THE IMPACT OF STIGMA ON THE SELF-CARE BEHAVIORS
OF HIV-POSITIVE GAY MEN: STRIVING FOR NORMALCY
BY
Christian Thomas Chenard
B.S. University of Maine at Farmington, 1973
M.Ed. University of Maine at Orono, 1978
A.S.N. East Tennessee State University, 1985
M.S.N. Simmons College, 1996
A THESIS
Submitted in Partial Fulfillment of the
Requirement for the Degree of
Doctor of Philosophy
(Interdisciplinary in Nursing and Health Science)
The Graduate School
The University of Maine
May, 2006
Advisory Committee:
Catherine Berardelli, Assistant Professor of Nursing, Co-Advisor
Therese Shipps, Associate Professor of Nursing, Co-Advisor
Sandra Butler, Associate Professor of Social Work
Sandra Caron, Professor of Family Relations
Susan Sepples, Associate Professor of Nursing
THE IMPACT OF STIGMA ON THE SELF-CARE BEHAVIORS
OF HIV-POSITIVE GAY MEN: STRIVING FOR NORMALCY
By Christian Thomas Chenard
Thesis Co-Advisors: Dr. Catherine Berardelli and Dr. Therese Shipps
An Abstract of the Thesis Presented
in Partial Fulfillment of the Requirements for the
Degree of Doctor of Philosophy
(Interdisciplinary in Nursing and Health Science)
May 2006
Since the beginning of the AIDS epidemic in 1981, persons diagnosed with
human immunodeficiency virus (HIV) have been the targets of stigma. This is
particularly significant for HIV-positive gay men who are additionally stigmatized
because of negative societal views of homosexuality. While a few studies have
examined the impact of stigma on the lives of persons living with HIV and AIDS
(PWHA), very little of this research specifically examines how the complex forces of
stigma influence the self-care behaviors of HIV-positive gay men. The purpose of this
grounded theory study was to investigate how HIV-positive gay men manage the
consequences of stigma, and more specifically to examine the impact of stigma on their
self-care decisions and behaviors.
A theoretical sample of 20 HIV-positive gay men participated in this study.
Individual semi-structured interviews were conducted with 15 HIV-positive gay men.
The oral interviews were audio-recorded and transcribed verbatim. A focus group
consisting of five additional HIV-positive gay men also generated data on the topic.
Participants were asked to talk about their experiences of dealing with gay stigma and
HIVIAIDS stigma, and to describe how stigma affected their self-care. Men responded
to HIVIAIDS stigma and gay-related stigma by engaging in a number of strategies
along a stigma management continuum in order to protect themselves from being
negatively labeled, shamed, or rejected by others. Striving for normalcy emerged as the
central category across the entire set of interviews and focus group discussion.
Participants sought to maintain normal lives by seeking affirming social support
networks. Most men saw status disclosure as the main route to an affirming social
support system and ultimately as a way to resolve any incongruence between self-view
and reflected appraisals. A number of implications for clinical practice are drawn from
the findings. The study's limitations, and suggestions for future research are also
discussed.
ACKNOWLEDGEMENTS
The author would like to recognize and thank the following people for their
invaluable assistance:
My thesis co-advisors, Dr. Catherine Berardelli and Dr. Therese Shipps,
and other members of my committee, Dr. Sandra Butler, Dr. Sandra
Caron, and Dr. Susan Sepples, for their patience, guidance and support.
Dr. John OYBrienand Dr. Lori Power for providing advice and peer
reviews.
Dr. Kimberly Moody for her continued support and mentoring.
The 20 men who participated in this research study for sharing their
thoughts and experiences, and for generously giving their time and
feedback.
TABLE OF CONTENTS
..
ACKNOWLEDGEMENTS ........................................................................ ii
..
LIST OF TABLES ................................................................................vii
...
LIST OF FIGURES ...............................................................................viii
Chapter
1. BACKGROUND. SIGNIFICANCE, AND AIM OF THE STUDY ...................... 1
Introduction .................................................................................... 1
HIVIAIDS .Stigma in the United States ....................................................
2
Conceptualization of Stigma ................................................................ 3
Characteristics of HIVIAIDS Stigma ......................................................6
The Link Between HIVIAIDS Stigma and Gay Men .................................... 8
Stigma and the US Health Care System .................................................. 11
Stigma and Public Health ................................................................... $13
Sociocultural Implications of HIVIAIDS Stigma........................................15
The Burden of Stigma for HIV-Positive Gay Men ......................................
18
The Aim of the Study .......................................................................21
Chapter Summary ........................................................................... 23
2 . REVIEW OF THE LITERATURE ...........................................................
25
Introduction .................................................................................. .25
HIVIAIDS Stigma and the Illness Trajectory ........................................... 26
Responses to Stigma......................................................................
27
28
Stigma and HIV-positive Gay Men ................................................
Stigma as a Barrier to Health Care ................................................33
Stigma Management .................................................................35
Chapter Summary ...........................................................................
37
3 . METHODOLOGY AND STUDY DESIGN ................................................40
Introduction ................................................................................... 40
Using Grounded Theory .................................................................... 40
Grounded Theory Methodology ...........................................................41
Situating Grounded Theory ........................................................ 42
Conceptual Framework ............................................................
43
Grounded Theory Methods .......................................................45
Validity, Objectivity and Reliability in Qualitative Inquiry ..........................47
Reflexivity: Researcher Bias and Subjectivity .......................................... 50
Terminology ................................................................................. 51
Study Design and Implementation ........................................................ 52
Interview Questions ................................................................. 53
Recruitment.......................................................................... -53
Participation Criteria ................................................................ 54
Description of the Primary Participants .......................................... 54
Confidentiality and Human Subjects Protections ...............................55
Institutional Review Board Approval ............................................55
..56 .
Data Collection. Coding. and Analysis ..................................................
Memos ................................................................................
57
Coding ................................................................................. 57
Methods Used to Assure Trustworthiness. Confirmability and
Credibility ................................................................................... 59
Member Checks and Peer Review ................................................ 60
Self-Reflexivity ....................................................................... 61
Chapter Summary ......................................................................... -64
4 . RESULTS .......................................................................................65
Introduction .................................................................................. 65
Axial Codes and Theoretical Concepts ................................................... 66
Theoretical Concept 1: Perceived Stigma Threats ...................................... 67
Identifying Gay Stigma ............................................................. 68
Identifying HIVIAIDS Stigma .....................................................71
Identifying the Impact of Stigma .................................................. 76
Theoretical Concept 2: Stigma Management ............................................ 78
Hiding .................................................................................80
Selective Disclosure ................................................................. 83
Preemptive Disclosure .............................................................. 85
Theoretical Concept: 3: Striving for Normalcy .......................................... 90
Maintaining Balance/Normalcy ................................................... 91
Impact of Stigma on Self-care: The Role of Social Support ..................93
Striving for Normalcy as the Central Category ........................................ 102
Validating the Theoretical Fit ............................................................105
Chapter Summary ......................................................................... 106
5. CONCLUSIONS.............................................................................. 1 07
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107
Perceived Stigma Threats ...............................................................107
Stigma Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
Self-care ..................................................................................
112
The Role of Social Support. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
Theoretical Literature..................................................................... 115
Striving for IVormalcy ..................................................................... 118
Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123
6 . IMPLICATIONS, LIMITATIONS, AND SUGGESTIONS FOR FUTURE
RESEARCH . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
Introduction ................................................................................. 126
Implications for Clinical Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
Specific Implications for Medical Professionals ............................... 127
Specific implications for Mental Health Professionals....................... 129
.
.
.
L I ~tat~ons
I
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . I31
Suggestions for Future Research ........................................................ 132
Chapter Summary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
7. REFERENCES ................................................................................ 137
8. APPENDIX. Coding Process ................................................................. 155
9. BIOGRAPHY OF THE AUTHOR ......................................................... 159
vii
LIST OF TABLES
Table 1. Example of the Coding Process ........................................................58
Table 2 . Example of Data Reduction: Axial Codes to Theoretical Concepts ..............66
Table A .1 . Data Reduction of Unduplicated Open Codes to Axial Codes ................ 154
LIST OF FIGURES
Figure 1. Continuum of Stigma Management Strategies.. . . . .. . ... ..... . . . .. .. ... .... . . .....80
Figure 2. Conceptual Model Showing the Process of Stigma Management and
Self-care.. . . . . . .. . . ... . . . . .. ... .. .. .. ... . . .. . . . . . . ,. ... ... . . . .. . . . .. . .. . . . . . ..... .., . ...103
Chapter 1
BACKGROUND, SIGNIFICANCE, AND AIM OF THE STUDY
Introduction
Research has demonstrated that the stigma associated with the acquired
immunodeficiency syndrome (AIDS) continues to have a negative impact on the health
and well-being of those infected with the human immunodeficiency virus (HIV).
Moreover, because of the strong association between HIVIAIDS and homosexuality,
which is also highly stigmatized, HIV-positive gay men have been disproportionally
affected by stigma. While a significant body of literature has examined HIVIAIDS
stigma from a number of perspectives, most research in this area in the last twenty years
has looked at the origins of stigma or analyzed how and why it is perpetrated. To date
few studies have specifically focused on how persons with HIVIAIDS (PWHA) respond
to the forces of stigma, and of these, even fewer have looked at how stigma impacts the
self-care behaviors of HIV-positive gay men.
The purpose of this grounded theory study was to examine how HIV-positive gay
men cope with stigma, and more specifically, to offer a theoretical explanation of how
stigma impacts their self-care decisions and behaviors. The HIV-positive gay men who
participated in this research were asked to describe their experiences of stigma and to
explain its role in their self-care decisions and behaviors. This chapter will provide the
relevant background for understanding the nature and impact of stigma on HIV-positive
gay men and further explain the need for the current study, which focuses on how
stigma influences their self-care decisions and behaviors.
HIVIAIDS Stigma in the United States
In the United States (US) persons with HIVIAIDS have been the targets of stigma
since the beginning of the HIVIAIDS epidemic in 1981. Press accounts and anecdotal
reports from the first decade of the epidemic provide numerous examples of PWHAs
being evicted from their homes, fired from their jobs, and rejected by their families,
friends and neighbors because of the stigma associated with HIVIAIDS (Herek, 1999).
After two decades of public education messages, clarification of transmission risks, and
efforts to dispel pervasive misperceptions about HIVIAIDS contagion, a significant
minority of the public continues to express negative attitudes toward persons with
HIVIAIDS (PWHA). In a recent survey conducted by Herek, Capitanio and Widaman
(2002), one-fifth of the 669 adults contacted said they "feared" PWHAs; one out of six
expressed "disgust" toward PWHAs; and nearly one-third said they would avoid
shopping at a grocery store owned by someone with AIDS. Moreover, nearly half of the
respondents in the survey believed that PWHAs were responsible for their illness, and
one-fourth believed that PWHAs who acquired HIV through sex or drug use "have
gotten what they deserve" (p. 372).
A survey conducted by the Research Triangle Institute in 2000 revealed that
40.2% of respondents believed HIV transmission could occur from sharing a glass, and
41.1% thought it could occur from being sneezed or coughed on by someone with tlIV
(Centers for Disease Control and Prevention [CDC], 2000). In 1998, nearly two decades
into the HIVIAIDS epidemic in the US, an eight-year-old girl from New York State was
denied admission to seven Girl Scout troops because she was known to be HIV positive
(Richardson, 1999). Such responses clearly extend beyond realistic concerns about
contagion and point to the highly stigmatizing nature of HIV and AIDS.
Negative reactions to a number of socially unacceptable characteristics associated
with HIVIAIDS and PWHAs appear to be at the root of HIVIAIDS stigma (Herek,
1999,2002). These reactions became entrenched soon after the first cases of AIDS were
reported in June of 1981, and they are based on invalid beliefs and assumptions about
disease-related characteristics of HIV and its strong association with previously
stigmatized persons or groups perceived to be morally suspect, sexually deviant, and
blameworthy. Research suggests that PWHAs are viewed more negatively than persons
with other stigmatizing illnesses (Crawford, 1996; Herek, et al., 1998; Peters, den Boer,
Kok, & Schaalma, 1994; St. Lawrence, Husfeldt, Kelly, Hood, & Smith, 1990), which
is in large part due to the associations made between HIVIAIDS and homosexuality,
promiscuity, and illicit drug use. While negative societal attitudes toward PWHAs, may
seem to have diminished in the last 20 years, there continues to be a need for research
that explores the effects of stigma on the health and well-being of HIV-positive gay
men.
Conceptualization of Stigma
Stigma (from Greek: "to stick" or pierce) is a socially constructed concept that
labels a person or group of persons as deviant from some norm, ideal or expectation.
The stigmatized are viewed negatively by the non-stigmatized for having violated
certain rules or for possessing traits that are negative, feared, or socially devalued. In his
seminal essay, Erving Goffman (1963) describes stigma as "an attribute that is deeply
discrediting," and as such, the stigmatized person becomes "reduced in our minds from
a whole and usual person to a tainted, discounted one" (p. 3). Stigma separates the
"normals" in society from those with an "undesired differentness" (p. 5). Stigmatized
persons are labeled with negative attributes that eventually become linked to
stereotypes, which further separates those who are stigmatized from "normals."
Goffman further delineates three variations of stigma: (1) "abominations of the
body," such as "physical deformities," observable traits or apparent symptoms; (2)
"blemishes of individual character," such as "addictions, weak will, dishonesty,
homosexuality, and unnatural passions"; and (3) "tribal stigma," meaning vicarious
stigma by association with a pre-stigmatized group (p. 4). While Goffman's work
predated HIV and AIDS by nearly two decades, his typology is effective for a
preliminary understanding of HIVIAIDS stigma and its implications. For example,
PWHAs may have visible physical manifestations of HIVIAIDS such as weight loss,
cachexia, opportunistic infections, or body dysmorphic changes. They may be perceived
as depraved or weak willed because of deviant sexual practices or chronic drug use.
They may also incur tribal stigma by association with previously stigmatized groups,
e.g., users of illicit drugs, sex workers, certain racial minorities, and gay men.
In their study on persons with epilepsy, Scrambler and Hopkins (1986) further
expanded the stigma concept by distinguishing between enacted stigma andfelt stigma
(p. 33). They described enacted stigma as instances of discrimination based on the
person's perceived deficit or social unacceptability, whereas felt stigma refers to the
person's fear of being stigmatized and feeling shame for possessing the stigmatizing
trait (in this case having epilepsy). Notably, the authors further pointed out that felt
stigma was usually assimilated or learned and, more often than not, it preceded episodes
of enacted stigma. Interestingly, the respondents in their study "experienced far more
unhappiness, anxiety and self-doubt through felt stigma than they did.. .from enacted
stigma" (p. 38). In other words, episodes of enacted stigma were not always required in
order for those with the stigmatized trait (in this case epilepsy) to feel a stigma burden.
It is worth noting that stigmatized persons are likely to accept or internalize many
of the negative attributes assigned to them and thus construct a negative self concept-a
phenomenon referred to as internalized stigma (Lee, Kochman, & Sikkema, 2002;
Novick, 1997; Parker & Aggleton, 2003). As Goffman (1963) aptly noted, "Shame
becomes a central possibility, arising from the individual's perception of one of his own
attributes as being a defiling thing to possess.. .." (p. 7). While internalized stigma is
described in the HIVIAIDS literature as a distinct phenomenon, it is closely tied to
internalized homophobia, which is the internalization of cultural anti-gay attitudes
toward gay men, lesbians, and bisexuals. Meyer and Dean (1998) define internalized
homophobia as another form of stigma, i.e., "the gay person's direction of negative
social attitudes toward the self, leading to a devaluation of the self and resultant internal
conflicts and poor self regard" (p. 161).
Whether related to having HIVIAIDS or being gay, stigma labels HIV-positive
gay men as a deviant social group, thus discrediting and discounting them. Like other
stigmatized groups (e.g., racial minorities, persons with physical disabilities or mental
illness) HIV-positive gay men lose some of the social advantages that are readily
available to the non-stigmatized. Moreover, because those who are stigmatized tend to
internalize many of the negative cultural messages associated with the stigmatized
traits, self-stigmatization also plays a role in how HIV-positive gay men value
themselves in society. Given the nature of stigma and its potential to subjugate, selfdeprecate, and disempower, it makes sense from a research perspective to explore the
ways in which HIV-positive gay men cope with stigma and to carefully examine how it
impacts their decisions about self-care.
Characteristics of HIVIAIDS Stigma
A number of noteworthy characteristics attributed to HIVIAIDS make it likely to
engender stigma. First, greater stigma is typically associated with illnesses and
conditions that are severe, unalterable and fatal (Crandall, 1991; Crandall & Moriarty,
1995; Fife & Wright, 2000; Sontag, 1989). While advances in antiretroviral therapy
have significantly reduced morbidity and mortality and essentially transformed
HIVIAIDS from a terminal illness to a chronic medical condition, HIVIAIDS, like
many other chronic illnesses, is progressive and incurable.
Second, HIV is more likely to induce stigma because it is a communicable disease
(Dukes & Denny, 1995). Exaggerated fears about HIV contagion have been associated
with the AIDS epidemic since the beginning, and many Americans continue to
overestimate the risks of casual contact with PWHAs (Herek & Capitanio, 1998, 1999).
For example, when Herek and Capitanio (1 999) asked respondents about the likelihood
that they would wear a sweater previously worn by a PWHA or drink from a sterilized
glass previously used by a PWHA, slightly more than one-fourth said they were less
likely to wear the sweater (27.1%) or drink from the glass (27.5%).
Third, diseases and conditions that are perceived to be transmitted by controllable
behaviors such as sexual intercourse or drug use are more likely to evoke stigma (Cobb
& DeChabert, 2002; Crandall, 1991; Herek & Capitanio, 1999; Hunter & Ross, 1991;
Powell, Christensen, Abbot, & Katz, 1998; Pryor, Reeder, Yeadon, & Hesson-McInnis,
2004). As such, the degree to which PWHAs are stigmatized is also based on the HIV
transmission vector and the infected person's perceived control over the behavioral risk.
As an example, Crandall(1991) found that vector-related behavior that is volitional or
controllable (e.g., HIV acquired through unprotected sexual intercourse) created more
social distance than behavior that was unintentional (e.g., occupationally-acquired
HIV). Similarly, Hunter and Ross (1991) demonstrated that PWHAs who were known
to be infected through sex or injection drug use were perceived by their health care
providers as being more "blameworthy," and "culpable" (p. 953).
Fourth and finally, HIVIAIDS stigma is often layered onto the preexisting stigma
with which certain population subgroups are imbued, particularly gay men, racial
minorities, and injection drug users (Crawford 1996; Herek, 2002; Herek & Capitanio,
1999; Novick, 1997). For example, chronic heroin users who test HIV-positive are
theoretically stigmatized twice, as are African Americans with AIDS, and HIV positive
gay men. The concept of "double stigma" has been used to explore the dual dimension
of HIVIAIDS stigma coupled with the stigma of homosexuality for HIV-positive gay
men (Grossman, 1991; Kowalewski, 1988). However, this dual stigma concept is
probably an over simplification because HIV/AIDS stigma is a complex phenomenon of
interrelated components. It is more likely that the effect of "double stigma," or multilayered stigma, as it applies to gay-identified PWHAs is a convergence of multiple
stigma forces that are synergistic rather than additive (Crandall, 1991; Novick, 1997).
Given the nature of HIV as an infectious disease, its transmission vectors, and the
groups with which it is associated, it would seem inevitable that HIV-positive gay men
were destined to become prime targets of stigma and discrimination.
The Link Between HIVIAIDS Stigma and Gay Men
Research suggests that HIVIAIDS stigma in the United States through the last two
decades has been heavily influenced by negative cultural views of homosexuality
(Devine, Plant & Harrison, 1999; Herek & Capitanio, 1999; Pryor, Reeder & Landau,
1999). This is because the historical epidemiology of HIVIAIDS has associated the
illness with gay men from the beginning of the epidemic. In June of 1981, the Centers
for Disease Control and Prevention (CDC) reported the first cases of HIV-related
Pneumocystis carinii pneumonia (PCP) diagnosed in "5 young men, all active
homosexuals" (CDC, 1981, p. 1). Subsequently, the professional medical literature
began associating HIVIAIDS with homosexuality, more specifically with gay men. The
use of terms such as "homosexual hazards," "Gay-Related Immune Deficiency"
(GRID), "gay cancer," "gay bowel syndrome," and "Gay Compromise Syndrome"
effectively defined HIVIAIDS as a "gay disease" (Epstein, 1996, pp. 46-5 1). Such
references not only suggested that the virus was exclusively transmitted by gay men, but
also forged a firm link between AIDS and what was commonly referred to as "the gay
lifestyle." These associations became embedded in the social discourse surrounding
HIVIAIDS and did little to clarify its etiology. Since most early cases of AIDS were
diagnosed in gay and bisexual men, the mainstream media further shaped the
connections between AIDS and homosexuality by making generic references to
"homosexuals" without emphasizing important details about HIV transmission risk
behaviors. Consequently, early in the AIDS epidemic the presumption was that that all
homosexuals were somehow carriers of HIV regardless of their risk behavior
(Hamilton, 1988). As Devine, Plant and Harrison (1999) point out, since the beginning
of the HIVIAIDS epidemic in the US, "there has been a general inability among
heterosexuals to separate the disease from gay men" (p. 12 16).
By assigning risk to specific population groups (gay men, Haitian immigrants,
and heroin users) rather than focusing on risk behaviors (unprotected anal or vaginal
intercourse, sharing injection drug paraphernalia), the public was tacitly encouraged to
think about HIVIAIDS in terms of population risk groups rather than in terms of
specific risk behaviors. To illustrate, when Merek and Capitanio (1999) asked
respondents to rate the likelihood of AIDS transmission between two HIV-negative
homosexual men who used condoms, nearly one fourth (24.6%) said it was likely that it
could occur. When the scenario was changed to two HIV-negative homosexual men
who had sex without condoms, slightly more than 4 in 10 (45%) thought that a man
could "get AIDS through sex with an uninfected man" (p. 1 137-8). Despite the fact that,
by the end of 1982, the CDC had documented several cases of transfusion-related HIV
and injection drug-related AIDS, gay men became "equated with the emergent
epidemic-it
came to constitute part of their social identity" (Epstein, 1996, p. 53).
Over time, the link between gay men and HIVIAIDS has remained firm. As
HIVIAIDS evolved in the US, beginning with the first five cases of PCP diagnosed in
1981, men who have sex with men (MSM) have continued to represent the largest HIV
transmission risk group of PWHAs. Despite substantial declines in the number of AIDS
diagnoses since the mid 1990s, most clinical AIDS diagnoses still occur in men,
particularly MSM and male injection drug users (Karon, Fleming, Steketee, & DeCock,
2001). And as the epidemic enters its third decade, gay and bisexual men still account
for the majority of all HIV infections in the US (CDC, 2004). As a result of the link
between HIV/AIDS epidemiology and the pervasive negative cultural attitudes toward
AIDS and homosexuality, HIV-positive gay men have continued to be a highly
stigmatized group who bear the burden of stigma and discrimination in a number of
different forms and contexts. In addition, because much of the public differentiates
between those who are blameworthy and those who are the "innocent victims" of
HIV/AIDS (Herek & Capitanio, 1999), HIV-positive gay men are thought to be
responsible for having brought the disease of AIDS on themselves through deviant and
controllable behaviors, and as such, they are viewed as having gotten what they deserve.
Furthermore, because HIV-positive gay men are perceived to be the group responsible
for starting and perpetuating the AIDS epidemic, they continue to serve as the hook on
which to hang blame for it.
Given that HIV-positive gay men are so highly stigmatized, there is a continuing
need for research that specifically addresses the impact of stigma on their health and
well-being. This study explores how HIV-positive gay men cope with the burden of
stigma and further explicates the ways in which stigma impacts their self-care decisions
and behaviors. By adding to the small body of research in this area, the current study
will enable health care and social service providers to better address both the physical
and mental health needs of this population.
Stigma and the US Health Care Svstem
Like most persons with chronic medical conditions, PWHAs rely on the healthcare system for treatment, health advice, secondary prevention interventions, and
support. In some cases, however, health care providers make negative judgments about
sexual minority patients and perpetuate stigmatizing views of homosexuality, both of
which can be a barrier to providing unbiased, culturally competent care to gay PWHAs.
For example, Preston, Forti, Kassab, and Koch (2000) examined rural nurses'
willingness to care for PWHAs. While the majority of nurses (8 1.5%) indicated a
willingness to care for PWHAs, 39.4% of the participants felt that male homosexuality
was 'obscene' and 'vulgar,' and only 26% felt that "homosexual men were a viable part
of society" (p. 73). In a comparable study, Eliason and Raheim (2000) found that, in a
group of nursing students (n = 196), about one-third (35%) reported that they would be
uncomfortable working with gay men, and slightly less than half indicated discomfort
working with lesbians (44%), and bisexual patients (43%). The two most common
reasons given for feeling uncomfortable with these groups were "disapproval" and
"negative attitudes" toward gay, lesbian and bisexual people. In their analysis of the
students' written comments, the researchers additionally found that "disapproval of
sexual orientation" and "feeling threatened were the two most significant factors in
students' discomfort (p. 163). As noted previously, Hunter and Ross (1991) reported
that health care professionals described PWHAs who became HIV-infected via sexual
activity or injection drug use as more culpable, more blameworthy, and having less
moral integrity than those infected by other transmission risks.
In a survey of members of the Gay and Lesbian Medical Association (GLMA),
Schatz and O'Hanlan (1994) found that 67% of the 71 1 the respondents knew gay,
lesbian or bisexual patients who had received substandard health care as a result of their
sexual orientation; 52% had observed their medical colleagues denying care or
providing substandard care to gay, lesbian, and bisexual patients because of the
patient's sexual orientation; and 88% had heard medical professionals make disparaging
remarks about gay, lesbian or bisexual patients. The following were among the
comments reported by the respondents: "We're going to operate on the dyke now"
(from a surgeon). "I've gotten used to Blacks and Jews, but I can't get used to the
homos" (from a medical faculty member). "Serves them right" (from a physician
referring to HIV-positive gay men) (p. 14). Additionally, more than half (59%) of
GLMA members surveyed reported that they had personally suffered from ostracism
and discrimination from the medical profession as a direct result of their sexual
orientation (i.e., being gay, lesbian, or bisexual).
While social acceptance of sexual minority persons may appear to have increased
in recent years, suspicions of anti-gay bias and negative attitudes within the health care
system persist. As a result, HIV-positive gay men may avoid or delay seeking health
care services because they perceive that heterosexism, stigmatization and discrimination
exist within the health care system (Chesney & Smith, 1999; Dean et al., 2000; Herek,
1999). For example, Schuster et al. (2005) found that twenty-six percent of HIVpositive adults receiving health care reported perceived discrimination by health care
providers after becoming infected with HIV. The men who reported sex with men as the
route of transmission were more likely than other risk groups to report discrimination.
On this point, Ungvarski and Grossman (1998) have argued that, due to the fear of
being stigmatized by health care providers, the most significant health risk for both gay
men and lesbians in the US is the avoidance of health care services.
Stigma and Public Health
The avoidance of health care interventions by PWfIAs raises a number of public
health concerns. The CDC (2003a) reports that approximately 25% of the estimated
850,000 to 950,000 persons infected with HIV in the US are unaware that they are HIVpositive. Because of HIVIAIDS stigma, HIV-positive gay men who are unaware of their
serostatus may disregard secondary prevention messages and delay seeking HIV
antibody testing (CDC, 2003a, 2003b; Chesney & Smith, 1999; fIerek, 1999; Stall et
al., 1996). It is also noteworthy that in the US an estimated 41% of newly diagnosed
HIV-positive persons receive an AIDS diagnosis within one year of learning their HIVpositive serostatus (CDC, 2003a), indicating that they have been infected with HIV for
a number of years before getting tested for HIV antibodies. This may have particular
relevance for gay men. For example, in a group of 223 newly diagnosed PWHAs,
Hutchinson et al. (1 991) found that the participants who identified sex with other men
(MSM) as their primary HIV risk factor (29% of the total) were more likely to have
lower CD4 counts than those who identified other transmission risks. Two patients in
this group met the clinical criteria for an AIDS diagnosis, and both were MSM. Hull
and colleagues (1988) also noted that MSM who refused voluntary, anonymous HIVantibody testing in an STD clinic setting were 7.3 times more likely to be HIVseropositive than were their non-MSM counterparts who accepted testing. These data
suggest that a significant number of undiagnosed but at-risk PWHAs may delay seeking
health care services until their HIV disease is fairly advanced. With 40,000 new HIV
infections occurring each year in the US, it would appear that stigma-associated delays
in seeking and participating in health care interventions and services continue to kindle
the HIV epidemic. This further reinforces the need for research that specifically
examines the role of stigma on the self-care behaviors of HIV-positive gay men.
