past, you know, things about how people
were going to accept me when they found out, because I had heard when I was
first diagnosed, you know I started coming here and listened to people talk
about?this is before I disclosed my status to my family?And I heard people
talking about how their families kind of disowned them, and how they set them
apart, they, if they came to the house, they would have to eat out of paper plates
and plastic forks and knives and so forth, and just that kind of stuff, and if they sat
on something, they?d walk behind them, wiping it down with some kind of
sanitary or bleach, you know, just the whole thing, so in the beginning, you know,
before, I think I told my family, I called them and I wrote them and told?well, I
think it was about a year later before I went home, and actually was around them,
and you know, they didn?t treat me any different.
As the above excerpt suggests, participants also think about how, when, and
whether to disclose their HIV status to others. Such disclosure (or lack thereof) may take
place in a personal relationship, as mentioned by the participant discussed earlier who
preferred the idea of entering a relationship with another HIV-positive person, or in a
more public relationship, such as disclosing to students or strangers in order to educate
them about the disease (which also is discussed further in Education and Support). Most
participants talked about the relative ease or difficulty of disclosing their status. Those
who discussed their feelings from the past mentioned fear and avoidance (similar to the
excerpts directly above), while the few who discussed their current feelings conveyed
that they are open and find it easy to disclose, or at least preferable to hiding it:
You know, so I?ve been through enough to share shit with people. So when I
think about it, you know, people say, ?Well how easy is it for you to disclose your
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status?? and I say, ?It?s very easy for me!? Because when I tell people I have it,
then I break the stigma of what they used to say about it.
As far as society and stuff, I used to be afraid of being accepted and stuff like that.
But for me, it?s much more stressful to try and hide it or deny it?well, I won?t
say deny it, but suppress it or anything than it is to let people know what you
choose to let them know about you, what you choose to let them know about your
prognosis and everything. After I put it out there, that?s on them. Once I have
accepted it, I?m okay.
One participant summarized the issue of stigma as related to HIV/AIDS succinctly:
A lot of people have a lot of like really rough, tough diseases, that they don?t bear
prejudice and stigma about it, you know, but people with AIDS do, and that only
hurts, that doesn?t help them fight AIDS.
Support and Education
This portion of the model reflects the level, type, and sources of support and
education received, including structural and program support, personal support, and lack
thereof. Also reflected is individuals? involvement in educating others.
Clinic/Support. Participants? experiences at Whitman-Walker Clinic and the
concept of support were grouped together because so many participants described the
clinic as a primary source of support. More broadly, this category was grouped in the
theoretical model with the category Education, because participants discussed education
as a form of support.
Most participants acknowledged receiving support from one or more sources. A
few participants each cited family, friends, the workplace, and church or retreats as
sources of support. A few participants also mentioned staff at the Austin Center or the
clinic as a whole as sources of support. Additionally, some participants utilized support
groups, both outside the clinic (e.g., Alcoholics Anonymous) and within the clinic. A few
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participants also received structural support from the clinic, such as housing or financial
assistance.
Participants? length of time affiliated with the clinic ranged across a continuum
from just a few months to over 11 years, and was spread relatively evenly across that
time span. They had heard about the clinic from a host of sources, including case
managers or other professionals, friends, group homes, shelters, hospitals, nursing homes,
and advertisement; such sources were the origin of information about the clinic for a few
people each. One participant described finding out about the clinic from her sister:
Actually, it was my baby sister?When I first found out that I had AIDS, my baby
sister lives in Oklahoma, and she searched through the clinic with me to go to.
And she got in contact with Whitman-Walker. And two days later I got me a case
manager. And my case manager asked if I wanted to do something, because I was
very depressed. And she asked me did I want to learn more about my
disease?and I said yes. And I?ve been here [at the Austin Center] ever since.
In addition to the Austin Center, the day treatment program from which participants were
recruited, most of the participants also utilized Whitman-Walker?s medical, case
management, dental, and food bank services. In addition, some had utilized the pharmacy
and legal services, and a few had received individual psychotherapy.
A few participants were initially hesitant about the gay community at the clinic.
One person said that she was initially ?weirded out? and another mentioned that he was
uneducated. Another had this to say:
Uh, my expectations, first I was afraid, you know, I mean, that what I heard about
it was for gay and lesbians?or what I thought on what would be conceived if
somebody saw me coming out of here, the clinic, if they would have thought I
was gay or in a gay relationship. Then after awhile, after coming to the Austin
Center and being around gays, lesbians, straights, you know what I mean, it?s a
well-rounded group of all individuals, of all different walks of life. I began to
relax, and you know, began to be unafraid to ask questions, you know, listen
more, and that?s it.
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Participants? overall attitudes about the clinic were overwhelmingly positive. In
fact, only two participants had anything negative to say, and both of their critiques were
based more on the past than on the present. One participant, who had been at the clinic
for three years, had this to say:
When I first went over there it was chaotic, you know, some of the doctors didn?t
show up, some of the nurses didn?t show up for work - I forget which ones, so
that was putting a lot of strain on everybody else. I was over there to see a case
manager to get time with them but that?s when I noticed, I noticed clients that say,
?I?m around here to see Doctor so-and-so? and Doctor so-and-so is not here so
Doctor so-and-so?s going to see you but Doctor so-and-so got a full load
themselves so, but now when I go over there, you know, I?m not sitting out,
waiting that long and, you know, once I see my doctor, I?m seeing him for like
maybe 15 to 20 minutes, not unless he go see something on the test or if I?m in
there if maybe there?s something going on with me, but he?s about 15-20 minutes
at the most.
The only other participant who had anything negative to say about the clinic was a
heterosexual female participant who reported initially not liking the clinic because of the
predominance of people who were male and/or gay:
I didn?t like the clinic because it was mostly males here. There were a couple of
females here but they were much older than I. So I went through a lot when I first
got here; being very young and I was?I didn?t get along with a lot of people here
because I was too blunt. So I had a hard time fitting in.
She reported that while she initially had a difficult time fitting in, ?after fighting, I
worked things out.?
Participants? positive reviews of the clinic included that the clinic is helpful,
enjoyable, a model of teaching, a good source of learning, well-rounded, and safe.
Additionally, some participants reported that the group meetings are helpful, that the
employees and doctors are helpful, and that the people in general are friendly and
wonderful. One participant reported that he enjoys the activities, such as traveling,
cooking, and socializing. Several participants discussed the positive influence of other
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clients. For example: ?Coming here and finding out that a lot people had the same
problems?everybody had the same problems that I had, I was able to begin to deal with
it.? Additionally, one participant reported that the clinic has restored his faith in
?mankind? (sic). Said one participant, ?They should have more programs like this, I love
it!? Some participants were very specific about referring to the clinic as a source of
support:
Because one time we didn?t have all this clinics and stuff you hardly have
somewhere you can go and then people had problems with insurance, getting
insurance and help. There wasn?t that many clinics around. For people, it still?a
lot of people probably still don?t know today where to go. But I think Whitman-
Walker is great. As far as I am concerned, for me. You know what I?m saying?
Because I came in on a lot of good support people there. Oh my goodness, I?m
never going to forget them. One after another, like teamwork. I didn?t have any
problems with getting HIV support at all.
Most participants, many of whom received their medical care through the clinic,
also discussed the role of doctors. Two participants discussed a lack of support from
doctors in the past; one participant felt that in the past, doctors ignored the epidemic and
didn?t try to help people, and the other participant had a negative experience with his first
doctor:
Now the first doctor that I had?I didn?t get along with, you know, because he
had some backwards views about people living with HIV dating and having sex
and all that so yeah, you know, I was glad when he left. Every doctor after that
has been wonderful, so my trust level has really?is very, very high.
Similar to that participant, some others discussed having a great deal of trust in their
doctors. One participant noted that she does everything her doctor says and that ?you
have to trust in your doctor or you?ll die.? One participant discussed how he tests doctors
to find out whether they are supportive:
Sometimes I will ask a dumb question just for?just to see what they would do.
And when he said, ?Who?s supposed to be stupid, me or you???And that day I
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respected him. You know what I mean? You got to throw some old hook, lines,
and sinkers out there to see who, if these care providers, if they have your best
intentions at heart?You know, test, they ain?t feeling you, leave them alone until
you find the right one then, until you feel comfortable. And it?s true; you must
feel comfortable talking to whoever your health care provider is.
Some other participants also mentioned looking to doctors for decision-making, and
believing that doctors are trying to help. Most participants also mentioned that their
doctors are their main source of information, which is discussed in the following section.
Education. This category encompassed participants? sources of education, the
effects of education (e.g., helps with coping), and beliefs and behaviors regarding
education of others. As I mentioned above, most participants cited their doctor as their
primary source of education. For example, ?Up until I had [the clinic] I didn?t have a real
close working relationship with a doctor. But now that I do, I learn a lot of stuff through
her.? Additionally, two participants mentioned not only using their doctors as a source of
information, but verifying other sources of information with their doctors. One
participant explained, ?[I] ask my primary care attendant, or I don?t just ask one person. I
ask my primary care attendant and I ask the doctors here at the Austin Center. If they all
say the same thing then I believe it.?
In addition to doctors, participants reported turning to a number of other sources
for information about HIV/AIDS. Nine participants mentioned that they utilize the clinic
in general as a resource, eight said that they watch television or videos, six read
newspapers, five read magazines on the topic (e.g., POZ), five attended groups, four
searched the Internet, three read books or other literature, three turned to the CDC or the
National Institutes of Health (NIH), two attended seminars, and one listened to the radio.
The following are excerpts about sources of information in participants? own words:
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Well, I?m like this here, if, you know, I was, if I read it or hear it from somebody
somewhere I would go to like on the Internet, to the CDC, or places like that, you
know, and see if what was said was true or not. You know, email somebody at the
CDC and ask them, ?Well, I heard this and this and what?s this and this? Email
me back or mail me the information.? So that?s what I do, I don?t believe in, you
know, I do investigation, that?s what I wanted to say, before I believe or
disbelieve something.
We have seminars where I?m staying; I?m in a group home right now. We do
seminars. And I heard on the radio. And then Whitman-Walker. They have
pamphlets over there, that you can pick up and take home with you. Actually,
most everywhere got pamphlets; clinics and stuff have pamphlets that you can
take home. And groups, support groups, and AA groups. All those places have
stuff, but it?s up to you to pick them up and read them. They don?t cost you
nothing.
