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Developing a Measure of Stigma by Association With African American Adolescents Whose Mothers Have HIV

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Abstract

Objectives: African American urban adolescents are one of the fastest growing groups of children affected by their mother’s HIV status. These children experience HIV stigma by association with their HIV-positive mothers. Stigma may contribute to adverse outcomes for these teens. Methods: The authors describe a multistage process of scale construction, cognitive interviewing, and pilot testing to develop a measure reflecting an African American adolescent’s experience of HIV stigma when mother has HIV. Results: The resulting measure has 23 items with good reliability. An additional item suggested by qualitative data will be added to the measure and used in further testing. Conclusions: Potential uses of the measure are discussed. Intervention approaches for reducing stigma’s impact among HIV-affected African American adolescents are briefly outlined.
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Research on Social Work Practice
DOI: 10.1177/1049731508330223
2010; 20; 65 originally published online Apr 13, 2009; Research on Social Work Practice
Sally Mason, Barbara Berger, Carol Estwing Ferrans, Vickey Sultzman and Michael Fendrich
Have HIV
Developing a Measure of Stigma by Association With African American Adolescents Whose Mothers
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65
Developing a Measure of Stigma by Association
With African American Adolescents Whose
Mothers Have HIV
Sally Mason
Barbara Berger
Carol Estwing Ferrans
Vickey Sultzman
University of Illinois at Chicago
Michael Fendrich
University of Wisconsin–Milwaukee
Objectives: African American urban adolescents are one of the fastest growing groups of children affected by their mother’s
HIV status. These children experience HIV stigma by association with their HIV-positive mothers. Stigma may contribute
to adverse outcomes for these teens. Methods: The authors describe a multistage process of scale construction, cognitive
interviewing, and pilot testing to develop a measure reflecting an African American adolescent’s experience of HIV stigma
when mother has HIV. Results: The resulting measure has 23 items with good reliability. An additional item suggested by
qualitative data will be added to the measure and used in further testing. Conclusions: Potential uses of the measure are
discussed. Intervention approaches for reducing stigma’s impact among HIV-affected African American adolescents are
briefly outlined.
Keywords: stigma-by-association; HIV; instrument development; adolescents; African American; mothers
S
tigma is “an attribute that is deeply discrediting,
marking the person not only as different but as “bad
or dangerous or weak” (Goffman, 1963, p. 3). Stigma,
however, not only marks the person with the stigmatizing
condition, but also has a ripple effect outward that affects
family, friends, and loved ones (Goffman, 1963). This
effect—courtesy stigma or stigma by association—has
been documented with a range of conditions or character-
istics, for example, ADHD (attention-deficit hyperactivity
disorder), disabilities, epilepsy, homosexuality, substance
abuse, and mental retardation (Austin, MacLeod, Dunn,
Shen, & Perkins, 2004; Birenbaum, 1992; Corrigan,
Watson, & Miller, 2006; Green, 2003; Neuberg, Smith,
Hoffman, & Russell, 1994; Norvilitis, Scime, & Lee,
2002). Stigma by association is often characterized by
increased stress and limited social interactions for family
members (Austin et al., 2004; Green, 2003).
Increasingly an epidemic of a inner-city areas in the
United States, HIV disease is one of the most stigma-
tized illnesses in modern history (Kalichman, 1998;
Parker & Aggleton, 2003). Almost 20 years into the
epidemic, misconceptions about transmission through
casual contact had increased in the general public and a
significant number of Americans still expressed anger,
fear, disgust, and that people with HIV/AIDS “got what
they deserve” (Herek, Capitanio, & Widaman, 2002). Due
to stigma, people with HIV report being rejected, excluded,
and shunned with related feelings of anger, anxiety,
depression, hopelessness, loneliness, and decreased self-
esteem (Antle, Wells, Goldie, DeMatteo, & King, 2001;
Ingram & Hutchinson, 1999; Leary & Schreindorfer,
1998; Sandelowski, Lambe, & Barroso, 2004). Studies
indicate significant relationships between stigma and
depression, hopelessness, and psychological functioning
Authors’ Note: The authors would like to thank Geri Donenberg,
Kesha Eason, Stephanie Schmitz, and the adolescents who partici-
pated for their contributions to this project. This project was funded
in part by the Campus Research Board and the Great Cities Institute,
University of Illinois at Chicago. Correspondence may be addressed
to Sally Mason, Institute for Juvenile Research, University of Illinois
at Chicago (M/C 747), 1747 W. Roosevelt, Rm. 155, Chicago, IL
60608; e-mail: smason@psych.uic.edu.
Research on Social Work Practice
Volume 20 Number 1
January 2010 65-73
© 2010 The Author(s)
10.1177/1049731508330223
http://rswp.sagepub.com
Research Article
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from
66 Research on Social Work Practice
in people living with HIV (Clark, Lindner, Armistead, &
Austin, 2003; Lee, Kochman, & Sikkema, 2002;
Prachakul, Grant, & Keltner, 2007). Family members or
friends of people with HIV often describe stigma-like
concerns, including fear of potential rejection, anger,
shame, and experiences of discrimination (Burton et al.,
2008; Joslin, 2000; Joslin & Harrison, 1998; Poindexter,
2002). Children report worries that they may be rejected
or considered HIV positive if others find out their par-
ent’s status (Brackis-Cott, Mellins, & Block, 2003;
Murphy, Roberts, & Hoffman, 2002). In fact, children
and adolescents may feel stigma as acutely as their HIV-
positive parents because of their close connection and
because children cannot easily distance themselves from
the stigmatized person as a friend or extended family
member might (Cree, Kay, Tisdall, & Wallace, 2004;
Goffman, 1963).
The majority of HIV-affected families in the United
States are low-income, African American women and
their children living in the inner city. African American
women are disproportionately affected by HIV in the
United States (Centers for Disease Control, 2003); an
African American woman is 23 times more likely to be
infected than a White woman. As women account for a
growing percentage of people with HIV
(Centers for
Disease Control, 2003; Hader, Smith, Moore, & Holmberg,
2001) and as people with HIV are living longer with
highly active antiretroviral therapy (HAART; Centers for
Disease Control, 2003), the number of African American
inner-city adolescents whose mothers have HIV contin-
ues to rise.