In response to the steady incidence of new HIV infections in the US during the
last ten years, the CDC (2003b) recently issued specific recommendations for
incorporating evidence-based HIV secondary prevention strategies into the medical care
of all HIV-positive patients. However, it is important to recognize that, because of
stigma, some PWHAs may be tenuously engaged in health care or not engaged at all.
As a result, these persons are less likely to benefit from HIVIAIDS treatment
interventions, including prophylaxis or treatment for opportunistic infections,
antiretroviral therapy, and secondary prevention. For example, in a group of
gaylbisexual men who were aware of their HIV-positive status (n = 107), Stall and
colleagues (1 996) found that 22% did not have a health care provider, 28% had not
discussed their HIV-positive serostatus with their current health care provider, and 13%
had not had a CD4 count measured within the previous 12 months. It is well known that
suboptimal treatment of HIV-disease significantly increases risk for negative health
sequelae, and that less than 95% adherence to antiretroviral therapy increases the risk
for developing drug-resistant virus.
Secondary prevention counseling is also crucial because a significant number of
PWHAs, including HIV-positive gay men, continue to engage in sexual intercourse
without disclosing their serostatus to sex partners (CDC, 2004; Ciccarone, et al., 2003;
Kalichman & Nachimson, 1999). Moreover, untreated or under-treated PWHAs with
high HIV viral loads are more infectious to others (Quinn, et al., 2000).
Perceptions of stigma coming from within the health care system may also play a
role in PWHAs' decisions to engage in sexual risk behaviors. In a study with rural
MSM (n = 93), Preston et al. (2004) showed that men who perceived that health care
providers were intolerant or unsupportive of their gay identity were more likely to
participate in higher-risk sexual behavior. On the other hand, PWHAs who are engaged
in health care and have trusting and nonjudgmental relationships with their health care
providers are more likely to be adherent to medication regimens, more likely to keep
their medical appointments, and more inclined to follow the health advice offered by
their providers (Bakken, et al., 2000; Roberts, 2002; Stall, et al. 1996; Stone et al.,
1998).
Clearly the health care system can be a source of both HIVIAIDS-related and gayrelated stigma, with far-reaching implications not only for the health and well-being of
HIV-positive gay men, but also for at-risk HIV-negative persons. When stigma is
perceived to come from those who provide important healthcare services for PWHAs,
HIV-positive gay men will likely become mistrustful and feel additional stress. As a
result, they may disengage from all or some of the services and interventions that are
health sustaining, and ignore advice that promotes self-care.
Sociocultural Implications of HIVIAIDS Stigma
Examining stigma through a sociocultural lens further helps our understanding of
its impact on the lives of stigmatized groups. As Goffman (1963) noted, stigma
provides a society or culture with a mechanism for favoring one group over another by
distinguishing those with the negative attributes from "normals." As a result, the
differences that favor the so-called "normal group" are emphasized in an effort to
protect their identity as untainted, non-deviant and healthy, thus creating an "us" and
"them" dichotomy (Devine, Plant, & Harrison, 1999). In the case of HIVIAIDS, this
separation not only discredits and stereotypes the social out-group based on several
negative traits, but also provides those in the favored in-group with a justification for
separating the non-deviant and uninfected people (us) from the deviant and infected
people (them). Furthermore, the boundary allows uninfected persons to erroneously
presume immunity from HIV infection by disavowing membership in the stigmatized
group, thereby preserving and protecting in-group status and reinforcing out-group
status (Link & Phelan, 2001). As a result of this sociocultural separation, HIV-positive
gay men are relegated to a lower placement in the social hierarchy-once
for their
membership in the group of those who carry and spread "the gay disease," and again for
their membership in the group of "immoral characters" (drug abusers and sexual
deviants). This us-versus-them dichotomy was clearly articulated in one of the earliest
announcements about the AIDS epidemic in 1984, when Margaret Heckler, the
Secretary of Health and Human Services, proclaimed, "We must conquer AIDS before
it affects the heterosexual population and the general population" (Shilts, 1987, p. 554).
The subtext of Heckler's message is that HIV-positive gay men exist outside of the
general population and represent a serious threat to it. In other words, AIDS must be
stopped before "they" infect "us."
Parker and Aggleton (2003) argue that stigma evolves in the context of culture
and power and serves to produce and perpetuate negatively valued differences, which
are "central to the establishment and maintenance of the social order" (p. 17). In this
context, stigma serves an important social purpose by promoting or privileging the
intere,sts of the dominant in-group and legitimizing the social inequalities of the outgroup. Ironically, because groups that are heavily stigmatized often accept or internalize
the cultural messages to which they are subjected, their oppression is taken for granted
by group members. In other words, oppression and subjugation feels "normal" to group
members, and as a result their efforts to oppose the forces of stigma are further
restricted. As Parker and Aggleton have noted:
Precisely because they are subjected to an overwhelmingly powerful symbolic
apparatus whose function it is to legitimize inequalities of power based upon
differential understandings of value and worth, the ability of oppressed,
marginalized and stigmatized individuals or groups to resist the forces that
discriminate against them is limited (p. 18).
Consequently, HIV-positive gay men are destined to be disempowered, marginalized,
silenced and "kept in their place" via multiple stigma pathways which represent a
complex interplay of sociocultural forces that shape self-perception, influence coping
behaviors, and impact health outcomes.
Much of the available research on stigma demonstrates that it has real potential to
negatively affect the health and overall well-being of HIV-positive gay men. As prime
stigma targets, these men incur the risk of physical violence and discrimination,
increased stress, lower self-esteem, more ineffective coping, stigma-related health care
barriers, and a poorer health prognosis. Additionally, HIV-positive gay men are still
viewed by many as social outcasts who have gotten what they deserve. While research
is clearly needed to further understand the origins of stigma and find ways to reduce it,
studies that focus on understanding how HIV-positive gay men cope with the negative
forces of stigma is of great importance to health care providers. To date very few
studies have specifically examined how stigma influences the self-care behaviors of
HIV-positive gay men.
The Burden of Stigma for HIV-Positive Gay Men
In the US, gay men must find ways to manage the consequences of living in a
heterocentric and largely homophobic environment where discrimination, harassment,
negative implications of disclosed sexual orientation, and threats of bias-based physical
violence are not rare events. In addition to the stigma related to homosexuality, HIVpositive gay men must adapt to the stigma associated with being HIV seropositive, a
chronic medical condition marked by two decades of misunderstanding and AIDS
phobia. Prevailing social conditions, deeply embedded cultural beliefs, and erroneous
assumptions about their lifestyles and behaviors are likely to have an impact on the
health of sexual minority populations in a number of ways, the most obvious of which
are physical violence, harassment, social/family conflicts, legal barriers, and reduced
access to health care services (Bonvicini & Perlin, 2003; Dean et al., 2000; Harrison,
1996; Harrison & Silenzio, 1996).
Like members of other minority groups, gay men are subjected to chronic stress
as a result of stigmatization and discrimination, a concept that Meyer (1995) has termed
minority stress (p. 38). Minority stress is "the juxtaposition of minority and dominant
values and the resultant conflict with the social environment experienced by minority
group members" (p. 39). In other words, minority stress results from the conflict or
incongruity between the dominant social structures and the minority person's
experiences and needs. Because they are socialized with the same prevailing antihomosexual biases that are sanctioned in most Western societies, sexual minority
persons (gay men, lesbians, and bisexual persons) internalize the same negative
attitudes and stigmatizing attributions assigned to them by the dominant culture. Thus
the internalization of HIVIAIDS stigma and homophobia is incorporated into their selfimage (DiPlacido, 1998; Meyer, 2003).
Research has shown that gay-related minority stress factors, discrimination,
stigmatization, and the internalization of homophobia strongly correlate with mental
health problems, such as depression, anxiety, suicidal ideation, and substance use
disorders (DiPlacido, 1998; Lewis, Derlega, Griffin, & Krowinski; 2003; Mays &
Cochran, 2001 ; Meyer, 2003; Williamson, 2000). To illustrate, Meyer (1995) examined
the effects of three minority stress measures-internalized
gay-related prejudice events-on
homophobia, stigma, and
five psychological variables in a sample of 741 gay
men. Regression analyses showed that the three minority stressors predicted two- to
three-fold increases in psychological distress as measured by feelings of guilt,
demoralization, AIDS traumatic stress response, feelings of suicidality, and sexual
dysfunction.
In a similar vein, Herek, Coogan, Gillis and Glunt (1 998) evaluated the
relationship of internalized homophobia (IHP) to measures of psychological well-being,
identity integration, and community perceptions in a sample consisting of 73 gay men
and 74 lesbians. Their results showed that the gay men had significantly higher IHP
scores than the women (p < 0.001). To the extent that the men had higher IHP scores,
they reported more symptoms of depression (p < 0.05), more demoralization ( p < 0.01)
and lower self-esteem (p < 0.01). Higher IHP scores were also associated with less
openness about sexual orientation and less sense of belonging within the gay/lesbian
community. Gender differences indicated that gay men may experience IHP to a greater
extent than lesbians, and that IHP may be more closely tied to self-esteem for gay men.
Some research has demonstrated that chronic stress, coupled with common
responses to HIV/AIDS stigma, such as denial, depression, ineffective coping, and
diminished social support, are associated with faster progression to AIDS. In a
prospective study, Lesserman and colleagues (1999,2000) followed a cohort of 82
asymptomatic HIV-positive gay men without AIDS for a period of 7.5 years to
determine the effects of stress, coping style, depressive symptoms, and levels of social
support on the progression of HIV infection. Their data showed that the probability of
progressing to AIDS increased significantly for men who experienced greater
cumulative stressful life events, used denial as a coping mechanism, and had decreased
social support.
In addition to the stigma associated with seropositivity, HIV-positive gay men
also incur a significant stigma burden for having contracted HIV by breaching sexual
taboos-being
perceived as promiscuous, or because of deviant sexual practices such as
anal intercourse. Not surprisingly, the continuous management of such stigmatizing
information and the self-imposed shame and secrecy engendered by an undisclosed
homosexual identity may lead to untoward HIV-disease sequelae. As an example,
Ullrich, Lutgendorf and Stapleton (2003) examined the relationship between disclosure
of homosexual identity and CD4 counts in 73 HIV-positive gay and bisexual men. After
controlling for demographics and covariables, the researchers demonstrated a
significant negative association between concealment of homosexual identity and lower
CD4 counts ( p < .05). Concealment of homosexual identity was also related to more
symptoms of depression, and greater social constraints (i.e., degree to which PWHAs
felt that their relationships were strained and that they were inhibited from discussing
HIV-related stressors). Similarly, Cole, Kemeny, Taylor, Visscher, and Fahey (1 996)
found that HIV advanced more rapidly in HIV-positive gay men who concealed their
homosexual identity in comparison to gay men who were more open about their
homosexual (gay) identity. They noted that as degrees of disclosure increased, the
amount of time to reach critically low CD4 counts and AIDS-related mortality declined
significantly.
These studies highlight the burden of stigma on both the physical and emotional
well-being of HIV-positive gay men, and support the need for research that identifies
and explains the ways in which stigma affects how HIV-positive gay men take care of
themselves. The current study addresses a key aspect of managing the stigma burden for
HIV-positive gay men by providing a theoretical perspective on how it affects their selfcare.
The Aim of the Studv
Given the deeply embedded and pervasive nature of HIVIAIDS stigma coupled
with the stigma associated with homosexual behavior, it is not surprising that HIVpositive gay men are the prime targets of negative attitudes, prejudice, intolerance and
discrimination. That HIV-positive gay men internalize these negative attributions adds
yet another level of shame, further shaping their social identity as devalued and
discounted persons. It is clear that HIVIAIDS stigma exerts a considerable impact on
the physical and mental health of HIV-positive gay men, in part by its influence on a
number of health-related decisions and behaviors, including disclosure of HIV-positive
status to sex partners, engagement with health care providers, and significant others;
seeking social support; using positive or negative coping mechanisms; and adherence to
primary and secondary health care interventions. Additionally, HIVIAIDS stigma
contributes to significant delays in HIV antibody testing among high-risk persons,
which often results in advanced disease sequelae and/or an AIDS diagnosis at the time
they first learn of their HIV-positive serostatus.
Despite the serious consequences of HIVIAIDS stigma on the lives of HIVpositive gay men, research in this area has been limited. Most of the published research
on this topic in the last twenty years has focused on the attitudes of uninfected persons
toward PWHAs, the role of stigma in HIVIAIDS-related laws and health care policies,
interventions to increase tolerance, and understanding why HIVIAIDS is so highly
stigmatized (Burris, 1999; Herek, 1999; Lee, Kochman, & Sikkema, 2002; Malcolm, et
al., 1998; Parker & Aggleton, 2003). Notably, a much smaller body of literature has
examined the role that stigma plays in the lives of PWHAs, how they cope with stigma,
and the impact of stigma on their health, quality of life, and self-care behaviors. To
date, few studies have specifically examined how the complex forces of HIVIAIDSrelated stigma influence the self-care behaviors of HIV-positive gay men. In 1998, the
National Institute of Mental Health outlined a research agenda that identified the need
for research that documents the significance of HIVIAIDS stigma on PWHAs, including
its impact on their psychological well being, HIV disease progression, and personal
decisions related to health (Herek, et al., 1998). The aim of this dissertation was to
address part of that need by examining how HIV-positive gay men cope with stigma,
and more specifically, to provide a theoretical explanation of the impact of stigma on
their self-care decisions and behaviors. Grounded theory was the methodology used to
investigate this topic.
Given that stigma is so pervasive and because it results in a number of untoward
health consequences, a number of key questions helped to focus on the research topic,
(i.e., how does stigma affect the self-care behaviors of HIV-positive gay men?). To that
end, the study's participants were asked to respond to the following interview questions:
To what extent do HIV-positive gay men feel stigmatized by being gay and by being
HIV-positive, and how do they describe the effects of stigma on their lives? How do
HIV-positive gay men cope with or manage the effects of stigma in their lives? And
finally, how does stigma influence their self-care decisions and self-care behaviors?
Chapter Summary
This chapter reviewed the nature and origins of HIVIAIDS-related stigma in the
US and provided the background for understanding the stigma concept as it pertains to
HIV-positive gay men. Research clearly shows that HIV-positive gay men have been
disproportionally affected by stigma, and that the forces of stigma have a negative
influence on their physical and emotional health. In addition, it has been shown that
HIV-positive gay men likely internalize many of the negative cultural messages
imposed on them by stigma, which further affects their health and shapes their social
identity as devalued and discounted persons. Moreover, because of the stigma
associated with HIVIAIDS and being gay, HIV-positive gay men may avoid or delay
seeking health care services, thus raising public health implications for controlling the
HIVIAIDS epidemic.
Given the burden of stigma on HIV-positive gay men, this chapter has further
highlighted the need for research that evaluates how stigma affects the mental and
physical health of this population. The aim of this grounded theory study was to
investigate how HIV-positive gay men manage the forces of stigma, and more
specifically, to examine the impact of stigma on their self-care decisions and behaviors.
Chapter 2
REVIEW OF THE LITERATURE
Introduction
This chapter will examine the available research on how PWHAs respond to
stigma, with particular emphasis on studies that focus on how stigma affects the health
and well-being of HIV-positive gay men. Research that examines the impact of
HIVIAIDS stigma on PWHAs comes from a variety of disciplines and includes
conceptual analyses, and both qualitative and quantitative studies-all
of which look at
the stigma concept from various perspectives. Some studies have focused specifically
on the impact of stigma on PWHAs. In other studies, stigma is not the main focus of the
research but rather emerges as a secondary but significant concept that is associated
with a number of health-related implications for PWHAs. While some studies have
been done with mixed populations, others have focused exclusively on groups of
women, ethnicIracia1 minorities, or gay and bisexual men. To date, only a few studies
have focused solely on the topic of how HIV-positive gay men manage the stigma
associated with HIVIAIDS. This chapter will identify a gap in the available literature
and further point to the need for a theoretical explanation of how HIV-positive gay men
come to make self-care decisions in response to the forces of stigma. The present study
investigates the impact of stigma on this important decision-making process for HIVpositive gay men through the development of a substantive theory that is grounded in
the data, thus adding a theoretical perspective to the available literature on this topic.
HIVIAIDS Stigma and the Illness Traiectow
Alonzo and Reyonlds (1995) provide an elegant conceptual analysis of HIVIAIDS
stigma, which serves as a useful backdrop for understanding its impact on PWHAs.
These authors suggest that the stigma of HIVIAIDS occurs as a trajectory, running
parallel with a biophysical continuum represented by four phases of HIV disease: "at
risk, diagnosis, latent and manifest" (p. 306). The disease course and the stigma
trajectory are intertwined, and unique stigma qualities emerge at each clinical stage of
the disease, requiring different stigma management strategies. For example, HIVnegative individuals who are at risk for becoming infected may use denial, or distance
themselves from HIV-positive PWHAs to avoid thinking about the possibility of
becoming HIV positive. In the second phase of the HIVIAIDS stigma trajectory,
"diagnosis," the primary process for the person is managing the meaning and
consequences of discovery or disclosure, and formation of identity as someone who is
HIV-positive. At this stage, the newly diagnosed person must decide when and where to
disclose his or her status and to whom. Phase three represents a "latent" period where
HIV disease may still be mostly asymptomatic and concealable, yet still "disruptive in
terms of internal feelings of anxiety and stress" (p. 308). In the latent period, PWHAs
must wrestle with issues of shame, self-blame, and "building an identity as a
stigmatized person despite opportunities for normalization" (p. 309). Selective
nondisclosure of status may be the defense against stigma during this period, resulting
in varying degrees of isolation and social interaction, deciding if and when to inform
sex partners, and wrestling with decisions to engage in health care. The final phase,
"manifest," represents a clinically symptomatic period where the disease and stigma
trajectories converge. Here the illness becomes more difficult to ignore and symptoms
may be harder to conceal. In this period, the person must simultaneously manage
physical decline and defend against the stigmata, i.e., wearing the mark.
While Alonzo and Reynolds' (1 995) conceptual model may not account for all the
implications and variations of stigma experienced by HIV-positive gay men, it
represents an important and practical construct for understanding the HIVIAIDS stigma
concept across the continuum of illness. Moreover, it helps to explain how responses to
stigma might be influenced by physical manifestations of the disease, particularly for
HIV-positive gay men. For example, Kowalewski (1988) found that "at risk" HIVnegative gay men not only feared the possibility that they might become infected with
HIV, but also "that they might be forced to assume the social stigma of AIDS" (p. 223).
These HIV-negative gay men distanced themselves from HIV-positive gay men to
avoid the stigma associated with AIDS, thus creating an intergroup "us" versus "them"
dichotomy, and defended the boundary between HIV-positive and HIV-negative gay
men by taking the perspective of the stigmatizers. While Kowalewski's study
participants were all HIV-negative gay men, the perspective is an important one
because it highlights the possibility that HIV-negative gay men may be a source of
stigma for HIV-positive gay men who look to the gay community for information and
social support. As such, stigma coming from within the gay community may have a
significant influence on the self-care decisions of HIV-positive gay men.
Responses to Stigma
Research shows that responses to HIVIAIDS stigma by PWHAs are both
emotional and behavioral. Emotional responses include embarrassment, fear, shame,
anger, self-deprecation, and rejection. In some instances these emotional responses are.a
result of stigma-related stress andlor internalized stigma. Behavioral responses mostly
include the struggle between concealment versus disclosure of stigmatizing information,
seeking versus avoiding social support and health care services, and engaging in versus
avoiding strategies to cope with effects of stigma. The most common behavioral
responses to HIVIAIDS stigma described in the extant literature are those used to avoid
disclosure of HIV-positive status.
Concealment of HIV-positive status requires continuous management of
information in numerous social situations and contexts. As such, persons with
stigmatizing secrets continually evaluate how others might respond should they decide
to disclose. Limandri (1 989) referred to this as "an economy of disclosure" (p. 75),
whereby the stigmatized person evaluates the costs and benefits of disclosure. Goffman
(1963) also noted that when the discrediting trait is not readily obvious, the stigmatized
person must continually decide whether "to display or not to display; to tell or not to
tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when,
and where" (p. 42). As expected, the constant vigilance required to be always on guard
is both physically and emotionally demanding.
Stigma and HIV-Positive Gay Men
In one of the earliest studies on HIVIAIDS stigma, Weitz (1990) found that nearly
all the HIV-positive gay men in her qualitative analysis (n = 23) engaged in strategies to
hide their illness in some way. Many used selective disclosure, revealing their HIV
status to others only when they felt safe or that the effects of stigma would be minimal.
Some men explained their illness by attributing it to less stigmatizing conditions such as
cancer or leukemia. Others hid their HIV medications, isolated themselves when the
symptoms of HIVIAIDS were obvious, wore special clothing, or used makeup to hide
telltale signs of illness. Participants identified five sources of HIVIAIDS stigma: family,
friends, lovers (i.e., intimate partners), health care workers, and people from their
employment settings. A few of the men said that they found comfort from participation
in support groups and other social events for PWHAs. Similar themes emerged in a
qualitative study conducted by Bennett (1 990) during the same time period. Ten gay
men with AIDS described experiences of rejection from family, friends, roommates,
employers, and strangers. Behavioral responses to stigmatization included avoiding
public appearances, covering up physical manifestations of illness with extra clothing,
not wearing shorts, not going swimming, and not revealing the entire truth about their
AIDS diagnosis. Participants also made efforts to limit "associations with fellow
outcasts" (p. 151), to avoid stigma by association, or "tribal stigma" as described by
Goffman (1963). In contrast to the men in Weitz's (1990) study, these men reported
more experiences of support from intimate partners, close friends, and some family
members, many of whom encouraged the men to engage in self-care behaviors. Several
men also reported turning the anger they felt toward stigmatizers into "vehicles for selfaffirmation" (p. 149), representing a more health-promoting response to stigma. While
these studies provide an important contribution to the early literature on how HIVpositive gay men respond to stigma, they are largely descriptive and do not address the
theoretical question of how stigma affects the self-care behaviors of this population.
In a study examining how gay men adapt to the challenges of HIVIAIDS as a
chronic illness, Siege1 and Krauss (1991) found that many of the HIV-positive gay men
in their qualitative study (n = 55) had internalized the stigma associated with
HIVIAIDS. These men often stated that they felt "devalued" or "ashamed" (p. 23). They
alsa assumed that others, including other gay men, would devalue and reject them
because of their HIV-positive status. Some men saw themselves as carriers of a "dirty
disease" in comparison to other chronic conditions like diabetes or cancer, which they
viewed as "clean diseases." Interestingly, the men in this study who experienced HIVrelated symptoms reported more feelings of 'shame and contamination' (p. 23) than the
asymptomatic men-representing
a transition point with regard to how symptomatic
men saw themselves in relation to the illness. The findings of this study suggest that the
internalization of stigma may be more significant during the "manifest" period
described by Alonzo and Reynolds (1995), when managing HIVIAIDS stigma is driven
by physical changes that are more difficult to conceal or ignore. During this phase of the
illness the "stigmatic AIDS identity" (p. 31 1) becomes more prominent as a result of
clinical manifestations. While this study highlights the relationship between illness
manifestations and internalization of stigma it does not answer the question of how
stigma plays a role in self-care.
Not surprisingly, HIV-positive gay men may respond to the stigma associated
with being HIV-positive in the same way they manage the stigma associated with being
gay. Because non gay-identified homosexual men can pass as heterosexuals, the option
to hide ("in the closet") is a viable choice for some men. Goffman (1963) distinguishes
between being a "discreditable" person whose differentness is not readily apparent
versus being a "discredited person whose stigmatizing traits are known. In a qualitative
analysis conducted by Lewis (1999), several HIV-positive gay men referred to the "HIV
closet" as their metaphor for concealment of HIV status (p. 105). Again, most of the
participants worried about reaching a point in their illness when they had visible
manifestations of HIV or AIDS and could no longer hide-the
phase described by
Alonzo and Reynolds (1995) as "manifest." Similar to the men in Weitz's (1990) study,
some men isolated themselves from others as their disease became more apparent.
Herek (1999) suggests that for many HIV-positive gay men, the disclosure of HIV
status is "a second coming out" (p. 601). To take the comparison further, reaching the
"manifest" phase would be tantamount to being outed by the illness. This further begs
the question of how self-care is affected when the stigmatizing traits become visible and
the person's option to hide is encumbered.
For HIV-positive gay men, the stigma associated with HIVIAIDS and
homosexuality requires continuous information management for two discrediting traits.
Given the particularly stressful nature of stigma management, a number of studies have
focused on the relationship between HIVIAIDS stigma, mental/emotional health,
socialization, and coping. For example, in a convenience sample of 3 18 HIV-positive
adults, 72% of whom were MSM, Berger, Ferrans and Lashley (2001) found that levels
of self-esteem and social support were negatively correlated with total HIV stigma
scores, and both depression and social conflict scores were positively related (all p <
.001). Their study demonstrated that HIVIAIDS stigma is positively related to a number
of untoward consequences, such as depression, negative self-concept, perceived lack of
social support, and poor social integration. While this study highlighted the relationship
between self-perception of stigma and negative health consequences, its main focus was
on instrument development. Therefore it did not specifically address the influence of
stigma on the self-care behaviors of HIV-positive gay men.
In their study with a mixed population of 268 HIV-positive adults, Lee, Kochrnan,
and Sikkema (2002) examined the impact of internalized HIV stigma (IHS) to
determine its relationship to depression, anxiety and hopelessness. Fifty-four percent of
the participants in this study self-identified as gay, lesbian, bisexual or transgender.
Results showed that a significant majority of the participants indicated feeling some
degree of embarrassment from having HIV (63%) and found it hard to tell others about
their infection (74%). Participants with high IHS scores reported that their families were
less accepting of their HIV illness (p = .046), had greater severity of HIV-related
physical symptoms (p = .001), and were less likely to attend an HIVIAIDS support
group (p = .013). Regression analysis revealed that IHS scores significantly predicted
depression (p = .003), anxiety (p = .03), and hopelessness (p = .004). Correlations
between high IHS scores and additional psychological indices (i.e., measures of grief,
coping, social support, depression, and hopelessness) showed that internalized HIV
stigma negatively correlated with perceived social support and positive-action coping,
and positively correlated with passive problem solving, level of grief, self-destructive
escape coping, and spiritual hope coping. These data indicate that greater perceived
stigma and internalized HIVIAIDS stigma increases risk for ineffective coping,
depression, maintaining secrecy, and low levels of social support-all
of which have
been shown to influence PWHAs' treatment adherence decisions (Holzemer et al.,
1999; Malcolm, Ng, Rosen, & Stone, 2003; Singh et al., 1999). Notably, other related
research suggests that the degree to which gay men feel stigmatized, as evidenced by
measures of low self-esteem and internalized homophobia, may predict high-risk sexual
behavior, specifically receptive anal intercourse, inconsistent condom use, and multiple
sexual partners (Meyer & Dean, 1998; Preston et al., 2004). While this research
underscores the important relationship between stigma and untoward health sequelae, it
does not specifically address the question of how the self-care behaviors of HIVpositive gay men are influenced by stigma.
Taken together, these studies provide important examples of how HIV-positive
gay men typically respond to HIVIAIDS stigma. Feelings of shame, contamination, and
being devalued are common emotional responses. Concealment of HIV-positive status
and hiding visible manifestations of the illness are the most common behavioral
responses. While these studies represent a significant contribution to the body of
literature on this topic, they are mostly descriptive and offer little if any theoretical
explanation of how HIV-positive gay men come to make self-care decisions in response
to the forces of stigma. As such, this research provides only part of the answer to the
question of how stigma affects self-care, pointing to a gap in the extant literature. There
is a need for additional research that explores the stigma concept from a theoretical
perspective by examining how stigma influences the self-care decisions and behaviors
of HIV-positive gay men.