An additional, specific source of information that about half of the participants mentioned
was other people (i.e., laypeople). Six participants reported not believing information that
they received from other people, while only two participants mentioned believing what
others told them about HIV/AIDS. One person noted, ?I?m not sure who it is I don?t
believe?I think I could basically disbelieve the average person on the street right off the
bat.? Two participants mentioned the term ?ear hustling,? which they explained meant
listening to or overhearing others? conversations?for example, ?if I?m on the bus and
some people talking.? Both of those participants mentioned disbelieving what they heard
from others, and sometimes noticing erroneous information being passed on. One
participant went so far as to correct it:
Anytime another person that?s HIV-positive that?s not fully informed gives
another person wrong information I kind of say, well you know, if I see them get
off [the bus], that may not be my stop, but I will get off with them. And kind of
get where, ?The information you probably gave this individual is wrong, it?s not
right, without your doctor?s permission it?s not right.? You know, stuff like that, I
try to give?hear wrong advice, and try to give right?
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Clearly at least a few participants were wary of information they heard from others and
even worked informally to prevent the spread of misinformation. (Formal educating of
others also is discussed below.)
Perhaps more significant to the participants than where they received their
education was how it affected them. Some participants explicitly mentioned that
education impacted their ability to cope, and the way they viewed their disease:
The more information I have about it, the better my self-esteem is. I have very
high self esteem. Everyone that knows me knows I have very high self esteem
because at one time I didn?t. One time I wanted to kill myself because I didn?t
know anything about the disease?so now the doctors are, hell, they?re getting
paid to do this. I mean big money. So if I can get it free, I?m going. I have an
electric chair that?s out front, that?s parked right around the corner, somebody tell
me about a group, I?m out there.
The more you educate yourself, you know, you won?t fall at the wayside. If you
just go to the doctor, and educate yourself, just take the medication, you don?t
know what the numbers mean, you don?t know how much of the virus is in your
system, then therefore, you?re not going to?you?re just?how should I say it?
You?re just going along with the program. But when you educate yourself?It
gives you a sense of?it gives you power. It gives you a sense of power, power
over the virus. Yeah, it gives you power.
Half of the participants also discussed their involvement in educating others, and
the impact that it had on them. One participant stated, ?You know, I try to go out and do
my little part, as far as trying to share my experience and things with other people, and
maybe somebody will, you know, listen.? A few participants explicitly stated that
educating others made them feel good about themselves. For example:
Just being able to?helping others. Help educate others who don?t know much
about the virus. If they are living with the virus, helping them, if I can, to come
out of their denial or their fear and everything. Mainly to help them educate
themselves about the virus, so they would know more about the virus. I mean, this
thing is going to be with you for the rest of your life, therefore, you know?I get a
good feeling?that?s not the right word?but I feel good when I can help others
help themselves. You know?
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It makes sense that participants were involved in educating others in light of how
necessary they thought it was. In particular, six participants discussed the need for
education among children or teens. Their beliefs about the need for education intersected
with their beliefs about who is affected by HIV, which is located in the Socio-cultural
Meaning part of the theoretical model. That portion of the model is outlined next.
Socio-cultural Meaning
In essence, socio-cultural meaning refers to how participants made sense of HIV
within the context of broader society. Our research team found that participants had
developed beliefs about the origins or cause of HIV, as well as beliefs about the roles that
the government, religious institutions, medical institutions/pharmaceutical companies,
and society at large play with respect to HIV/AIDS. Participants also held perceptions
about who is most affected by HIV, and how that related to other concepts that are part of
the theoretical model, such as education. Participants made it very evident that
HIV/AIDS was not an issue that existed in isolation. Rather, participants observed and
formed opinions about how HIV/AIDS came about, and how it is dealt with (or not) at a
societal level.
Cause/Contraction. When asked about why or how people get or have HIV or
AIDS, all of the participants first spoke about medical causes, and all of them displayed
at least a somewhat accurate understanding of the medical causes of HIV. Most of the
participants were quite accurate and thorough in discussing how HIV is contracted. The
following excerpt is a typical example.
You usually get it through blood contact, contact with blood, but several ways I
guess people can get it through: breast milk; injections?just about any type of
needle injection, if it?s not clean; unsafe sex, from a partner; and the use of
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unsterile needles. That?s pretty much the ways. Contact from blood, that?s
basically the main way of getting it.
At the same time, most of the participants also had heard about other theories regarding
the cause and contraction of HIV. These theories included that HIV is a gay disease, that
casual contact such as kissing or sharing a toilet seat could cause HIV, that a monkey or a
plant played a role in the origin of HIV, that HIV originated from an experiment gone
bad, that HIV is ?man?-made (sic), and that HIV is a government conspiracy. Most of the
participants acknowledged these theories as rumors:
You know, I?ve heard all kinds of, like, rumors, you know, at first, about where it
came from, like somebody saying it was a monkey, it came from a monkey,
somebody saying it was a plant, some kind of plant, some kind of experiments
that went bad, so you know, I?ve heard a lot of different things.
Some participants verbalized disagreement with the theories:
I don?t believe there is a government conspiracy. It is not a government
conspiracy?Some Black Americans be saying that, and I say, look, it?s a myth, it
is not a government conspiracy, it?s a problem of the world?The government
didn?t do that, that is something nature designed.
Six participants mentioned the theories about casual contact, but none believed those
theories themselves. Similarly, six participants mentioned the rumor that HIV is a gay
disease; none of the participants believed that rumor themselves either, though two of
those participants acknowledged having believed it in the past. Each of the other theories
was mentioned by a few participants each. Overall, though most participants had heard at
least one of the theories, only two participants actually believed any of them. Both of
these participants believed that HIV is man-made. One of those participants added that
HIV is a government conspiracy. The other participant added that the cause is related to
an experiment gone bad, and that the cause relates somehow to a monkey.
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Don?t nobody know where this disease?just all they know it was man-
made?That?s all I know about it. I just know it?s man made.
People think it?s a gay disease, but it?s not. I don?t think it ever has been?I think
it was man-made. That?s a I-statement, too?I think it was a man-made disease,
but they didn?t mean for it to hit home?
Participants? overall perceptions of the government and other institutions were made
clear throughout their interviews and extended beyond theories heard or believed about
the origins of HIV. For those perceptions, I turn to the next category.
Perceptions of society/institutions. This category encompassed participants?
observations about how the government and society at large handles HIV/AIDS. It also
included participants? perceptions about who is affected by HIV/AIDS, and why. Overall,
participants readily identified that African Americans are affected by HIV/AIDS, and
held negative opinions about how society deals with HIV/AIDS in general.
Most participants felt negatively about the federal government?s handling of the
disease. Some participants focused on the financial aspect of the issue, stating beliefs that
the government only seeks profit-enhancing actions and conveying disappointment with
the way the government spends money. Participants commented that government does
not fund HIV/AIDS, that funding has been taken away from HIV/AIDS, that HIV
programs have been closed, that money is being spent helping other countries rather than
our own, and that the government is ?stretching the disease out? in order to earn more
money:
If it was up to me, all the government officials that pulled the money away and all
that stuff, I?d impeach them, but it?s not up to me. They wouldn?t be in office.
Sometimes I be thinking I could be a better president than the one we got
now?Um, I get upset. You know, they taking away from, they taking the money
away from people who really need it, you know? Although you have some people
who are HIV-positive that abuse the system, but you know, policies could be set
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to take care of that. But, um, just taking the money away or ?We going to take this
away and put it towards something else,? that makes me upset, you know.
The other primary concern voiced about the government by some participants was that
the government is not involved enough in working toward HIV prevention, treatment, or
cure:
It?s my opinion that if they really wanted to they could probably?no, I?m not
going to say probably, I have no doubt that they could cure this thing if that?s
what they really wanted to do. If that?s what they really wanted to do, they cured
polio damn it, they found Saddam Hussein in a hole in the ground in his backyard.
You can?t tell me they can?t fix this. This is not a priority; this is not on the top of
their list?If the bigger buck was in curing it it?d be gone?The system is geared
towards generating profits, you know what I?m saying?
A minority of participants believed that the government is helpful and is improving. For
example, one participant stated, ?I was amazed, I said, ?This is so nice, how the
government is playing a part.? And every day there is something different, new coming
for us. Even me.?
A similar pattern emerged regarding participants? views regarding religious
institutions. Six participants asserted that religious institutions ignore HIV/AIDS, and a
few specified that the issue is ignored because it goes against traditional religious values.
At least one participant noted that this was true primarily with regard to prevention
efforts, because birth control and premarital sex are not condoned in certain religions.
Again, a minority of participants held positive views?two participants noted that
religious institutions can be accepting, ?especially with AIDS ministries.? A few
participants were careful to differentiate their opinions of religious institutions at large
from their own personal experience; a few participants reported having personally been
accepted by their own churches.
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Some participants also discussed their views of medical institutions, and the
reviews in this area were more mixed. A few participants expressed negative opinions
that medical institutions are not doing all that they are able to, that HIV/AIDS is not a
priority, that pharmaceutical companies are overcharging for medication, and that
preventing or curing the disease could hinder profits of pharmaceutical companies. The
following excerpts are examples:
Some of these pharmaceutical companies?too many people are going to lose
their jobs if they come up with [a cure]?
The medication has come a long ways, the pharmaceutical companies have been
getting paid a whole lot of money. And I was watching something on TV and they
said the pharmaceutical companies is making a killing because it cost them like
maybe two to three cents or five cents at the most to make one pill but here they
charging people like hundreds, you know, because one of them, I did a calculation
on my medicines for one year and it came over twelve thousand dollars and it take
them like maybe two to five cents to make the pill but they charging people all
that money.
They don?t look for results. They look for profits.
On the other hand, a few participants reported that pharmaceutical companies are making
improvements:
I think they?re doing good compared to what it used to be. They got a whole lot
better medicine than what they used to be. They?ve really been helping out a
whole lot. And there?s more people living today than they did years ago because
they got better medicine, and people are taking their medicine now so they don?t
really get sick.
Thus, of the participants who volunteered their opinions about pharmaceutical companies
and medical institutions more generally, the reviews were mixed.
About half of the participants offered comments about society in general, and
again, their opinions varied, in this case even more widely than their views regarding
medical institutions. A few participants were indifferent (e.g., ?I don?t care about
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society?) and a few felt that people were generally ignorant toward the HIV/AIDS
community. For example, ?There?s still a lot of ignorance and I blame that on society.
They?re not up front with it like it should be. We?re still on the back burner.? A few
people fell more toward the positive end of the spectrum, stating that society was
improving (e.g., ?It?s better than it used to be?).