Studies of HIV-affected adolescents suggest that their
outcomes, such as substance abuse, sexual risk, and
mental health disorders, do not differ significantly from
non-HIV-affected teens (Mellins, Brackis-Cott, Dolezal,
& Meyer-Bahlburg, 2005; Lee, Lester, & Rotheram-
Borus, 2002) except when youth know their parent’s
HIV status. Adolescents of infected parents who know
their parent’s HIV status have more emotional distress,
thought or attention problems, substance use, and sexual
risk than those who do not know
(Lee et al., 2002;
Mellins et al., 2005) indicating that the adolescent’s
knowledge of the parent’s status may be a key variable
in understanding risk for this population. Knowledge of
the parent’s HIV status is also likely a prerequisite for
experiencing HIV-associated stigma (Berger, Ferrans, &
Lashley, 2001) suggesting a relationship between stigma
and adverse outcomes for HIV-affected adolescents.
Stigma may be an important mechanism that explains
these youths’ increased rates of mental health problems
and risk behavior.
Measure Development
A literature review yielded no measures of HIV
stigma by association relevant to adolescents, nor were
they comprehensive in scope. When stigma by associa-
tion has been studied in children of mothers with HIV,
children’s experience has usually been explored qualita-
tively (Cree et al., 2004; Murphy et al., 2002). Two pub-
lished studies measured adolescent HIV stigma by
association in the United States as one of several vari-
ables examining the relationship between mothers and
children. Lee and Rotheram-Borus (2002) asked HIV-
positive mothers to rate their children’s experience of
stigma as absent or present on five items, that is, had the
adolescent been (1) teased, (2) ignored or isolated, (3)
gossiped about, (4) assaulted, or (5) questioned related to
their parents’ HIV status. Most recently, Murphy, Austin,
and Greenwell (2006) measured stigma by association in
44 adolescents by selecting 19 items from the HIV
stigma scale for adults who are HIV positive (Berger et
al., 2001) and modifying the items to represent the sec-
ondary target’s experience of stigma.
To address the need for a comprehensive and valid
measure for use with HIV-affected adolescents, the
authors followed a multistage process beginning with
scale construction and a content analysis by the authors—
experts in HIV, stigma, adolescents, families, and mea-
sure development. In the second stage, African American
HIV-affected teens participated in cognitive interviews to
assess comprehension and relevance as well as content
validity; scale modifications were made based on their
responses. The last stage was data analysis with a small
sample of African American HIV-affected teens resulting
in further refinement of the measure and the establish-
ment of initial psychometric properties on reliability.
Stages 2 and 3 were approved by the University of Illinois
at Chicago Institutional Review Board (IRB).
Content Validity
Scale construction. As a first step, the authors reviewed
the HIV stigma scale items to determine how they could
be modified to reflect HIV stigma by association or stigma
as experienced by secondary targets. The HIV stigma
scale is a 40-item Likert-type scale used extensively and
further refined with HIV-positive adults (Bunn, Solomon,
Miller, & Forehand, 2007; Emlet, 2007; Murphy et al.,
2006; Wright, Naar-King, Lam, Templin, & Frey, 2007).
Five items from the public attitudes subscale did not
require rewording as the items ask for the respondent’s
agreement with public attitudes, rather than about the
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Mason et al. / African American Adolescents Whose Mothers Have HIV 67
respondent’s personal experience of or concerns about
stigma; for example, “Most people are uncomfortable
around someone with HIV.” The remaining items were
reworded to reflect the perspective of a child whose mother
has HIV, often with the simple addition of the words such
as, “my mom.
Original: I work hard to keep my HIV a secret.
Modified: I work hard to keep my mom’s HIV a secret.
As items were changed the wording was reviewed for
clarity, specifically to 13- to 18-year-olds. For example,
the original item, “Telling someone I have HIV is risky,
was changed to, “Telling someone my mom has HIV is
risky.With the addition of my mom, the item retained its
clarity and meaning. On the other hand, “I feel that I am
not as good a person as others because my mom has HIV
(original, “I feel I am not as good a person as others
because I have HIV”) was less clear than the original,
especially for use with younger teens. This item was
changed to “I feel worse about myself because my mom
has HIV.
After modifying all of the items, the authors reviewed
them for relevance to HIV-affected adolescents. To make
those decisions, the authors drew from the literature
about stigma, courtesy stigma or stigma by association,
HIV, and HIV-affected children, and from the authors’
extensive practice and research experience with people
with HIV and their loved ones, chronic illness, child and
family mental health, and stigma. The HIV stigma scale
for adults has four subscales: personalized stigma, disclo-
sure concerns, negative self-image, and concern with
public attitudes about people with HIV, which also served
as a guide for developing new items relevant to teens.
Additional items were developed to reflect an adoles-
cent’s experience of personalized stigma (fears, personal
experiences) and disclosure concerns. Personalized
stigma items that were added addressed experiences or
fears related to peers or classmates. For example,
It hurts me to hear my friends make fun of people with
HIV.
I would have more friends if my mom didn’t have HIV.
Disclosure items added reflected the burden of keeping
the secret for and with mother or the lack of control over
disclosure. Examples include
I worry that I may tell someone by accident that my
mom has HIV.
If someone asks me if my mom has HIV, I deny it.
I wish my mom would not tell anybody that she has
HIV.
Additional domains were considered and items were
constructed to capture those domains. The new domains
considered relevant to affected adolescents, with item
examples, were as follows:
1. Adolescent developmental tasks, including the identi-
fication with peers rather than parents, and the avail-
ability of future opportunities.
I avoid inviting friends over to my house because my
mother has HIV.
Because my mom has HIV, I can’t get a girlfriend/
boyfriend.