Stigma as a Barrier to Health Care
A few studies in the literature have shown that PWHAs may avoid seeking health
care services as a direct result of HIVIAIDS stigma. For example, Reece (2003)
conducted a prospective study to look at correlates of dropout rates for HIV-positive
patients with mental illness (n = 132) and found that the level of HIV-related stigma
was considerably higher among those patients who had dropped out of care. This study
was done with a mixed population of HIV-positive men (68%) and women (42%).
Results showed that the mean HIV-related stigma score for the dropouts was
significantly higher (33.2 1) -thanthe mean HIV-related stigma score of those who
returned for care (19.23) ( p
=
0.000). Interestingly, the PWHAs who did not return for
care had lower CD4 counts than those who returned, which significantly increases their
risk for untoward HIV-related sequelae, including faster progression to AIDS. While
the results of this study showed that more men (61.9%) dropped out of care than women
(38.1%), the sexual orientation of the participants was not identified in the demographic
data and was therefore not analyzed. As such, the role of stigma on the dropout rates for
HIV-positive gay men in this study was not examined.
Reece's (2003) findings were corroborated by Carr and Gramling (2004), who
examined the role of stigma as a health barrier for HIV-positive women. These
researchers found that maintaining the secrecy of HIV status was not only a significant
source of stress, but that concealment of HIV status was a barrier to health-seeking
behaviors because of negative reactions from providers and fear of rejection. The
women in this study reported that health care providers often reacted to their HIVIAIDS
diagnosis "with disgust, distain, and fear" (p. 34), and that the risk of disclosing their
HIV status to health care providers was "greater than the sacrifices of not telling" (p.
37). While this study further highlighted the role of HIV-related stigma as a barrier to
health care, it focused on HIV-positive women and not HIV-positive gay men
In contrast to the results shown above by Reece (2003) and Carr and Gramling
(2004), a study done by Crandall and Coleman (1 992) showed that participants' AIDS
stigma scores did not significantly correlate with health care satisfaction. Very few of
the PWHAs in their study (n = 48) felt alienated from health care providers. The mean
score was 6.3 1 on a seven-point Likert scale used to measure satisfaction with doctors,
nurses and other providers of health care services, indicating relatively high degree of
satisfaction with health care. While these studies point to the potential role of stigma as
a barrier to health care, the results are equivocal. Moreover, they do not focus
specifically on the impact of stigma on the self-care behaviors of HIV-positive gay men,
further highlighting the gap in the available literature on this topic.
Stigma Management
There was only one study found in the literature on HIVIAIDS stigma that
specifically examined the stigma management strategies of HIV-positive gay and
bisexual men. In this important study, Siegel, Lune and Meyer (1 998), showed that
PWHAs' stigma responses are not always deleterious. Their qualitative study with 139
participants revealed that the stigma management strategies of these men lay across a
continuum of "adaptational tasks" (p. 7) ranging from reactive to proactive. Reactive
strategies were those that were used to avoid or minimize the negative effects of stigma,
the most common of which was concealment or selective disclosure of HIV-positive
status. Other reactive strategies included attributing the HIV transmission risk to more
socially acceptable sources (e.g., blood transfusion) in order to assert "innocent victim"
status or non-association with other HIV-infected individuals. Intermediate coping
strategies-between
the two ends of the continuum-included
gradual disclosure and
selective affiliation, which allowed for incremental revelation of HIV-positive status in
limited settings. Other intermediate strategies included "discrediting the discreditors"
(p. 16) by questioning their motives, interrogating those who held stigmatizing views,
and challenging the attributions of immorality. Proactive strategies were those that
challenged the meanings, values and power imbalances that result from HIVIAIDS
stigma, i.e., attempts to alter the discourse and promote positive views of PWHAs.
Proactive strategies also included preemptive disclosure, becoming involved in public
education, and social activism. As an example, during the first decade of the epidemic
in the US, proactive responses to HIVIAIDS stigma were represented by the grassroots
campaigns such as ACTUP (AIDS Coalition to Unleash Power) with its SILENCE =
DEATH motto, the NAMES Project (memorial quilt), and the Red Ribbon campaign.
These counter-stigma responses came from PWHAs who used proactive social activism
to resist the unfair labeling, disempowerment and discrimination associated with
HIVIAIDS (Gilmore & Somerville, 1994). This research suggests that stigma responses
may not always result in negative or untoward consequences, further supporting the
need to explore the stigma response concept thorough a theoretical lens.
Siegel, Lune and Meyer (1998) also noted that for some HIV-positive gay men
there were incremental transitions from reactive strategies (initial response to new HIVpositive diagnosis) to more intermediate or proactive strategies, particularly as they
gained more self-acceptance. Some men used both proactive and reactive strategies in
response to different settings. This is a key study in the research focusing on how HIVpositive gay and bisexual men respond to stigma because it highlights a continuum of
stigma-related responses and provides a useful way to classify stigma management
strategies. The findings also suggest that HIV-positive gay and bisexual men who adopt
proactive stigma coping strategies may be striving to achieve higher identity levels, and
men who use reactive stigma coping may be "willing to accept lower identity levels" (p.
21). While the results of Siegel, Lune and Meyer's analysis offer a glimpse at the
impact of stigma on the health care decisions of HIV-positive gay men, their study did
not directly address strategies or decisions that promote or impede adaptation to illness
or specific self-care decisions. It also did not offer a theoretical explanation of the
health-related (self-care) decision making process, which is the focus of the current
study.
Chapter Summary
The literature reviewed in this chapter shows that responses to HIVIAIDS stigma
by PWHAs are both emotional and behavioral. Common emotional responses to
HIVIAIDS stigma include internalization of negative attributes related to HIVIAIDS
and homosexuality, shame, fear, self-deprecation, and rejection. These responses may
be related to the degree of felt or internalized stigma or homophobia, and have been
positively correlated with a number of mental health sequelae, such as depression,
anxiety, and diminished self-concept. Research shows that the most common behavioral
response to HIVIAIDS stigma is concealment of HIV-positive status, and for some
HIV-positive gay men, concomitant concealment of homosexuality. Concealment
behaviors invariably influence the degree to which many PWHAs seek social support,
negotiate sexual risk behaviors, access health care interventions, socialize, and obtain
other needed services. The few studies specifically focusing on how HIV-positive gay
men manage stigma indicate that they respond in ways that may be health enhancing or
detrimental. Stigma responses can be represented by a continuum of "adaptational
tasks," ranging from reactive responses to more health-affirming proactive coping
strategies as outlined by Siegel, Lune and Meyer (1998). Responses to HIV/AIDS
stigma are also tied to an HIV disease trajectory as conceptualized by Alonzo and
Reynolds (1995), which links stigma responses to stages of illness. Men who are in the
"diagnosis," or "latent" phases have the best opportunity to maintain varying degrees of
secrecy, and as such may choose selective non-disclosure and selective engagement.
For example, an HIV-positive gay man with excellent adherence to antiretroviral
therapy and well-controlled HIV may selectively hide his serostatus from some people;
yet he is likely to be visibly engaged in health care and obviously committed to
treatment. He might choose not to disclose his HIV status to sex partners, but insist on
using a condom for every sex act. Another man, newly diagnosed with HIV might feel
"dirty" or "like a leper." He might gradually withdraw from all social interaction and
delay seeking health care services. When manifestations of HIV or AIDS are evident
(e.g., wasting, or body dysmorphic changes) and concealment is no longer an option,
the behavioral response to the stigmatizing trait may run the gamut from reclusion to
any number of proactive endeavors as described by Siegel, Lune, and Meyer (1998).
For example, a gay male PWHA with severe lypodystrophy from years of antiretroviral
treatment might avoid most social interactions because the stigmatizing trait is so
obviously linked to HIV disease. On the other hand, under the same circumstances
another man might decide to change his diet, join a health club and begin working out
in order to improve his appearance.
This review of the literature on how HIV-positive gay men cope with or manage
stigma has uncovered a need to explore and explain how the contextual conditions and
consequences of stigma influence their self-care decisions and behaviors. While the few
studies that describe how HIV-positive gay men respond to the forces of stigma, their
results are mostly descriptive, and they offer little if any theoretical explanation of how
HIV-positive gay men come to make self-care decisions in response to the forces of
stigma. This gap in the literature is addressed in this grounded theory analysis. The
present study investigates the impact of stigma on this important decision-making
process for HIV-positive gay men through the development of a substantive theory that
is grounded in the data, thus adding a theoretical perspective to the available literature
on this topic. In the following chapter, grounded theory methodology is reviewed and
the study's design and specific research methods are outlined and explained.
Chapter 3
METHODOLOGY AND STUDY DESIGN
Introduction
For this study, grounded theory was the methodology used to answer the main
research question: What is the impact of stigma on the self-care behaviors of HIVpositive gay men? The first part of this chapter describes grounded theory methodology;
the specific research methods used; validity, objectivity, and reliability in qualitative
inquiry; and the process of data collection, coding, and analysis. Data for this study
were collected through oral interviews with 20 HIV-positive gay men, and then
analyzed using methods outlined by Strauss and Corbin (1 998). Using constant
comparison of the properties and dimensions identified in the transcripts, the data were
analyzed and coded. Theoretical concepts were generated that ultimately led to a
grounded theory.
The second part of this chapter describes the participant population, recruitment
methods, and how confidentiality and human subjects protections were assured. In the
final sections, the specific techniques used by the researcher for minimizing bias and
assuring trustworthiness and credibility of the findings are discussed.
Using Grounded Theory
The selection of research methodologies is based on ontological and
epistemological underpinnings and appropriateness of fit for addressing research
problems and questions. Positivist or quantitative perspectives attempt to capture,
measure, and validate "the truth" about a problem from an objective, deductive process.
Alternatively, qualitative inquiry assumes that no one truth exists, but rather endeavors
to interpret or make sense of experiences or phenomena inductively, based on the
meanings that human beings bring to a given context (Denzin & Lincoln, 2000).
Research questions that invite explanation, exploration, discovery, or description are
best approached using qualitative designs (Creswell, 1998).
The review of the available literature on how HIV-positive gay men cope with
or manage stigma uncovered a need to explore and explain how the contextual
conditions and consequences of stigma influenced their self-care decisions and
behaviors. As such, a qualitative approach offered insight, understanding, implications
for clinical practice, and suggestions for future research. Schreiber and Stern (2001)
point out that as a research methodology, grounded theory "was designed to reveal the
human characteristic of change in response to (or anticipation of) various life
circumstances" and is often "the method of choice" for studying how people cope with
real or potential health problems (p. xvii). For the purpose of this study, grounded
theory afforded a suitable and appropriate qualitative approach by examining the shared
basic social problem of stigma from the participants' perspective, and by offering a
theoretical explanation of their responses to stigma.
Grounded Theory Methodolow
Grounded theory is an inductive, problem-focused qualitative methodology that
generates an explanation (i.e., theory) about the phenomenon or problem under study.
The product or end point of a grounded theory study is the development of a substantive
theory that is "grounded" in the data. The primary instrument for data collection and
analysis is the researcher, who does not begin the study from a position of existing
theory, a hypothesis, or predefined concepts; rather, the researcher collects, codes, and
analyzes data obtained from the participants in order to forge a core concept or central
category, from which a grounded theory evolves (Hutchinson & Wilson, 2001; Strauss
& Corbin, 1998). As such, grounded theory explains relevant social processes and the
major behavioral variations of the participants. For nurses and their patients, grounded
theory offers a way to understand meaning and human experience across the wellnessillness spectrum. Hutchinson and Wilson (2001) state that, "A quality theory.. .will
explain the major behavioral and interactional variations of the substantive area [and.]
predict what will happen under certain conditions and given certain variables" (p. 234).
Situating Grounded Theory
Some qualitative researchers, particularly advocates of postmodern and poststructural approaches, have criticized grounded theory because of its post-positivist
underpinnings. In their seminal work, The Discovery of Grounded Theory, Glaser and
Strauss (1967) suggested a rather objectivist epistemological view, one which comes
very close to claiming that grounded theory captures an empirical truth or an objective
reality that is "out there" waiting to be revealed. In fact Glaser (1978) states that, "[Bly
developing the hypothetical relationships between conceptual codes.. .which have been
generated from the data as indicators, we 'discover' a grounded theory" (p. 55). In
addition, the precise coding methods, ordered data analysis, and procedural steps for
developing theory-first
outlined by Glaser and Strauss (1 967) and later by Glaser
(1978), and Strauss and Corbin (1 998)-suggest
a strong quantitative or positivist
kinship. Given these historical roots, in the larger realm of naturalistic inquiry,
grounded theory is typically identified as a post-positive methodology (Annells, 1996;
Denzin & Lincoln, 2000; Hatch, 2002).
In the nearly forty years since Glaser and Strauss (1967) first published their
work, there have been notable ontological and epistemological shifts in the qualitative
research landscape, the result of which has been an emphasis on critical, feminist,
constructivist, and post-structural paradigms. Included among these changes has been a
renewed interest in grounded theory as a methodology that is not necessarily
incompatible with postmodern research approaches. A number of researchers concur
that, despite its precise methods of data collection and analysis, grounded theory need
not be prescriptive or rigid, and the generated theory can build explanatory frameworks
that further rather than limit interpretive understanding (Charmaz, 2000; MacDonald &
Schreiber, 2001; Wuest, 1995; Wuest & Merrit-Gray, 2001). Thus, even with its postpositive underpinnings, grounded theory can lend itself to postmodern approaches and
is suitable for analyzing how oppressed, marginalized, and otherwise silenced
populations make sense of a particular situation, cope with a problem, experience
common meanings, or respond to interactional processes. For the purpose of this study
grounded theory is an appropriate methodology for explaining how HIV-positive gay
men respond to stigma in ways that impact their self-care behaviors because it provides
the means for development of a substantive theory that is missing in the extant
literature.
Conceptual Framework
Grounded theory has its roots in symbolic interactionism, a theoretical construct
developed by Herbert Blumer (1969), which postulates that human beings define
themselves through interaction with others via social roles. According to Blumer,
humans derive meaning from their interactions with others through an interpretative
process expressed through symbols, i.e., objects, situations, behavior and language.
Social interaction is expressed symbolically and meaning is derived only through
interaction with others. In other words, individuals act toward others and construct
meanings of self (i.e., they define themselves) based upon how others act toward or
define them. Blumer writes,
Symbolic interaction involves interpretation, or ascertaining the meaning of the
actions or remarks of the other person, and definition, or conveying indications to
another person as to how he is to act. Through this process, the participants fit
their own acts to the ongoing acts of one another and guide others in doing so (p.
66).
Because meaning is always understood in context (i.e., shared meaning) and is modified
and interpreted through these symbolic interactions, the meaning of stigma is integral to
the lives and constructed identities of HIV-positive gay men. They are defined in the
social context by their undesired differentness. This contextual view also supports the
idea that negative regard from others leads to negative self-regard. Further, because
stigma evolves in the context of culture and difference (Parker & Aggleton, 2003),
HIV-positive gay men are destined to cope with the forces of stigma by virtue of
interacting with others in a culture that continues to reproduce undesired differences. By
eliciting information directly from HIV-positive gay men as they experience and
respond to stigma, grounded theory becomes a mechanism for explaining "the hidden
meanings embedded in peoples' actions as they deal with the basic social problem they
share, and thus represents their consensual reality" (Millikin & Schreiber, 2001, p. 179).
Grounded Theory Methods
In grounded theory, data collection, coding, and analysis take place
simultaneously and sampling is done purposefully to advance the theory. According to
Strauss and Corbin (1998), "all procedures are aimed at identifying, developing, and
relating concepts" (p. 202). The selection of participants is based on what emerges from
comparative analysis and its relevance to the evolving theory, i.e., theoretical sampling
(Glaser & Strauss, 1967). Thus, emerging theory controls the sampling process, and
research participants are purposefully chosen for what they bring to the theory
development. As new categories emerge in the data, the researcher follows those leads
and targets certain groups for more data collection
As soon as data collection is underway, the researcher begins assigning codes to
the available data, in this case, written transcripts. First-level codes, sometimes referred
to as open codes or in vivo codes (Schreiber, 2001; Strauss & Corbin, 1998), are
assigned to participants' individual words, sentences, or whole paragraphs in order to
"discover, name, and categorize phenomena according to their properties and
dimensions" (Strauss & Corbin, 1998, p. 206). Starting with level-one coding, the
researcher begins conceptualizing and categorizing small slices of data, using the
participant's words as much as possible. As similarities among the codes and categories
begin to emerge in the data, the researcher begins collapsing the categories into higherlevel concepts (level-two coding) and formulates hypotheses or "hunches" (level-three
coding) about the relationships among the lower level codes and categories (Schreiber,
2001). Strauss and Corbin refer to level-two and level-three coding as axial coding,
because this coding occurs around an axis of a particular category. Using the constant
comparative method, the researcher continually compares the codes, categories, and
emerging relationships in order to "make some theoretical sense of each comparison"
(Glaser & Strauss, 1967, p. 109). Memos are used to track relationships among concepts
and record the progress and process of the research. Like journal entries, memos create
an audit trail of reflections, insights, struggles with bias, and analytic thought. Data
collection by theoretical sampling continues until no new properties, categories or
relationships emerge from the analysis, a point known as theoretical saturation (Strauss
& Corbin, 1998). Thus the method moves between inductive and deductive analysis in
order to generate a central category that emerges from the data. As Strauss and Corbin
(1 998) have noted, the central category "has analytic power [from] its ability to pull the
other categories together to form an explanatory whole" (p. 146). As the central
category is integrated with other concepts that are elicited from the information, a
theory emerges that is grounded in the data. The theory should be substantive, though
not necessarily formal; it should be abstract enough to account for all the variation in
the data; and it should explain the social phenomenon addressed by the research
question (Strauss & Corbin, 1998).
Grounded theory methods have evolved over the years, due in part to a schism
that emerged between Glaser and Strauss. In Theoretical Sensitivity, for example,
Glaser (1978) expanded on some of the procedural methods previously described in The
Discovery of Grounded Theory (Glaser & Strauss, 1967), particularly with regard to
coding, theoretical sampling, saturation, and memoing. Fortunately, most of these
changes were incorporated into the procedures described by Strauss and Corbin (1 998,).
However, Glaser would eventually accuse Strauss (and Corbin) of losing some of the
"ab,stract logic" required to generate a grounded theory, claiming that some of their
conceptualizations would result in "forcing" the data (Glaser, 1992). In time, other
disagreements would emerge between the two authors-over
issues pertaining to
verification, how the researcher finds the central category, and the suitability of Strauss
and Corbin's (1998) "conditional matrix" for doing the data analysis (MacDonald,
2001). While these differences may have significance for understanding the evolution of
grounded theory as a methodology, Charmaz (2000) reminds researchers that traditional
grounded theory methods, which are widely used in qualitative inquiry, are probably
best viewed as "analytic strategies, not data collection methods" (p. 5 14). Thus all the
methods and their permutations are probably best used as guidelines rather than as a set
of instructions for how to build a grounded theory. To avoid confusion, the strategies
outlined in Strauss and Corbin's second edition of Basics of Qualitative Research:
Techniques and Procedures for Developing Grounded Theory (1998) were used to
guide this study.
Validity, Obiectivity, and Reliability in Qualitative Inquiry
Because qualitative or naturalistic approaches acknowledge multiple truths,
changing realities, and shared meaning, the terms validity, objectivity and reliability are
conceptualized differently in qualitative analysis. Validity implies that research findings
are congruent with the reality under analysis. While qualitative researchers want their
results to represent what is true about their topic of investigation, they verify' and
confirm their findings rather than validate them. In quantitative research, objectivity
strives to maintain a clear separation between researcher and participants, where the
researcher asserts an objective stance and every effort is made to eliminate bias;
however, researcher objectivity fares poorly in qualitative inquiry because it is an
interpretive or naturalistic paradigm and the investigator is the research instrument.
Lincoln (1995) argues that "detachment and author objectivity" can actually be
"barriers to quality, not insurance of having achieved it" (p. 280). Additionally, the
extent to which research findings can be replicated reliably is somewhat problematic
with qualitative approaches because human behavior and discourse are dynamic rather
than static, knowledge is experientially based, and meaning is always interpreted in
context. As such, replications of qualitative research studies will unlikely yield the same
results.
As alternatives to validity, objectivity and reliability, Lincoln and Guba (1 985)
suggest that the terms credibility, dependability, con$rmability, and transferability
represent more fitting constructs for qualitative inquiry. For example, credibility asks if
the phenomenon of interest is accurately described and whether the study's analysis is
sound. Credibility further speaks to the accuracy or trustworthiness of the findings,
particularly for those researchers who are the "coconstructors of the original multiple
realities" (p. 296). A positivist notion of reliability assumes a study can be logically
replicated because the conditions and confounding variables can be controlled. In
contrast, qualitative analysis does not claim to be replicable. Rather the researcher
purposefully avoids controlling the research conditions and focuses on the natural and
situational complexities of the subject under investigation. A qualitative study's
dependability allows for an emergent design, which is often needed in qualitative
analysis to accommodate the changing conditions and variables surrounding the
phenomenon of interest. Similarly, confirmability, replaces the comparable positivist
concept of objectivity in establishing the "truth value" of the data. Confirmability asks
whether others could confirm the results, and if the data do in fact substantiate the
research findings and support the study's implications. The final construct,
transferability, is the degree to which the study's findings are applicable or useful to
those with similar research questions and/or in comparable settings (Creswell, 1998;
Lincoln & Guba, 1985; Marshall & Rossman, 1999). In naturalistic inquiry these
constructs are sometimes collectively referred to as "trustworthiness" or "authenticity"
to reflect a more relativist ontology and subjectivist epistemology (Denzin & Lincoln,
2000; Lincoln & Guba, 1985).
Qualitative researchers employ several techniques to assure credibility,
transferability, dependability, and confirmability in their studies. Triangulation makes
use of multiple resources, comparable studies, related theories, and related literature to
corroborate the analysis andlor confirm the study's findings. Triangulation also includes
asking other experts on the topic, key informants, or peers to review findings. For
example, a peer reviewer can play the devil's advocate, ask the "hard questions," help
identify biases, question the credibility of the study, or identify where the researcher has
lost perspective (Lincoln & Guba, 1985). To test conclusions, Miles and Huberman
(1994) also suggest looking for "negative evidence," the "extreme cases" or the "rival
explanations" in the data (p. 263). Additionally, member checks refer to taking the
findings back to the participants at various stages in the research process for verification
or confirmation, i.e., asking the participants, "Did I get this right?" Member checks can
be done throughout the research process during the initial or subsequent interviews, via
phone calls, or in focus groups (Miles & Huberman, 1994).
Reflexivity: Researcher Bias and Subiectivitv
All research is subjectively conceptualized by ontological and epistemological
approaches, which are under the influence of the researcher's beliefs, feelings,
experiences of the world, and the nature of human discourse. Lincoln and Denzin
(2000) remind us that no researcher can be "an objective, authoritative, politically
neutral observer standing outside and above the text" (p. 1049). While qualitative
researchers employ specific methods to confirm the trustworthiness, credibility and
authenticity of their findings, they also recognize that the subjective nature of
interpretive inquiry is inexorable. Accordingly there can be no value-free analysis, no
unbiased interpretation of data, and no unaltered truth. Because in qualitative
interpretation the researcher and the study participants create a discourse or text, the
meaning, the reality, or "the truth," is an evolving co-construction. Consequently, any
pledge to assure credibility, authenticity and trustworthiness by limiting bias and
subjectivity places the qualitative researcher in a delicate and somewhat paradoxical
position. On the one hand is the need to identify and minimize researcher subjectivity in
order to establish credibility and confirmation of the study's findings, and on the other
hand is the inevitability of privileging oneself in the analytical discourse by claiming
authorship of the text. On this very point, Laurel Richardson (2000) argues that, despite
declarations of confirmability, trustworthiness and credibility, "There is no such thing
as 'getting it right'-only
'getting it' differently contoured and nuanced" (p. 930-1).
Clearly, in the text of interpretative analysis the researcher's voice is always present.
Specific methods and techniques for assuring credibility and trustworthiness, and how
the researcher dealt with bias and subjectivity in this study are discussed in the final
sections of this chapter.
Terminolorn
The following terms are used frequently throughout this study. For clarity, their
operational definitions are provided below.
Gay men: This term refers to men who self-identify as gay or homosexual and
thus acknowledge belonging to this sexual minority group. See men who have sex with
men (MSM) below.
HIVIAIDS: The abbreviation HIV (Human immunodeficiency virus) coupled
with the acronym AIDS (Acquired Immunodeficiency Syndrome) are used together in
this paper as one term, but they are two distinct conditions. HIV is the biologic and
causative agent of HIV disease. AIDS is a clinical diagnosis that is made when a person
who is seropositive for HIV antibody (HIV-positive) meets specific clinical criteria
based on disease progression (i.e., CD4 count, presence of AIDS-defining conditions, or
opportunistic infections). For the purpose of this study, the distinction between the two
terms is mostly unimportant. Unless otherwise noted, HIVIAIDS is used throughout this
study to refer to HIV disease, with or without AIDS.
Men who have sex with men (MSM): This term is used to describe men who
engage in sexual activity with other men, which is a risk behavior for HIV transmission.
It is important to distinguish MSM from gay men, because some MSM may not selfidentify as gay.
Self-care Behaviors: For the purpose of this study, self-care behaviors refer to ,a
range of purposeful behaviors that have a direct or indirect impact on physical or mental
health. These include health maintenance, health promotion, or disease-prevention
behaviors (primary or secondary); self-treatment behaviors; adherence to prescribed or
recommended treatments; information seeking; behaviors that mitigate negative health
sequelae or those that enhance health status; symptom evaluation and management; and
interactions with health professionals (Dean, 1981; Levin & Idler, 1983: Levin, Katz, &
Holst, 1979).
Stigma: Stigma is a negative label or "an attribute that is deeply discrediting"
(Goffman, 1963, p. 3) such that the person or group is devalued. For the purpose of this
study, the two main stigmatizing attributes are being gay and being HIV-positive.
Study Design and Implementation
Using grounded theory methods as outlined by Strauss and Corbin (1998),
theoretical sampling was used to recruit participants for this study. Fifteen HIV-positive
gay men participated in semi-structured interviews, which lasted approximately one
hour. The individual interviews were audio taped and later transcribed for analysis.
Interviews were held between August 2005 and early January 2006. In addition to the
interviews, one focus group with five additional HIV-positive gay men took place in
September 2005. The focus group discussion was not audio taped because the group
met at a retreat for PWHAs where recording was not allowed. Grounded theory
methods were used to code and analyze the data. Data collection was discontinued upon
reaching theoretical saturation.
Interview Questions
Several interview questions were developed and used to maintain a consistent
focus on the research topic of how the self-care behaviors of HIV-positive gay men are
affected by stigma. As suggested by Strauss and Corbin (1998) these "guiding
questions" (p. 78) were used to steer the data collection (interviews), guide the data
analysis, and enhance the development of the evolving theory. For this study, the
following four interview questions were used to guide data collection and analysis:
1. Give examples of how you have been stigmatized by being gay, by being HIVpositive, or both.
2. How would you describe the effects of stigma on your life?
3. How do you cope with or manage the effects of stigma?
4. How does stigma impact your self-care decisions and self-care behaviors?
Because data collection and analysis were done concurrently, certain interview
questions were given more emphasis as data collection and analysis evolved. For
example, during the last five interviews, more time was spent on questions 3 and 4. This
allowed for expansion of the theoretical concepts and development of the grounded
theory.
Recruitment
The participants in this study were recruited through posters and flyers distributed
at local AIDS service organizations (ASO), HIV support networks, and medical clinics
in southern Maine. Information on the posters and flyers briefly stated the nature and
purpose of the study and instructed prospective participants to contact the researcher by
telephone or email if they were interested in participating. Some men also heard about
the study through word-of-mouth and contacted the researcher. The focus group was
held at an annual retreat for PWHAs, where the researcher was asked by the conference
organizers to facilitate a health-related workshop.