In addition to their perceptions about society in general, participants discussed
their views regarding who is affected by HIV/AIDS. Most of the participants mentioned
that HIV affects African Americans or Blacks; some mentioned that it affects children or
teens, a few mentioned that HIV ?does not discriminate? and anyone can get it, and a few
mentioned that it affects people from third world countries, particularly Africa. In
addition, one participant each mentioned that HIV affects the gay population, Hispanics,
Haitians, and people who are poor. The following are excerpts reflecting those beliefs:
I noticed, I?ve heard, that it?s affecting African American women. Their diagnosis
is on the rise, you know, and I think that comes from, you know, they have
partners that been in jail and for whatever reason, whatever they do in jail, they
contact them though when they come back out. They don?t tell, they don?t say
nothing, and nothing like that, then go have intercourse with their wife or
girlfriend and they probably won?t even think to go get checked until they get sick
or something, and then they find out. Or, the boyfriend or the husband is on their
dying bed and then they tell them, you know, I know stories from, I know people
that have the stories both ways. The African American female diagnosis is on the
rise, and also teenagers, too.
Without a doubt, it?s my understanding that the highest rate of infection right now
in this town is in African American teenage girls, under 17 years old. Now I
understand that to be true, and how do I feel about that? I think that sucks, really.
And because that?s just a lack of information. And somebody should be able to
get to these kids?I can?t imagine the effort is not being made, but obviously it?s
not?Can?t you make the effort to make sure they get this information?...That?s
why I understand that it?s affecting poor people, basically. And that?s more than
financial, that lack of information. I mean we get information at the bottom of the
food chain, too.
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Overall, it is clear that participants had critical points to make about the
government, religious and medical institutions, and society in general; and most
identified that their own racial/ethnic group was particularly affected by HIV/AIDS. The
next sections review how the participants emotionally react to and cope with their own
HIV diagnosis, and how their societal and personal views overlap and affect one another.
Personal Meaning
Emotional reaction to diagnosis. It was very clear from the results of this category
that participants had gone through or were in the midst of a change process. Overall, the
category reflected tremendous emotional growth that most participants had experienced
from the time of their diagnosis until the present. Participants spoke explicitly about their
changes, and only two participants reported that they had not experienced any change in
their perception of or reaction to their diagnosis.
All participants who discussed their initial reaction to their diagnosis described it
as a negative experience, primarily characterized by thoughts about death, and, for at
least a few participants, by coping styles that they later identified as negative. For
example:
I resorted to drugs and alcohol and for awhile, for a long period of time, I didn?t
talk about the virus. I felt that if I didn?t talk about it, it wasn?t there. But as long
as I talked about it, it was there. If I didn?t talk about it, it wasn?t there. And it
made me?It took more for me to suppress my thoughts and feelings about the
virus than it did to just accept it. I was in a long denial stage.
At some point, most participants changed their views about their diagnosis and their ways
of coping, and some were able to identify what contributed to their changes. The
intersections of various parts of the theoretical model begin to appear with some clarity
through participants? discussion of these change processes:
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Not really [any changes in beliefs], only better?Better information. I?m better.
I?m more well read, more laid back, I?m more cautious now, I?m more
comfortable with me, you know?...it didn?t come until the Austin Center, like I
said being around peers like me, you know, listening to their stories and being
around some peers that have passed on, and you know, it just make me stronger,
and like I said, going out in the public, not being afraid about what they think or
what, not being afraid about what another human being is thinking?It took
time?First it started in the Austin Center, learning from my peers, talking with
my peers, then it grew from there. It?s grown now.
I really positioned?put myself in a position that I was going to have a real short
life, automatically, that?s what I thought, ?Everybody with AIDS dies, real fast
and whatnot.? Through going to the different groups and whatnot, I was able to
talk about these things, whereas, you know, like before that, as far as even here,
when I first came here, I wouldn?t sit outside, because I didn?t want anybody to
know, if they see Whitman-Walker, they know I have the virus, you know, or that
it?s a lot of gay people, and all those types of things, you know, but then after
being here, it?s a situation where, you know, gay people, everybody, people that
weren?t gay, uh, you know, I mean, just, that everybody was getting it, and people
got it in so may different types of ways, not necessarily through sex, that it didn?t
discriminate, that the disease didn?t discriminate. So I begin to say, wow, you
know, it?s not just, you know, a gay disease, it?s not just a disease that junkies get,
you know?And, uh, being able to just talk about those things, you know, made
me able to cope. Then eventually I got to a point where I said?I just wanted to
help myself. It didn?t matter, like, where it came from. And then I, you know, I
was always thinking about what people would think of me and what people would
say, but then, you know, eventually I reached the point where if I wasn?t sharing a
needle with nobody, and I wasn?t using anymore, and if I wasn?t having
unprotected sex, then I didn?t care what they think about me. All I had to do was
try to, you know, live.
As a result of their change processes, most participants reported that their current ways of
coping were helpful and positive:
I?m very religious, I trust in my higher power, it brings a lot of comfort?I?m
extremely spirtitual.
I mean, I know I have it but I don?t let it get me down to a point where I can?t do
nothing, I can?t go nowhere and get myself involved with other people. I go out
and party, I go visit peoples, I do all these things, I take my granddaughter out, it
keeps me going. As long as I?m moving, and have a positive attitude about things,
it don?t bother me as much. It used to, but not now, not now. And I love partying.
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One particular change that participants discussed was having gained a sense of control
vis-?-vis the disease:
I was just sick and tired. Sick of being sick and tired, sick and tired of the drugs
and alcohol and everything. Sick and tired of fighting to suppress it and
everything. Just tired. So by me going to recovery, I learned to accept the fact?
that helped me to grow to accepting the fact that I had the virus. And the only
thing I could do now?It didn?t happen overnight, it was a process in me.
Accepting the fact that I had the virus, and then I had needed to submerge myself
and educate myself. The more I know about the virus, the better I can control
it?It gives you power?The power in knowing that I can control it. The power in
knowing that I can control it.
I have the disease and I have to take control of what I have.
A few participants also acknowledged the presence of stress in their lives as a result of
their diagnosis, and why positive coping is necessary:
The HIV is scary because you don?t know when this medication?Everybody
says that they are working on a cure, but shucks. Who knows how long it?s going
to take? You may be gone. They?re working on it, but nobody never knows when
it will come?It?s something to think about, but I try not to think about it. I don?t
want to go into depression and stress, and that?s worse than HIV, because stress
can kill you.
I mean, dealing with HIV is a mental issue, whether people want to believe that or
not. You have to cope with it every single day, it?s no getting rid of. There?s no
not taking your medications every single day. There?s no not worrying about
getting other shit co-infected with the shit you already have. Yeah, I have mental
issues. Yeah, damn skippy I do.
One specific issue that a few participants struggled with, either in the past or during the
time of the interviews, was self-blame. For example, one participant stated, ?My reality, I
did this to myself, I messed myself up. The style of lifestyle I was into, I did it to myself.
I guess I only blame to myself.? The participants who mentioned such thoughts had to
come to terms with such realizations. One participant reported that he used to focus on
believing theories about government conspiracies and such as a way of avoiding his own
role contracting the disease, but that somewhere along the way, he decided to stop caring
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about the cause of the disease and focus on his own role and what he could do to take
control. Such stories really capture how societal meaning and personal meaning might
interact, and begin to present a picture of what type of global meaning participants might
make for themselves.
Global Meaning
Global meaning was not a category into which data were grouped, but rather
emerged from the research team?s discussions and analysis of the central theme of
participants? stories. In fact, while we did not construct a ?core story? as prescribed by
Strauss and Corbin (1990), the grounded theory concept of searching for a core story
guided our search for a potential, overarching meaning in the participants? stories that
ultimately resulted in this component of the theoretical model. We concluded that
participants? interviews centered on their current understanding of HIV as both a personal
and a social issue?an understanding that was influenced by their personal experiences
(including personal demographics as well as their experiences with medication, illness,
and stigma) and by their support and education. A common meaning that was found
among some of the participants was that the perception of the government?s or society?s
inadequacy related to a sense that personal control and action was necessary. At least
some participants concluded that since not enough was being done about HIV at an
institutional level, coping and change had to take place at an individual or personal level.
This included focusing on one?s own health and well-being and taking it upon oneself to
educate others, for example. Most importantly, a theme that was found among such
participants was not an attitude of being ?put-upon? (i.e., ?The government is not doing
anything, so I have to?), but rather, the attitude appeared to be one of self-empowerment
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(e.g., ?The government is not doing anything?but I can.) The following are some
examples of how social meaning and personal meaning intersected with one another and
of the overall meaning that participants created for themselves about their relationship
with HIV/AIDS.
I try to keep it on me, and try to concentrate on the things that I can effect, that I
can do, because you know, the ball is really not in my court so I can?t get twisted
about what they?re doing, you know?To the degree that they haven?t put the
sufficient amount of resources to really get at it, then you know, I hold them
accountable for that. But, once again, how does that play to me? I?m just one guy,
they?re willing to see a Black man and that attitude, and I don?t expect a whole lot
from them, is what I?m telling you, you know what I?m saying? I don?t expect a
whole lot from them, so whatever I get is great, you know what I?m saying? As
long as I get to wake up tomorrow I get another chance. So I know that as long as
I don?t set myself up with too high expectations, then you know, I don?t come
down with premeditated resentments, you know what I?m saying? ?Cause I don?t
expect a whole lot out of them, and as long as I?m alive I guess that?s really all
I?ve got coming, based on everything else that I see, based on my experience as
being who I am and where I am.
I?ll just be happy knowing that there are just little bits of things that I can
influence here and there?attitudes, basically attitudes, about how people could
deal with the AIDS crisis. You know, whether it?s the social AIDS crisis or
somebody?s individual problems with AIDS. You know, I can help, help my peers
as much as I can, in a personal way.
Each day, you know, it?s a little better each day. And I found out that living with
HIV is just another challenge really that you have to fight, you keep going and
going. That?s what I do, I never give up.
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Chapter 5
Discussion
The purposes of the current study were to better understand the nature of African
Americans? beliefs about HIV/AIDS, particularly as they related to the government and
other social institutions, and to gain an understanding of how such beliefs related to the
experience of living with HIV/AIDS. Grounded theory analysis resulted in the
construction of an emergent theoretical model. The theoretical model and its components
enabled me to answer the research questions that were originally posed in the current
study.
First, the current study explored what HIV-positive African Americans believe
about HIV/AIDS. All of the participants reported that HIV is caused by activities that
involve the transmission of blood between individuals (e.g., unsafe sex, needle-sharing).
Two participants also reported that HIV is man-made, with one connecting it to an
experiment gone bad, and the other connecting it to a monkey (she was unsure about the
monkey and how it related to HIV being man-made). Given how prevalent such beliefs
were shown to be in previous literature, it is interesting that only a few participants who
were interviewed for the current study endorsed such beliefs. Our research team
discussed the possibility that more HIV-positive African Americans may hold such
beliefs and those individuals may have avoided seeking treatment for their HIV, possibly
in relation to their beliefs. It is important to remember that I recruited participants from a
clinical population, and as such, they may hold different beliefs from individuals who are
not in treatment.