Even my best friend doesn’t know that my mom has
HIV.
2. Direct transfer of HIV to self, being perceived as
infected or bad or immoral.
Because my mom has HIV, I worry that others will
think I do too.
3. Family processes around disclosure and managing
stigma.
My family thinks we should keep my mom’s HIV a
secret.
The result of this process was a 45-item scale.
Cognitive interviewing. As a second step, the newly
adapted measure was tested using cognitive interviewing
methods. Cognitive interviewing techniques assess the
respondents’ comprehension of the questions and thus
reveal whether a question’s meaning to the respondent is
consistent with its intent (Warnecke et al., 1996; Willis,
2004). These methods are also useful in ensuring that the
measure’s language is culturally and developmentally
appropriate, which are key concerns, given our target
group’s developmental stage (adolescence) and race
(African American).
Eight African American HIV-affected adolescents (six
female and two male) between the ages of 12 and 19
who knew their parent’s HIV status were recruited
through a program for HIV-positive parents. Each ado-
lescent participated in interviews lasting approximately
two hours in length to explore the applicability of the
newly adapted measure to African American adolescents
whose mothers have HIV. In the cognitive interviews,
adolescents gave a Likert-type response to a scale item
and then were asked to think aloud about their response;
for example, “When you answered this question, what
kinds of things did you think about?” The teens were
also asked about specific words in the items, for example,
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68 Research on Social Work Practice
disgusting or energy, to determine whether the words
had the same meaning for them; for example, “What do
you think we mean by ‘energy’?” These responses
yielded information about the adolescents’ understand-
ing of the items, the items’ relevance, and modifications
to improve the items’ comprehension. Table 1 includes
additional examples of probes that the interviewers used
and responses given by one of the teens; this teen, like
the others, had not told anyone the parent’s HIV status.
After the first five interviews, the authors reviewed the
interview data. All of the teens appeared to understand
the items as intended. However, 11 of the items were
deleted based on the lack of variability in response, spe-
cifically if none or few of the teens agreed with the item,
indicating that the item did not capture stigma.
An additional 12 items were modified for clarity. Nine
items were changed to address the fact that, when asked
at the beginning of the interview about who they had told,
all said that they had not told anyone their mother’s status.
This was consistent with the authors’ experience as well
as the literature; many mothers instruct their children to
keep the mother’s status a secret in order to protect both
mother and child from stigma and discrimination (Murphy
et al., 2002). The wording for these nine items was
changed to suggest the potential impact of telling some-
one else, rather than assuming that the teen had told
someone.
Original: Telling others that my mom has HIV has been a
mistake .
Modified: It would be a mistake to tell others that mom has
HIV.
Three items were changed slightly based on the teens’
suggestions or their responses to the think aloud
questions.
Original: I work hard to keep my mom’s HIV a secret.
Modified: It takes a lot of energy to keep my mom’s HIV
secret.
Original: People with HIV are treated like outcasts.
Modified: People with HIV are treated like outcasts when
others know they have HIV.
Original: I’d rather avoid new friendships than tell them
that my mom has HIV.
Modified: I avoid making new friends because my mom has
HIV.
One new item was added based on the teens report
that none had disclosed their mother’s HIV status: “I
wish I didn’t have to keep my mom’s HIV a secret.
Probes were added to three items to clarify whether a
teen might be reluctant to answer the item honestly, for
fear of appearing disloyal to mother. For example
Item: I feel ashamed that my mom has HIV.
If the teen disagreed with the item (low stigma), the
interviewer asked,
Would you feel uncomfortable agreeing with this state-
ment? How come?
Do you think another teen might be uncomfortable agreeing
with this statement? How come?
An additional three adolescents were interviewed with
the above changes. Again, the authors reviewed the
interview data and modified the measure accordingly.
Three items not previously modified were changed, as
noted above, to reflect the lack of disclosure by many
teens and to consider, instead, the impact if the teen were
to tell someone. For example,
Original: People avoid touching me if they know my mom
has HIV.
Modified: People would avoid touching me if they knew my
mom has HIV.
Table 1
Cognitive Interview Example
Interviewer’s Question Teen’s Response
It hurts me to hear my friends make fun of people with HIV. Strongly agree
How much do you agree or disagree with that statement—strongly
agree, agree, disagree, or strongly disagree?
When you answered this question, what kinds of things did you I tell my friends, “You shouldn’t do that. You don’t know what
think about? you’re saying. That’s ignorant.
What are some ways that your friends “make fun” of people They say, “I wouldn’t want to sit in the same seat after a person
with HIV? with AIDS sat there.” They say, “I got AIDS” to get rid of boys
who are bothering them.
Who were you thinking of when you thought of “friends”? People that I confide in or hang out with. Sometimes associates
hurt too. It depends on whether I am having a stronger day.
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Mason et al. / African American Adolescents Whose Mothers Have HIV 69
Finally, the public attitudes items were moved to the
end of the measure with an introductory statement
reminding the teen to respond based on how most people
think or act, rather than based on the teens’ own beliefs
or actions. The result of the cognitive interviews was a
35-item measure using a Likert-type response (from 1 =
strongly disagree to 4 = strongly agree) with a high score
indicating high stigma.
Internal Consistency and Reliability
For the next step, the measure was implemented with
27 African American noninfected teens in a pilot study
examining teen’s experience of HIV stigma by associa-
tion and the relationship between stigma and teen risk.
The HIV Stigma-by-Association scale for adolescents
was administered as part of the interview, and the ado-
lescents’ responses were analyzed to further inform the
scale’s development. The measure was administered
using audio computer-assisted, self-interviewing meth-
ods (ACASI); the adolescents responded to the items on
a laptop computer. This interview technique enhances
data validity by increasing the adolescents’ privacy when
responding to questions about sensitive topics, for exam-
ple, HIV. As the computer was audio equipped, potential
literacy problems were also alleviated. The interviewer
remained in the room with the adolescent to answer
questions or provide help with the computer, if neces-
sary. The adolescents were also asked four open-ended
questions about stigma in order to garner additional
dimensions or items for the measure.