Participation Criteria
The primary participants for this study consisted of fifteen gay-identified adult
men (1 8 years of age or older) who had an HIV diagnosis for at least one year. The oneyear stipulation was included because persons newly diagnosed with HIV are often
shocked and overwhelmed by the diagnosis and need time to assimilate the information.
Men were excluded from the study if they lacked capacity and/or had a court-appointed
guardian; had severe, persistent and disabling psychiatric illness; were intoxicated from
alcohol or other substances at the time of the interview; or were the primary care
patients of the researcher.
Description of the Primary Participants
The 15 primary participants ranged in age from 26 to 62 years of age. The median
age was 5 1 years, and 12 (80%) were over 30. Thirteen (87%) of the men were
Caucasian and two (13%) were African American. In comparison, demographics for the
state of Maine show that approximately 80% of PWHAs are age 30 or older; 87% are
Caucasian, and 6.5% are African American (Maine Department of Health and Human
Services, 2005). With the exception of African Americans being slightly overrepresented, the primary participant population in this study roughly approximated the
age range and raciallethnic mix of PWHAs in the state of Maine. It is important to point
out that these Maine data represent HIV-positive men and women combined; however,
83% of all PWHAs in Maine are male (Maine Department of Health and Human
Services, 2005). Just over half of the men in the study had been HIV-positive for at least
15 years, and three had been HIV-positive for less than five years.
Confidentiality and Human Subiects Protections
Prior to interviewing or participating in the focus group, participants were assured
that the information they provided was confidential, and informed consent was
obtained. Informed consent included an explanation of the study's purpose, procedures,
risks, benefits, and protections. All primary participants were given the opportunity to
read and sign the consent before engaging in the research. Due to the sensitive nature of
HIVIAIDS, and to assure that every effort was made to minimize the risks of being
identified by their association with the study, participants were not required to sign the
consent form. All the participants in the focus group waived their option to read and
sign the consent form.
Participants were informed that some of the findings from this study could be
used in the future for professional presentations or publication of articles in journals and
other periodicals. As part of the informed consent process, participants were also told
that their participation in the study was strictly voluntary, and that they could withdraw
from any part of the study at any time without reprisal. They were also informed that it
is customary for the university to kkep doctoral dissertations indefinitely, both in paper
form and in electronic databases.
Institutional Review Board Approval
None of the participants for this study were solicited from institutional,
correctional, or inpatient populations; therefore, local institutional review board (IRB)
approvals were not needed. This research was done according to the guidelines and
principles outlined in the document entitled Policies and Procedures for the Protection
of Human Subjects of Research, University of Maine, Office of Research and Sponsored
Programs. The researcher completed the University of Maine Research Training
Tutorial on September 14, 2004, and approval to conduct this research study was
granted by University of Maine IRB on June 23,2005.
Data Collection, Coding, and Analysis
Data were collected from individual oral interviews and one focus group
discussion. Each oral interview was transcribed verbatim and the transcripts were
initially read to identify relevant thematic elements and significant concepts. Each
transcript was then re-read and data were coded. As suggested by Strauss and Corbin
(1 998) coding was done to look for salient thoughts or ideas expressed by the
participants. Throughout the coding process, constant comparison was used to identify
relevant properties and dimensions and compared to previous data. After the fifth
interview, the focus group was held with a completely different group of five HIVpositive gay men in order to continue data collection and compare it with the findings
taken from the individual interviews.
The focus group discussion provided an alternative method for eliciting data from
several additional participants at once. One advantage of using the focus group was that
participants were able to hear and respond to each other's comments, thus allowing for
an open discussion and the sharing of alternative perspectives on the research topic. The
focus group also had the advantage of being held in a socially comfortable environment
where the participants were accustomed to being open about their HIV-positive status
and being gay. Finally, the focus group format allowed the researcher to include some
of the data from the first five interviews as part of the focus group discussion, offering
yet another way to use constant comparison in order to corroborate andlor refute the
early findings. As previously noted, the data collected from the focus group discussion
was not recorded; however, notes were taken during and after the group discussion and
later transcribed into the memos.
Memos
In keeping with grounded theory methods as outlined by Strauss and Corbin
(1 998), memos were written after each interview was transcribed and coded. Memos
were used to capture the initial impressions and make analytic comparisons about
codes, themes and emerging concepts. The memos served as a type of research journal
where the researcher processed thoughts about the data, compared and linked data with
evolving codes, captured new ideas or directions for the analysis, and experimented
with theoretical ideas and diagrams. Through written memos, the researcher's ideas
about the data were tracked and reanalyzed after each interview in order to compare
data, look for coherence and/or inconsistency, and develop ideas about the emergent
theory. Memos were reread throughout the study as a way track the evolution of the
grounded theory and assure coherence in the analytic process.
Coding
Three levels of coding, as outlined by Strauss and Corbin (1998) were used to
analyze and compare the data: open coding, axial coding, and selective coding. Using
open coding, data in the first five transcripts were analyzed line-by-line and/or phraseby-phrase to identify the significant properties and dimensions. After analyzing five
transcripts, a total of 465 bits of data were coded, yielding 127 unduplicated open
codes. After the open codes were identified in the first five transcripts, data elicited
from the focus group were added. Together these data were compared for shared
properties and dimensions and then further reduced to subcategories (an interim step in
the data reduction process). Again, using constant comparison, data from the first five
interviews and the focus group were reduced to subcategories and identified by broader
descriptive terms, or what Strauss and Corbin refer to as axial codes.
After all 127 open codes from the first five transcripts and the focus group were
reanalyzed to identify properties that related them, they were assigned to subcategories
that further reduced the number of codes and grouped data together according to
common properties. The subcategories were then further reduced to seven axial code
categories. For example, most of the men identified a number of ways that they had
been stigmatized for being HIV-positive, i.e., having tainted blood, being devalued, or
because others thought that death was imminent. Through a data-reduction process,
these openly coded data were reduced to subcategories, which in turn were further
assigned an axial code called "Identifying HIVIAIDS Stigma." Table 1 provides an
example of how the open codes were eventually assigned to an axial code category.
Open Code
Sub Category
Axial Code
HIV = poisonlcontamination;
HIV = death; HIV = being devalued
Sources of HIVIAIDS
stigma
Identifying HIVIAIDS Stigma
Table1 : Example of the coding process
Because subsequent interviews did not produce any new open codes, axial coding
was used to organize the subsequent data. By using axial coding, the data were further
analyzed to identify the theoretical properties of the potential central category. This
enabled the researcher to code for explanations and "understanding of phenomena"
rather than for "conditions, actions/interactions, and consequences" (Strauss & Corbin,
1998, p. 129). With seven axial codes (categories) identified, all new data were
compared to previously collected data and were ultimately placed in one or more of
seven axial code categories. When it appeared that some codes could be assigned to
more than one category, they were included in both.
Once it became clear that all the data could be assigned to one of the seven axial
code categories, selective coding was then used to evaluate the theoretical relevance of
the concepts and to look for substantiation of an emerging central phenomenon or core
category that represented an integration of all the data. At this point in the analysis, data
that had been axially coded were integrated into more abstract or theoretical categories.
As suggested by Miles and Huberman (1994), the researcher also began comparing the
findings against any potential "negative evidence" or any "rival explanations" that
might challenge or disconfirm the findings (p. 271). By using selective coding, the
analysis had reached a higher level of abstraction, and all the data began to "fit" into
one of three emerging concepts. This data-reduction process is described in Chapter 4.
and the process of data reduction is illustrated in detail in the Appendix.
Methods Used to Assure Trustworthiness, Confirmability and Credibilitv
Triangulation and other strategies discussed in the first part of this chapter were
used throughout this study to both verify and challenge the trustworthiness,
confirmability, and credibility of the findings and conclusions. Member checks were
done to elicit feedback from the primary participants to confirm and clarify the data
analysis. Two professional peer reviewers also gave feedback on the use of grounded
theory methodology and the study's findings. The empirical and theoretical literature
related to the research topic was consulted to further corroborate or challenge the
findings and conclusions. This is thoroughly discussed in Chapter 5. Finally, selfreflexivity, which examines how the researcher identified and processed his personal
subjectivities and potential biases, is discussed in the final section of this chapter.
Member Checks and Peer Review
To ensure credibility and trustworthiness of the study's findings, all of the
primary participants were contacted individually to discuss the results of the analysis.
Eleven of the 15 primary participants responded with feedback about the data analysis
and the main iindings. One primary participant had moved from the area and left no
contact information; two participants did not return phone calls or email; and one
participant had died. All the participants who responded corroborated the findings of the
study. Participants from the focus group were not contacted because they did not wish
to give their names or contact information to the researcher.
Four peer review sessions were done with two different qualitative researchers to
review the use of grounded theory methods, examine the analytic process, and evaluate
the study's findings. The peer reviewers were selected because they both had done
qualitative research and both had experience with grounded theory methods. One
reviewer had a doctorate in clinical psychology and worked extensively with HIVpositive gay men. Both peer reviewers coniirmed the appropriate use of grounded
theory methods as outlined by Strauss & Corbin (1998); they also stated that the
grounded theory made empirical sense, and that the study's conclusions were credible.
Self-Reflexivity
Because in qualitative inquiry the researcher is the primary instrument for data
collection and analysis, the issue is not so much how to preserve objectivity but rather
how to situate intrinsic subjectivity. Bloom (2002) observed that, rather than attempting
"to exorcise subjectivity from their hearts, minds, and texts," qualitative researchers are
better served by identifying and analyzing their subjectivities "as interesting,
inescapable components of an inquiry process" (p. 290). Thus self-reflexivity is a way to
"come clean" by unpacking or foregrounding values, biases and assumptions and
recognizing their potential influence on the study. Therefore, while qualitative
researchers use strategies to confirm trustworthiness, credibility and authenticity, they
are also responsible for recognizing personal biases and subjectivities, and for "bringing
to consciousness some of the complex political/ideologica1 agendas hidden in our
writing" (Richardson, 2000, p. 936).
Throughout the data collection and analysis in this study, the researcher
acknowledged how several inherent biases, assumptions, or personal experiences might
have influenced the research process. For example, the researcher recognized that, as a
gay man, he had also been affected by many of the same stigma-related influences and
struggles as the men who participated in the study. Given this shared history, the
researcher could not avoid identifying with the participants' experiences of stigma, i.e.,
acknowledging that, "I know what it's like because I am one of you." Given this shared
experience, the researcher struggled to guard against letting it bias the research. He used
a number of methods to protect the study from undue bias. For example, coded data
were periodically shared with peer reviewers to look for overstated interpretations,
hyperbolic conclusions, or theoretical concepts that were not grounded in the data. The
researcher also turned to the available literature to look for any studies that had come to
different conclusions or offered alternative interpretations. Finally, as their interview
transcripts were being analyzed, the research participants were contacted to corroborate
the interpretations and conclusions. None of these techniques uncovered any obvious
bias, partiality, or gross misinterpretation of the data.
The researcher also realized that, because he is not HIV-positive, he obviously
could not identify with many of the participants' stigma experiences-in
this case
acknowledging that, "I don't know what it's like because I am not one of you." From
this perspective there was no shared experience, which created distance between the
researcher's and the participants' stigma experiences. The researcher further
acknowledged some tension between the two perspectives, i.e., knowing what it's like,
yet not knowing what it's like. Given these somewhat conflicting perspectives, the
researcher struggled against the temptation to compare his personal experiences of gay
stigma to the multi-layered stigma experiences of the HIV-positive gay men in the
study. Again, the peer reviewers who examined the data did not find any
misinterpretations, contradictions or unsound conclusions. In addition, the extant
literature corroborated and supported the study's findings. Most importantly, through
member checks, the research participants confirmed that the interpretations and
conclusions were sound and did not show evidence of the researcher's personal
subjectivity or bias. As the study evolved, the researcher revisited the coding and
analytical process numerous times to verify that all interpretations, evolving concepts
and conclusions came directly from the words of the participants and not from his own
preconceived ideas or opinions about what the study should look like. This was one
more way to assure that the researcher's subjectivities were not driving the analysis
Finally, it is important to point out that, while the methodology used for this study
was grounded theory, the ontological and epistemological perspectives of the researcher
are a combination of critical-feminist and constructivist paradigms. These paradigms
acknowledge what the researcher believes to be the nature of reality (ontology), as well
as what can be known and its relationship to the knower (epistemology). This
overarching approach represents the researcher's subjective standpoint-that
reality is a
subjective and dynamic process rather than an objective and fixed entity; that the
results, or what is understood to be a truth about the phenomenon of interest, is coconstructed by the participants and the researcher (i.e., constructivist perspective); and
that the product of the research, the text or narrative interpretations, cannot escape the
value-laden influences of race, class, ethnicity, sex, gender, politics and culture. The
feminist perspective is important to this study because it helped the researcher to focus
on key questions about what happens when one social group stigmatizes and holds
power over another group, resulting in social inequalities (discussed in Chapter 1). In
this case the feminist perspective can be viewed as a positive bias because it facilitated
development of the main research question by sensitizing the researcher to issues of
inequity. Given this subjective standpoint, there is little question that the researcher
approached this study believing that sexual minorities and PWHAs are devalued,
disempowered and marginalized, and that these sociocultural conditions have a
significant impact on their health and well-being. This perspective was confirmed by
the literature examined in Chapter 1.
Chapter Summary
This chapter describes the methodology and specific research methods used in
this study, and explains the process of data collection, coding, and analysis. Through 15
oral interviews and one focus group, a total of 20 HIV-positive gay men were asked to
describe how they cope with stigma and to explain how it had an impact on their selfcare. Using the research methods outlined by Strauss and Corbin (1998), the data
elicited from these men were coded, analyzed and used to generate theoretical concepts,
which ultimately led to the development of a grounded theory. This chapter also
described the participant population, the recruitment process, and how human subjects
protections were assured. In the final sections, specific techniques used by the
researcher for minimizing bias and assuring trustworthiness and credibility of the
findings were discussed. The study's results, including a description of the grounded
theory, are discussed in the next chapter.
Chapter 4
RESULTS
Introduction
The 20 HIV-positive gay men who participated in this study described a number
of behaviors or strategies that they used to manage stigma. They also provided
numerous examples of how stigma had an impact on their self-care behaviors, i.e., how
they took care of themselves both physically and emotionally. For these men, taking
care of themselves meant not only keeping medical appointments, taking medication,
and following the advice of their health care providers, but also included minimizing
stress, finding positive social networks, and striving to live normal lives. Using
grounded theory methods to analyze how these men managed the obstacles and
challenges imposed by stigma, a process of striving for normalcy emerged as the central
category. For these men, having normal lives meant finding supportive social networks
as a way to manage stigma.
This chapter will describe the significant findings that emerged from the data
and explain how the central category evolved. The chapter begins with an explanation
of the data-reduction process, showing how the theoretical concepts were developed
from the seven axial codes. The three theoretical concepts that emerged from the axial
codes are used as major section headings to organize the discussion of the findings.
Direct quotes and examples from the data (transcripts and focus group) are used
throughout this chapter to illustrate the key findings. While a few of the direct quotes
have been edited for readability, accuracy has been carefully maintained. The
discussion of these findings in light of previously published empirical and theoretical
literature will follow in Chapter 5.
Axial Codes and Theoretical Concepts
As discussed briefly in the previous chapter, seven axial code categories emerged
from the data. The axial codes represented a reorganization of the raw data, pointing out
the relationships among the open codes and taking the analysis to a more explanatory
level. The following seven axial codes were developed from the open codes: (1)
identifying gay stigma; (2) identifying HIVIAIDS stigma; (3) identifying the impact of
stigma; (4) self-protection from stigma: hiding and selective disclosure; (5) counter
stigma: preemptive disclosure; (6) maintaining balancelnormalcy; and (7) the impact of
stigma on self-care: the role of social support. With further analysis, the seven axial
codes were reduced to three major theoretical concepts. Table 2 illustrates this data
reduction process by identifying the seven axial code categories and showing how they
were grouped into theoretical concepts. The reader is also directed to the Appendix for a
more detailed illustration of the coding and data reduction process.
Axial Code
1. Identifying Gay Stigma
2. Identifying HIVIAIDS Stigma
3. Identifying the Impact of Stigma
4. Self Protection from Stigma: Hiding & Selective
Disclosure
5. Counter Stigma: Preemptive Disclosure
6. Maintaining Balance/Normalcy
7. Impact of stigma on self-care: Role of social support
Theoretical Concepts
d
d
d
d
d
d
d
1. Perceived Stigma Threats
2. Stigma management
3. Striving for Normalcy
Table 2: Example of Data Reduction: axial codes to theoretical concepts
Theoretical Concept 1: Perceived Stigma Threats
All the men in this study gave examples of how they personally had been
stigmatized, for being gay and/or for having HIVJAIDS. They also described how they
lived with the unrelenting threat of stigma in their lives, not knowing how or when it
would manifest. In response to the potential consequences of being stigmatized
(shamed, disrespected, rejected, harmed), they had learned to scan their environments to
identify stigma threats. As one man stated, "You're never sure where an attack is going
to come from. So you sort of have to be prepared, so you have this invisible barrier
between you and everyone else."
While some men were keenly aware of the presence of stigma in their lives,
others were less affected. Two of the HIV-positive gay men began the research
interview almost apologetic, because they believed they had little to offer on how they
were affected by stigma. These men felt that they had somehow become immune to
stigma; or, because they had lived with being HIV-positive and being gay for so many
years, they were not sure if or how they were stigmatized. However, as the interviews
progressed both of these men described instances where they were stigmatized. As an
example, one man stated, "One of the reasons that I neglected to call you earlier is
because I don't know if I've been stigmatized. I suppose there have been some things
[but] I can't really come up with them to share with you." Later in the interview, while
describing how he had become more involved with his church, this same participant
acknowledged, "I have a priest who tells me, 'Don't tell anyone about your sexuality or
about you having AIDS. "'
identify in^ Gay Stigma
The men in this study were clearly able to distinguish between stigma that was.
attributed to being gay and stigma that was attributed to having HIVIAIDS, with the
latter being more pervasive and more threatening. Men who described gay-related
stigma often identified it in the form of anti-gay prejudice or homophobic comments
from others-for
example, being perceived by others as effeminate, or un-masculine,
or, as one participant said, being characterized as "flaming, prissy, not really a male."
One participant, for example, described an unsettling conversation with his landlady,
where she blatantly stigmatized him as a gay man by referring to him in hermaphroditic
terms. He said, "I have a landlady who describes me as a 'he-she.' And that's sort of
mind-boggling. It's very unpleasant to hear that." Another man described how he had
been honest about his sexual orientation when starting a new job because he felt that it
made sense to be open rather than try to hide the fact that he was gay. Months later he
overheard his professional colleagues making homophobic remarks.
There was definitely apparent and blatant discomfort among my colleagues
because they were going to be sharing a bathroom with a gay man. You know,
there were some jokes, and some remarks. Kind of like being Black and hearing a
nigger joke.
A man who had served in the US Navy explained how he had to live with the military's
don't-ask-don't-tell policy regarding sexual orientation. While he followed the rules and
did not openly divulge his sexual orientation, he described how some of his shipmates
openly taunted him when they began to suspect that he was gay.
When I first got to my first ship, people would hit on me just to see what kind of
response they would get out of me. I had a guy literally drop his shorts in front of
me and start wiggling his dick."
Gay-related stigma also came from people who held strong moral or religious
objections to homosexuality. Many men commented that, as a group, they were
stigmatized by the "Christian right," or by "religious zealots" who proffered moral
arguments that gays were sinful, depraved or deviant. As an example, one man who was
in a committed relationship with another man for many years described how his
partner's cousin admonished them: "If you don't forsake your homosexuality, you're
going to go to hell when you die. Do you know that?" When this man's partner
eventually died from AIDS, the cousin insisted on handing out "Exodus" pamphlets at
the funeral-literature that promotes therapy to change one's sexual orientation.
Another man told a story of how a woman in his church, where he had recently become
a Eucharistic minister, expressed her discomfort about his homosexuality by saying to
him: "You're doing all of these things in the church and everything, but you are gay and
I wonder about receiving communion from you."
Although the men in this study felt that gay-related stigma was less pervasive than
HIVIAIDS stigma, it was still worrisome to some men because of the potential for
harassment, physical harm, harm to property, or threat to livelihood. One man who
stated that he normally felt very open and "out" about being gay admitted that there
were still times when he worried about the consequences of gay stigmatization.
I forget what sort of bumper sticker I had. Maybe it was just a simple little
triangle. But I really wondered if I was going to get grief for that in that small
town, or if my car would be vandalized. You know, just going down to the
laundromat.
Another man described how gay-related stigma nearly cost him his job after his
employer became suspicious that he was gay: "I was pretty cool, definitely at work.
They threatened to fire me, so I felt pretty vulnerable. They told me if I was gay they
obviously couldn't have me work there anymore."
Interestingly, several men felt that when they felt stigmatized for being gay, it was
based on the assumption that being a gay man automatically meant they were infected
with HIVIAIDS, as though the two attributes were inseparable. As one man noted, "I've
had business associates not want to do business with me anymore because they found
out I was gay. And later on I found out that it was because they were afraid I was sick."
Another man agreed: "Yeah, if you're gay, it's automatically assumed that you have it
[HIV]." Other men felt that HIVIAIDS stigma was an amplification of gay stigma,
almost as though a gay man becoming infected with HIV was a predictable, selffulfilling expectation and that the person deserved what they got for being irresponsible
or indiscrete. One man stated, "People think this is what you deserve. You're a gay
man. You asked for it." Most men thought this form of HIVIAIDS stigma was strongest
within the gay community. One man summarized this theme.
I think the biggest stigma is still within the gay community. If you're positive it's
worse than having a small cock. Or it's worse than some of the other things that
they can put you down for. To a lot of people it's just, "You shouldn't have been
so stupid." Or, "You got caught, finally. You must have been screwing around
everywhere."
Identifying HIVIAIDS Stigma
While the men in this study were able to differentiate gay-related stigma from the
stigma of HIVIAIDS, they felt stigmatized much more for being HIV-positive than for
being gay. Although gay-related stigma was still present in their lives, most believed
that society had become much more tolerant of homosexuality and that being gay had
gradually become more accepted. As men described their stigma experiences, it became
clear that the stigma associated with being HIV-positive eclipsed gay-related stigma and
thus represented a much greater burden. One man's comments illustrated this point.
I mean, what's the big deal about being gay now a days? Back thirty years ago, I
wasn't so open about it. But at this point, I couldn't care less who knows that I'm
gay. There's nothing to it. Thank God we've evolved as far as we have on that
level. But as far as HIV, no matter how healthy I am I still think of myself as a
poisoned animal.
As exemplified in the above statement, a common source of HIVIAIDS stigma for
these men was fear of contamination, i.e., being seen as "poisoned" or having "tainted
blood." Many men believed that because they were labeled as "tainted," it essentially
made them feel like social pariahs. One man stated that, after he tested HIV-positive,
some members of his family and a few friends treated him like "a leper." He
remembered being spurned by a number of friends, and many of his family members
became fearful that he might somehow contaminate them. For example, one of his
sisters expressed concerns about bringing her family to his house for Thanksgiving
dinner because she was worried that "her son was going to be coming into a house of a
gay man who was sick." Another man related a similar story: "When I told my very
close friends who were straight, [they] immediately told me that they couldn't let their
children near me, because they were fearful that the children could contract AIDS."
Soon after getting his HIV diagnosis in early 2004, another man described how his
father treated him like he had the potential to contaminate their entire household.
The first week that I told my father that I was positive, he bought plastic cups,
paper plates, and plastic silverware. And I was to use those and only those. And
on top of that he made me bleach, and wash all the pots and pans in the house, and
all the silverware and all the dishes and all the cups, in case I used any of them.
Another participant expressed frustration that, after 20 years of HIV education, people
still ask, "Is it OK if we use the same silverware? Do we have to put it through the
dishwasher after you've eaten with us? Will that kill it?"
Several participants described how, once their HIV-positive status had become
known, they were branded and ostracized in the gay community. One man felt that his
circle of gay friends had become smaller after his diagnosis. He believed that a number
of his gay friends had distanced themselves from him because they were suspicious that
he might somehow be preying on them in a vengeful way. He stated, "Most people
think that the first thing you want to do is spread it to everybody else." Another man
told a story about how, shortly after his diagnosis, his HIV status had become the
subject of rumors about how he was purposefully engaging in risky sexual behavior
without disclosing his HIV status to sex partners.
All of a sudden I started hearing stories [of] people claiming to have had sex with
me. It was somebody that I knew, that I had talked to, but that I never had sex
with. And he claimed that he had had sex with me and had contracted herpes from
me.
Another participant explained how, after moving to a small town to start a new job, he
recalled hearing people make stigmatizing statements about other men in the
community that were known or suspected to be HIV-positive. He described how people
would identify a particular person by name and say, "Watch out for that one. That one is
tainted."
For a few men, particularly those who had been given an AIDS diagnosis or had
been living with their HIV diagnosis for many years, the stigma associated with
HIVIAIDS was rooted in the perception that their death was imminent. Many of these
men felt stigmatized because others often viewed them as people who were "dying from
AIDS," rather than as people who were living with a chronic medical condition. One
man clarified this point: "I'm living with a disease. It's not the disease, you know. I'm
living,I guess is what I am trying to say." Men who had been given an AIDS diagnosis
particularly felt that others saw them as "terminal" and treated them like they were close
to death. One man described how he was stigmatized as a "dying person" even though
his HIV was well managed and he was overall in good health: "That was a big fear. I
was just going to disappear, you know. People were afraid I wasn't going to make it.
And I guess it still is kind of weird. I still get a lot of that." Another participant
described how, after his AIDS diagnosis, his mother wanted to add his name to the
prayer list at their church, because she was worried that his death was forthcoming.
Since it was the same parish in which he had been an altar boy many years before, he
worried that being on the prayer list not only increased his risk for being recognized and
stigmatized as someone with AIDS, but it also marked him as someone who was dying
rather than living with AIDS. He eventually told his mother, "It's OK if you pray for
me, but you need to understand that I am not going to die tomorrow."
Men who had visible manifestations of HIVIAIDS, such as wasting, or loss of
facial or peripheral limb fat, felt more vulnerable to stigma. For these men, the visible
stigmata of the illness readily identified them as a person who looked unhealthy or sick.
One man who had physical manifestations of HIVIAIDS talked about how he was
reminded on a daily basis of how the stigmata shamed him.
If we didn't have to look at AIDS every time we look in the mirror, I'm sure we'd
feel a lot better about life. That's a heavy thing to deal with. I try not to think
about my face showing AIDS, you know, I just try and pretend it's not there for
the most part-until
the next time I look in the mirror.
Another participant who worked as a professional described the reactions of some of his
clients, many of whom had not seen him since he developed noticeable facial atrophy
(i.e., sunken cheeks). Most of his clients were not actually aware of his HIV diagnosis;
however, many of them commented on his appearance and openly wondered about the
status of his health.
-
I had always had a nice round face, full face. And clients still come in [who]
haven't seen me in a few years and say, "Are you OK?" That's the first ten
minutes of the conversation. Just, am I OK? I just don't look like the same person
I used to be at all. I mean that's a physical stigma.
A frequent comment from the men in this study was that they felt more HIVIAIDS
stigma coming from other gay men than they did from people outside the gay
community. One participant said,
I've had several opportunities in the straight community to come out about me
being gay and HIV-positive. And in that community it was received with
seemingly a lot more respect. The problems I run into are in the gay community.
In describing his experience of stigma coming from within the gay community, another
man stated,
It seemed one of the most horrible, hateful things to do. Because they weren't
saying, "Oh, be extra nurturing and tender to this person. Ask if they need soup
once in awhile." You know, it was definitely, "Watch out for them. They're
dangerous."
The men with HIVIAIDS stigmata were also acutely aware that other gay men
were more likely than others to recognize the visible manifestations of the illness, and
therefore could easily identify them as being HIV-positive. These men believed that, in
many cases, having certain visible signs of illness (especially facial atrophy, loss of
peripheral limb fat, increased abdominal fat, or weight loss) automatically sent the
message that, "You must be positive." Or, as one man stated, "To an awful lot of gay
men, it says, 'You must have AIDS."'