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The current study also investigated what HIV-positive African Americans do not
believe. Most participants had heard and did not believe rumors about causes of HIV
(either in terms of its origin or its transmission) that were not scientifically supported. For
the most part, participants who had heard that HIV was a gay disease, that casual contact
such as kissing or sharing a toilet seat could cause HIV, that a monkey or a plant played a
role in the origin of HIV, that HIV originated from an experiment gone bad, that HIV is
man-made, or that HIV is government conspiracy, did not believe such assertions. With
the exception of one participant who very clearly stated that he used to have such beliefs
and no longer does, it was difficult to tell from participants? interview statements whether
they had always disbelieved such rumors or whether they had undergone a change. (I did
ask about changes in beliefs as part of the interview protocol, but many participants
spoke about changes in beliefs more generally, e.g., changes from believing that HIV
meant a death sentence to believing that HIV could be lived with.) The one participant
who identified a change in beliefs explained his former belief in the rumors as attempts to
externalize blame and avoid taking responsibility for his actions; once he dismissed the
rumors, he focused on taking personal control.
One clear finding was that while participants did not necessarily believe that the
government was actually responsible for causing HIV, they did believe that the
government was not responding adequately to HIV/AIDS. Most participants felt that the
government ignored the issue, largely by not funding treatment and education. It may be
that the political climate of the time influenced participants? beliefs. A few participants
discussed government neglect of HIV/AIDS being related to the Bush administration
and/or to the war (e.g., government money is currently being spent primarily on the war).
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It is a fact that during Bush?s presidency, HIV/AIDS funding such as the Ryan White
Care Act has not been increased enough to keep pace with inflation. Locally, about one
year before I interviewed the participants, one of Whitman-Walker?s suburban clinics
closed because of financial limitations. Although none of the participants mentioned that
event explicitly, at least a few of them were aware of that event, and may have been
aware of others like it. On a national level, a recent report (Open Society Institute, 2006)
stated that the United States is failing its own citizens in the response to the epidemic at
home, that the federal government has become even less responsive over time, and that
?the country has failed to come to grips with an interwoven set of social
factors?including economic inequality, racial and gender disparities, racial
discrimination, and homophobia?that create vulnerabilities to HIV infection and
lead to poorer outcomes from health care services. (p. 24)
The participants live these issues every day and readily recognize them. In other words,
participants? evaluations of the government are astute and appear to be factually based on
current policy and funding news.
Another research question investigated what HIV-positive African Americans
believe about the role of medications and health care institutions. Most participants
reported strict adherence to their medications and a general belief that adherence is not
only beneficial, but necessary. This was somewhat surprising, given the complexity of
HIV medication regimens and the difficulty of adhering strictly to them. Of course, it is
possible that participants? self-reports were at least somewhat affected by social
desirability; participants are likely aware that the socially desirable answer to
practitioners or other staff (of which I could be considered one) regarding medications is
that they are adherent. However, participants? discussion of what they learned about
medication, particularly from Whitman-Walker Clinic, suggests that they have
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internalized the belief that medication is important, even if their adherence is not as high
as their self reports indicate. For example, at least a few participants noted that they
observed in themselves or others that health status improves when medications are taken
or worsens when they are ignored. In addition, participants reported a strong degree of
trust in their doctors, which likely is related to their positive attitudes and behaviors
regarding medications.
Regarding medical institutions, the response from participants was more mixed.
Several participants expressed beliefs that HIV/AIDS is not a priority, that
pharmaceutical companies are overcharging for medication, and that preventing or curing
the disease could hinder profits of pharmaceutical companies. On the other hand, a few
participants reported that improvements are taking place, and three participants reported
using the CDC or NIH as sources of information about HIV/AIDS.
The final research question about the nature of participants? beliefs centered on
what sources HIV-positive African Americans believe and do not believe regarding
information about HIV/AIDS. Most participants relied on their doctors and/or the clinic
in general. Some utilized television, videos, newspapers, magazines, and/or groups (e.g.,
support groups or focus groups). A few participants also mentioned using the Internet,
books or other literature, the CDC or NIH, seminars, or the radio. The most commonly
cited source that was not trusted was other people (i.e., laypeople, passersby); six
participants discussed not automatically trusting what others say. In general, participants?
statements seemed to reflect that they realize false or unreliable information exists, they
choose their sources carefully, and they rely on their doctors and the clinic in general for
new information and for verifying previously gathered information.
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A separate research question, also related to the nature of participants? beliefs,
asked how HIV-positive African Americans? beliefs about HIV/AIDS changed over time.
The question really asks about two issues: What are the changes, and how did they
happen? The changes that were most clear through our analyses were that most
participants transitioned from believing that they were going to die from HIV and had
very little control over any aspect of HIV, to believing that HIV was something to live
with and something that could be survived, and to finding a sense of personal control.
The way in which such changes took place is reflected in the theoretical model. In
particular, participants discussed that education played a large part in changing their
beliefs. Even more specifically, one aspect of education and support that affected at least
a few people was spending time around others who had HIV and witnessing others?
experiences. In addition, participants appeared to have undergone a process of developing
or retaining beliefs about aspects of their situations that could not be controlled (e.g.,
government funding), but over time, integrated those perceived realities with other
knowledge and beliefs that led them to find some sense of control. In fact, the perceived
uncontrollability of some aspects of HIV (e.g., its chronic nature, the government?s
inaction) actually seemed to fuel participants? resolve to be active themselves. Such
changes reflect one way in which HIV-positive African Americans? beliefs interacted
with their experience of living with HIV.
The primary focus of the study was the intersection between HIV-positive African
Americans? beliefs about HIV and their experiences of living with it. The beliefs were
defined in the literature review as beliefs about large-scale discrimination, by the
government and health care system, against a group (in this case, African Americans;
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Bird & Bogart, 2005). Most participants spoke about government discrimination against
HIV (e.g., that the government systematically ignored or refused to fund the issue) and
identified African Americans or Blacks as being particularly affected by HIV. In
combining those two findings, it appears likely that the participants did view the
government as discriminatory against African Americans. However, with the exception
of one or two participants, they did not say explicitly that they understood the
government?s stance regarding HIV to be related to the fact that African Americans are
disproportionately affected. Thus, one finding is that among this group of African
Americans who are living with HIV, their stated beliefs are that the government ignores
people with HIV. It is unclear whether they believe that the government?s inaction is
related to the fact that African Americans are disproportionately affected by HIV.
What is clear is that the participants believed that the government does not pay
enough attention to HIV, financially or otherwise, and that such beliefs do interact with
their experience of living with HIV. The emergent theory suggests that participants
integrated their beliefs about the government and the meaning of HIV at a socio-cultural
level with their beliefs about themselves and the meaning of HIV at a personal level to
form an overall meaning of HIV. Participants? formation of meaning interacted with their
support, education, medication adherence, physical and mental health status, experiences
of stigma, and personal demographics in a bi-directional manner. In the sample,
participants? beliefs about the government not doing enough related to their overall
conviction that personal action could and should be taken.
Our research team discussed our own beliefs that participants? race as well as
socio-economic status likely contributed to their overall formation of meaning of what it
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meant to live with HIV. Throughout our analyses, we absorbed messages, perhaps at
times explicit but certainly at times implied, that the participants were used to not
receiving or expecting much assistance from the government or other social institutions. I
suspect that for these individuals, the failure of the government to adequately deal with
HIV was just one more way among many that they had been failed by the system. I
suspect that their resignation and reliance upon themselves extends to other issues besides
HIV, and that such attitudes (i.e., resignation, need for personal action) might exist in
African American and/or low-income individuals who are HIV negative, as well.
Comparison of the Results to Existing Literature
As I have made clear throughout, grounded theory is about constant comparison.
One final comparison I would like to make is between the study?s emergent theory and
existing literature, particularly that which I discussed in the literature review. First, as I
discussed earlier, the prevalence of beliefs about large-scale discrimination against
African Americans, with regard to HIV/AIDS, was quite minimal in the current study?
far less than previous empirical literature suggested it might be. Recall that in one study,
70% of participants agreed that the government was not telling the whole truth about
AIDS (Parsons et al., 1999), and in another, 27% of participants believed that the
government deliberately created AIDS to kill Black people (Klonoff & Landrine, 1999).
Thus, a major finding of the study was that only a few participants held these type of
beliefs. Granted, the number of participants was small, but as I discussed earlier, the
participants were demographically diverse and representative of the Austin Center?s
client population, and our analysis suggested that we reached a point of saturation within
the data?that is, no novel concepts were uncovered once we were about halfway through
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our initial coding. Thus, it is likely that the findings were a relatively accurate
representation of this population.
There are several potential reasons for the low prevalence of large-scale
discriminatory beliefs in the sample. It could be that HIV-positive individuals who seek
treatment are those without such beliefs. Indeed, seeking and entering HIV treatment
likely requires at least a minimal degree of trust in health care institutions. There also was
at least some evidence that participants may have experienced a change in beliefs during
the course of their education and their meaning-making processes. We know that one
participant explicitly discussed having held those beliefs and then shed them through his
evolving coping processes. Unfortunately, my research team members and I had
difficulty finding any way in which the participants who held such beliefs were different
from the rest of the sample. At any rate, because beliefs about large-scale discrimination
against African Americans were discussed so infrequently in the current study, we were
limited from exploring the implications of such beliefs. In that sense, we were actually
unable to answer the primary research question as I originally intended it. Rather, the
research team focused on the beliefs that participants did hold, and how those beliefs
related to the other constructs in our emergent theory.
Medication adherence. I discussed in the literature review that according to the
health belief model (Becker et al., 1977), a patient?s decision to be adherent or
nonadherent to medication is derived from an assessment of the relative costs and
benefits of treatment. Originally, I posited that such a relationship would be found in the
current study in that participants might distrust medications, believing them to be
experimental, poisonous, or otherwise harmful, and that such beliefs might relate to
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nonadherence. I did find one participant who was concerned about experimentation, but
she actually perceived that discontinuing her medications?not taking medication?
would be harmful.
In general, participants in the current study held very positive attitudes about
medications, believing them to be useful and necessary for survival. Some participants
developed such views from spending time around other HIV-positive individuals and
observing how they were affected by adhering or not adhering to their medication
regimens. Nonetheless, the relationship posited by the health belief model and other
adherence literature still was supported by the current study. At least by self-report,
participants were very adherent to their medications, which related to their beliefs that the
benefits outweighed the costs. At least a few participants actually discussed engaging in a
cost-benefit analysis, acknowledging that while side effects could be frustrating or
painful, the life-sustaining benefits of medications made taking them worth it. Thus, the
health belief model was supported in the current study.