All of the teens lived in a large Midwestern urban area
and identified as African American, and among these
two were bi-racial (African American/Puerto Rican and
African American/Belizean). Because the majority of
adults with HIV who are actively parenting are women,
the study was confined to teens living with mothers. For
the study, the word mother was defined as an adult
female who had been primary caregiver for the adoles-
cent for at least 6 months. All of the teens were being
cared for by their HIV-positive biological mother, except
for one adolescent who was being cared for by a grand-
mother with HIV. Most of the teens (N = 21) had lived
with mother for their entire lives. Of the six other teens,
three had lived with mother on and off their entire lives,
going back and forth between mother and a grandmother
or father; three were currently living with mother and
had started living with her from 3 to 6 years ago.
The adolescents were in the age range of 13 to 18
years with a mean age of 15.85 years (SD = 1.88); 13
(13) of the 27 adolescents or 48% were female. In order
to qualify for the study, a teen needed to have known
mother’s HIV status for at least 3 months. In actuality,
the teens had known mother’s status from 6 months to
over 12 years, with a mean time of 5 years and 3 months
since the disclosure of HIV status. All had been told their
mother’s status by the mother.
As the study was conducted using audio computer-
assisted self-interviewing methods (ACASI), there were
no missing data. The Cronbach’s alpha for the 35-item
scale (N = 27) was .67. In order to refine the measure, the
research team conducted an item analysis. Items with
item–total correlations .100 were reviewed to deter-
mine whether they should be deleted or whether they
might be improved with rewording. With this sample
size, .100 is a lower critical value than indicated (N = 27;
r = .3809). However, because the sample was small, and
to avoid the risk of deleting items that might be highly
correlated in a larger sample, the authors chose the lower
critical value as the cutoff point for inclusion in the scale.
Upon review, all items with an item-total correlation
.100 had confusing or vague wording and modifying
the items would have increased redundancy, rather than
improved the measure Thus, all of these items were
deleted.
In addition, the range of scores was examined for each
of the remaining items. Those with a restricted range,
specifically with only disagree or strongly disagree
responses, indicating low stigma, were deleted. Upon
closer review, those items (1) were worded ambiguously,
and the wording could not be improved without redun-
dancy with other items; (2) did not reflect stigma as
concretely as other items; and/or (3) required the teen to
express negative feelings about the mother, which could
be interpreted as disloyal.
In all, 12 items were dropped based on the above
analysis leaving 23 items from the original measure of
35. The 23-item scale scores ranged from 29-84 (possi-
ble range of 23-92) with a mean of 53.96 (SD = 10.804)
and a median of 55. Cronbach’s alpha for those 23 items
(N = 27) was .866. There were no significant differences
in stigma scores between genders (
χ
2
= .40, p = 1.000) or
age (
χ
2
= .942, p = .449); these findings support the mea-
sure’s internal consistency.
Two items (Item 16 and Item 19) in the revised measure
have notably low item–total correlations and, if removed,
would increase the alpha slightly. Again, rather than delete
those items at this point, the authors chose to retain them
for the next stage of testing with a larger sample.
Qualitative data from the pilot interviews were
examined for additional domains and/or stigma experi-
ences not already included in the measure. One new
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70 Research on Social Work Practice
idea that emerged was the fear that if a friend or family
member knew the mother’s HIV status that knowledge
might be used later to hurt or shame the teen. Several
teens used this response, “They might use it against
you,” as a reason not to tell others. Another cited a spe-
cific incident in which he had told an extended family
member about his mother’s HIV status and had it
thrown back at him weeks later during a family argu-
ment. This concern–“used against me”–was not reflected
in any of the current measure items. It also appeared to
be a function of stigma and was offered, without prob-
ing, by at least three teens in response to the open-
ended questions. As a result, the authors are considering
adding one more item for the measure’s next stage of
testing, “If people know my mom has HIV, they might
use it against me.
Discussion and Applications to Social Work
Children experience stigma by association with a par-
ent living with HIV. Through the described stages of
testing, the HIV Stigma-by-Association scale was scaled
down from 45 items to a 23-item measure with good reli-
ability with African American adolescents in the age
group of 13 to 18 years who are living with mothers with
HIV. An additional item suggested by qualitative data
from a pilot study will be added to the measure and used
in further testing. A planned in-depth analysis of the pilot
qualitative data will also yield greater understanding of
how teens experience stigma through their mothers and
inform the measure’s refinement.
The measure was developed specifically for African
American adolescents so it could be used in future stud-
ies involving a larger sample of this group and because
the group represents the largest numbers of HIV-affected
youth in the United States. By limiting the samples to
teens who identified themselves as African American,
the researchers’ intent was to develop a culturally rele-
vant measure. Although it has not been tested with youth
of other races or ethnicities, it may have applicability to
other youth as well. The measure may also have applica-
tion for youth experiencing stigma by association with
fathers and other family members or, with modification,
stigma due to conditions other than HIV.
Table 2
Descriptive Statistics and Reliability Revised Scale of 23 Items
Minimum/ Corrected Item–
Item Maximum M SEM Total Correlation
1. Telling someone is risky 1/4 3.00 0.233 .355
2. Careful who I tell 1/4 1.89 0.187 .338
3. Worry others can tell 1/4 2.07 0.206 .562
4. Hurts when friends make fun 1/4 3.19 0.193 .301
5. Try to hide the fact 1/4 3.22 0.145 .541
6. Friends don’t know 1/4 2.78 0.202 .338
7. Would avoid touching me 2/4 3.41 0.144 .332
8. Would stop calling me 1/4 2.96 0.189 .342
9. Parents not allow around kids 1/4 2.70 0.205 .553
10. Friends would drop me 1/4 1.85 0.166 .637
11. People afraid of me 1/4 1.78 0.163 .597
12. Would grow more distant 1/4 1.70 0.139 .654
13. No dates 1/3 1.59 0.110 .408
14. People look down on me 1/4 1.74 0.156 .500
15. Wish did not keep secret 1/4 2.00 0.192 .459
16. Feel worse about self 1/4 2.04 0.164 .068
17. Would think I’m bad person 1/4 1.67 0.151 .657
18. HIV treated like outcasts 1/4 1.59 0.144 .313
19. Most think HIV disgusting 1/4 2.33 0.185 .122
20. Best friend doesn’t know 1/4 2.63 0.214 .534
21. Avoid new friends 1/4 2.81 0.200 .616
22. Feel set apart 1/4 2.07 0.192 .536
23. Worry will be rejected 1/4 2.93 0.199 .444
TOTAL score 29/84 53.963 2.07926
Note: Total number of participants in the study sample: N = 27.