For many participants, the stigma of having HIVIAIDS increased their risk of
being disqualified as candidates for dating, or as eligible partners for long-term
committed relationships. Having HIVIAIDS significantly diminished their chances for
establishing intimate sexual relationships or finding available, long-term monogamous
partners. One participant described how he was repeatedly rejected because of his HIVpositive status when trying to date other single gay men.
I think, [I've been] stigmatized more in dating than anything else. And sometimes
[I'm] very shocked about the response. It's very upsetting. It's like all of a
sudden, "Don't touch me." You can see the freeze come over them. You know,
"I'll call you sometime." I think probably that's been the toughest thing.
Another man talked about how he felt isolated because the stigma of HIVAIDS limited
his social contacts. When he tried to meet other gay men socially, he was often
rebuffed. He felt that, because many gay men are unable to deal with the possibility of
being in a serodiscordant sexual relationship, it further increased his HIVIAIDS stigma:
"They really just don't want to meet you, because if they get to meet you and like you,
maybe they want to go further. They don't really want to have to do that."
Identifying the Impact of Stigma
To further understand the impact of stigma in the lives of these men, it may be
helpful to reintroduce the concepts of enacted stigma and felt stigma as described by
Scrambler and Hopkins (1986). All but one of men in the study described specific
experiences of enacted stigma, i.e., episodes where they had been directly ostracized,
embarrassed, shamed or rejected, either for being gay and/or for having HIVIAIDS.
However, in explaining the impact of stigma on their self-care, these men mostly
reacted to felt stigma. For example, despite their comfort with being openly gay and
being candid about their HIV status in certain contexts, many of them continued to be
concerned about the potential for the negative consequences of having their HIVpositive status disclosed. Thus the anticipation of enacted stigma, and not knowing
when or how it might manifest was always present. One man's comment illustrated this
point.
It [stigma] impacts my life when I change jobs, and [in] dealings with the
insurance companies, or sexual partners-having
to disclose this information.
Yeah, so it pops up at very random unexpected times. And it normally knocks me
over when it happens, because I'm not anticipating it. And it's a pretty heavy
blow. It sort of snaps you back into reality.
Another participant who was generally quite open about being gay and HIV-positive in
most aspects of his life continued to worry about the consequences of his employer
discovering his HIV status.
They know at work that I serve on the state's advisory committee for HIV. They
don't know in what capacity and they don't know the reason. And I don't feel
comfortable with my employer knowing that status. That can sometimes cause a
lot of pressure and stress. The big worry I have at that point is, OK so I'm going
to pick up on the company insurance. Then what's going to happen? You know, I
have to let the insurance company know my status. There's going to be
questionnaires. Will that go to personnel? If that goes to personnel, does the
president of the company have to know? Do they have to be notified, and how far
down is it going to leak?
Another man who had learned to be candid about having HIV in most contexts
described the impact of stigma as an internalization of the fear of being stigmatized.
I think a lot of it is internalized, worrying about what other people are going to
think, you know. I did that. I didn't tell anybody about me having AIDS. I had the
feeling of rejection, like I was going to be rejected by my friends. They were
going to look down on me: "What an idiot. You knew better than this. You knew
how it happens. You still went ahead and did it. And look where you're at." I
think that more of it is internalized than an actual reality. And that's fearful.
For the men in this study, being open about sexual orientation and HIV-positive status
did not shield them from feeling stigmatized and, in some cases it did not keep them
from internalizing stigma. While most of the men had experienced enacted stigma, it
did not always result fiom disclosure of their status. In fact, most men recounted a
number of experiences where, in contexts that were perceived to be threatening,
disclosure of their status did not result in enacted stigma. Consequently, on a day-to-day
basis, felt stigma and the unpredictability of enacted stigma was what they were
required to endure.
Theoretical Concept 2: Stigma Management
The men in this study described specific behaviors that they used to manage
stigma. Whether the identified stigma was related to being gay or related to having
HIVIAIDS, they had all learned how to assess for stigma threats, evaluate the risks of
any particular threat, and respond accordingly. One man described this process as being
similar to a chess game: "It's like playing chess. You have to stop and think three
moves ahead for every move you do. You're always worrying about reaction, about
necessity, about what you have to do, or what's needed to be done."
Many men drew on their earlier experiences of managing other types of stigma,
and applied the same strategies to the management of HIVIAIDS stigma. For example,
in their process of coming out as gay men, learning how to manage gay-related stigma
served as a type of experiential classroom for dealing with the stigma of HIVtAIDS. As
one man said, "I think that I hadn't even realized until that moment when it really
crystallized that, just by virtue of growing up gay, I learned how to negotiate and
navigate being marginalized." The two African American men in the study also
described how their experiences of being stigmatized as persons of color had prepared
them to manage HIVtAIDS stigma. As one man noted, "Being a person of color you
grow up learning how to deal with adversity and dealing with people who look at you
differently and who discriminate against you."
The stigma management strategies used by these men included a number of
behaviors that ranged from hiding their HIV-positive status or their gay identity to
preemptively disclosing. Hiding strategies were self-protective or defensive behaviors,
which were commonly used as a first-line defense to preserve safety by defending
against stigma threats. On the other hand, preemptive strategies were more proactive
behaviors, where the men directly confronted stigma by preemptively disclosing their
HIVtAIDS or gay status as a way to neutralize stigma threats and avoid having to hide.
These two strategies represented opposite ends of a stigma management continuum
(Figure I), which is consistent with the findings described by Siegel, Lune and Meyer
(1998). Between the two ends of the continuum lay the middle ground, which
represented transitional stigma management behaviors such as gradual or selective
disclosure of HIV-positive or gay status. The middle ground was where men "tested the
waters" from time to time as a way to mitigate the stress of hiding and, at the same time,
minimize the intimidation of open stigma confrontation. Since the majority of men felt
that being gay was much less stigmatizing and therefore represented much less of a
threat, most of their comments about stigma management pertained to having
r
Stigma Management
Self-protection froin Stigina
L
Hiding
Stigma Confrontation
Selective Disclosure
-
Preemptive Disclosure
1
2
Figure 1 : Continuum of stigma management strategies
Hiding
All of these men were acutely aware that HIVIAIDS-stigma was pervasive and
had the potential to negatively impact them by increasing their risk for being
disrespected, shamed, blamed andlor rejected by others. As a result, they had learned
different ways to conceal their HIV-positive status in order to protect themselves from
stigma threats. The most common self-protective strategy used by this group of men
was hiding, i.e., avoiding stigina through concealment or non-disclosure of status. One
participant described how, after his HIV diagnosis, he felt so shamed and worthless that
he hid his HIV-positive status from friends, family, and medical providers for nearly a
decade.
You know, I felt like I was not a valuable part of society anymore. That kind of
stigma is what weighed heavy on me at first. As time went by, 1 got a little inore
comfortable, but always fearful of anyone finding out. So I tried to hide it as long
as I could, and 1 think I hid it for a good ten years.
Another man captured the essence of hiding as he explained how he kept his HIVpositive status concealed in order to avoid the negative consequences of stigma.
I really kept my HIV status secret. Because again, I was just concerned about how
people would react. [I] heard other horror stories, and didn't necessarily want to
test those with people. I was doing what I needed to do keep myself safe.
Other men developed specific routines in order to conceal any evidence that might
expose their status, like not wearing shorts if they had HIV wasting or lipoatrophy in
their legs. One man talked about how he avoided being identified as HIV-positive when
he picked up his antiretroviral medications at the pharmacy.
I go to a single pharmacy. As soon as I get the pills, the pills go into the book bag.
The book bag gets zipped up. And I walk out of the pharmacy. So since it's
downtown, someone walking around with a book bag is second nature.
A few men learned to hide their HIV-positive status by providing alternative
explanations for being ill. For example, one man described how he hid his HIV
diagnosis behind a co-occurring illness, thereby providing a less stigmatizing reason for
having to take numerous medications and go to so many medical appointments: "I find
excuses. I use my excuse of being a cardiac patient. I hide my HIV status behind my
cardiac condition."
In a more extreme form, hiding behaviors included varying degrees of social
isolation as a way to avoid the issue of having to disclose HIVIAIDS status. Many of
these men described experiences where they had restricted their social contacts to some
degree as a way to avoid being stigmatized. This was particularly true for those who had
directly experienced enacted stigma, i.e., being shamed or rejected by others when their
HIV-positive status had become known. One man described how he limited his social
contacts because he was rejected when he revealed his HIV-positive status to other gay
men.
I don't dare to go out socially. I don't dare to date. I don't think that I've been on
a date since I found out that I was positive, because I'm too afraid. I've had sexual
contacts. I tell them [I'm HIV-positive]. I did once and it backlashed on me, and I
said, "Never again."
While hiding strategies provided a way to protect them from stigma threats it also
created stress in their lives. Hiding meant that they had to maintain constant vigilance
about who knows their status-including
who doesn't know, who might know, who
needs to know, and how or when the information might be leaked to others. The risk of
getting caught in a lie added additional stress. One man described how he wrestled with
this process.
Not telling somebody is almost like a lie. So you are trying to keep a part of your
life hidden from people who are part of your life. And, however insignificant,
they're a big part of your life whether a big part or a small part. So when you tell
a lie, you have to remember whom you lied to, what the lie was, and try and keep
everything categorized. You have to be careful not to let it slip to the wrong
person, because you might identify this person as, you know, I think I told them,
but now I don't think I'm comfortable with them knowing. And so it's one of the
hardest things I've had to do in my life.
Another man described how the cost of hiding was a continuous source of tension. He
described the constant vigilance required to sustain the hiding strategies.
Many times you don't really have a choice. You don't have a choice in choosing
who you interact with. There are certain people in the community that you have to
engage with. And so the armor is on and the role-playing begins. And it's tiring.
It's tiring and mentally draining and exhausting.
Selective Disclosure
Selective disclosure was a stigma management strategy whereby men revealed
their HIV-positive status under certain conditions-usually
when the threat of stigma
was perceived to be low, when it was felt that certain persons could be trusted with the
information, and/or when the benefits of disclosure were thought to outweigh the risk.
These men used selective disclosure when they perceived that certain others could be
told about their HIV status and not shame, harm or reject them. As one man stated,
"Once I actually got the diagnosis, [I had] to very selectively decide who I was going to
tell. And part of it was that fear of the stigma." This strategy required continual
assessment of certain persons or social contexts in order to evaluate the potential for
stigma threats. One participant explained this process.
You sort of just scan the environment. You sort of prepare yourself mentally,
almost like fishing. You try to let something slip, a little comment here and there
and see how people are going to respond to it. And if you get some positive
feedback, the armor sort of comes off.
Another man said, "I usually sit back and analyze people. I see where they are at first,
and I'll close up until I know that person. And when I honestly say I know a person, I
might open up a little bit."
While most men were cautious about when and to whom they disclosed, in time
many had disclosed to a few close friends whom they thought were trustworthy. It was
also clear that in some circumstances disclosure was necessary to obtain essential
services or garner the support necessary for managing the illness, such as disclosing to
medical clinicians, pharmacists, and case managers. One man's comment illustrated this
point: "I don't really tell that many people, and the people I do tell are the people I trust
the utmost. Which means that besides my caseworkers and my doctors, only three or
four of my friends know."
It was not uncommon for men to protect themselves from stigma by purposefully
limiting their social contacts to a few people who were either also HIV-positive andlor
to those who were engaged in some form of HIVIAIDS-related work where
confidentiality provided a level of safety. These environments typically included social
services organizations, case management agencies, and consumer advisory groups. As
such, men hid from all but a select few persons or in certain contexts where their safety
could be reasonably assured. A participant who volunteered at his local A S 0 described
how his social network was made up of a few close friends and others who did
HIVIAIDS-related work.
I don't go out socializing a lot because I do have some pretty close friends and
just haven't had an opportunity to expand my social group [to] people who either
aren't living with the disease or aren't working with the disease.
Finally, most of the men had decided that disclosure to sex partners was essential,
not only to protect HIV-negative persons from getting HIV, but also because the
potential for a long-term intimate relationship would certainly be jeopardized by
concealment of HIV-positive status. The following is an example of how men explained
this concept.
If I do find someone that I'm interested in, and their interested in me, and you love
that attention that you're getting and the feeling of having someone be interested
in you and being interested in them. And you don't want to do anything to
jeopardize that, but you know, here comes the next possible rejection. You have
to disclose this information about your HIV status.
Preemptive Disclosure
When the men used preemptive disclosure, they freely volunteered the
information about their HIVIAIDS status before they needed to. One man succinctly
summed up his approach: "I just tell them flat out, 'You're welcome to ask me anything
you want to ask, right down to who I got it from. Feel free. Knock yourself out!"'
Preemptive disclosure was used intermittently by a majority of these men as a way to
neutralize the threat of stigma, andlor to eliminate the stress of hiding. As such, many of
the participants had learned to confront stigma threats by being openly candid about
their status in spite of the negative responses. One man's comment illustrated this point:
I remember early on I would tell people and they would have a bad reaction to it.
It was devastating. I mean it was like total rejection. It was like, "Well I don't
even want to know you." Thanks a lot! Goodbye. Is somebody's life so perfect
that they can sit there and point at me, and say, "You're an alcoholic; and you're
living with AIDS; and you're a homosexual?" So whether it just builds up callous
in your emotional being, or whether you just eventually just build up enough
confidence in yourself to not be affected by the reaction. You just say, "Fine,
asshole. I don't have to know this person. I still feel good about myself and I'm
moving on."
Some men preemptively disclosed in order to avoid being caught in a situation
where they had to evaluate the risk and benefit of disclosure. In these situations, men
used preemptive disclosure to avoid the stress of having to figure out which people or
situations were safe or unsafe. Being upfront about their status before there was a
chance to hide effectively eliminated the element of surprise and having to guess at
what the threats might be. This strategy often exposed any potential risks and benefits at
the outset, which was the preferred approach for some of the men. One participant
summarized this concept.
I think one of my coping mechanisms in and of itself was being public. It was to
stem it off in the beginning. If I was going to face stigma, if I was going to see
any adverse reaction, I would rather know right up front what people [and] how
people were feeling.
Some men used preemptive disclosure as their standard approach, because it just felt
normal. One man explained that preemptive disclosure was important to him because
concealing his gay identity or his HIV status perpetuated differentness rather than
normalcy.
That's important because I feel personally that if you as the individual, the one
who is gay or the one who has HIV, [if you] look at yourself as something
abnormal, as something different, you're setting yourself up to be different, or to
feel different.
Most of the men who used preemptive disclosure had previously experimented
with selective disclosure as a prelude, thus building up a level of confidence about
disclosing their HIVIAIDS status. One man who had come to be mostly open about his
status described his progression as a process of trial and error.
I find myself fluctuating between being able to test the waters more often and then
pulling back and needing to protect myself emotionally. But I keep trying. And
when I do try, sometimes I feel really secure in it despite whatever way it plays
out, and sometimes I don't, and end up having to protect myself and pull back
again.
In some cases these men preemptively disclosed their status indirectly by working
or volunteering in contexts that had potential to give them a lot of public visibility.
Several men who made a point to say how selective they were about disclosing their
status to others on a personal level also described how they were completely open about
being HIV-positive in a number of public contexts. Men who used this type of
preemptive disclosure felt that it was a way to confront stigma threats by disavowing
any shame or self-deprecation associated with being HIV-positive. One man provided
this example.
I work in my two separate volunteer connections and fight for the people that are
living with the disease and for the programs that are providing the services. I
work with the State of Maine HIV Prevention Planning Group and I am part of a
case management program at [institutionIASO]. And I'm an advisory board
member for that program.
Another man who stated that he was typically very selective about when and to whom
he disclosed his status, actively fought to enact HIVIAIDS-related legislation at the
state level. In the process he preemptively disclosed his HIV-positive status to
legislative committees, insurance carriers, state administrators, and others. Again, this
was one way that some of the men openly confronted the stigma by challenging the
injustices associated with their illness. Regarding this decision to preemptively disclose,
he said,
Of course there were a lot of strangers in the room. But I didn't care; it's my life,
you know. It's my life, and I don't like to have other people suffer from
institutionalized discrimination or idiocy if they don't have to. If I can help
change that I want to.
A noteworthy finding in this analysis is that how and when these men used the
different disclosure strategies along the continuum frequently varied depending on the
relative or contextual circumstances and their perceptions of the risklbenefit. There
were several examples in the data where men described how they readily disclosed their
HIV status in some contexts, but hid their status in others, depending on whether they
perceived the outcome to be threatening or beneficial. One man underscored this point.
Even as an openly gay man, it's still a daily process, because there's always
somebody new, somebody out there to encounter. Then you have to handle the
situation as it arises. There's no right way. There's no wrong way. It's an
individual way. And that's how it is with me with HIV.
Status disclosure depended on a number of factors that helped them determine the
risk or benefit. These factors included their personal assessment of physical and
emotional safety, the nature of their relationship to the recipient of the information, and
the social context. For example most of the men who stated that being quite open and
honest was the usual way that they handled information about their status also stated
that they used hiding or concealment strategies when they felt there was a potential for
physical harm or a threat to their livelihood. One participant explained it this way: "If
you think that the relationship [with someone] is going to reach an intimate level where
you're going to be talking about personal issues, yeah that's one of them that I am
comfortable [disclosing]." This same participant also recognized that he was not willing
to disclose in situations where he perceived that the consequences of disclosure
outweighed the benefit.
If it threatens my livelihood, if it threatens my life, if it threatens my existence,
I'm not going to give myself in to that much vulnerability to let that happen. I
mean there's trust and there's a threat.
Another man, who had lived with an AIDS diagnosis for almost twenty years,
commented that he had gradually come to be very relaxed and open about both his HIVpositive status and being gay. Early in the interview he talked about using preemptive
disclosure most of the time, explaining how being openly gay and openly HIV-positive
was the norm for him. He stated, "Generally speaking I've been pretty out about both of
them. The fact that I'm gay is not a secret and most people who know me know that I
have full-blown AIDS." Later in the interview he explained that, despite his overall
sense of comfort with preemptive disclosure, it was not the only strategy he used.
Well, first of all. I don't feel a need to tell people that I have AIDS. Or even that
I'm gay. I mean, you know, on a day-to-day dealings with individuals. But unless
I get to know someone better, and they told me things about them, I feel an
obligation they ought to know who I am too. Who I tell is based upon my level of
how I feel about them. Whether they're going to participate in my life and so
forth.
In listening to these men talk about stigma, it became clear that their stigma
management strategies were not fixed. They moved back and forth along the entire
continuum, selecting certain strategies or combinations of strategies, depending on the
social context and their assessment of the relative circumstances. While some men used
particular strategies more readily than others, how they responded to stigma depended
on their individual perception of the stigma threat and the risk or benefit of disclosure.
Theoretical Concept 3: Striving for Normalcy
When asked to explain how stigma influenced their self-care decisions and selfcare behaviors, these men described a process that illustrated how they used the various
stigma management strategies previously described as a means to maintain normalcy in
their lives. In other words, finding ways to have a normal life was the goal of stigma
management, and it seemed to be the driving force in how the men sought to maintain
health and well-being. In response to the question about how stigma affected how he
took care of himself, one man's comment captured the essence of this concept.
I want to live a normal life. I want to be as normal as I possibly can. I have fun. I
want to continue having fun. And I don't want to be halted; I don't want to let my
mind take over my body, you know. I think if you believe you're sick, then you're
sick. It's the key, to feel normal."
In discussing how he dealt with the stigma of having HIVIAIDS, another man
underscored the significance of preserving a sense of normalcy: "Why turn it [being
HIV-positive] into something deeper, or something that needs special attention. It's just
part of my life. Just let it flow."
Maintaining Balance/Normalcy
In response to gay- or HIVIAIDS-related stigma threats, finding ways to maintain
balance or a sense of normalcy in their lives was most significant for these men. Having
a "normal life" meant managing the life-disruptive consequences of HIVIAIDS (and to
a lesser degree, the consequences of being gay) without losing the balance or
equilibrium that characterizes normalcy. Most of these men tried to see themselves as
normal by adjusting to the challenges and limitations created by stigma, and also by
changing the perspective they had on their own lives. In discussing the impact of
stigma, one man described how he naturally accommodated to particular social contexts
as a way to maintain a sense of normalcy.
I mean you don't behave with your boss like you do with your buddies. And you
don't behave with your buddies like you do with your girlfriends or boyfriends,
and so on and so forth, with your father, or this one or that one. You act
accordingly to your surroundings. And that's normal. That's not only normal but
it's good. It's good for you and the other person around and the people there.
You're doing what's expected and yet, within that context.
Another participant had come to the conclusion that he could not let having HIVIAIDS
and being gay have power over him because it was not healthy. In describing how he
responded to stigma, he explained the importance of redefining his own life as normal,
i.e., like everybody else's.
If spent my life worrying about what other people thought of me, it would drive
me underground, or it would drive me to suicide. I realized that my life hasn't
been any better than anybody else's or any worse than anybody else's.
By describing his life as being no better or no worse than anybody else's, this man had
redefined his life as normal. Interestingly, he also believed that maintaining normalcy
was key to his survival. Another participant thought of stigma management as an
adaptive or evolutionary process, the aim of which was to have a life of normalcy. His
description points out the normal tendency to defend against stigma threats by adapting
to the obstacles and limitations produced by stigma. His statement illustrates how the
daily management of stigma threats becomes the norm:
It [stigma] becomes something that you just learn to live with, so a lot of the stuff
doesn't stand out. The way we accommodate to the world and its perceived
unfairness is just natural. There's a way of deflecting it that becomes normal life.
Another participant felt that he was not living a normal life because certain parts of his
life had become disconnected from society because of the stigma associated with
HIVIAIDS. Like most of the men, he made adjustments in his life and saw fitting into
and contributing to society as a goal.
My reconnecting is an important part of being me, just being a part of the society.
I live here. I work here. I have a business that says my name. And I pay taxes to
the government. And I want to complete the cycle. And I would like a lot more
for myself. I'm not dead yet. And I contribute every day to my well-being.
What normalcy meant to these men was the freedom to share parts of their lives
with others without feeling judged, discounted or threatened, without abruptly halting
ordinary conversations when they revealed that they had HIVIAIDS (or that they were
gay men), and without having people run away from them, physically or emotionally.
One man described what it was like to have a normal interaction with someone with
whom he did volunteer work. He had disclosed his HIV-positive status to her in a casual
conversation when they were discussing the types of volunteer work they each had done
in the past.
And I remember, her [sic] and I were just having a conversation in the break room
one day about some of the different organizations we were involved in. And I
said, "I am HIV-positive." She said, "Yeah, I've done some volunteer work too
with the AIDS Alliance. I used to live in Southern California and I had some good
friends that were gay, that unfortunately I lost to HIV and AIDS." And that was it,
you know. It wasn't a big deal. And it was just two normal people having a
normal conversation about aspects of their lives like any other person would. And
now we both serve on the same board of directors for the same charity
organization. There was never a fumble there.
Impact of Stigma on Self-care: The Role of Social Support
In response to the research question about how stigma played a role in how they
took care of themselves, it was notable that these HIV-positive gay men described selfcare in varying ways. A few men described taking care of themselves in terms of their
physical health and talked about taking their medications properly, eating right,
exercising, and keeping their medical appointments. For example, one man described
how he attended to his physical health as a way to minimize the visible and stigmatizing
manifestations of HIVIAIDS.
1 look in the mirror every day and I say, "Is it showing?" You know, "Can we
pass today for not being HIV-positive?" So I've worked very hard at maintaining
good health. I don't smoke. I drink only socially. I don't drink heavily. I try and
eat the right foods. I exercise. I try to keep as lean as I can so the face matches the
rest of the body. And that's not a bad thing because it keeps me healthy.
Despite the numerous stigma threats affecting these men, they were clear that stigma
did not keep them from following the advice of their health care providers or from
taking their HIV medications. For example, even though they recognized the potential
threat of exposing their HIV status by walking into a medical clinic, applying for
insurance, or picking up their HIV medications at a pharmacy, men felt that maintaining
their physical health was worth the risk of being stigmatized. One man's comment
summed it up: "I have to take care of myself, and I don't let anybody get in my way
when it comes to that."
While a few of the men discussed self-care in terms of their physical health, all of
them thought of self-care in a broad or holistic way and described self-care activities in
terms of sustaining an overall balance and equilibrium in their lives. In addition to
maintaining physical health, their self-care behaviors included activities such as
maintaining emotional health, finding ways to minimize stress, getting advice from
others, and seeking affirming social networks. One participant stated that, while the
stigma of an HIV diagnosis made him ashamed and angry at first, it eventually helped
him to realize that staying healthy was more than just taking care of his body. It also
included preserving emotional health and finding a sense of purpose in his life.
I was so ashamed at being positive and angry at the world. But it's taken me a
long time to make me realize that it was a blessing in a sense, because it made me
see what life is and what life should be. You have to find ways to help others to
not go through the pain that you went through.
Another man explained that he maintained his health by not letting the physical and
social burdens of having HIVIAIDS overwhelm him. For this participant self-care was
about recognizing one's limitations and staying in balance.
I believe staying healthy with a terminal illness is to think that you're healthy, and
you continue, and you don't let it take over you. You continue to do all that you
can do. But you have to learn what your limitations are too. Because I found that I
was doing too much and I got burnt out. And I got sick. So there's an area that
you have to stop. Balance out your life.
As men talked about how they took care of themselves, the role of social support
emerged as an integral component of their self-self care. All the men described how
seeking social support naturally became a part of their self-care. For example, several
men had become involved with AIDS service organizations (ASO), which placed them
in environments that were supportive and mostly free from stigma threats. This not only
buffered much of the stress brought on by stigma but also allowed them to be involved
in meaningful work that further helped them preserve emotional health. As one man
stated, "I think that the volunteer work has really helped me a lot in learning to live with
the disease. I'm always growing from what I learn from within my volunteer work."
Other men believed that part of their own self-care included being there to support
others who struggled with issues around living with HIVIAIDS. One man who had lived
with AIDS for many years described his regular involvement with an HIVIAIDS
support group.
I go to the support group mainly to be there for somebody who is newly infected,
you know. And I do have a few years' experience. And largely to let them know
that they can live. But especially when you're positive, I think you need to know
you can count on somebody.
Several men mentioned the significance of informational support as a part of their
self-care, i.e., getting advice from others who were also HIV-positive or from those who
were close to someone with HIV-such
as friends, family members, and intimate
partners. One man stated,
You can talk to people and find out how they've been. And you know, quite often
things will come up: "Well I have this, or that." And you may have had something
or you know of somebody who also had a reaction to that drug, or maybe one of
the other drugs is causing that.
Another man commented that an important part of his self-care included informational
support, "especially [from] people who have HIV or who've had partners with it." He
found that others who were infected with HIV or affected by HIV, often "have a wealth
of information about coping skills, and treatments, and alternative therapies." He went
on to say, "Whatever care I've received, I've learned a lot more from other people who
have also been receiving either social services or any kind of treatment. And even stuff
about disclosure. You know different strategies for disclosing." When asked to talk
about how important he felt social his social support network was, particularly with
regard to his self-care, he responded, "I'd be dead without it."
To maintain a sense of normalcy in their lives, these men sought out individual
people, groups, social settings, or environments where they could feel safe and
supported, and they tended to avoid persons, environments or contexts where they felt
threatened by stigma. Thus achieving normalcy in order to manage stigma was not only
about finding ways to protect their physical and emotional safety, but also about
maintaining a sense of community and finding sources of social support. One man who
had lived with HIV for twenty years responded to the question about how stigma had an
impact on his self care by stating, "I don't think it has an impact on me taking care of
myself by taking the meds and things. But it does in picking my support group, or the
people that I'm really going to count on for support."
In describing their responses to stigma, all the men in this study explained how
they sought out environments or contexts that were stigma-protective, i.e., where they
were affirmed as normal persons. Being in environments that afforded protection from
stigma effectively allowed for more open and/or preemptive disclosure and less hiding.
As an example, one man described how he had gravitated toward an environment that
was essentially stigma-free in order to maintain a sense of normalcy in his day-to-day
life.
[M]y personal life is much more around the disease now. And the people I work
with and socialize with, and the close friends that I've had for years, they know.
And so I don't have any problems with it [stigma].
Another man explained how he eventually sought out a supportive environment that
included other HIV-positive persons because he found it was easier to cope with stigma
by being in relationships with others who shared a common bond and the common
struggle.