Illness representations and coping. Like the emergent theory described in the
current study, the common sense model of illness representations (CSM; Leventhal,
Meyer, & Nerenz, 1980) describes components that contribute to how individuals make
sense of a diagnosis. Earlier, I mentioned the cause dimension, which consists of beliefs
about the cause of the illness. The original model also includes dimensions of identity
(the label given to the illness and knowledge of its symptoms), timeline (the perceived
duration of the illness), consequences (the perceived short and long-term effects of the
illness). Additional dimensions have been added by subsequent researchers, such as the
control/cure dimension (beliefs about the degree of controllability and/or curability of the
94
illness) and the affective or emotional dimension (emotional reactions resulting directly
from the illness; Oxlad & Wade, 2006).
The dimensions of the CSM bear a great deal of similarity to the Personal
Meaning component of the model described in the current study. Personal Meaning
encompassed participants? emotional reactions to their HIV diagnosis, much like the
CSM?s affective dimension. In the current study, participants? emotional reactions
involved interpretations about the consequences of the illness (e.g., initial reaction that
the illness would lead to death) and the duration of the illness (e.g., a realization that it
wasn?t going to go away). Participants in the current study also discussed their
perceptions about what they could and could not control. As such, the Personal Meaning
component of the current study?s emergent theory encompasses or relates to four of the
six dimensions described in previous research about the CSM. Thus, it appears that the
CSM largely captures the personal meaning that individuals create in relation to their
illnesses.
Missing from the CSM is the second component of meaning-making in the
current study?s theory, Socio-cultural Meaning. The current study demonstrated that
socio-cultural meaning was just as important to individuals in creating overall meaning of
HIV as the personal component. As I discussed earlier, socio-cultural meaning consists of
perceptions of society and social institutions, perceptions about who is affected by the
disease, and beliefs about the cause of the disease, including perceptions about rumors
heard. The CSM model does include a cause dimension, but I view the discussions and
perceptions of cause-related issues within the current study as different from those
proposed by the CSM in that they relate in the current study to the broader social context
95
(e.g., stigma [rumors that HIV is a gay disease or is spread by casual contact] or the
government [rumors that HIV is the result of a government conspiracy]). Thus, while
beliefs about the causes of one?s disease are included in the CSM, the idea that the socio-
cultural or socio-political context of one?s disease affects the sense one makes of it is
missing.
The socio-cultural component of disease meaning-making could be missing from
such a model for various reasons. It is possible that socio-cultural meaning is important to
individuals with all types of diseases and it simply has not been studied or included in
that particular model. It also is possible that such a component of meaning-making is
unique to HIV, a disease that has been riddled with socio-political conflict from the point
of its discovery. Even more narrowly, it is possible that socio-cultural meaning only
comes into play among African Americans, who are not only disproportionately affected
by HIV but have been discriminated against in a whole host of ways. Certainly, the socio-
political views of African Americans?HIV-positive or not?are uniquely shaped by the
history of racism that they have experienced in the United States. Perhaps one of the most
important findings of the study is that socio-cultural perceptions about HIV play a
significant role in how HIV-positive African Americans make meaning of and cope with
their diagnosis. Whether such perceptions also play a role in how individuals of other
racial/ethnic groups or individuals diagnosed with other illnesses make sense of HIV
remains in question, and is mentioned below in my discussion of future directions for
research, practice, and advocacy. At this point, however, I return to my comparison of my
results to existing literature.
96
Grounded theory. To conclude my discussion of how my results relate to existing
literature, I would like to relate the analyses and results of the current study to grounded
theory literature in order to demonstrate that the current study met the evaluative criteria
of a grounded theory study and the goals of constructivist grounded theory specifically.
Corbin and Strauss (1990) outlined criteria for evaluating a grounded theory. They
suggested that a grounded theory study be evaluated in terms of its research process and
empirical grounding. They noted that while some criteria may seem unconventional to
quantitative and even qualitative researchers, they are essential for evaluating grounded
theory studies.
First, Corbin and Strauss (1990) recommended that studies be evaluated based on
the researcher?s use of theoretical sampling rather than statistical sampling. As I
discussed in Chapter 3, I accomplished theoretical sampling in the current study by
returning to and sampling existing data. For example, my research team constructed a
provisional code list of concepts discussed by participants, and we continued to sample
new interview transcripts until the code list was saturated. We created our properties and
dimensions in the same manner. As we worked to construct our theoretical model, we
returned to participants? transcripts multiple times to ensure a fit between the theory and
the actual data.
Second, Corbin and Strauss (1990) outlined criteria for how the concepts and
categories should be evaluated. They recommended evaluation of whether concepts were
generated and were systematically related to one another, and whether the categories are
well developed. As discussed above, we developed a comprehensive list of concepts (see
Appendix H) through detailed analysis and theoretical sampling. Categories were
97
developed by identifying and naming higher-order, more abstract concepts and listing
which concepts were related to which categories. Categories were thoroughly explored
through development of properties and dimensions as well as other descriptors (e.g., lists,
graphs). Throughout the process, we ensured that concepts we grouped together were
systematically related to one another by comparing our groupings with the original
transcript data and continually amending our category list (i.e., which concepts were
related to one another within which categories) throughout our development and
description of the categories. Thus, concepts and categories were well developed, were
grounded in the data, and were systematically related to one another.
Third, Corbin and Strauss (1990) outlined criteria for how the grounded theory
itself should be evaluated. They recommended that theories be evaluated based on the
variation that exists in the theory. In other words, the theory should account for multiple
phenomena and the conditions under which they appear. They also asserted that
?macroscopic? conditions such as social movements and cultural values need to be
directly related to the theory (i.e., as a component of the model). In addition, they noted
that identifying change processes is important and the mechanisms of change should be
accounted for. Finally, they recommended asking whether the theoretical findings are
useful, insofar as they produce insight into what the data are reflecting. They noted that it
is possible for analysis to be technically grounded in the data, but that incomplete use of
the data or sheer lack of creative thought might prevent the emergent theory from
reflecting what the data really indicate.
I was aware of these evaluative criteria before our research team began to
construct our emergent theory and therefore worked to create a theory that was complex
98
and reflective of the data. We were already aware from having analyzed the data in a
myriad of ways that participants? views and experiences were not all the same and thus
the model would need to account for variations. I believe our model accomplishes this
through the interdependence of its components and the breadth for which each
component allows. For example, the component of socio-cultural meaning allows for
beliefs that the government is failing or that it is helpful, and either view is explained
through its connection to education and support, personal context, and personal meaning.
Certainly, the model takes into account ?macroscopic? issues by accounting for the
treatment that HIV-positive individuals might receive within the current socio-political
climate (e.g., stigma) as well as how the government and other social institutions play a
role in individuals? creation of meaning regarding HIV. Finally, seven research team
members and I all believe that the theoretical model thoroughly captures and accurately
reflects the data that we analyzed. One way in which we attempted to accomplish this, in
addition to thinking creatively and relying on the data, was through our process in which
half of the team members (including me) created the initial model, and the other half
evaluated it. Our reasoning was that if those of us who constructed the theory strayed
away from what the data truly reflected, the others were far enough removed from our
thinking process to be able to notice that and correct it. As it happened, we adhered
closely to the provisional model, though the other members gave us additional feedback
about its efficacy. The limitations of the theoretical model are discussed below.
Limitations of the Study
Although the current study?s emergent theory describes how HIV-positive
African Americans construct meaning regarding HIV, the scope of the findings is limited
99
in several ways. As constructivist grounded theory acknowledges, the findings are a
representation of one reality, as constructed by the participants and the researchers. In the
current study, one way in which the construction of this reality may have been shaped or
limited is by the fact that the research team members were for the most part unlike the
participants relative to the primary variables of interest in the study. That is, all of the
research team members including me were HIV-negative, and only one member was
Black, and she considered herself Haitian-American. In addition, all research team
members were female, while the most of the participants were male. The research team
members also were very young as compared to the participants. Thus, our ability to
understand and interpret participants? viewpoints may have been limited by our differing
backgrounds.
The methodology of the current study resulted in additional limitations. My
reliance on existing literature and participants? feedback resulted in my conclusion that
my acting as a White interviewer in a study of African Americans was a sound
methodological choice. However, it is certainly possible that my serving as interviewer
for the current study influenced who participated as well as what the participants
discussed and how they did so. Unless the study were replicated with an African
American interviewer, it would be impossible to know how much that decision
influenced the study.
As discussed earlier, I also was limited by my inability to return to participants
and conduct theoretical sampling by probing for detail in certain areas in order to further
develop the theory. Although the study clearly resulted in an emergent theory and was
not dependent on that particular method of theoretical sampling, it might have added
100
more depth or complexity to the theory. One such example that I gave earlier is that
further interviewing might have helped the research team to better understand how the
participants who had beliefs about HIV being man-made might have differed from the
other participants. Of course, our inability to further understand that phenomenon may
have been more influenced by the extremely low number of participants who held those
beliefs than by our inability to re-interview them.
Finally, all personal and HIV-related demographic data were collected by self-
report. This included data concerning participants? date of diagnosis, physical health
(e.g., CD4 count, co-morbid diagnoses), and medication adherence. Such data were
contained in the clinic?s client records, but my limited time prevented me from
attempting to acquire IRB approval to view client records, which likely would have been
difficult. As it stood, I already had to obtain IRB approval from two sources, the clinic
and my university. Self-report is obviously potentially less accurate than client records,
particularly regarding data such as medication adherence, for which there might be a
social desirability effect. Nonetheless, asking participants about such details within the
interviews allowed them to add detail to their self-report. Much like grounded theory
overall, the results thus reflect participants? perceptions of reality and reports of reality as
opposed to a universal truth.
The implications of the study also are limited by the nature of the sample. The
participant sample for the current study was self-selected, which raises the question of
whether the participants who volunteered to be interviewed were different in any way
from those who did not. For example, it is possible that the low prevalence of beliefs
about large-scale discrimination (e.g., beliefs that the government created HIV to
101
eliminate African Americans) is related to the choice of individuals with those beliefs not
to be interviewed. In addition, while the sample was demographically representative of
the day treatment center?s population, several groups were overrepresented. First, the
sample was two-thirds male. Given the rise of HIV infection among African American
women (CDC, 2007), it would have been interesting to have more women represented in
the sample. Second, while the total age range of the sample was 36-60, almost all of the
participants were in their fifties. That may represent the Austin Center?s population, but
may not represent other clinical populations well. The relatively limited age range of the
sample raises questions about age or cohort effects. As one participant pointed out,
treatments and other aspects of HIV change rapidly over time. Since the sample consisted
of relatively older individuals, they may have been influenced by the initial discovery and
reaction to HIV, by the evolution of medications over time, or by the amount of time they
foresee living in the future.