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Mason et al. / African American Adolescents Whose Mothers Have HIV 71
The measure will benefit from testing in larger sam-
ples, facilitating the use of additional psychometric tech-
niques, such as factor analysis. Larger samples will also
allow us to delve further into construct validity issues. In
the absence of other measures of stigma by association
for comparison, we will focus on convergent and predic-
tive validity. In other populations experiencing stigma by
association, stigma is exemplified by reduced social
interaction or isolation and feelings of shame. We will
identify measures of these constructs and correlate them
with the stigma-by-association measure to assess conver-
gent validity. In addition, research with HIV-affected
children indicates that stigma by association is a predictor
of adverse outcomes, for example, depression, loneliness,
externalizing behaviors, and low self-esteem. In order
to determine the measure’s predictive validity, we will
examine the relationship between measures of those out-
comes with the stigma-by-association measure relative to
other predictors in a multivariate analysis.
With additional refinement, this measure can be used
to explore associations between stigma, adolescent
adverse outcomes, and adolescent or parent characteris-
tics. This research could prove vital in informing the
direction of much-needed services and interventions for
HIV-affected families. As the research indicates, if
disclosing a parent’s HIV status is associated with ado-
lescent adverse outcomes and stigma, parents and teens
may benefit from interventions that support the decision
to disclose, reduce the impact of stigma, and also support
positive outcomes. The measure may be used to identify
teens who would benefit from an intervention to reduce
stigma’s impact and to assess change in stigma level
after intervention. Group interventions with affected
teens can ameliorate the isolation and strained peer rela-
tionships that teens reported in the cognitive interviews
and in other studies with the research team (see Mason,
Sultzman, Berger, & Ferrans, 2008). As stigma appears
to be transmitted from mother to child, with children
Table 3
HIV Stigma-by-Association Scale for Adolescents
We would like to ask you some questions about having a mother with HIV. There are no right or wrong answers. We just want to know what
you think.
All of the items are statements describing what it is like for a teen to have a mother with HIV. When we say, “mother”, we mean the person who
you live with and who you consider to be your parent. That person might be your aunt or grandmother, for example, but she is helping raise
you, rather than your birth mother.
We want to know how much your experience is like each statement. The choices for answering the questions are strongly disagree (SD),
disagree (D), agree (A), or strongly agree (SA). As I read each item out loud, decide how much your experiences or feelings are like the
statement and tell me how much you agree or disagree with each statement.
1. Telling someone my mom has HIV is risky.
2. I feel worse about myself because my mom has HIV.
3. Even my best friend doesn’t know that my mom has HIV.
4. I avoid making new friends because my mom has HIV.
5. Because my mom has HIV, I feel set apart and isolated from the rest of the world.
6. I worry about being rejected if others find out that my mom has HIV.
7. I am very careful who I tell that my mom has HIV.
8. I worry that other people can tell that my mom has HIV.
9. It hurts me to hear my friends make fun of people with HIV.
10. I try to hide the fact that my mom has HIV.
11. Many of my friends don’t know that my mom has HIV.
12. People would avoid touching me if they knew my mom has HIV.
13. People would stop calling me when they found out my mom has HIV.
14. Parents wouldn’t want me around their kids if they knew my mom has HIV.
15. Friends would drop me if they knew my mom has HIV.
16. People would be afraid of me if they knew my mom has HIV.
17. People would grow more distant if they knew my mom has HIV.
18. If people knew my mom has HIV, I wouldn’t be able to get a date.
19. People would look down on me if they knew my mom has HIV.
20. I wish I didn’t have to keep my mom’s HIV a secret.
21. People would think I’m a bad person if they knew my mom has HIV.
22. If someone knows my mom has HIV, they might use it against me.
The next questions are about how OTHERS feel or think about people with HIV/AIDS.
23. People with HIV are treated like outcasts when others know they have HIV.
24. Most people think that a person with HIV is disgusting.
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from
72 Research on Social Work Practice
often the keeper of mother’s secret, interventions would
empower teens to manage stigma situations, with moth-
ers as their coaches and supports.
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... Figure 2 shows the map of the geographical distribution of these studies. Twenty-four of the included studies [20,22,23,39,40,45,63,69,70,[91][92][93]95,97,107,111,118,121,144,146,147,171,178,184] were development and/or validation studies of the HSS and/or its abbreviated versions. The remaining studies were observational or experimental studies that used the HSS to assess HIV-related stigma in different contexts. ...
... The recruited participants included diverse samples of PLWH, including adolescents and young adults living with HIV in 12 studies [22,23,38,62,72,80,83,125,126,129,163,178], adolescent girls and young women living with HIV in four studies [33,54,68,117], pregnant women living with HIV in one study [31], older women living with HIV in one study [151], older adults living with HIV in seven studies [44,61,63,77,81,139,161], women living with HIV in 19 studies [25,42,50,[57][58][59]89,90,110,123,135,136,138,141,157,158,168,169,179], men living with HIV in six studies [46,75,78,108,153,159], MSM living with HIV in 15 studies [24, 53,79,85,86,102,104,116,124,142,148,160,171,174,182], female sex workers living with HIV in three studies [51,99,190], transgender women living with HIV in two studies [34,101], inmates living with HIV in one study [114], injectable drug users in one study [39], sexually active PLWH in one study [74], and homeless PLWH in one study [177]. Four studies [40, 55,106,118] recruited HIV-affected participants and adapted the HSS to assess stigma-by-association in this population. The remaining studies (n = 88) recruited participants from the general population of PLWH. ...