One of the ways that I chose to get support was to go to [name of agency]. That
was not necessarily my social milieu. Yet something felt very comfortable. We
were all dealing with the same thing. So, although there was this wide spectrum of
gay culture that was largely represented, there was the one common
denominator-that
we were all facing this life-threatening illness. And so that
really started, I think, finding support amongst peers.
A participant who had lived in a rural area with his male partner of many years
explained the significance of identifying a supportive social context. His continued
involvement in a network where he felt accepted and included was important for
managing stigma.
We don't have a lot of participation in bars. We don't have an awful lot of gay
friends. We have some very, very close friends but they don't live right near us.
So there's distance. As far as coping [with stigma], I do more volunteer work
around the disease so I'm with people who work with it and deal with it on a daily
basis.
While other men had social networks that included trusted friends who were HIVnegative and some non-gay friends, most of the social support networks described by
these men included a nucleus of other HIV-positive gay men. In addition to selectively
disclosing only to certain persons as a form of protection from stigma, their social
networks also provided a source of support, as one man noted.
I have a lot of friends, mostly people who are positive. [We] get together for cards
and things. And they're really nice and friendly and from all kinds of walks of
life. But our commonality is more being positive, even though we are all gay. It's
really being positive that has brought us together and kept us together.
By connecting with others who could be considered allies and those with whom
they could maintain supportive relationships, these men felt that they could let their
guard down because stigma threats were minimized. For example, men often
commented on how "normal'' they felt when they attended an annual weekend retreat
for PWHAs. Many of them regularly participated in this weekend retreat because it
gave them complete freedom from having to hide and a temporary reprieve from the
stigma threats that otherwise pervaded their lives. One regular attendee at the weekend
stated, "Everybody knows and everybody there is just about, except for some of the
partners. And so, the pressure is off. You don't have to worry about hiding anything.
And that's a great feeling." Another man said, "You go around freely without any
problem. I didn't feel as guarded. I didn't feel as withdrawn when I was there." Because
these environments were essentially devoid of stigma threats, men were much more
relaxed about being gay and about their HIV-positive status; moreover, because
disclosure of status was a non-issue in such environments, the men had a sense of what
it was like to feel normal. The HIV-positive gay men who attended the retreat weekend
frequently commented on this experience, stating how a weekend of feeling normal was
important to their emotional well-being. One man said, "When I leave here, knowing I
can come back to these weekends, it keeps me sane."
While seeking supportive environments and safe contexts was a part of their selfcare, these men also avoided environments where they believed they were severely
threatened by stigma. Several participants commented on how they made changes that
took them out of contexts where they were threatened by stigma or where there was no
support. For example, one man described how he moved to a different part of the state
because he felt that being known as an HIV-positive gay man where he was living was
so threatening.
If I had come out about my status where I was living, my God, they probably
would have burned me right out of town. So you know, you really have to be
somewhat careful for your own safety; for your own livelihood; for your life in
the perspective you have about life. You really have to manage and control.
Another man explained how he also made a geographical move to a more supportive
community in order to escape from an environment in a different part of the country,
which he described as "extremely stigmatizing." He believed that, had he continued to
live in a place where having HIVIAIDS was so stigmatizing, he would not have
survived. He emphatically stated, "I'd be dead. I'd be dead. I honestly believe that." As
a result of being forced to hide their status in one contextlenvironment, these men
reduced stigma threats and the need to hide by gravitating to safer and more supportive
contexts. Another man said, "I chose to put myself here and everybody around me has
been supportive. And people who aren't, I avoid. I choose not to be around the negative
attitudes, because it's not good."
In their struggle to achieve normalcy, the participants in this study responded to
stigma threats by integrating stigma management into their lives almost as though
stigma were another symptom of their illness or condition. In other words, they
normalized by accommodating to the life-disruptive problems posed by stigma in the
same way they learned to manage other intrusive HIV-related symptoms, such as
B
fatigue, loss of appetite, or many of the common side effects of their HIV medications.
Through a gradual process of normalization, many of these men also changed the lens
through which they viewed the stigmatizing attribute (being gay and/or having
HIVIAIDS) by downplaying its discrediting significance and further reinforcing their
perceptions of normalcy. As one (previously quoted) participant stated, "[Ilf you believe
you're sick, then your sick."
By normalizing, the men's stigma management strategies often shifted toward the
preemptive end of the continuum as they gained more confidence about disclosing their
status. One man explained how he began to disclose more openly because over time he
realized that hiding was neither normal nor healthy.
It becomes important [to disclose] because I'm not hiding. I'm not hiding. I'm just
not in hiding. And that [hiding] is something that's not only degrading, but I think
it could have an effect on the HIV process itself within my body.
This same participant went on to explain how being able to openly declare his status
had started to change his view of himself, stating, "I think that I am actually better
fulfilled by saying it, just saying it." Another man believed that, by voluntarily
disclosing his status, he was better able to deal with the stigma of HIVIAIDS because
his candor about having AIDS and being gay eventually made other people more
comfortable when they were around him. He stated that, because others acted more
normally toward him, it reinforced his own perceptions of normalcy: "Being open about
it makes people more open around me. It makes for a more comfortable situation. I
mean, just to make people comfortable with you being ill helps you deal with it also."
Striving: for Normalcy as the Central Category
In explaining how stigma had an impact on their self-care behaviors, the men in
this study described a process whereby stigma management, normalization, social
support, and self-care were interdependent concepts. These men continually managed
stigma threats by means of various hiding and/or disclosing strategies in order to
normalize. Hiding their status (i.e., having HIVIAIDS or being gay) provided
immediate self-protection and allowed them to pass for normal by concealing their
socially discrediting attributes from others. By hiding they blended in, appeared normal
like everyone else, and shielded themselves from stigma threats. One (previously
quoted) participant described this as, the "invisible barrier between you and everyone
else." On the other hand, disclosing their status also provided a way to normalize by
helping them identify persons they could trust, and with whom they could align in a
network of support. Finding allies who ignored the stigmatizing attributes or saw them
as inconsequential to social status enabled these men to feel and act normal. Moreover,
as the participants discussed the impact of stigma on their self-care, they consistently
pointed out the role of social support as an important component in how they took care
of themselves. Thus it became clear that normalizing was the overarching goal of
stigma management, and both social support and self-care were significant components
in the normalization process.
A conceptual model illustrating how these men managed stigma and how it
affected their self-care is shown in Figure 2. The model illustrates how stigma
management impacts the normalization process, which includes the two key elements of
self-care and social support.
Perceived Stigma Threats
Stigma Management
Self Protection from Stigma
Stigma Confrontation
4
Hiding
b
Selective Disclosure
Preemptive Disclosure
v
Striving for Normalcy
Self-care
Social Support
Figure 2: Conceptual model showing the process of stigma management and self-care.
As the men perceived stigma threats, they used a continuum of stigma management
strategies that lay along the continuum fiom hiding to preemptive disclosure. Specific
stigma management behaviors, i.e., hiding vs. disclosing, depended on the context and
the perception of risk. However, the main goal of stigma management was to normalize,
a process that included self-care and social support. As previously noted, self-care
behaviors very often included maintaining strong social support networks; therefore,
these two concepts were integrated as part of the normalization process.
As the model shows, striving for normalcy and stigma management strategies
were interdependent components in a continuous feedback loop. Therefore, part of the
model is recursive, showing how normalcy, in turn, had an impact on the selection of
stigma management strategies. For example, while stigma threats were real and their
effects painful, these men continually strived to be more honest about their status by
using more open disclosure. One man described how, despite numerous experiences of
rejection, his goal was to be honest about his HIV status.
[I] keep working on this goal of being able to be upfront all the time with
everybody. That's the goal that I have in mind. Well, the goal is to, in appropriate
arenas, be able to be up front and not feel like I'm hiding behind anything. You
know, be upfront when appropriate around me having HIV, [with] friends or
loved ones, or casual sex [partners]. Sort of share my experience. And not have to
feel fear around rejection or what they might think.
As men strived to be more open about being HIV-positive or gay, they
understandably gravitated to more supportive networks, which, in turn reinforced their
tendency to disclose more openly or preemptively. One man described how his process
of striving for normalcy reinforced his use of more preemptive disclosure.
I disclose my status now more normally than ever. I disclose my status where it's
not even really necessary. I find that it's easier for me to be up front about my
HIV now, more so than it used to be. And I find that the response has been good.
And I have no reason to stop doing that.
As such, managing stigma through more open disclosure changed the lens through
which many of these men viewed the stigmatizing attribute (being gay and/or having
HIVIAIDS) by downplaying its discrediting significance and further reinforcing their
perceptions of normalcy.
Validating the Theoretical Fit
Strauss and Corbin (1998) suggest that grounded theorists ask a number of key
questions about their theory to validate how well it fits with the raw data. For example,
does the theory integrate of all the concepts and categories generated from the data?
Was it logically and consistently drawn from the raw data? Does it fully explain the
process under study, including any negative evidence or variations? The grounded
theory generated by this study meets the criteria suggested by Strauss and Corbin. As
previously discussed, it integrates all of the categories and theoretical concepts found in
the data to form an explanatory whole. It is completely grounded in the data that was
elicited from the research participants. Perhaps most importantly, it provides an
explanation of how the self-care behaviors of HIV-positive gay men are affected by
stigma: by finding ways to normalize. This theory also accounts for the nuances and
variations found in the data. For example, as illustrated in the model (Figure 2), whether
men chose to hide or disclose their stigmatized identity in any of the contexts described
was driven by their need to normalize. Men who were completely open and preemptive
about being gay or HIV-positive found normalcy in supportive social networks that
were affirming and validating. i.e., by seeking environments where being gay or having
HIVIAIDS were no longer discrediting attributes. The men who felt that they were
immune to stigma had gradually changed the lens through which they saw the
stigmatizing attribute by minimizing its significance thus reinforcing their self-
perception of normalcy. Given its consistency with the criteria suggested by Strauss and
Corbin, it can be said that this theory is empirically grounded.
Chapter Summary
For this group of HIV-positive gay men, striving for normalcy emerged as the
central category across the entire set of interviews and focus group discussion. These
men sought to maintain a sense of normalcy in their lives by adjusting to the physical
and the social limitations of being HIV-positive and/or being gay in order to feel like
they were still a valued part of society. They responded to the threat of HIVIAIDS
stigma and gay-related stigma by engaging in a number of stigma management
strategies to protect themselves from being negatively labeled, shamed, or rejected by
others. Their stigma management included various hiding and/or disclosing strategies in
order to achieve and maintain a sense of normalcy. Hiding strategies were defensive or
protective behaviors, commonly used as a first-line defense to preserve safety by
shielding them from being discovered and allowing them to pass as normal. On the
other hand, disclosure strategies allowed them to garner more social support, which
ultimately enabled them to feel and act normal because of the safety afforded by the
social network. When the participants discussed how they managed stigma, they
consistently pointed out the role of social support as an important part of their self-care.
As the participants described the impact of stigma on their self-care, it became apparent
that normalizing was the overarching goal of stigma management. It was also clear that
both social support and self-care were integral components of this normalization
process. The next chapter discusses these results in light of the extant literature and
draws a number of conclusions about the grounded theory.
Chapter 5
CONCLUSIONS
Introduction
This chapter examines the findings of this study in light of previously published
empirical and theoretical literature and draws conclusions from the results discussed in
Chapter 4. The HIV-positive gay men in this study were all affected by the presence of
stigma in their lives. They found ways to adapt to the obstacles and limitations it created
through the use of stigma management strategies in the same way they managed many
other challenges of having a chronic illness. It is postulated that HIV-positive gay men
manage the stigma associated with HIVIAIDS and/or being gay as part of a larger
process, the goal of which is to have a life that is normal. Thus the need to normalize
became the central explanatory category in this grounded theory analysis. In addition,
both self-care and social support were identified as key components of this process. In
this chapter, the major findings, which include the central process of normalizing, are
discussed in light of the pertinent literature in this area
Perceived Stigma Threats
In listening to the HIV-positive gay men in this study talk about their experiences,
it was apparent that stigma was present in their lives. All of the men had experienced
enacted stigma for being HIV-positive and, to a lesser degree, for being gay; however,
for most of them, their day-to-day burden was felt stigma (Scrambler & Hopkins, 1986).
Although a few of the men believed they were immune to the effects of stigma or that it
had become insignificant to them, all the men recognized that stigma was pervasive,
and they all described how they adapted to it in a number of ways. Because this finding
is consistent with the existing literature on how both individuals and families cope with
the challenges of HIVIAIDS, it was not surprising that these men identified stigma as a
significant burden in their lives.
An unexpected finding in this study was the degree to which these men felt
stigmatized (for having HIVIAIDS) by other gay men. They found this particularly
troublesome, especially those men who were dating andlor meeting other men for sex.
Many were struck by the discordance between their natural inclination to seek out other
gay men as friends, potential partners, and sources of support, yet also seeing them as a
source of stigma. As one man stated, "I cannot understand why gay men cannot be
really supportive and friendly to each other, just because we're gay. We have that in
common."
Feeling stigmatized by other gay men for having HIVIAIDS has also been noted
by other researchers (i.e., Siegel & Krauss,l991; Siegel, Lune, & Meyer, 1998). In
addition, Kowalewski's (1988) study showed that many HIV-negative gay men
deliberately separated themselves from HIV-positive gay men to avoid the "double
shame" of being gay and associating with those who were deviant, promiscuous, sick or
dying. Weitz (1 998) also found that some HIV-negative gay men in her study protected
their vulnerability to HIVIAIDS by framing it as a disease that "attacks only physically
weak and 'promiscuous' persons, who choose their partners unwisely" (p. 273).
Several factors might explain why the HIV-positive gay men in the current study
felt greater stigma coming from other gay men. First, all the men in the study had selfidentified as gay and felt comfortable disclosing their sexual orientation in most aspects
of their lives. As a result, they had developed numerous personal contacts with other
gay men through friendships, dating, casual sex, volunteer work, political affiliations, or
socializing. Given that they were part of a subculture of gay men in a sparsely populated
state where two-thirds of all HIV infections are attributed to MSM (Maine Department
of Human Services, 2005), it makes sense that the gay community would be the social
milieu in which their HIV-status is most likely to be known. Second, most of the men in
this study who engaged in sex with other men said that they consistently disclosed their
HIV-positive status to their sex partners, thus revealing their status to persons who may
in turn reveal that information to other gay men. Third, some research (i.e.,
Kowalewski, 1988; Weitz, 1998) has shown that HIV-negative gay men do distance
themselves from HIV-positive gay men in order to avoid tribal stigma. According to
Goffman (1 963), "In general, the tendency for the stigma to spread from the stigmatized
to his close connections provides a reason why such relations tend either to be avoided
or to be terminated" (p. 30).
It is worth mentioning that the men who displayed visible manifestations of
HIVIAIDS, particularly facial lipoatrophy, had fewer options for concealment. Alonzo
and Reynolds (1 995) point out that when HIVIAIDS becomes harder to conceal, the risk
of enacted stigma is greater. As one participant said, "People just look at us and they
know we've got it." While some men were still able to hide their HIVAIDS diagnosis
behind other illnesses, they all knew that this strategy would not work with those who
were familiar with the illness, particularly other gay men. Thus they ran the risk of
being discredited as someone with HIVIAIDS in the presence of some people and in
certain contexts. Moreover, these men felt particularly vulnerable to the stigma of being
characterized as a person who is sick. One (previously quoted) participant with severe
facial atrophy described how his clients would ask him, "Are you OK?" It was not
surprising that the men with visible signs of HIVIAIDS sought treatment for facial
lipoatrophy, because it would allow them to hide the outward signs of HIVIAIDS and
reduce the possibility of enacted stigma threats and return their control over the
disclosure options.
Stigma Management
The use of concealment as a first-choice strategy along with numerous other
tactics for disclosing HIV-positive status is well-documented in the HIVIAIDS
literature. For example, research done by Bennett (1990), Lewis (1999), Siegel and
Krauss (199 I), Siegel, Lune and Meyer (1998), and Weitz (1 990) consistently found
that HIV-positive gay men engaged in a variety of hiding and selective disclosure
strategies to protect themselves from stigma threats. Concealment of status, covering
visible signs of illness, isolating, and confiding in only a few trusted allies were
common strategies reported by HIV-positive gay men in this early research. The HIVpositive gay men in these studies also found some protection from stigma by seeking
supportive and affirming social networks that typically included other HIV-positive and
HIV-negative gay men.
This study replicated a number of findings shown by Siegel, Lune and Meyer
(1998), who found that HIV-positive gay men used a continuum of stigma management
behaviors that ranged from reactive (e.g., concealment, selective disclosure) to
proactive (e.g., preemptive disclosure, social activism). They also found that stigma
management strategies were highly dependent on the social context. Their analysis
further suggested that more proactive strategies represented attainment of higher
identity levels and greater "sense of control over one's life" (p. 21). However, unlike
the present study, their research did not directly examine the extent to which stigma
management influenced adaptation to HIVIAIDS, and the need to achieve normalcy was
not identified as a unifying concept. Thus the grounded theory developed in this study
extends the findings of this previous research by further demonstrating how stigma
management is tied to self-care through the process of normalizing.
The use of various stigma management strategies by the HIV-positive gay men in
the current study is consistent with other research evaluating the impact of stigma on
HIV-positive women (Carr & Gramling, 2004; Clark, Linder, Armistead, & Austin,
2003; Moneyham et al., 1996; Sowell, Lowenstein, et al., 1997), as well as studies done
with mixed gender populations, and populations of HIV-positive gay and non-gay men
(Agne, Thompson, & Cusella, 2000; Limandri, 1989; Mallinson et al., 2005). These
studies also consistently found that PWHAs perceived HIVIAIDS stigma as threatening
for the same reasons cited by the men in the current study, i.e., fear of being rejected,
devalued, blamed, or shamed. To protect themselves from stigma threats, the PWHAs in
these studies made tactical decisions about whether to disclose information about their
HIV-positive status and to whom. They also used hiding and a number of selective
disclosure strategies and looked for trusted allies andlor supportive and affirming social
contexts. Given this consistency, the current study extends the findings of the previous
literature on HIVIAIDS stigma management. In addition, the results of this study situate
stigma management within a larger process of normalizing (discussed below), and also
point to an interdependent relationship between stigma management, social support and
self-care.
Self-care
Because of advances in the treatment of HIVIAIDS, particularly since the
introduction of protease inhibitors in the mid 1990s, HIVIAIDS has been transformed
from a terminal illness into a chronic medical condition. Like persons with other
chronic illnesses, PWHAs learn to cope with the day-to-day challenges imposed by
their illness. This includes managing the common physical symptoms (e.g., fatigue,
peripheral neuropathy, anorexia), adhering to pharmacotherapy, managing the side
effects of antiretroviral medications, and coping with the emotional distress of living
with an incurable and communicable illness. In discussing a chronic care approach to
health care delivery, Bodenheimer, Lorig, Holman and Grumbach (2002) aptly point out
that patients' adaptation to their illness by developing self-care practices is inevitable.
"The question is not whether patients with chronic conditions manage their illness, but
how they manage" (p. 2470). Moreover, when an illness carries the additional burden of
stigma, which is associated with several other chronic conditions such as mental illness,
cancer, or epilepsy, the day-to-day self-management of the illness must also include
dealing with the obstacles and limitations imposed by stigma. As one participant
pointed out, "It [stigma] is just there. It's just always there." Given this perspective, it
may make sense to think of stigma as a symptom of HIVIAIDS, in the same way that
chronic pain is a symptom of arthritis, and dyspnea is a symptom of lung disease. Like
the other symptoms associated with chronic illness, stigma becomes an integral part of
the total illness experience; and like other symptoms, it must be managed.
In the last decade the concept of self-care has emerged in the HIVIAIDS literature,
to describe a wide range of activities that PWHAs use to take care of their health. In
listening to how the men in this study described the impact of stigma on their self-care
behaviors, it became clear that their understanding of self-care was broadly defined.
These men talked about caring for themselves in ways that went beyond attending to
their physical health and relying solely on the medical advice they received from their
health care providers. Their descriptions of self-care mostly centered around sustaining
balance and equilibrium in their lives, maintaining emotional health, minimizing stress,
and establishing affirming social networks. Previous research on the self-care behaviors
of PWHAs has also described a variety of behaviors that include stress reduction,
finding balance in one's life, adopting healthy lifestyles, and dedicating oneself to
wellness (Allan, 1990; Barroso, 1995; Chou, Holzemer, Portillo, & Slaughter, 2004;
Lovejoy, Moran, & Paul, 1988; Sowell, Moneyham, et al., 1997). For example, in a
study by Plach, Stevens and Keigher (2005), HIV-positive women described caring for
themselves as finding a balance between "nurturing physical health" and "sustaining
heart mind and soul" (p. 540). Other studies on self-care have focused on how PWHAs
self-manage specific HIV-related problems such as diarrhea (Henry, Holzemer, Weaver,
& Sotts, 1999), and emotional responses to being HIV-positive, such as anxiety and fear
(Kemppainen, et al., 2003). Taken together, these studies demonstrate that PWHAs use
a wide variety of self-care behaviors to manage the daily challenges that accompany
HIVIAIDS. However, it is worth noting that, while social support emerged as a
prominent component of self-care in the current study, it is infrequently mentioned in
this earlier research on self-care. This inconsistency may have more to do with
methodological approaches and the way in which research questions are framed. For
example, participants in this study were asked to describe how stigma had an impact on
their self-care, in contrast to other studies where participants were asked to describe
their self-care behaviors.
The Role of Social Support
The need for affirming and supportive social networks was a strong theme across
all of the interviews and in the focus group. Social support emerged as particularly
central in this study because the participants described it as essential to taking care of
themselves, especially in response to how they coped with stigma. As one man
emphatically stated, "You do need support. You can 't isolate, or you'll get depressed."
These men believed that, despite the risks of being rejected or shunned by disclosing,
there was a strong tendency to reveal their status to others, especially to persons outside
of clinical settings who share many of the common struggles. Furthermore, the men saw
disclosure as the main pathway to an affirming social support system. One participant
stated this clearly: "I think you always want to tell people. You always want to find a
support system. You always want to tell." This finding extends some of the previous
research showing that HIV-positive gay men actively seek out social support to help
them self-manage their illness (i.e., Lesserman, Perkins, & Evans, 1992; Pakenham,
1998). That the men in this study underscored the role of social support as a key aspect
of stigma management and self-care extends some of the existing research showing that
a strong, stable social support network provides a stress-buffering effect (Britton,
Zarski, & Hobfoll, 1993), promotes better adaptation to the physical health symptoms
of HIVIAIDS (Ashton et al., 2005), and improves overall psychological well-being
(Ashton et al., 2005; Hayes, Chauncey, & Tobey, 1990; Nott, Vedhara, & Power, 1995).
In addition, a few men felt it was important that their support network also gave them
the opportunity to provide support to others. One man stated, "[You] make it work that
you can give rather than just receive. And then over a period of time, you're going to
learn that you can get a lot more satisfaction by giving." In describing his long-standing
participation in an HIVIAIDS support group, another man explained how he felt it was
important for him to be there to support other PWHAs.
You can come here, you know, every week. You need support, and we'll be there
for them. A lot of the kids need to know that. One of the things that we do also, at
the close of every meeting, [is] give a hug. And for some of them, that's the only
hug they've had in weeks, or longer. And they like it. They're so afraid they're
going to die.
This is consistent with Hayes, Chauncey and Tobey's (1990) finding that the degree to
which HIV-positive gay men felt they reciprocated support to other group members was
positively correlated with overall psychological well-being. While the importance of
this reciprocity of support was a minor theme in the current study, it underscores the
unique and significant role of social support for HIV-positive gay men.
Theoretical Literature
In addition to examining the study's findings in light of the empirical literature,
Strauss and Corbin (1998) point out that theoretical literature that is relevant to the
research topic also provides a source for comparison and a way to evaluate the
relevance of the study's findings and conclusions. Because it centers on the concept of
self-care, Dorothea Orem's Self-Care Deficit Theory of Nursing (Orem, 200 1) offers an
appropriate perspective on how the need to normalize explained the impact of stigma on
the self-care behaviors of the HIV-positive gay men in this study. According to Orem's
theory,,self-care is defined as "the deliberate use of valid means to control or regulate
internal and external factors that affect the smooth activity of a person's own functional
and developmental processes or contribute to a person's personal well-being" (p. 43). In
order to care for themselves, persons must find ways to regulate their own functioning
by accommodating to changes in both the physical and social environment, and
engaging in behaviors to restore or maintain balance or equilibrium in their lives. Orem
(1987) compared self-care to human neuroendocrine regulatory processes, which are
responsible for maintaining physiologic homeostasis. This is analogous to the feedback
loop illustrated in the model (Figure 2), which explains the grounded theory discussed
in Chapter 4. Her theory further posits that a requisite of self-care includes "the
promotion of human functioning and development within social groups in accord with
human potential, known human limitations, and the human desire to be normal" (Orem,
2001, p. 225).
In listening to the men in this study describe their stigma management
experiences in the context of self-care, it became clear that they reacted to stigma as a
health threat and responded in ways that brought their lives into normal alignment.
Their responses included regulating external factors to minimize stigma threats through
hiding and disclosure strategies, seeking supportive and affirming environments, and
avoiding contexts that presented significant threats. Over time, many of these men also
regulated internal factors by constructing alternative views of themselves by shifting
their self-perception from being a stigmatized person (e.g., devalued or tainted), to that
of being a normal person. One participant's introspective comment captured this idea:
"I am not HIV, and I guess the stigma is when people see HIV versus me."
In addition to the promotion of normalcy, Orem's (2001) self-care requisites
include the maintenance of other life-sustaining social and physiologic functions, such
as air, food and water; provisions for sanitation, hygiene, and elimination; finding
balance between activity and rest, and solitude and social interaction; and the
prevention of hazards. In addition, Orem states, "Self-care has purpose. It is action that
has sequence and pattern and, when performed effectively, contributes in specific ways
to human structured integrity, human functioning, and human development" (p. 43).
Again, looking at the findings of the current study through this theoretical lens, self-care
logically includes a wide spectrum of self-care actions that are purposeful and
interrelated. One man explained how his response to stigma was part of a larger effort to
regulate other self-care variables in his life.
If I'm taking care of myself, like not acting out on a drug addiction. If I am
treating people the way I would like to be treated myself. If I'm living in that
space where I'm not putting people at risk, taking my medications, and staying
healthy, exercising, and having that routine in my life, [it] reinforces some
positive energy or forward momentum.
This man's response underscores Orem's concept of self-regulation. His words reflect
the need to achieve "the human structured integrity" described in the theory, by
bringing a sense of equilibrium to his life through regulation of conditions that regulate
homeostasis. Orem's theory informs the findings of this study because it offers a
unifying explanation of how human beings regulate their own functioning and
development. Because Orem defines self-care as a "regulatory function," her theory
further validates the grounded theory developed here, which shows how normalizing is
the goal of stigma management and includes the intersection of self-care and social
support.
Striving for Normalcv
In addition to identifying social support as a key aspect of their self-care, the men
described self-care as part of a larger process that explained how they coped with
stigma. When they were asked to describe how stigma had an effect on their self-care,
they explained it in a more extensive context that situated self-care and social support as
part of their process of striving for normalcy. It was clear from listening to these men
describe the numerous ways in which they managed stigma threats that their need to
normalize was the aim of stigma management. This finding is consistent with a recent
study by Mallinson et al. (2005) who also found that PWHAs adapted to the obstacles
that the illness introduced into their lives by "learning to assimilate HIV into their daily
routine without losing their sense of self, relationships, jobs or their normalcy" (p. 268).
The researchers also found that participants recognized the tension between passing as
normal by concealing information about their status versus disclosing in order to
maintain a connection with others. Partners, friends, family, health care providers, were
all identified as fundamental to PWHAs feeling respected and validated.