Finally, it is important to remember that the sample for the current study was
taken from a clinical population. In order to qualify for day treatment at the Austin
Center, clients not only have to be HIV-positive, but also must have Medicaid, a health
insurance program that is provided to low-income children, seniors, and individuals with
disabilities. All participants in the current study reported receiving income related to
disabilities, which presumably were HIV related, though not necessarily, since I did not
ask about the exact nature of participants? disabilities. At any rate, the sample for the
current study consisted of low-income individuals with disabilities (again, probably
related to their HIV). In addition, many of the participants were in recovery from alcohol
or drugs and some had diagnosed mental health issues. The model accounted for these
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demographics by including personal context in the theory. Thus, it is possible that the
model might hold for non-clinical populations in that individuals? personal contexts
might interact with the same variables, albeit perhaps to create different meaning. It also
is possible that the model of how HIV-positive African Americans construct meaning
around their HIV might look very different in a non-clinical population. As such, the
emergent theory in the current study is probably best conceptualized as a theory most
relevant to a clinical population.
Implications for Research, Practice, and Advocacy
Implications for future research follow from the limitations of the study. It would
be helpful to explore the efficacy of the emergent theory in additional clinical samples, as
well as larger samples of females, younger individuals, and non-clinical samples. Future
research should explore such samples using both qualitative and quantitative approaches,
which would enhance the judgment of whether the results of the current study generalize
to other populations. Examining how the components of theory unfold (if at all) among
individuals of other racial/ethnic groups and with other chronic illness would address
interesting and important research questions. Is the importance of socio-cultural meaning
in the theory related to how African Americans have been treated historically and
currently, or might any racial/ethnic group see flaws in how our society has dealt with
HIV/AIDS and also incorporate it into what HIV means to them? Similarly, is the
importance of socio-cultural meaning in understanding one?s chronic illness unique to
HIV, or does it play a role in how individuals make meaning of living with other chronic
illnesses, as well? Certainly, other illnesses elicit reactions from society at large and may
need government or other institutional attention. The model might hold up to variability
103
in those domains (e.g., perhaps some illnesses are well-funded and well-received by the
public, which might lead to a different global meaning than was found in most of the
participants in the current study). However, it also is possible that the model would not fit
at all if the population were different. Finally, what does meaning-making of HIV look
like in other countries, where societal or institutional responses have been very different
from the United States? Would people still incorporate socio-cultural meaning into their
overall view of living with HIV, or would socio-cultural meaning not play a role in their
thought process? Overall, it will be interesting and important to explore how well the
emergent theory generalizes to other populations. The current study explored low-income
African Americans who are HIV-positive. How much more broadly might the theory
extend?
The results of the current study also highlight some other research questions that
will be important to explore in future research. One issue that deserves further attention is
the finding that most participants in the current study disbelieved rumors they have heard
about HIV/AIDS (e.g. that HIV is a gay disease, that HIV is spread through casual
contact, that HIV is a government conspiracy). As I discussed earlier, with the exception
of two people who acknowledge having believed in the past that HIV was a gay disease
and one person who discussed an overall change from believing most rumors to
disbelieving them or at least not concerning himself with them, it was unclear whether
participants had always disbelieved such rumors or whether they had undergone a
change. Results indicate that at least a few people underwent a change in beliefs. It
appears that such changes were related to the support and education they received, but it
104
is important to further explore whether people underwent changes in beliefs, and if so,
how.
Another extremely important question is how the participants in the current
sample (and anyone in HIV treatment of any sort) felt willing and able to seek such
treatment in the first place. Participants were very vocal about how much they benefited
from their medical treatment, from being around others who are HIV-positive, and from
the support and education they received. Clearly, the support and treatment that the
participants received worked. Future research should explore how to engage more HIV-
positive individuals in such treatment or care.
The success of the Whitman-Walker Clinic in successfully supporting, educating,
and treating the participants in the current study has practice implications, as well. On a
practical level, interventions like those used by Whitman-Walker Clinic should be
extended to as many HIV-positive individuals as possible. Practitioners could also work
to further pinpoint what aspects of the clinic or the day treatment program specifically are
most effective and create ways to bring those interventions to others. Overall, the
participants and the researchers involved in the current study found the Whitman-Walker
Clinic to be a model for HIV care. Of course, such interventions cannot be carried out
without funding, so practitioners of all disciplines must continue to work as advocates, as
well.
Additional implications for practice stretch across multiple disciplines. First, the
results of the study have implications for those who treat HIV-positive individuals
medically. Participants identified their doctors as their primary source of information and
were aware when their practitioners were not specialists or otherwise did not understand
105
what it was like to live with HIV (e.g. one participant whose doctor was of the opinion
that he should not date). It is important for doctors to be extremely knowledgeable and
also sensitive when discussing patients? HIV status. That extends to realizing the types of
rumors that are heard. Medical practitioners need to be aware of the rumors that exist
about HIV so they can respond frankly when questions are asked, and even bring the
issues up for discussion themselves. Of course, many experienced practitioners likely do
this already. However, it might be particularly important to include such issues in the
training of newer HIV practitioners.
The implications are similar for those who treat HIV-positive individuals from a
mental health perspective (i.e., psychologists or social workers). It is important to be
aware of the types of rumors and stigmas that exist and for practitioners to be willing to
discuss them. It also is important to realize the realities that are disappointing and
frustrating, such as the current dearth of government funding and other attention to HIV,
and it is important to let individuals mourn those conditions that are at least to some
degree uncontrollable. At the same time, it seems important to encourage HIV-positive
individuals to figure out what they can control, and how. Most of the participants in the
current study felt bolstered by identifying aspects of HIV that they could control.
In the current study, the topic of education was of vital importance to the
participants. At all levels, it is crucial to connect HIV-positive individuals with accurate
education about their diagnosis. This is particularly important given the finding that
nearly all of the participants in the current study first believed that they were going to die
and largely focused on their mortality, and later changed their beliefs and were able to
focus more on enjoying life. Thus, while medical professionals likely are used to
106
supplying information and education to their patients, that practice must extend to anyone
else who has contact with HIV-positive individuals, whether they are involved in health
care (e.g., psychologists or social workers) or not (e.g., clergy and other community
members). Disseminating education beyond those who are already in treatment is crucial.
As participants in the current study pointed out, funding and other attention to
HIV is lacking in the current socio-political climate in the United States. In some ways,
the current climate motivated participants to overcome barriers and to seek personal
control. But why should the social and institutional response to HIV/AIDS be something
that has to be overcome? Perhaps the participants in the current study did not expect any
better, but I do. We must continue to advocate for increased HIV/AIDS related funding,
for more effective and moderately priced medications, for a more tolerant religious
response to the issue, and for better prevention and education. As the participants made
very clear, HIV is still very much a concern in the United States, and we need people,
from political leaders to families next door, to understand that.
One aspect of the participants? meaning-making that the research team members
and I found striking, and worked to incorporate into our theory, was that it does not have
an end. HIV-positive individuals struggle to make sense of HIV every single day.
In the words of a participant:
The big picture is the fact that I think that every real disease, serious disease, that
mankind has faced, has been?come to some kind of terms with. Either it?s been
eradicated or cured or alleviated, or relieved, to some real extent. And this is, even
though the toughest, I think, one that we?ve come up with so far, and we?re in the
middle of it?We need a lot of people that have that kind of attitude that it is
something that can be done [so] that they?ll go and do something about it.
107
Appendix A
Contact Information Regarding the Study
Contact information regarding study:
Ruth Fassinger 
University of Maryland 
301-405-2873 
rfassing@umd.edu
WWC 24-hour hotline:
The Crisis Intervention Line offers emergency, 24 hour, Crisis Intervention consultation by 
phone to individuals experiencing a mental health emergency and to their partners, family and 
friends.  Call (202) 797-4444, leave your name and a number where you can be reached, and 
a counselor will return your call promptly. 
108
Appendix B
Field Notes Form
PARTICIPANT CODE: _________
Field Notes Form
Date:
Length of interview:
Comments on rapport:
General themes:
Other noteworthy information (may include interruptions or difficulties in conducting
interview, questions that were unclear to interviewee, prior contact with interviewee,
notes on interviewee?s tone of voice or speaking style, etc.):
109
Appendix C
Interview Protocol
Date:
Participant Code:
(Introduce self.) I?d like to thank you very much for giving me this opportunity to interview you. I
will be taping this interview for the purposes of data collection and analysis only. The only people
who will hear this tape will be members of the research team. Everything you say on this tape will be
kept confidential and your responses will not be tied to you as an individual in any way. Your
responses will not be shared with anyone else at the clinic. In this interview I?ll be asking you
several topics. First, I?m going to ask you a little bit about the clinic and your HIV status. Then I?ll
move on to ask you how you get information about HIV, what some of your thoughts are about HIV
generally, and then about your own experiences. I?ll give you an opportunity at the end to add
anything I may have missed. If at any point there?s something you don?t want to answer, just let me
know and I?ll move on to the next question.

 Tell me a little bit about your relationship to Whitman Walker Clinic.
 How did you hear about/choose the clinic?
 What services have you used?
 What were your expectations/first impressions, what are your
current impressions, and (if applicable) how/why did they change?

 Now I?d like to ask you a few questions about your HIV status.
 [Interviewer: Refer to demographic form, section entitled, ?HIV-
Related Demographics.? ]

 What have you heard or read about how or why people get or have
HIV/AIDS?
 What have you heard or read about HIV affecting any particular
groups of people?
 What have you heard or read about society?s role? (e.g., religions,
the government, medical institutions)
 What have you heard or read about HIV/AIDS treatments or
medications?
 What are the sources of that information?
CLINIC
EXPERIENCES
INFO.
RECEIVED
HIV-RELATED
DEMOGRAPHICS
110

 What are your own thoughts or beliefs?
 What are the sources of your thoughts or beliefs?
 Which sources do you believe, which sources do you not believe?
Why/why not?

 What, if any, connections do you see between your thoughts that we just
discussed and your experience of living with HIV?
 Connections between thoughts and the amount or types of
treatment you have chosen?
 Connections between thoughts and the ways you?ve reacted to or
coped with your HIV status?

 Have your thoughts changed over time? How? (i.e., what are your past
beliefs and how are they different?)
 How did that change in beliefs come about?
 What role, if any, did the clinic play in that change?

 Now I?d like just like to round things out by asking you some background
questions about yourself. If there?s anything you don?t want to answer, just
let me know, and I?ll move on to the next question.
 [Interviewer: Refer to demographic form.]

 Is there anything else that you?d like to share?
 Would you like to share any feedback with me about the interview
questions or the interview process?
 May I contact you again in the future if I have any questions about
this interview?