... Fourteen studies [20,35,40,63,70,91,97,104,107,111,118,137,147,184] evaluated the content validity of the HSS. Of these, three studies [35, 70,91] also evaluated the scale's face validity. ...
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... In a recent scoping review of 26 articles, the underlying mechanisms by which YPAHIV experience HIV-related stigma, and their associations with poor mental health were reported to be similar to those for YPLHIV [31]. The HSS has been previously adapted to measure HIVrelated stigma among YPAHIV in the United States [32] and South Africa [33], but no adaptations currently exist for Indian YPAHIV. ...
... Internal construct validity was evaluated using correlations between subscales, and convergent validity using correlations between the HSS, the identified scale and with CES-D(C) and UCLA Loneliness scales. We hypothesized that the subscales would be positively correlated with each other, and, with depressive and loneliness scores, as reported in previous studies [32,41,42]. All evaluations were conducted separately for YPLHIV and YPAHIV. ...
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Background HIV-related stigma is associated with poor quality of life and poor healthcare-seeking behaviours in young people living with HIV (YPLHIV) and young people affected by HIV (YPAHIV). India has an estimated 120,000 YPLHIV and 4 million YPAHIV, but efforts to measure HIV-related stigma in them are sparse, impeded by the lack of measuring instruments. Here, we describe the development of the Pune HIV-Stigma Scale (PHSS) and modified-PHSS to measure HIV-related stigma among YPLHIV and YPAHIV, respectively, in India. Methods We used data from a mental health study for YPLHIV and YPAHIV aged 15–25 years, conducted at Byramjee Jeejeebhoy Government Medical College & Sassoon General Hospitals, Pune, India, between August 2018 and June 2021. Findings from multiple confirmatory factor analyses and cognitive interviews guided the development of the 12-item PHSS. The modified-PHSS was developed by confirming the structure of the PHSS for YPAHIV. Convergent validity with Center for Epidemiological Studies Depression (CES-D) and UCLA Loneliness scales was assessed using Spearman’s correlation coefficients. Results Model fit indices were good for both the PHSS (χ ² = 65.0, df = 48, p value: 0.052; root mean square error of approximation (RMSEA): 0.054; comparative fit index (CLI): 0.980; Tucker–Lewis index (TLI): 0.972; and standardized root mean square residual (SRMR): 0.067), and the modified-PHSS (χ ² = 56.9, df = 48, p value: 0.176; RMSEA: 0.045; CLI: 0.983; TFI: 0.976, and SRMR: 0.078). Spearman’s correlation coefficients indicated low to moderate convergent validity (ρ: 0.03–0.52) across different subscales of the PHSS and modified-PHSS. Cronbach’s alpha for the PHSS was 0.82 and for the modified-PHSS 0.81. Conclusion We developed the first scales to measure HIV-related stigma among YPLHIV and YPAHIV in India. These concise scales can facilitate measurement of HIV-related stigma more frequently in research studies. We recommend that they be tested in different Indian languages.
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... In consequence, psychological essentialism, the belief that people or groups share a certain immovable essence which lends them shared attributions, has profound psychological and social implications by augmenting social distance to groups who share a "negative essence" and radicalizing "Us vs. Them" differences by unifying all members of these groups into a uniform entity (Leyens et al., 2000). Applied to stigmatization, psychological essentialism transforms a negative quality of one individual or group into its perceived essence (Dijker, 2013;Fernández & Arcia;Grey, 2002, Mason et al., 2009Philips & Gates, 2011;Stark, 1987;Van Dam, 2004) extending these perceived negative qualities to other members of the target group, family or friends (Uhllmann et al., 2012). ...
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... The HIV Adolescents Stigma Scale is a Likert scale instrument, a modified version of the adult stigma scale, validated for teens affected by HIV/AIDS in the United States of America [92]. The previous adult HIV stigma scale had 48 items, while the adapted adolescent scale measures 23 items with good reliability [93]. A modified version of the 23 items has been validated into a seven-item scale to study HIV/AIDS-affected youth in South Africa [92]. ...
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... Too often, however, researchers use convenience sampling methods for cognitive interviewing without attention to the sociodemographic characteristics of the participants [10]. Adolescent participants are often selected from existing health programs [11], schools, or clinics [12,13]. Consequently, researchers identify only those issues identified as problematic for adolescents with exposure to health or school structures. ...
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Background: We aimed to assess the feasibility of using multiple technologies to recruit and conduct cognitive interviews among young people across the United States to test items measuring sexual and reproductive empowerment. We sought to understand whether these methods could achieve a diverse sample of participants. With more researchers turning to approaches that maintain social distancing in the context of COVID-19, it has become more pressing to refine these remote research methods. Methods: We used several online sites to recruit for and conduct cognitive testing of survey items. To recruit potential participants we advertised the study on the free online bulletin board, Craigslist, and the free online social network, Reddit. Interested participants completed an online Qualtrics screening form. To maximize diversity, we purposefully selected individuals to invite for participation. We used the video meeting platform, Zoom, to conduct the cognitive interviews. The interviewer opened a document with the items to be tested, shared the screen with the participant, and gave them control of the mouse and keyboard. After the participant self-administered the survey, the interviewer asked about interpretation and comprehension. After completion of the interviews we sent participants a follow-up survey about their impressions of the research methods and technologies used. We describe the processes, the advantages and disadvantages, and offer recommendations for researchers. Results: We recruited and interviewed 30 young people from a range of regions, gender identities, sexual orientations, ages, education, and experiences with sexual activity. These methods allowed us to recruit a purposefully selected diverse sample in terms of race/ethnicity and region. It also may have offered potential participants a feeling of safety and anonymity leading to greater participation from gay, lesbian, and transgender people who would not have agreed to participate in-person. Conducting the interviews using video chat may also have facilitated the inclusion of individuals who would not volunteer for in-person meetings. Disadvantages of video interviewing included participant challenges to finding a private space for the interview and problems with electronic devices. Conclusions: Online technologies can be used to achieve a diverse sample of research participants, contributing to research findings that better respond to young people's unique identities and situations.