As a number of other researchers have noted, normalization is a process by which
persons with chronic illness and their families adjust to the physical and social
limitations of their illness in order to feel like they are valued and included in the larger
social fabric (Charmaz, 1991; Joachim & Acorn, 2000; Miller, 2000; Strauss et al.,
1984). Studies on the process of normalization with other chronic conditions such as
congenital heart disease (Gnatt, 2002), asthma (Small & Lamb, 1999) epilepsy, (Elliott,
Lach, & Smith, 2005) and mental illness (Pickens, 1999; Rose, Mallinson, & WaltonMoss, 2002) have highlighted the centrality of normalization to explain how persons
with chronic conditions manage the numerous physical and social challenges imposed
by their illnesses. In their extensive work on quality of life for persons with chronic
illness, Strauss et al. (1 984) have argued that normalization is the main goal of persons
with chronic illness. They state,
The chief business of chronically ill persons is not just to stay alive or keep their
symptoms under control, but to live as normally as possible despite the symptoms
and the disease. How normal they can make their lives.. .depends not only on the
social arrangements they can make, but on just how intrusive are the symptoms,
the regimens, and the knowledge that others have of the disease and of its fatal
potential (p. 79).
Additionally, the significance of normalcy was recognized by Goffman (1963), who
pointed out that persons with stigmatizing traits are fully aware of "the great rewards of
being considered normal" (p. 74); and as such, they will look for ways to become
accepted by "normals." Thus it is not surprising that striving for normalcy emerged as
the central category in this grounded theory study.
Another notable finding in this study was that the process of normalization and
stigma management strategies were interdependent components in a continuous
feedback loop. While stigma management (i.e., hiding vs. disclosing), had an impact on
the way participants normalized, normalization also had an influence on stigma
management. As an example, when men hid being gay or having HIVIAIDS, they were
able to feign normalcy; however, they paid the price of incurring added stress, having to
be vigilant about managing the information, reinforcing their own self-stigmatization,
and missing out on the support that was often vital to coping successfully with the
illness. This led many of them to gradually change their stigma management from
hiding to using more disclosure. As one man said, "You start telling people, and it's
real. You can't deny it anymore." By hiding less and disclosing more, these men
gradually reinforced their own self-perception of normalcy thus garnering additional
support and affirmation of themselves as valued and normal persons. This allowed them
to focus on qualities and attributes other than the stigmatizing ones, and to deflect the
discrediting comparisons perpetuated by the stigmatizers. As one man stated, "Pursuing
interests and goals, those types of things help me feel more grounded and self-secure,
less worried about what the outside world thinks, and less dependent on what the
outside world thinks." In the following example, another participant described this
transformation, illustrating the reciprocal nature of stigma management and the struggle
for normalcy.
The stigma in my own mind exists as well, in relation to the stigma outside of my
mind. And I don't necessarily feel that external stigma growing or shrinking, but
certainly the stigma in my own mind I feel growing and shrinking, depending on
how I'm showing up in the world. And me being able to handle that stigma better
relates to how I feel inside.
This finding suggests that men who used more disclosure strategies gradually shifted
how they viewed themselves in the context of their illness or their sexual orientation by
achieving a more normal self-identity. Thus, acting normal by being open about their
status (disclosing) and feeling normal came into alignment. In other words, the process
of developing normalcy further reinforces one's perceptions of normalcy.
On this point, Charmaz (1987) suggests that, as persons with chronic illness
struggle for normal lives, they reconstruct new identities that are shaped by their illness
experience. She notes, "Personal and social meanings of illness in general and the
experienced illness in particular, shape identity construction and definitions of stigma"
(p. 289). Additionally, the shift to a positive or normal illness identity allows the person
to feel valued despite the conventional standards. This might further explain why two of
the men in this study believed that they were completely unaffected by stigma. It is
more likely that these men had learned to deflect stigmatizing identifications through
the use of more open disclosure and less concealment of status. Over time they had
adapted to stigma threats by reconstructing stronger self-affirming identities as HIVpositive gay men. For example, one of these men described a recent experience where
he openly discussed his status at the wedding of a friend. This quote reflects his sense of
negotiating a positive and affirming self-identity.
What I found is that I was very open to his mother, to his father, to different
people, that I was HIV-positive. And I found myself just doing that within the
conversations going on at this reception. And there was no predicament around
being even-minded and honest about who I am.
To use an additional example of identity affirmation, another participant whimsically
described his preemptive (yet somewhat cryptic) way of openly disclosing his status by
teasing at the curiosity of others. The license plate on his car says, "YES I AM." It is
worth noting that, not only is it quite normal to have special license plates on one's
vehicle, but often the messages displayed are carefully selected to make identityaffirming statements about the owner. For example, it would not be unusual to see
"BEAT NY" on the car of a Boston Red Sox fan, "SIDIN MAN" on the van owned by a
siding company, or "CELLO" on the car of a classical musician. For this participant, the
phrase "YES I AM" affixed to his car invited opportunity for public affirmation of his
identity as gay man with AIDS. Another man provided a similar example of how he
viewed his stigmatized identity as normal, which further reinforced his own positive
self-perception of being gay and HIV-positive.
If you make the conscious effort to incorporate that aspect of your life and equate
it with, "I'm gay. I'm HIV-positive. I'm six foot one. I drive a purple pickup
truck." When you put it on that same level as casual conversation, things that you
wouldn't think twice about saying, that you wouldn't trip up over, then you are
not stigmatizing yourself.
To better understand this apparent tendency to renegotiate an affirming identity,
symbolic interactionism offers a useful framework. As discussed in Chapter 3,
"symbolic interactionism recognizes that human beings must have a makeup that fits the
nature of social interaction" (Blumer, 1969, p. 12). This suggests that individuals will
negotiate meanings of self or identity that are based upon how others act toward or
define them, and will further attempt to correct incongruities between how they see
themselves in comparison to how others see them. For example, in their work with gay
men and lesbians, Kaufman and Johnson (2004) found that "stigmatized individuals
actively seek a positive conception of self and identity, even when the identity is
stigmatized" (p. 8 19). Their participants sought reflected appraisals that were in
alignment with their own self-view. Finding affirming reflected appraisals by aligning
themselves with others who were likely to reflect back a positive appraisal (usually
other gay men and lesbians), was key to acceptance of self-identity. In the current study,
several men touched on this idea while discussing stigma management. One man used
the reverse approach for finding affirming reflected appraisals, which was to distance
himself from potential stigmatizers.
I think I've adopted the attitude of you know, I'm just going to be myself. I mean
the general attitude is I don't want to be around people or involved with people
who aren't interested in being around me. So it's a pretty easy thing to come to.
And if it is obvious to me that they didn't like me because I was gay, or because I
had AIDS, then I would conclude that, that wouldn't be a worthwhile relationship
anyway.
This process of bringing one's view of self and reflected appraisals into alignment is
further supported by Orem's (2001) theory, because "developing and maintaining a
realistic self-concept" (p. 227) is a self-care requisite. In other words, regulation of
internal and external factors to maintain normalcy also includes striving for and
maintaining a positive self-view. As previously noted, the process of self-regulation to
bring about homeostasis or normalcy applies to social groups as well as to individuals.
Chapter Summary
Consistent with the previously published research on HIVIAIDS stigma, the men
in this study acknowledged the presence of stigma in their lives and accommodated to it
by using various stigma management strategies. Although the degree to which they felt
stigmatized by other gay men was unexpected, this finding has also been noted by other
researchers, and is most likely attributed to the cultural milieu in which HIV-positive
gay m,en socialize. While the use of concealment was a first-choice stigma management
strategy representing one end of a stigma-management continuum, these men invariably
used numerous other tactics for protecting and/or disclosing their HIV-positive status.
This finding is also consistent with existing research on how HIV-positive gay men
manage stigma. The current study extends the findings of previous research by situating
stigma management within a larger process of attaining normalcy and further
underscores the interdependent relationship between stigma management and self-care.
Moreover, the findings here revealed how the more encompassing process of
normalization subsumes self-care.
The attainment and maintenance of normalcy emerged as the central category for
the HIV-positive gay men in this study. In response to the question about how stigma
had an impact on their self-care, these men described a process that situated self-care
within a larger process of normalizing; thus their need to normalize was the chief aim of
stigma management. A key finding was that normalization and stigma management
strategies were interdependent components in a continuous feedback loop, whereby the
attainment of normalcy influenced stigma management and vice versa. Most of these
men saw status disclosure as the main route to an affirming social support system and
ultimately as a way to resolve any incongruence between self-view and reflected
appraisals. As such, social support was seen as a major component of self-care, a
finding that extends some of the existing research demonstrating that social support
promotes adaptation to the challenges imposed by HIVIAIDS. Dorothea Orem's Self-
Care DeJicit Theory of Nursing (Orem, 2001) also supports the overarching requisite of
normalization as the goal of stigma management and accounts for the intersection of
self-care and social support to maintain and promote health. Her theory further
validated the findings of this study by explaining how the need for persons to attend to
deviations from normalcy through self-regulation of internal and external factors is
essential to self-care.
Chapter 6
IMPLICATIONS, LIMITATIONS, AND
SUGGESTIONS FOR FUTURE RESEARCH
Introduction
The purpose of this study was to explain the impact of stigma on the self-care
behaviors of HIV-positive gay men. The findings from this study revealed that, for this
particular group of participants, managing stigma resulted from a need to lead normal
lives, and it had an impact on their self-care. A number of implications for health care
providers can be drawn from the findings. The study's clinical implications, limitations,
and suggestions for future research are discussed in this chapter.
Implications for Clinical Practice
This study has several implications for persons who work with HIV-positive gay
men. Foremost is recognizing that, while it might seem that there is ostensibly less
stigma associated with being gay and having HIVIAIDS than there used to be, the
findings here are consistent with earlier research (Bennett, 1990; Siegel, Lune, &
Meyer, 1998; Siegel & Krauss, 1991; Weitz, 1990) showing that HIVIAIDS stigma
continues to negatively impact the lives of HIV-positive gay men. Despite the fact that
HIVIAIDS is now considered to be a chronic and treatable illness characterized by
increased longevity and improved quality of life, health care and social service
providers should not assume that HIV-positive gay men will easily adapt to the social
challenges imposed by the illness, or that HIVIAIDS in the twenty-first century has
become a de-stigmatized condition. As seen in the previous chapters of this study,
enacted stigma was a familiar experience for most of these men, and felt stigma
continued to represent a significant burden. All the men used strategies to protect
themselves from stigma threats and had come to see stigma management as a normal
adaptation to being gay and having HIVIAIDS. As one (previously quoted) participant
said about stigma, "It's just always there."
The role of social support as a part of self-care emerged as a significant theme in
this study. This finding is consistent with other research, further highlighting the
significance of social support for PWHAs. Unarguably, efforts to improve strong and
stable social support networks are an important mechanism for ameliorating the
untoward effects of stigma that are associated with being a gay man with HIVIAIDS.
Direct service providers (e.g., medical clinicians, nurses, case managers, counselors)
should facilitate discussions with HIV-positive gay men about their access to both
formal and informal social support networks, and suggest avenues for accessing
support. Providers should also recognize that various forms of support exist (e.g.,
emotional, instrumental, informational), and not all types of social support are
necessarily desirable (Hall, 1999). Therefore emphasis should be placed on individual
client needs.
Specific Implications for Medical Professionals
It is essential that medical providers become informed about the special health
care needs of HIV-positive gay men, particularly the impact of stigma on their physical
and mental health. Finding ways to de-stigmatize the health care environment will
engender trusting patient-provider relationships and foster continuity of care. While
very few of the men in this study described being stigmatized by their health care
providers, several believed that stigma does exist within the health care system. The
central category of normalizing described in Chapter 4 explains how the HIV-positive
gay men in this study sought out environments that were supportive and affirming and
avoided those that were stigmatizing. It is not unreasonable to assume that the same
principle would apply in choosing health care providers or settings. One participant's
comments clearly illustrated this point: "When I had to choose a doctor, I wanted a
lesbian or a gay man. I did not want a straight man for my medical doctor. I didn't want
to deal with some straight doctor's attitudes."
Providers who make assumptions or judgments about the lifestyles and/or sexual
practices of their HIV-positive gay male clients will likely perpetuate stigma, which
may drive clients out of care. Providers also need to recognize that stigma is sometimes
embedded or hidden within the health care structure. For example, the use of
heterosexist language on forms and screening tools, failure to acknowledge the
legitimacy of nontraditional families, and poor understanding among members of the
health care team about the unique health needs of HIV-positive gay men will all further
add to the stigmatization of this population. Health care settings should send the
message that HIV-positive gay men are welcome by including both HIV- and gayrelated pamphlets, periodicals, posters, notices of special events, and referral resources
in their waiting areas.
Because HIVIAIDS is a chronic illness, PWHAs naturally engage in a number of
self-care behaviors that go beyond taking prescribed medications and adherence to other
recommended medical interventions. Health care providers will need to recognize that
living with HIVIAIDS includes the day-to-day management of both the physical and
social challenges imposed by the illness, and that self-care includes managing stigma. In
addition to the physical assessments and examinations that are normally a part of
medical care, a comprehensive health evaluation should also include assessment of
emotional responses to the illness and the use of coping strategies. By asking their
clients questions like, "Tell me how are you dealing with the social pressures of being a
gay man with HIV," providers acknowledge the presence of stigma in their clients' lives
and encourage them to talk about the impact of stigma on their ability to manage the
illness. As demonstrated in this study, recognizing that the skills gay men have learned
in the past to cope with gay stigma may be useful in managing HIVIAIDS stigma. In
addition, the model presented in this study can be used to assist clients in developing
strategies for strengthening relationships, identifying sources of support, and affirming a
positive self-image.
Specific Implications for Mental Health Professionals
Mental health professionals who provide counseling or therapy to HIV-positive
gay men will benefit from an understanding of how they manage stigma. Helping men
to recognize both the risks and benefits of using the various strategies along the stigma
management continuum will allow them to make informed decisions about disclosure. It
is important for therapists to recognize that men who feel heavily stigmatized and use
more hiding strategies in order to protect themselves from stigma threats will likely
experience increased stress, and risk closing off access to the social support needed to
facilitate adaptation to the illness. A goal of therapy might be to facilitate a gradual
process of disclosure beginning with a few trusted allies in safe environments. This will
likely benefit most clients. Moreover, using the model presented here to frame a
discussion with clients about how stigma management is integrally related to the goal of
having a life that feels normal may be useful in some therapeutic settings.
In this study it was theorized that men who said they were minimally influenced
or unaffected by stigma had adapted to stigma threats by reconstructing stronger selfaffirming identities as HIV-positive gay men. These men found affirmation of their
stigmatized identity by aligning themselves with others who were most likely to reflect
back a positive appraisal. Therapists and counselors who use more psychodynamic
approaches with their HIV-positive gay male clients may wish to draw on the symbolic
interactionist tradition to explore this concept of reflected appraisals. Facilitating
clients' understanding of forming an affirming self-identity is likely to have both
physical and psychological benefits.
Therapists and counselors who do group work should consider facilitating
psycho-educational support groups that focus specifically on the impact of stigma and
ways to implement stigma management. Because many of the men in this study
described the value of being able to both give and receive support, such a venue would
likely benefit newly infected HIV-positive gay men as well as those who had been
living with the illness for several years. Moreover, in a group where the topic of
discussion was stigma, HIV-positive gay men may be able to process and better
understand why they feel so much stigma coming from other gay men. The group
environment also would lend itself to collaborative problem solving, role-playing and
guided discussions that centered around how HIV-positive gay men respond to both felt
and enacted stigma.
Limitations
Several limitations of this grounded theory analysis should be noted, The first is
recognizing that the voices of the most stigmatized HIV-positive gay men may be
missing. All of the men who participated in this study voluntarily referred themselves
after hearing about it through ASOs, posters, emails, and word-of-mouth. Many of them
said they had a personal interest in the topic and wanted to explore the issue of stigma.
Conversely, men who felt heavily stigmatized and mostly secretive about being gay or
having HIVIAIDS may not have known about the study, and those who did know might
not have participated because it required coming forward and disclosing their status. As
such, the primary participants and focus group members who participated in this study
may represent a unique group of highly motivated men who were managing stigma
fairly well in comparison to others.
Second, while the concept of generalizability is an inappropriate criterion with
which to evaluate qualitative inquiry, readers are reminded that because this study
generated a substantive grounded theory, its explanatory power or reproducibility is
currently limited to the specific contextual conditions under which the study was
conducted. For example, the study's primary participants were all living in a
geographically large and sparsely populated rural state where the number of PWHAs
represents about 0.1% of the total state population (Maine Department of Health and
Human Services, 2005). In comparison, the number of PWHAs in the US is about
0.34% of the total population (CDC, 2003a). The stigma experiences of HIV-positive
gay men who live in more densely populated areas of the US where the number of gay
men and the incidence of HIVIAIDS is high might be different from the experiences
described by the men in this study. Suggestions for additional research to expand the
scope and applicability of this theory are discussed below.
Third, the researcher is a primary care clinician (nurse practitioner) for a number
of HIV-positive gay men in southern Maine, where most of the participants live. While
the investigator's primary care patients were deliberately excluded from the study, some
participants may have still viewed the investigator primarily as a health care provider
rather than as a researcher. Given that most of the data for this study was collected in a
medical clinic by a medical clinician, some men may have found it difficult to be
completely candid about some of their experiences.
Fourth and finally, it is important to recognize that all research has bias. In
qualitative analysis the investigator is the research instrument, making it unfeasible to
eliminate the researcher's subjectivity. For example, because the researcher in this study
is a gay man, he has been affected by many of the same stigma-related influences and
struggles as the participants. While every effort was made to guard against
contaminating the findings with his personal experiences of stigma, the researcher
readily acknowledged identifying with the participants' experiences of stigma and
empathizing with their personal struggles of being shamed, rejected and discredited.
The self-reflexive process described in Chapter 3 may have mitigated the impact of bias
in the research; however, the degree to which bias and subjectivity has influenced the
study's findings is unknown.
Suggestions for Future Research
All of the HIV-positive gay men in this study were engaged in health care, and
none described instances where they felt that stigma prevented them from getting
appropriate health care services; however, other research has suggested that stigma may
be a barrier to health care for some PWHAs (i.e., Chesney & Smith, 1999; Dean et al.,
2000; Herek, 1999). Studies are needed to examine the role of stigma in populations of
HIV-positive gay men who know their HIV status but are reluctant to seek out social
support networks or health care services. In addition, objective measures of HIV disease
progression (CD4, viral load, incidence of opportunistic infections, HIV-related
hospitalizations) in those who delay or avoid care because of stigma would further
quantify its impact on the health of HIV-positive gay men. Using the "HIV Stigma
Scale" developed by Berger, Ferrans and Lashley (2001) to correlate stigma with other
variables such as self-care behaviors, status disclosure and support seeking would
further illuminate the impact of stigma on health of this population.
In this study HIV-positive gay men managed stigma by seeking out safe and
supportive persons or environments that allowed for more open disclosure of their HIV
status. It is theorized that, by aligning themselves with others who were likely to reflect
back a positive appraisal, these men found affirmation of their stigmatized identity.
Additional studies that further explore the influence of HIVIAIDS stigma on identity
formation would advance the findings here.
As seen in the studies done on HIVIAIDS stigma and HIV-positive gay men,
women with HIVIAIDS respond to the forces of stigma in similar ways. Like men,
HIV-positive women feel shamed, contaminated, blamed and devalued, and they
frequently use concealment or hiding strategies in order to defend against being
stigmatized for having HIVIAIDS (Clark, Linder, Armistead, & Austin, 2003;
Moneyham et al., 1996; Sowell, Lowenstein, et al., 1997). Like the available literature
on HIV-positive gay men, research examining the impact of HIV/AIDS stigma on HIV-.
positive women is mostly descriptive and offers no theoretical explanation how stigma
impacts HIV-positive women's self-care. Additional studies are needed to examine how
stigma plays a role in the self-care behaviors of HIV-positive women.
As previously stated, this grounded theory's explanatory power is currently
limited to the specific contextual conditions and unique circumstances under which the
study was conducted. Additional research is needed to further evaluate and expand its
explanatory power under other conditions and in different contexts. For example, to
what extent does this theory explain how other HIV populations (i.e., women, children,
injection drug users, racial/ethnic minorities, or heterosexual men) manage stigma?
Because research suggests that PWHAs are viewed more negatively than persons with
other stigmatizing illnesses, how well does the theory provide an explanation of how
those with cancer, mental illness, or physical disability manage stigma? This form of
research would test the theory's broader applications.
Finally, Joachim and Acorn (2000) have pointed out the lack of research on the
chronic illness experience that examines the interdependence of normalization and
stigmatization. These authors argue that in order to appreciate how persons cope with
chronic illness, the interaction of stigma and normalization should be examined
simultaneously. While this study is one of the first to highlight the interdependent
relationship between normalization and stigmatization and their synergistic impact on
gay men with HIV/AIDS, additional research is needed to examine how people with
chronic and stigmatizing conditions regulate both the internal and external factors that
characterize the chronic illness experience. Expanding the available research in this area
will help health care providers to develop appropriate interventions for these patients.
Chapter Summary
This final chapter discussed the study's clinical implications, identified a number
of limitations, and offered suggestions for future research. The conclusions drawn from
this study can help health care providers become better informed about the special
health care needs of HIV-positive gay men, particularly the impact of stigma on their
physical and mental health. Interventions that help HIV-positive gay male clients
manage stigma, find stable support networks, and develop affirming self-identities will
have both physical and psychological benefits. Finding ways to de-stigmatize health
care environments will also increase health care access for this population.
Like all research, this study has limitations. As noted, HIV-positive gay men who
were the most heavily affected by stigma may not have participated in the research
because they feared the consequences of disclosure. Bias and subjectivity (discussed in
Chapter 3) undoubtedly had some degree of impact on the research process. Because
this study generated a substantive theory, its "predictive ability" (Strauss and Corbin,
1998) is limited to the specific set of conditions generated by the theory.
Additional research is needed to examine the role of stigma in populations of
HIV-positive gay men who are not getting health care andlor who are socially isolated.
Studies that use objective measures of HIV disease progression in HIV-positive gay
men who delay or avoid care because of stigma would further quantify its impact on the
health of this population. Studies are also needed to examine how people with chronic
and stigmatizing conditions regulate both the internal and external factors that
characterize the chronic illness experience. Additional research that evaluates how well
the theory applies under other circumstances and conditions would further test its
explanatory power. Additional research on how stigma impacts HIV the self-care
behaviors of HIV-positive women will also offer a comparative perspective on the
findings of this study. Finally, studies that examine the influence of HIVIAIDS stigma
on identity formation would further advance the findings here.
REFERENCES
Agne, R. R., Thompson, T. L., & Cusela, L. P. (2000). Stigma in the line of face: Selfdisclosure of patients' HIV status to health care providers. Journal ofApplied
Communication Research, 28, 235-261.
Allan, J. D. (1990). Focusing on living, not dying: A naturalistic study of self-care
among seropositive gay men. Holistic Nursing Practice, 4(2), 56-63.
Alonzo, A. A., & Reynolds, N. R. (1995). Stigma, HIV and AIDS: An exploration of a
stigma trajectory. Social Science & Medicine, 41, 303-3 15.
Annells, M. (1996). Grounded theory method: Philosophical perspectives, paradigm of
inquiry and postmodernism. Qualitative Health Research, 6, 379-393.
Ashton, E., Vosvick, M., Chesney, M., Gore-Felton, L., Koopman, C., O'Shea, K., et al.
(2005). Social support and maladaptive coping as predictors of the change in
physical health symptoms among persons living with HIVIAIDS. AIDS Patient
Care & STDs, 9, 587-598.
Bakken, S., Holzemer, W. L., Brown, M. A., Powel-Cope, G. M., Turner, J. G., Inouye,
J., et al. (2000). Relationships between perception of engagement with health care
provider and demographic characteristics, health status, and adherence to
therapeutic regimen in persons with HIVIAIDS. AIDS Patient Care & STDs, 14,
189-197.
Barroso, J. (1995). Self-care activities of long-term survivors of acquired
immunodeficiency syndrome. Holistic Nursing Practice, 10(1), 44-53.
Bennett, M. J. (1990). Stigmatization: Experiences of persons with Acquired Immune
Deficiency Syndrome. Issues in Mental Health Nursing, 11, 141- 154.
Berger, B. E., Ferrans, C. E., & Lashley, F. L. (2001). Measuring stigma in people with
HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing &
Health, 24, 5 18-529.
Bloom, L. R. (2002). Stories of one's own: Nonunitary subjectivity in narrative
representation. In S. B. Merriarn and Associates (Eds.), Qualitative research in
practice: Examples for discussion and analysis (pp. 289-309). San Francisco:
Jossey-Bass.
Blurner, H. (1 969). Symbolic interactionism. Englewood Cliffs, NJ: Prentice Hall.
Bodenheimer, T., Lorig, K., Holman, H., & Grumbach, K. (2002). Patient selfmanagement of chronic disease in primary care. Journal of the American Medical
Association, 288, 2469-2475.
Bonvicini, K. A., & Perlin, M. J. (2003). The same but different: Clinician-patient
communication with gay and lesbian patients. Patient Education and Counseling,
51, 115-122.
Britton, P. J., Zarsky, J. J., & Hobfol, S. E. (1993). Psychological distress and the role
of significant others in a population of gayhisexual men in the era of HIV. AIDS
Care, 5,43-54.
Burris, S. (1 999). Studying the legal management of HIV-related stigma. American
Behavioral Scientist, 42, 1225-1239.
Carr, R. L., & Gramling, L. F. (2004). Stigma: A health barrier for women with
HIVIAIDS. Journal of the Association of Nurses in AIDS Care, 15(5), 30-39.
Centers for Disease Control and Prevention. (198 1). Pneumocystis Pneumonia-Los
Angeles. MMWR, 30, 1-3.
Centers for Disease Control and Prevention. (2000). HIV-related knowledge and
stigma-United
States. MMWR, 49, 1062-1064.
Centers for Disease Control and Prevention. (2003a). Advancing HIV prevention: New
strategies for a changing epidemic-United
States, 2003. MMWR, 52, 329-332.
Centers for Disease Control and Prevention. (2003b). Incorporating HIV prevention into
the medical care of persons living with HIV. MMWR, 52, RR 2, 1-24.
Centers for Disease Control and Prevention. (2004). High-risk sexual behavior by HIVpositive men who have sex with men-16
sites, United States, 2000-2002.
MMWR, 53, 891-894.
Channaz, K. (1987). Struggling for a self: Identity levels of the chronically ill. Research
in the Sociology of Health Care, 6,283-32 1.
Charmaz, K. (1 991). Good days, bad days; The selfin chronic illness and time. New
Brunswick, NJ: Rutgers University Press.
Charmaz, K. (2000). Grounded Theory: Objectivist and constructivist methods. In N. K.
Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2"d ed., pp.
509-536). Thousand Oaks, CA: Sage Publications.
Chesney, M., & Smith, A. (1999). Critical delays in HIV testing and care: The potential
role of stigma. American Behavioral Scientist, 42, 1162-1174.
Chou, F., Holzemer, W. L., Portillo, C. J., & Slaughter, R. (2004). Self-care strategies
and sources for HIVIAIDS symptom management. Nursing Research, 53,332339.
Ciccarone, D. H., Kanouse, D. E., Collins, R. L., Miu, A., Chen, J. L., Morton, S. C., et
al. (2003). Sex without disclosure of positive HIV serostatus in a US probability
sample of persons receiving medical care for HIV infection. American Journal of
Public Health, 93, 949-954.
Clark, H. J., Linder, G., Armistead, L., & Austin, B. J. (2003). Stigma disclosure and
psychological functioning among HIV-infected and non-infected AfricanAmerican women. Women & Health, 38(4), 57-71.
Cobb, M., & DeChabert, J. T. (2002). HIVIAIDS and care provider attributions: Who's
to blame? AIDS Care, 14,545-548.
Cole, S. W., Kemeny, M. E., Taylor, S. E., Visscher, B. R., & Fahey, J. L. (1996).
Accelerated course of human immunodeficiency virus infection in gay men who
conceal their homosexual identity. Psychosomatic Medicine, 58, 2 19-23 1.
Crandall, C. S. (1991). Multiple stigma and AIDS: lllness stigma and attitudes toward
homosexuals and IV drug users in AIDS-related stigmatization. Journal of
Community & Applied Social Psychology, 1(2), 165- 172.
Crandall, C. S., & Coleman, R. (1992). AIDS-related stigmatization and the disruption
of social relationships. Journal of Social and Personal Relationships, 9, 163-177.