Offer interviewer?s contact information to participant and inform participant that
participant may contact the researchers for results of the study. Remind participant of
Whitman-Walker Clinic?s 24-hour hotline and offer the hotline number to participant.
Thank participant.
BELIEFS
ABOUT
HIV
BELIEFS AND
LIVING WITH
HIV
OTHER
CHANGES IN
BELIEFS
REMAINING
DEMOGRAPHICS
111
Appendix D
Demographics Form
Participant Code __________
HIV-Related Demographics
1. What was the date of your HIV diagnosis? __________________________________
2. What was your age at that time? __________________________________________
3. How many years have you been living with HIV? ____________________________
4. Have you been diagnosed with AIDS? _____________________________________
5. If applicable ? What was the date of your AIDS diagnosis? _____________________
6. If applicable ? What was your age at that time? ______________________________
7. If applicable ? How many years have you been living with AIDS? _______________
8. What is your current CD 4 count? _________________________________________
9. What is your current viral load? ___________________________________________
10. Are you currently prescribed to take any medications for HIV or AIDS?
_____ Yes
_____ No
11. If yes ? Can you please list medications prescribed to you:
12. If yes above (currently prescribed to take medications) ? how often do you take your
medications exactly as prescribed? (List choices aloud.)
1 2 3 4 5
never seldom sometimes usually always
112
13. Have you ever experienced side effects from your medications? (List the effects and
the time/duration.)
113
Personal Demographics
14. What is your current age? __________________
15. How do you identify your gender?
_____ Female
_____ Male
_____ Transgender, Female to Male
_____ Transgender, Male to Female
_____ Other (indicate): _________________________________________________
16. How do you identify your sexual orientation?
_____ Bisexual
_____ Gay/Lesbian
_____ Heterosexual
_____ Uncertain
_____ Other (indicate): _________________________________________________
17. What is your relationship status? (List choices if necessary.)
_____ Divorced/Separated from spouse/partner
_____ Married/Partnered
_____ Single and?
_____ In a committed/monogamous relationship but not married/partnered
_____ Not currently in a committed/monogamous relationship
_____ Widowed (spouse/partner is deceased)
18. What is the highest level of education that you have completed?
_____ Some grammar school (less than 8
th
grade)
_____ Completed 8
th
grade
_____ Some high school
_____ High school degree
_____ Some college
_____ College degree
_____ Some post-graduate work
_____ Graduate degree
19. What is your current yearly income? _______________________________________
20. What is the source of your income? ________________________________________
114
21. Do you have any children? __________
22. If yes ? How many? __________
23. If yes ? How old are they? __________
24. Do you identify with a particular religion or spirituality? _______________________
25. If yes ? What is it? _____________________________________________________
26. Besides HIV, have you had any significant medical or mental health issues or
diagnoses? If yes ? When?
Issue: ______________________________ Dates: ________________________
Issue: ______________________________ Dates: ________________________
Issue: ______________________________ Dates: ________________________
Issue: ______________________________ Dates: ________________________
Issue: ______________________________ Dates: ________________________
27. Have you ever had mental health treatment or therapy?
28. Have you ever had a problem with alcohol or drugs?
29. If yes ? When? ________________________________________________________
30. If yes ? What is/was your drug of choice? ___________________________________
31. If yes ? Have you ever been in a treatment or recovery program? ________________
32. If no ? About how often do you currently drink alcohol or use drugs? _____________
115
Whitman Walker Clinic-related Demographics
33. Whitman Walker services used ? CHECK ALL THAT APPLY:
_____ Bridge Back (residential addiction treatment)
_____ Case management
_____ Crisis intervention telephone line
_____ Day treatment (Austin Center or Max Robinson)
_____ Dental
_____ Food bank
_____ Gay men peer counseling
_____ HIV testing
_____ Individual counseling/psychotherapy
_____ Legal
_____ Lesbian peer counseling
_____ Medical (primary care, HIV care)
_____ Pharmacy
_____ Support group
_____ Therapy group
_____ Transgender health services
_____ WWAS (outpatient addiction treatment)
34. Do you pay for your services at WWC? If yes ? with what method?
_____ Insurance, commercial (example: Blue Cross)
_____ Medicare/Medicaid
_____ Ryan White (no payment - fees are covered by clinic?s HIV funding)
_____ Self-pay (Full fee)
_____ Sliding scale
_____ Other:
_______________________________________________________________
116
Appendix E
Research Team Recruitment Flyer
Wanted:
Research
Assistants
Holy Cross grad (?01) is seeking to form a research team for her
counseling psychology doctoral dissertation. The topic is African
Americans? experiences with and beliefs about HIV/AIDS. The
study is qualitative and involves analyzing interview transcripts
through a team process. Time commitment will be approximately 4
hrs/week (negotiable). Psychology, sociology, and non-majors all
welcome.
Benefits: No pay : ( However?This is a great experience for your
resume, mentoring and help with grad school/future is available,
and the study will be submitted for publication (co-authorship).
Interested? Contact Heather Walton at heather.walton@gmail.com.
117
Appendix F
Provisional Code List
1. origin of info. about clinic
2. length of time at clinic
3. benefits of clinic
4. program/structural support (clinic and non-clinic)
5. personal support
6. first signs of sickness (e.g., way person found out about diagnosis, went for
testing, etc.)
7. weight issues, wasting
8. hospital stay
9. energy level
10. substance use and recovery
11. realization regarding diagnosis
12. legal issues
13. HIV diagnosis
14. AIDS diagnosis
15. date of HIV diagnosis
16. date of AIDS diagnosis
17. age at HIV diagnosis
18. CD4 count
19. viral load
20. medications (e.g., what meds are taken)
21. medication adherence
22. side effects
23. switch in medication regimen
24. past perception(s) of HIV cause/contraction/etc.
25. current perception(s) of HIV cause/contraction/etc.
26. past reactions to diagnosis, including fears
27. current reactions to diagnosis
28. change in perception of?or reaction to?HIV, including cause of change (e.g.,
education) ? e.g., participant is discussing past vs. present
29. theories/rumors heard about HIV/AIDS
30. perception of government role in HIV/AIDS
31. perception of religion/church role in HIV/AIDS
32. perception of medication institutions? role in HIV/AIDS
33. perception of society response to HIV/AIDS (not better accounted for by a more
specific piece of society or by experience or fear of stigma)
34. education about HIV/AIDS (participants? education obtained/received)
35. sources of info./education about HIV/AIDS
36. effects of education, support, etc.
37. fear of stigma, or lack thereof (e.g., ?I don?t care what people think?) (If
discussing past vs. present, also code as change (26))
38. experiences of stigma
118
39. ways of coping with HIV/AIDS
40. involvement in educating others
41. trust, or lack thereof
42. (perceptions of) others? perceptions of HIV/AIDS
43. perceptions of/regarding medications, treatment
44. reactions to interview, including reason for participation, feelings about
participation
45. age
46. gender
47. sexual orientation
48. relationship status
49. educational history, level
50. income level and source
51. children
52. identification w/religion/spirituality
53. other illnesses, diagnosis (besides HIV)
54. mental health treatment history (including current)
55. use of clinic services (yes, no, why, and payment)
119
Appendix G
Second Code List
1. origin of info. about clinic
2. length of time at clinic
3. benefits of clinic
4. program/structural support (clinic and non-clinic)
5. personal support
6. first signs of sickness (e.g., way person found out about diagnosis, went for
testing, etc.)
7. weight issues, wasting
8. hospital stay
9. energy level
10. substance use and recovery
11. realization regarding diagnosis
12. legal issues
13. HIV diagnosis
14. AIDS diagnosis
15. date of HIV diagnosis
16. date of AIDS diagnosis
17. age at HIV diagnosis
18. CD4 count
19. viral load
20. medications (e.g., what meds are taken)
21. medication adherence
22. side effects
23. switch in medication regimen
24. past perception(s) of HIV cause/contraction/etc. ? general beliefs, not personal
story ? see 59
25. current perception(s) of HIV cause/contraction/etc. ? general beliefs, not personal
story ? see 59
26. past reactions to diagnosis, including fears
27. current reactions to diagnosis
28. change in perception of?or reaction to?HIV, including cause of change (e.g.,
education) ? e.g., participant is discussing past vs. present
29. theories/rumors heard about HIV/AIDS
30. perception of government role in HIV/AIDS
31. perception of religion/church role in HIV/AIDS
32. perception of medication institutions? role in HIV/AIDS
33. perception of society response to HIV/AIDS (not better accounted for by a more
specific piece of society or by experience or fear of stigma)
34. education about HIV/AIDS (participants? education obtained/received) ?
including lack thereof ? yes/no, amount, level; Ex: I used to be really uneducated
about HIV.
120
35. sources of info./education about HIV/AIDS ? including sources believed, sources
not believed, and sources ?unjudged?
36. effects of education, support, etc.
37. fear of stigma, or lack thereof (e.g., ?I don?t care what people think?) (If
discussing past vs. present, also code as change (26))
38. experiences of stigma
39. ways of coping with HIV/AIDS
40. involvement in educating others
41. trust, or lack thereof
42. (perceptions of) others? perceptions of HIV/AIDS
43. perceptions of/regarding medications, treatment
44. reactions to interview, including reason for participation, feelings about
participation
45. age
46. gender
47. sexual orientation
48. relationship status
49. educational history, level
50. income level and source
51. children
52. identification w/religion/spirituality
53. other illnesses, diagnosis (besides HIV)
54. mental health treatment history (including current) ? type, level, whether not in
treatment only ? otherwise, see #57
55. use of clinic services (yes, no, why, and payment)
56. reactions to, or perceptions of, other clients
57. mental health issues/stress
58. thoughts regarding cure
59. HIV contraction ? personal story ? general perceptions, see 24, 25
60. perception of HIV affecting particular groups
61. perceptions about role of education ? Ex: ?People have HIV because of lack of
education?; Ex: HIV would be eliminated if people were better educated.? (e.g.,
both current and future/hypothetical)
Other topics to think about, that we haven?t figured out yet?
1. doctors/role of doctors (Is this its own category or does all doctor info. fall into
other categories?)
2. thoughts about death
3. statements like, ?This is not going to kill mankind?
4. statements like, ?Something good is going to come through?
5. statements like, ?The climate in the country has gotten better for gays and
lesbians?