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To explore themes regarding work-related barriers to access to health care, we conducted 32 interviews, 16 with third gender people and 16 with cisgender women, all of whom were all living with HIV in Hyderabad, India. Most respondents were members of Dalit castes and had been living with HIV for several years at the time of the interview. Using thematic content analysis, interviews were coded by two researchers using a social determinants of health conceptual framework. Themes highlighted in this study include the burden of taking time off from work, the loss of pay associated with missing work, and the interruption of gendered care work responsibilities that respondents faced when seeking treatment. Findings from this study support the claim that equitable work policies and practices for marginalized laborers can increase access to medical care for people living with HIV.
Preprint
Full-text available
Background: HIV-related stigma is associated with poor quality of life and poor healthcare-seeking behaviours in Young People Living with HIV (YPLHIV) and Young People Affected by HIV (YPAHIV). India has an estimated 120,000 YPLHIV and 4 million YPAHIV, but efforts to measure HIV-related stigma in them are sparse, impeded by the lack of appropriate measuring instruments. Here, we describe the development of the Pune HIV-Stigma Scale (PHSS) and modified-PHSS to measure HIV-related stigma among YPLHIV and YPAHIV, respectively, in India. Methods: Data from a mental health study for YPLHIV and YPAHIV, conducted at Byramjee Jeejeebhoy Government Medical College & Sassoon General Hospitals, Pune, India, between August 2018 and June 2021 were used. Findings from multiple confirmatory factor analyses (fit to previously published scales) and cognitive interviews were used to develop the 12-item PHSS with four subscales (personalized stigma, disclosure concerns, negative self-image, concern about public attitudes). The modified-PHSS was developed by confirming the structure of the PHSS for YPAHIV. Convergent validity with Center for Epidemiological Studies Depression (CES-D) and UCLA Loneliness scales was assessed using Spearman’s correlation coefficients. Results: Median ages of YPLHIV (n=124) and YPAHIV (n= 93) were 19 years (IQR: 15-25); 52% of YPLHIV and 44% of YPAHIV were male. Model fit indices were good for both PHSS (χ2 =65.0, df =48, p-value: 0.052; root mean square error of approximation (RMSEA): 0.054; comparative fit index (CLI): 0.980; Tucker-Lewis index (TLI): 0.972; and standardized root mean square residual (SRMR): 0.067) and modified-PHSS (χ2 = 56.9, df =48, p-value: 0.176; RMSEA: 0.045; CLI: 0.983; TFI: 0.976, and SRMR:0.078). Spearman’s correlation coefficients indicated low to moderate convergent validity (ρ: 0.03 – 0.52) across different subscales of the PHSS and modified-PHSS. Cronbach’s alpha for the PHSS was 0.82 and for the modified-PHSS 0.81. Conclusion: We developed the first scales to measure HIV-related stigma among YPLHIV and YPAHIV in India. These concise scales can facilitate measurement of HIV-related stigma more frequently in research studies. We recommend that they be tested in different Indian languages.
Article
Stigma around hepatitis C virus (HCV) infection is an important and understudied barrier to HCV treatment and elimination. The determinants of HCV‐related stigma, including the impacts of stage of HCV treatment (i.e., spontaneously‐cleared; diagnosed, untreated; previously treated, not cured; currently being treated; treated, cured) and coinfection with human immunodeficiency virus (HIV), remain unknown. To address these gaps, we conducted a cross‐sectional study among patients with a history of HCV infection (n=270) at outpatient clinics in Philadelphia from July 2018 – May 2019. We evaluated stigma using the validated HCV Stigma Scale, adapted from the Berger HIV Stigma Scale. Associations among HCV‐related stigma and hypothesized demographic, behavioral, and clinical risk factors were evaluated by multivariable linear regression. Most participants (95.5%) experienced HCV‐related stigma. Mean stigma scores did not differ significantly between HCV‐monoinfected and HIV/HCV‐coinfected participants (P=0.574). However, we observed significant interactions between HIV status and multiple determinants; therefore, we stratified analyses by HIV status. Among HIV/HCV‐coinfected participants, previous HCV treatment without cure, female gender, Hispanic/Latino ethnicity, and some college education were significantly associated with higher HCV‐stigma scores. An annual income of 10,000‐40,000 was associated with significantly lower stigma scores. No significant associations were observed among HCV‐monoinfected participants. We found that most participants experienced stigma associated with HCV diagnosis. While stigma scores were similar between HCV‐monoinfected and HIV/HCV‐coinfected participants, the determinants associated with HCV stigma differed by HIV status. Understanding how experiences of stigma differs between HCV‐monoinfected and HIV/HCV‐coinfected patients may aid in the development of targeted interventions to address the HCV epidemic.
Article
Background Youth who have a parent living with HIV represent a population that may experience negative sexual health outcomes particularly if they reside within social and cultural contexts (e.g., families, communities, schools) that contribute community-level risks associated with HIV infection. Objective This study sought to understand how adolescents with HIV-positive mothers engage in parent–child communication about sex and give meaning to their sexual health attitudes, beliefs, and experiences. Methods An interpretative phenomenological analysis (IPA) approach was used to collect focus group and individual interview data from fourteen Black adolescents residing in an urban U.S. city that is characterized to have a generalized HIV epidemic. NVivo supported qualitative data analysis, which was guided by a six-step heuristic framework. Findings Three themes were associated with HIV-affected adolescents' meaning-making around sexual health—Being Ambivalent about Sex, Making Decisions about Sex, and Reflecting on Sexual Health. These themes describe participants' perspectives of informal parent–child communication about sex and offer an interpretation of their sexual health attitudes, beliefs, decision-making, and risk-taking behaviors. Conclusion Despite informally engaging in parent–child communication about sex with their mothers, many participants did not articulate comprehensive sexual health knowledge and furthermore sought opportunities for increased dialogue around decision-making concerning their sexual health.