Crandall, C. S., & Moriarty, D. (1995). Physical illness and social rejection. British
Journal of Social Psychology, 34,67-83.
Crawford, A. M. (1996). Stigma associated with AIDS: A meta-analysis. Journal of
Applied Social Psychology, 26, 398-4 16.
Creswell, J. W. (1 998). Qualitative inquiry and research design: Choosing amongfive
traditions. Thousand Oaks, CA: Sage Publications.
Dean, K. (1981). Self-care responses to illness: A selected review. Social Science &
Medicine, I SA, 673-687.
Dean, L., Meyer, I. H., Robinson, K., Sell, R. L., Sember, R., Silenzio, V. M. B., et al.
(2000). Lesbian, gay, bisexual, and transgender health: Findings and concerns.
Journal of the Gay and Lesbian Medical Association, 4(3), 10 1- 15 1.
Denzin, N. K., & Lincoln, Y. S. (2000). In N. K. Denzin & Y. S. Lincoln (Eds.),
Handbook of qualitative research (2nded., pp. 1-28). Thousand Oaks, CA: Sage
Publications.
Devine, P. G., Plant, E. A., & Harrison, K. (1999). The problem of "us" versus "them"
and AIDS stigma. American Behavioral Scientist, 42, 1208- 1224.
DiPlacido, J. (1998). Minority stress among lesbians, gay men and bisexuals: A
consequence of heterosexism, homophobia, and stigmatization. In G. M. Herek
(Ed.), Stigma and sexual orientation: Understandingprejudice against lesbians,
gay men and bisexuals (pp. 138-159). Thousand Oaks, CA: Sage Publications.
Dukes, R. L., & Denny, H. C. (1995). Prejudice toward persons living with a fatal
illness. Psychology Reports, 3 (Part 2), 1107-114.
Eliason, M. J., & Raheim, S. (2000). Experiences and comfort with culturally diverse
groups in undergraduate pre-nursing students. Journal of Nursing Education, 39,
161-165.
Elliott, 1. M., Lach, L., & Smith, M. L. (2005). I just want to be normal: A qualitative
study exploring how children and adolescents view the impact of intractable
epilepsy on their quality of life. Epilepsy & Behavior, 7, 664-678.
Epstein, S. (1 996). Impure science: AIDS activism, and the politics of knowledge.
Berkeley, CA: University of California Press.
Fife, B. L., & Wright, E. R. (2000). The dimensionality of stigma: A comparison of its
impact on the self of persons with HIVIAIDS and cancer. Journal of Eiealth and
Social Behavior, 41, 50-67.
Gilmore, N. T., & Somerville, M. A. (1994). Stigmatization, scapegoating and
discrimination in sexually transmitted diseases: Overcoming "them" and "us."
Social Science & Medicine, 39, 1339-1358.
Glaser B. G. (1 978). Theoretical sensitivity. Mill Valley, CA: Sociology Press.
Glaser, B. G. (1 992). Basics of grounded theory analysis. Mill Valley, CA: Sociology
Press.
Glaser, B. G., & Strauss, A. L. (1 967). The discovery of grounded theory: Strategies for
qualitative research. Chicago: Aldine Publishing.
Gnatt, L. (2002). As normal a life as possible: Mothers and their daughters with
congenital heart disease. Health Carefor Women International, 23,48 1-491.
Goffman, E. (1 963). Stigma: Notes on the management of spoiled identity. New York:
Simon & Schuster.
Grossman, A. H. (1 991). Gay men and HIVIAIDS: Understanding the double stigma.
Journal of the Association of Nurses in AIDS Care, 2(4), 28-32.
Hall, V. P. (1 999). The relationship between social support and health in gay men with
HIVIAIDS: An integrative review. Journal of the Association of Nurses in AIDS
Care, 10(3), 75-86.
Hamilton, M. C. (1988). Masculine generic terms and the misperception of AIDS risk.
Journal of Applied Social Psychology, 18, 1222- 1240.
Harrison, A. E. (1996). Primary care of lesbian and gay patients: Educating ourselves
and our students. Family Medicine, 28, 10-23.
Harrison, A. E., & Silenzio, V. M. B. (1996). Comprehensive care of lesbian and gay
patients and families. Primary Care Clinics in Office Practice, 23, 3 1-47.
Hatch, A. (2002). Doing qualitative research in education settings. Albany, NY: State
University of New York Press.
Hayes, R. B., Chauncy, S., & Tobey, L. (1990). The social support networks of gay
men with AIDS. Journal of Community Psychology, 18, 374-385.
Henry, S. B., Holzemer, W. L., Weaver, K., & Stotts, IV. (1999). Quality of life and selfcare management strategies of PLWAs with chronic diarrhea. Journal of the
Association of Nurses in AIDS Care, 10(2), 46-54.
Herek, G. M. (1999). AIDS and stigma. American Behavioral Scientist, 42, 1106- 1 1 16.
Herek, G. M. (2002). Thinking about AIDS and stigma: A psychologist's perspective.
Journal of Law, Medicine & Ethics, 30,549-607.
Herek, G. M., & Capitanio, J. P. (1998). Symbolic prejudice or fear of infection? A
functional analysis. Basic and Applied Social Psychology, 20,230-24 1.
Herek, G. M., & Capitanio, J. P. (1999). AIDS stigma and sexual prejudice. American
Behavioral Scientist, 42, 1126- 1 143.
Herek, G. M., Capitanio, J. P., & Widaman, K. F. (2002). HIV-related stigma and
knowledge in the United States: Prevalence and trends, 1991- 1999. American
Journal of Public Health, 92,371-377.
Herek, G. M., Coogan, J. C., Gillis, J. R., & Glunt, E. K. (1998). Correlates of
internalized homophobia in a community sample of lesbians and gay men.
Journal of the Gay and Lesbian Medical Association, 2(1), 17-25.
Herek, G. M., Mitnick, L., Burris, S., Chesney, M., Devine, P., Fullilove, M. T., et al.
(1 998). Workshop report: AIDS and stigma: A conceptual framework and
research agenda. AIDS & Public Policy Journal, 13, 36-47.
Holzemer, W. L., Corless, I. B., Nokes, K. M., Turner, J. G., Brown, M. A., PowellCope, G. M., et al. (1999). Predictors of self-reported adherence in persons living
with HIV disease. AIDS Patient Care & STDs, 13, 185-1 97.
Hull, H. F., Bettinger, C. J., Gallaher, R. M., Keller, N. M., Wilson, J., & Mertz, G. J.
(1 988). Comparison of HIV antibody prevalence in patients consenting to and
declining HIV antibody testing in an STD clinic. Journal of the American
Medical Association, 260, 935-938.
Hunter, C. E., & Ross, M. W. (1991). Determinants of health care workers' attitudes
toward people with AIDS. Journal of Applied Social Psychology, 21, 947-956.
Hutchinson, C. M., Wilson, C., Reichart, C. A., Marsiglia, V. C., Zenilman, J. M., &
Hook, E. W. (1 991). CD4 lymphocyte concentrations in patients with newly
identified HIV infection attending STD clinics. Journal of the American Medical
Association, 266, 253-256.
Hutchinson, S. A., & Wilson, H. S. (2001). Grounded theory: The method. In P. L.
Munhall (Ed.), Nursing research: A qualitative perspective (3rded., pp. 209-243).
Boston: Jones and Bartlett.
Joachim, G., & Acorn, S. (2000). Living with chronic illness: the interface of stigma
and normalization. Canadian Journal of Nursing Research, 32(3), 37-48.
Kalichman, S. C., & Nachimson, D. (1999). Self-efficacy and disclosure of HIVpositive serostatus to sex partners. Health Psychology, 18,281-287.
Karon, J. M., Fleming, P. L., Steketee, R. W., & DeCock, K. M. (2001). HIV in the
United States at the turn of the century: An epidemic in transition. American
Journal of Public Health, 91, 1060-1068.
Kaufman, J. M., & Johnson, C. (2004). Stigmatized individuals and the process of
identity. Sociological Quarterly, 45, 807-833.
Kemppainen, J. E., Holzemer, W. L., Nokes, K., Sanzero, L., Corless, I. B., Bunch, E.
H., et al. (2003). Self-care management of anxiety and fear in HIV disease.
Journal of the Association of Nurses in AIDS Care, 14(2), 2 1-29.
Kowaleski, M. R. (1 988). Double stigma and boundary maintenance: How gay men
deal with AIDS. Journal of Contemporary Ethnography, 17,211-228.
Lee, R. S., Kochman, A., & Sikkema, K. J. (2002). Internalized stigma among people
living with HIV-AIDS. AIDS and Behavior, 6, 309-3 19.
Lesserman, J., Jackson, E. D., Petitto, J. M., Golden, R. N., Silva, S. G., Perkins, D. O.,
et al. (1999). Progression to AIDS: The effects of stress, depressive symptoms,
and social support. Psychosomatic Medicine, 61, 397-406.
Lesserman, J., Perkins, D., & Evans, D. L. (1992). Coping with the threat of AIDS: The
role of social support. American Journal of Psychiatry, 149, 1514- 1520.
Lesserman, J., Petitto, J. M., Golden, R. N., Gaynes, B. N., Hongbin, G., Perkins, D. O.,.
et al. (2000). Impact of stressful life events, depression, social support, coping,
and cortisol on progression to AIDS. American Journal of Psychiatry, 157, 12211228.
Levin, L., Katz, A., & Holst, E. (1979). Self-care: Lay incentives in health. New York:
Provost.
Levin, L. S., & Idler, E. L. (1983). Self-care in health. Annual Review of Public Health,
4, 181-201.
Lewis, J. (1999). Status passages: the experience of HIV-positive gay men. Journal of
Homosexuality, 3 7(3), 87- 113.
Lewis, R. J., Derlega, V. J., Griffin, J. L., & Krowinski, A. C. (2003). Stressors for gay
men and lesbians: Life stress, gay-related stress, stigma consciousness and
depressive symptoms. Journal of Social and Clinical Psychology, 22,716-729.
Limandri, B. J. (1989). Disclosure of stigmatizing conditions: The discloser's
perspective. Archives of Psychiatric Nursing, 3(2), 69-78.
Lincoln, Y. S. (1 995). Emerging criteria for quality in qualitative and interpretative
research. Qualitative Inquiry, 1,275-289.
Lincoln, Y. S., & Denzin, N. K. (2000). The seventh moment: Out of the past. In N. K.
Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research, (2nded., pp.
1047-1065). Thousand Oaks, CA: Sage Publications.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage
Publications.
Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of
Sociology, 27(1), 365-385.
Lovejoy, N. C., Moran, T. A., & Paul, S. (1988). Self-care behaviors and informational
needs of seropositive homosexual/bisexual men. Journal of Acquired Immune
Deficiency Syndromes, 1(8), 155-16 1.
MacDonald, M. (2001). Finding a critical perspective in grounded theory. In R. S.
Schreiber, & P. N. Stern (Eds.), Using grounded theory in nursing (pp. 113-1 37).
New York: Springer Publishing.
MacDonald, M., & Schreiber, R. S. (2001). Constructing and deconstructing: Grounded
theory in a postmodern world. In R. S. Schreiber & P. N. Stern (Eds.), Using
grounded theory in nursing (pp. 35-54). New York: Springer Publishing.
Maine Department of Health and Human Services. (2005). State of Maine 2004-2005
HIV/AIDS epidemiological profile. Augusta, Maine: Author.
Malcolm, A., Aggleton, P., Bronfman, M., Galviio, J., Maine, P., & Verrall, J. (1998).
HIV-related stigmatization and discrimination: its forms and contexts. Critical
Public Health, 8,347-370.
Malcolm, S. E., Ng, J. J., Rosen, R. K., & Stone, V. E. (2003). An examination of
HIVIAIDS patients who have excellent adherence to HAART. AIDS Care, 15,
251-261.
Mallinson, R. K., Relf, M. V., Dekker, D., Dolan, K., Darcy, A., & Ford, A. (2005).
Maintaining normalcy: A grounded theory of engaging in HIV-oriented primary
medical care. Advances in Nursing Science, 28(3), 265-277.
Marshall, C., & Rossman, G. B. (1999). Designing qualitative research (3rded.).
Thousand Oaks, CA: Sage Publications.
Mays. V. M., & Cochran, S. D. (2001). Mental health correlates of perceived
discrimination among lesbian, gay and bisexual adults in the United States.
American Journal of Public Health, 91, 1869-1876.
Meyer, I. H. (1 995). Minority stress and mental health in gay men. Journal of Health
and Social Behavior, 36, 38-56.
Meyer, I. H. (2003). Prejudice, social stress, and mental health in lesbian, gay, and
bisexual populations: Conceptual issues and research evidence. Psychological
Bulletin, 129, 674-697.
Meyer, H. I., & Dean, L. (1998). Internalized homophobia, intimacy, and sexual
behavior among gay and bisexual men. In G. M. Herek (Ed.), Stigma and sexual
orientation: Understandingprejudice against lesbians, gay men and bisexuals
(pp. 160-186). Thousand Oaks, CA: Sage Publications.
Miles, M. B. & Huberman, A. M. (1 994). Qualitative data analysis (2" ed.). Thousand
Oaks, CA: Sage Publications.
Miller, J. F. (2000). Coping with chronic illness: Overcomingpowerlessness (3rded.).
Philadelphia, PA: F. A. Davis
Millikin, P. J., & Schreiber, R. S. (2001). Can you "do" grounded theory without
symbolic interactionism? In R. S. Schreiber & P. N. Stern (Eds.), Using grounded
theory in nursing (pp. 177-190). New York: Springer Publishing.
Moneyham, L., Seals, B., Demi, A,, Sowell, R., Cohen, L., & Guillory, J. (1996).
Perceptions of stigma in women infected with HIV. AIDS Patient Care and STDs,
10, 162-167.
Nott, K. H., Vedhara, K., & Power, M. J. (1995). The role if social support in HIV
infection. Psychological Medicine, 25, 97 1-83.
Novick, A. (1997). Stigma and AIDS: Three layers of damage. Journal of the Gay and
Lesbian Medical Association, ](I), 53-60.
Orem, D. E. (1987). Nurses and nursing knowledge. In K. N. Renpenning & S. G.
Taylor (Eds.), SelJlcare theory in nursing: Selectedpapers of Dorothea Orem
(pp. 178-188). New York: Springer Publishing.
Orem, D. E. (2001). Nursing: concepts of Practice (6thed.). St. Louis, MO: Mosby.
Pakenham, K. I. (1 998). Specification of social support behaviors and network
dimensions along the HIV continuum for gay men. Patient Education and
Counseling, 34, 147-157.
Parker, R. & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: a
conceptual framework and implications for action. Social Science & Medicine,
57, 13-24.
Peters, L., den Boer, D. J., Kok, G., & Schaalma, H. P. (1994). Public reactions towards
people with AIDS: An attributional analysis. Patient Education and Counseling,
24, 325-35.
Pickens, J. M. (1 999). Living with serious mental illness: The desire for normalcy.
Nursing Science Quarterly, 12, 233-234.
Plach, S. K., Stevens, P. E., & Keigher, S. (2005). Self-care of women growing older
with HIV and/or AIDS. Western Journal of Nursing Research, 2 7, 534-55 3.
Powell, J. L., Christensen, C., Abbott, A. S., & Katz, D. S. (1998). Adding insult to
injury: Blaming persons with HIV disease. AIDS and Behavior, 2, 30 1-317.
Preston, D. B., D'Augelli, A. R., Kassab, C. D., Cain, R. E., Schulze, F. W., & Starks,
M. T. (2004). The influence of stigma on the sexual risk behavior of rural men
who have sex with men. AIDS Education and Prevention, 16,291-303.
Preston, D. B., Forti, E. M., Kassab, C., & Koch, P. B. (2000). Personal and social
determinants of rural nurses' willingness to care for persons with AIDS. Research
in Nursing & Health, 23,67-78.
Pryor, J. B., Reeder, G. D., & Landau, S. (1999). A social-psychological analysis of
HIV-related stigma. American Behavioral Scientist, 42, 1189-1207.
Pryor, J. B., Reeder, G. D., Yeadon, C., & Hesson-McInnis, M. (2004). A dual-process
model of reactions to perceived stigma. Journal of Personality and Social
Psychology, 87,436 452.
Quinn, T. C., Wawer, M. J., Sewankambo, N., Senvadda, D., Li, C., Wabire-Mangen,
F., et al. (2000). Viral load and heterosexual transmission of human
immunodeficiency virus type 1. Rakai Project Study Group. New England
Journal of Medicine, 342,921 -929.
Reece, M. (2003). HIV-related mental health care: Factors influencing dropout among
low-income, HIV-positive individuals. AIDS Care, 15, 707-716.
Richardson, L. (1999, March 12). Girl Scouts are accused of violating girl's rights. The
New York Times, p. B5.
Richardson, L. (2000). Writing: A method of inquiry. In N. K. Denzin & Y. S. Lincoln
(Eds.). Handbook of qualitative research, (2nded., pp. 923-948). Thousand Oaks,
CA: Sage Publications.
Roberts, K. J. (2002). Physician-patient relationships, patient satisfaction and
antiretroviral adherence among HIV-infected adults attending a public health
clinic. AIDS Patient Care & STDs, 16,43-50.
Rose, L., Mallinson, R. K., Walton-Moss, B. (2002). A grounded theory of families
responding to mental illness. Western Journal of Nursing Research, 24, 5 16-536.
Schatz, B., & O'Hanlan, K. (1994). Anti-gay discrimination in medicine: Results of a
national survey of lesbian, gay, and bisexual physicians. San Francisco, CA: Gay
and Lesbian Medical Association.
Schreiber, R. S. (2001). The "how to" of grounded theory: Avoiding the pitfalls. In R.
S. Schreiber & P. N. Stern (Eds.), Using grounded theory in nursing (pp. 55-83).
New York: Springer Publishing.
Schreiber, R. S., & Stern P. N. (2001). Using grounded theory in nursing. New York:
Springer Publishing.
Schuster, M. A., Collins, R., Cunningham, W. E., Morton, S. C., Zierler, S., Wong, M.
et al. (2005). Perceived discrimination in clinical care in a nationally
representative sample of HIV-infected adults receiving health care. Journal of
General Internal Medicine, 20,807-8 13.
Scrambler, G., & Hopkins, A. (1986). Being epileptic: Coming to terms with stigma.
Sociology of Health and Illness, 8, 26-44.
Shilts, R. (1987). And the bandplayed on: Politics, People, and the AIDS epidemic.
New York: St. Martin's Press.
Siegel, K., & Krauss, B. J. (1991). Living with HIV infection: Adaptive tasks of
seropositive gay men. Journal of Health and Social Behavior, 32, 17-32.
Siegel, K., Lune, H., & Meyer, I. H. (1998). Stigma management among gayhisexual
men with HIVIAIDS. Qualitative Sociology, 21,3-24.
Singh, N., Berman, S. M., Swindells, S., Justis, J. C., Mohr, J. A., Squier, C., et al.
(1 999). Adherence of human immunodeficiency virus-infected patients to
antiretroviral therapy. Clinical Infectious Diseases, 29, 824-830.
Small, S., & Lamb, M. (1 999). Fatigue in chronic illness: The experience of individuals
with chronic obstructive pulmonary disease and with asthma. Journal of
Advanced Nursing, 30, 469-478.
Sontag, S. (1 989). AIDS and its metaphors. New York: Farrar, Strauss, and Giroux.
Sowell, R. L., Lowenstein, A,, Moneyham, L., Demi, A., Mizuno, Y., & Seals, B. F.
(1997). Resources, stigma and patterns of disclosure in rural women with HIV
infection. Public Health Nursing, 14, 302-3 12.
Sowell, R. L., Moneyham, L., Guillroy, J., Seals, B., Cohen, L., & Demi, A. (1997).
Self-care activities of women affected with human immunodeficiency virus.
Holistic Nursing Practice, 11(2), 18-26.
Stall, R., Hoff, C., Coates, T., Paul, J., Phillips, K. A., Ekstrand, M., et al. (1996).
Decisions to get HIV tested and to accept antiretroviral therapies among
gayhisexual men: Implications for secondary prevention efforts. Journal of
Acquired Immune Dejciency Syndromes and Human Retrovirology, 11, 151- 160.
St. Lawrence, J. S., Husfeldt, B. A., Kelly, J. A., Hood, H. V., & Smith, S. (1990). The
stigma of AIDS: Fear of disease and prejudice toward gay men. Journal of
Homosexuality, 19(3), 85-102.
Stone, V. E., Clark, J., Lovell, J., Steger, K. A., Hirschhorn, L. R., Boswell, S., et al.
(1 998). HIVIAIDS patient's perspectives on adhering to regimens containing
protease inhibitors. Journal of General Internal Medicine, 13, 586-593.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and
procedures for developing grounded theory (2" ed.). Thousand Oaks, CA: Sage
Publications.
Strauss, A. L., Corbin, J., Fagerhaugh, S., Glaser, B. G., Maines, D., Suczek, B., et al.
(1984). Chronic illness and the quality of life (2" ed.). St. Louis: Mosby.
Ullrich, P. M., Lutgendorf, S. K., & Stapleton, J. T. (2003). Concealment of
homosexual identity, social support and CD4 cell count among HIV-seropositive
gay men. Journal of Psychosomatic Medicine, 54, 205-21 2.
Ungvarski, P. J., & Grossman, A. H. (1998). Health problems of gay and bisexual men.
Nursing Clinics of North America, 34, 3 13-31.
Weitz, R. (1 990). Living with the stigma of AIDS. Qualitative Sociology, 13(1), 23-37.
Weitz, R. (1998). Uncertainty and the lives of persons with AIDS. Journal of Health
and Social Behavior, 30, 270-28 1.
Williamson, I. R. (2000). Internalized homophobia and health issues affecting lesbians
and gay men. Health Education Research, 15(1), 97-1 07.
Wuest, J. (1995). Feminist Grounded Theory: An exploration of the congruency and
tensions between the two traditions. Qualitative Health Research, 5, 125- 138.
Wuest, J., & Merrit-Gray, M. (2001). Feminist grounded theory revisited: Practical
issues and new understandings, In R. S. Schreiber, & P. N. Stem (Eds.), Using
grounded theory in nursing (pp. 159-1 76). New York: Springer Publishing.
Appendix
CODING PROCESS
Table A.1: Data Reduction of Unduplicated Open Codes to Axial Codes
Open (+ in vivo) codes +
Data Reduction:
Collapsed codes
Subcategories +
1.
2.
3.
4.
5.
6.
7.
8.
9.
gay = HIV;
HIV = being devalued;
HIV=death:
HIV = immorality;
HIV = poison/contamination;
HIV diagnosis devastating;
HIV diagnosis stigmatizing
HIV diagnosis stressful;
HIV dx = more fear than other
illnesses;
10. HIV stigma in non-gay community;
I I . HIV stigma in the gay community;
12. HIV stigma more than gay stigma;
I 3 . Ignorance about HIVtAIDS
14. internalized stigma;
15. manifestations of illness and sexuality;
16. manifestations of illness;
17. multiple HIV stigma sources;
1 8. pessimism in gay community;
19. sources of HIV stigma
20. stigma of HIV dx;
2 1 . victimization;
22.
23.
24.
25.
26.
felt gay stigma;
gay = deserving of HIV dx;
gay stigma in the gay community;
HlV = queen, feminine, unmanly;
multiple gay stigma sources:
27.
28.
29.
30.
3 1.
32.
avoiding social contact;
avoiding treatment;
caution;
denial about dx;
denial;
dx disclosure management;
dx stigma management;
guarded;
guarding;
hiding;
information management;
lying & disclosure management;
33.
34.
35.
36.
37.
38.
Axial ~ o d e s ;
2. Identifying
HIVIAlDS
stigma
Sources of HIVIAIDS stigma
I
Sources of gay stigma
1. Identifying
gay stigma
Being cautious to protect self
keeping the guard up;
Proceeding with caution;
1
selectively disclosing;
1
inforination management;
protection from
stigma: Hiding
and selective
disclosure
Table A. 1 continued
39, managing all stigma threats;
40. managing HIV stigma threats;
4 1. manifestation of illness and stigma
management
42. non-disclosure
43. non-disclosure = lying;
44. responding t o sigma;
45. safety in the gay community;
46. safety, maintaining safety
47. safety/comfort within the HIV+
community;
48. selectively disclosing HIV status
49. sexuality disclosure management;
SO. stigma avoidance
5 1. withdrawing
52.
53.
54.
55.
56.
57.
58.
59.
60.
6 1.
62.
63.
64.
65.
66.
67.
68.
building confidence;
building strength;
confidence;
countering gay stigma threats:
countering HIV stigma threats;
felt stigma;
health seekindhealth promotion;
maintaining self-esteem
manifestation of illness and
preemptive disclosure;
open sexuality disclosure;
openly positive response;
positive stigma response;
preemptively responding to sigma;
providing education
self-esteem & stigma management;
self-identity;
stigma confrontation;
fi
Hiding;
withdrawing;
degree of confidence
5. Counter
Stigma:
preemptive
disclosure
Discrediting stigma sources;
Managing the sources of fear &
stress
stigma response;
proactive response
Table A. 1 continued
69.
70.
7 1.
72.
73.
74
75.
76.
77.
78.
79.
80.
8 1.
82.
83.
84.
85.
86.
87.
88.
89.
90.
adjustment trajectory;
building confidence;
building self-esteem;
comfort with dx disclosure
management;
comfort with sexuality;
comfort with sexuality: disclosure;
disclosure by manifestations of illness;
experience and maturity;
gradual self-acceptance
HIV & effects of time;
hope;
impact of agehime on perceptions of
stigma;
information management;
looking for normalcy in the gay
community;
openness about sexuality;
safety/comfort within the HIV+
commurlity for normalcy;
seeking positive contacts;
self-esteem & confidence, from
maturity;
stigma management;
striving for normalcy;
time and stigma management;
trust vs. threat;
6. Striving for
Adjusting for balance/equilibrium
balance1
normalcy
Maintaining normalcy
I
Building trust and confidence
--
Seeking social support
9 I . consequences of dx disclosure;
92. consequences of stigma;
93. disclosure because of manifestations
of illness;
94. dx disclosure management;
95. fear of death;
96. fear of disclosure in work setting;
97. fear of dx disclosure responding to
fear/sources of fear;
98. fear of HIV dx;
99. fear of loss of livelihood 2" to HIV;
100.fear of others knowing status;
I0 I . fear of unknown;
102.HIV stigma worse than sexuality
disclosure;
103.internalization: rejection, shame
104.stigma of diagnosis
105.stress of disclosure management;
I 06. stress of disclosure;
107.stress of dx disclosure management;
108.stress of HIV dx;
1 09. stress of illness management;
1 10.uncertainty;
3. Identifying
the impact of
stigma
Dealing with consequences
Sources of fear and stress
Table A. 1 continued
1 I I .attitudes in gay community;
I 12.building affirmed identity;
1 I 3. focus on self-care;
Acceptance of self & illness;
Accepting stigmatized identity
I 14.giving and receiving;
1 15.maintaining hope;
1 16.maintainin.g self-esteem;
1 17.providing education;
1 18.responsible behavior management;
1 19 seeking atlirniing environments;
120.seeking positive contacts;
12 I . seeking safety in the gay community:
122 seeking social contacts/support
123.stigma and risk behavior;
124.stigma and sexual risk behavior;
125.stigma self-acceptance;
126 support within the HlV+ community;
127.working on self-acceptance
Adjusting for balancelequilibrium
Seekingltinding social support
Building self-esteem
-
Etfects of stigma response on health,
self care
Providing ed~~cationlsupport
Seeking aflirmation of identity
7. Impact of
stigma on selfcare: the role of
social support..
BIOGRAPHY OF THE AUTHOR
Chr~sChenard was born and ralsed In Maine. He received a Bachelor of Science
degree froin the University of Maine at Farmington in 1973, a Masters in Education
from the University of Maine at Orono in 1978, and a Masters in Primary Health Care
Nursing from Simmons College in 1996. He works as a nurse practitioner for the City
of Portland, Maine, Department of Health and Human Services, Public Health Division.
He is a candidate for the Doctor of Philosophy degree, interdisciplinary in Nursing and
Health Science from The University of Maine in May 2006.