121
Appendix H
Third Code List
1. origin of info. about clinic
2. length of time at clinic
3. attitudes/expectations/perceptions re: clinic
4. program/structural support (clinic and non-clinic)
5. personal support
6. physical symptoms (other than side effects)
7. weight issues, wasting
8. hospital stay
9. energy level
10. substance use and recovery
11. realization regarding diagnosis
12. legal issues
13. HIV diagnosis
14. AIDS diagnosis
15. date of HIV diagnosis
16. date of AIDS diagnosis
17. age at HIV diagnosis
18. CD4 count
19. viral load
20. medications (e.g., what meds are taken)
21. medication adherence
22. side effects
23. switch in medication regimen
24. past perception(s) of HIV cause/contraction/etc. ? general beliefs, not personal
story ? see 59
25. current perception(s) of HIV cause/contraction/etc. ? general beliefs, not personal
story ? see 59
26. past reactions to diagnosis, including fears
27. current reactions to diagnosis
28. change in perception of?or reaction to?HIV, including cause of change (e.g.,
education) ? e.g., participant is discussing past vs. present
29. theories/rumors heard about HIV/AIDS
30. perception of government role in HIV/AIDS
31. perception of religion/church role in HIV/AIDS
32. perception of medication institutions? role in HIV/AIDS
33. perception of society response to HIV/AIDS (not better accounted for by a more
specific piece of society or by experience or fear of stigma)
34. education about HIV/AIDS (participants? education obtained/received) ?
including lack thereof ? yes/no, amount, level; Ex: I used to be really uneducated
about HIV.
35. sources of info./education about HIV/AIDS ? including sources believed, sources
not believed, and sources ?unjudged?
122
36. effects of education, support, etc.
37. fear of stigma, or lack thereof (e.g., ?I don?t care what people think?) (If
discussing past vs. present, also code as change (26))
38. experiences of stigma
39. ways of coping with HIV/AIDS
40. involvement in educating others
41. trust, or lack thereof
42. (perceptions of) others? perceptions of HIV/AIDS
43. perceptions of/regarding medications, treatment
44. reactions to interview, including reason for participation, feelings about
participation
45. age
46. gender
47. sexual orientation
48. relationship status
49. educational history, level
50. income level and source
51. children
52. identification w/religion/spirituality
53. other illnesses, diagnosis (besides HIV)
54. mental health treatment history (including current) ? type, level, whether not in
treatment only ? otherwise, see #57
55. use of clinic services (yes, no, why, and payment)
56. reactions to, or perceptions of, other clients
57. mental health issues/stress (including guilt, self-blame)
58. thoughts regarding cure
59. HIV contraction ? personal story ? general perceptions, see 24, 25
60. perception of HIV affecting particular groups
61. perceptions about role of education ? Ex: ?People have HIV because of lack of
education?; Ex: HIV would be eliminated if people were better educated.? (e.g.,
both current and future/hypothetical)
62. doctors/role of doctors
63. thoughts about death
64. gay and lesbian issues
123
Appendix I
Category List
 DEMOS ? HEATHER
o 13 ? HIV diagnosis
o 14 ? AIDS diagnosis
o 15 ? date of HIV diagnosis
o 16 ? date of AIDS diagnosis
o 17 ? age at HIV diagnosis
o 45 ? age
o 46 ? gender
o 47 ? sexual orientation
o 48 ? relationship status
o 49 ? educational history, level
o 50 ? income level and source
 EDUCATION ? BRONWYN
o 34 ? education about HIV/AIDS (participants? education obtained/received)
o 35 ? sources of info./education about HIV/AIDS
o 36 ? effects of education, support, etc.
o 40 ? involvement in educating others
o 61 - perceptions about role of education ? Ex: ?People have HIV because of
lack of education?; Ex: HIV would be eliminated if people were better
educated.? (e.g., both current and future/hypothetical)
o 62 ? doctors/role of doctors
 MEDICATION ? AMY
o 20 ? medications (e.g., what meds are taken)
o 21 ? medication adherence
o 22 ? side effects
o 23 ? switch in medication regimen
o 43 ? perceptions of/regarding medications, treatment
 CLINIC ? SUELEIDY
o 1 ? origin of info. about clinic
o 2 ? length of time at clinic
o 3 ? attitudes/expectations/perceptions re: clinic
o 4 ? program/structural support
o 35 ? sources of info./education about HIV/AIDS ? including sources believed,
sources not believed, and sources ?unjudged?
o 55 ? use of clinic services (yes, no, why, and payment)
o 56 ? reactions to, or perceptions of, other clients
o 62 ? doctors/role of doctors
124
 PERCEPTIONS OF SOCIETY/INSTITUTIONS ? KRISTIN
o 29 ? theories/rumors heard about HIV/AIDS
o 30 ? perception of government role in HIV/AIDS
o 31 ? perception of religion/church role in HIV/AIDS
o 32 ? perception of medication institutions? role in HIV/AIDS
o 33 ? perception of society response to HIV/AIDS (not better accounted for by
a more specific piece of society or by experience or fear of stigma)
o 60 ? perception of HIV affecting particular groups
 CAUSE/CONTRACTION ? HEATHER
o 11 ? realization regarding diagnosis
o 24 ? past perception(s) of HIV cause/contraction/etc. ? general beliefs, not
personal story ? see 59
o 25 ? current perception(s) of HIV cause/contraction/etc. ? general beliefs, not
personal story ? see 59
o 28 ? change in perception of?or reaction to?HIV, including cause of change
(e.g., education) ? e.g., participant is discussing past vs. present
o 29 ? theories/rumors heard about HIV/AIDS
o 34 ? education about HIV/AIDS (participants? education obtained/received) ?
including lack thereof ? yes/no, amount, level; Ex: I used to be really
uneducated about HIV.
o 36 ? effects of education, support, etc.
o 59 ? HIV contraction ? personal story ? general perceptions, see 24, 25
 SUPPORT - LYNN
o 4 ? program/structural support (clinic and non-clinic)
o 5 ? personal support
 PHYSICAL HEALTH/SYMPTOMS / DISEASES/DISORDERS ? KATE (and
Heather)
o 6 ? physical symptoms (other than side effects)
o 8 ? hospital stay
o 9 ? energy level
o 10 ? substance use and recovery
o 18 ? CD4 count
o 19 ? viral load
o 22 ? side effects
o 53 ? other illnesses, diagnoses (besides HIV)
o 54 ? mental health treatment history (including current) ? type, level, whether
not in treatment only ? otherwise, see #57)
o 57 ? mental health issues/stress
125
 EMOTIONAL REACTION TO DIAGNOSIS ? KATE
o 10 ? substance use and recovery
o 11 ? realization regarding diagnosis
o 26 ? past reactions to diagnosis, including fears
o 27 ? current reactions to diagnosis
o 28 ? change in perception of?or reaction to?HIV, including cause of change
(e.g., education) ? e.g., participant is discussing past vs. present
o 37 ? fear of stigma, or lack thereof (e.g., ?I don?t care what people think?) (If
discussing past vs. present, also code as change (26))
o 39 ? ways of coping with HIV/AIDS
o 57 ? mental health issues/stress
 VIEWS OF THE HIV/AIDS COMMUNITY - LYNN
o 37 ? fear of stigma, or lack thereof (e.g., ?I don?t care what people think?) (If
discussing past vs. present, also code as change (26))
o 38 ? experiences of stigma
o 42 ? (perceptions of) others? perceptions of HIV/AIDS
o 60 ? perception of HIV affecting particular groups
o 64 ? gay and lesbian issues
126
Appendix J
Properties and Dimensions of the Categories
CAUSE/CONTRACTION
Understands Medical Causes of HIV Inaccurately-----Accurately
Cites Role of Self in Personal Cause/Contraction No-----Yes
Believes HIV is a Gay Disease No-----Yes
Believes Monkey Plays Role in Cause/Contraction No-----Yes
Believes Casual Contact Plays a Role No-----Yes
Believes Plant Plays a Role No-----Yes
Believes Cause is Related to Experiment Gone Bad No-----Yes
Believes HIV is Man-Made No-----Yes
Believes HIV is a Government Conspiracy No-----Yes
Has Heard Theories Re: Cause that are Other than
Medical/Scientific No-----Yes
Believes Theories (one or more) that are Other than
Medical/Scientific No-----Yes
CLINIC/SUPPORT
Attitudes Regarding Clinic Negative-----Positive
Reactions/Perceptions Re: Other Clients Negative-----Positive
Initial Responses to the Gay Community Rejection-----Acceptance
Role of Doctors Negative-----Positive
Reliance on Doctors Low-----High
Trusts Doctor/Uses Doctor as Resource No-----Yes
Level of Support/Assistance Received in Caring for Self Low-----High
EDUCATION
Education of Kids/Teens is Needed No-----Yes
Educates Others No-----Yes
Education Helps with Coping No-----Yes
Believes Information from Others No-----Yes
Doctor is Source of Education No-----Yes
EMOTIONAL REACTION TO DIAGNOSIS
Ways of Coping Negative-----Positive
Past Reaction to Diagnosis Negative-----Positive
Sense of Control Lack of Control-----Control
Change in Perception/Reaction to Diagnosis None-----Significant Change
127
MEDICATION
Experiences Side Effects Currently No-----Yes
Experienced Side Effects in the Past No-----Yes
Number of Medications Taken Few-----Many
Adheres to Medication Never-----Always
Views of Medication Negative-----Positive
PERCEPTIONS OF SOCIETY/INSTITUTIONS
Perception of Government Negative-----Positive
Believes that Government Misspends Money No-----Yes
Believes that Government is Helpful/Improved No-----Yes
Perception of Religious Institutions Negative-----Positive
Believes that Religions/Church Ignore HIV No-----Yes
Perception of Personal Religion/Spirituality Hurtful-----Helpful
Has Found Religious Acceptance Personally No-----Yes
Perception of Medical Institutions Negative-----Positive
Believes Pharmacuetical Companies Focus on
Profits/Do Not Prioritize HIV No-----Yes
Believes that Medical Institutions are Improving No-----Yes
Perception of Society Negative-----Positive
Believes Society?s Response to HIV has Improved No-----Yes
Believes Society Ignores/Ostracizes People w/HIV No-----Yes
PHYSICAL AND MENTAL HEALTH
Discussed/Experienced Physical Symptoms/Illness No-----Yes
Positive/Determined Re: Symptoms/Health No-----Yes
History of Substance Abuse No-----Yes
Mental Health Issues None-----Diagnosed
STIGMA
Ease of Disclosing HIV Status Difficult-----Easy
Perceptions of Stigma Experienced by Others A little-----A lot
Perceptions of Stigma Experienced Personally A little-----A lot
Properties w/out Traditional Dimensions
Types of Theories/Rumors Heard (Cause/Contraction)
Number of time theories/rumors mentioned (among the whole sample) (Cause/Contract)
Origin of Info. Re: the Clinic (Clinic/Support)
Use of Clinic Services (Clinic/Support)
Sources of Support (Clinic/Support)
Acceptance by Community (Emotional Reaction)
HIV diagnosis ? path of discovery (Health)
Other Physical Disorders (Health)
Perceptions of Who HIV Affects (Perceptions of Society/Institutions)
128
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