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Surrogate parenting by grandparents is not a new phenomenon; however, it has emerged as an especially pressing problem in the HIV epidemic. HIV-related stigma contributes to the emotional distress and social isolation of HIV-affected caregiving grandparents. This article highlights the stigma experiences of seven grandmothers in Chicago and Boston who are raising HIV-infected grandchildren. The author builds on the traditional stigma frameworks, the expansion of stigma theory into the HIV field, and recent work on resistance to stigma. The study illuminates how Goffman's concept of stigma management is inadequate in this context. Implications are suggested for social service providers in the mental health, aging, health, and HIV arenas.
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This paper explores the potential for extending the use of a 40-item stigma scale, developed by Berger and colleagues, to older adults with HIV/AIDS. The increase in the numbers of adults living into older age with HIV, along with new infections in those 50+, makes this issue relevant. A sample of 25 older adults completed the stigma scale, and all answered a semi-structured question about how they felt the scale captured their experiences of stigma. The sample ranged in age from 50 to 72 years (M = 56.1 ± 5.75); 38% were female, and 40% were people of color. The stigma scale and its 4 subscales showed excellent internal consistency ranging from a = .92 to .96. The scale was found to have good convergent validity with the CES-D depression scale. Sixty-four percent of the respondents felt the scale did a good job capturing their experiences of stigma as older persons living with HIV/AIDS or offered no suggestions for improvement. The scale was found to be reliable and valid for measuring HIV-stigma in the original study and appears to maintain its integrity in a sample of older HIV-infected adults.
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The design and evaluation of questionnaires—and of other written and oral materials—is a challenging endeavor, fraught with potential pitfalls. Cognitive Interviewing: A Tool for Improving Questionnaire Design describes a means of systematically developing survey questions through investigations that intensively probe the thought processes of individuals who are presented with those inquiries. The work provides general guidance about questionnaire design, development, and pre-testing sequence, with an emphasis on the cognitive interview. In particular, the book gives detailed instructions about the use of verbal probing techniques, and how one can elicit additional information from subjects about their thinking and about the manner in which they react to tested questions. These tools help researchers discover how well their questions are working, where they are failing, and determine what they can do to rectify the wide variety of problems that may surface while working with questionnaires.
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Purpose: HIV disease is one of the most stigmatized illnesses in modern history. People with HIV report stigma as a primary stressor and family members experience courtesy stigma or stigma-by-association. As African-American women account for a growing percentage of people with HIV and as people with HIV are living longer, increasing numbers of African-American youth are affected by their mothers' HIV. These are the same women and children who experience significant health and mental health disparities. Several studies report that HIV-affected adolescents who know their mother's status have higher rates of emotional/thought problems, substance use, and sexual risk, than those who do not know mother's status. Knowledge of mother's status is also a prerequisite for stigma, suggesting a relationship between stigma and risk. Little is known, however, about how HIV-affected teens experience or manage stigma. Methods: As part of a larger study of HIV-affected adolescent risk, 27 non-infected African-American adolescents, living with a HIV-positive mother and knowing her HIV status, responded to four open-ended questions. The teens ranged in age from 13-18 years; 48% were female. Analysis was an inductive and iterative process. Using ATLAS.ti, two researchers independently coded all transcripts and met after each level of analysis to scrutinize and clarify codes or, at higher levels of analysis, coding schemes until a consensus emerged. Coding schemes and processes were also examined and discussed regularly by the full research team --experts on HIV, stigma, adolescents, family systems, and mental health. Results: Broad themes identified were: stigma's impact on relationships, stigma experiences, and stigma management. Teens described relationship changes with extended family members but few changes with friends, as most had not told any friends about mother's HIV. At the same time, shared stigma appeared to bring the mother and child closer together. Teens anticipated a range of reactions if they told a friend, including sadness, fear, understanding, and anger. HIV-affected teens described rare direct experiences of stigma but feared potential stigma and adapted their behavior to avoid stigma. In order to protect themselves and mother from potential stigma, teens were vigilant and silent. The teens described potential or actual reasons for telling others and their decision-making process about whom to trust. Some teens were confident in their ability to tolerate insults and hurt; others appeared caught between protecting mother and needing her support to manage feelings and stigma. Conclusions and Implications: The study was conducted with a small sample of African-American teens willing to talk about this difficult subject so may not be generalizable to all affected teens. However, the findings point to stigma's power to affect adolescents' key relationships and the adaptive behaviors that teens use to manage the burden. Management strategies generally reduced peer interactions and reinforced the mother/teen connection a combination at odds with the peer relationships and independence fundamental to adolescent development. For future research and program development, community-based participatory methods will provide a safe space for at-risk teens to come together, break the silence, and actively participate in knowledge and service development.
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HIV (Human Immunodeficiency Virus) is experienced as a highly stigmatized disease by those with HIV and their families. Moreover, it has been argued that it is the stigmatized nature of HIV that separates it from other chronic illnesses (Bor and Elford, 1998; Geballe and Gruendel, 1995). Drawing from a recently completed qualitative study conducted in Scotland, this article examines the impact of HIV stigma on children and young people with a parent or carer with HIV. The starting point for the research (and for this article) is the perspective of the children and young people themselves. The article gives an account of their understanding of stigma, and explores the different methods that they have adopted to cope with the effects of living with such a stigmatized illness in the family. The article concludes with a discussion of the implications of this study for social work policy and practice with children and young people affected by parental HIV.
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Focus group discussions were conducted with inner-city ethnic minority families with regard to current life concerns, motherchild communication of concerns, and the influence of maternal HIV on both of those issues. Participants included early adolescents who were HIV-negative and their mothers (one-half were HIV-positive and one-half HIV-negative). Early adolescents were most concerned about sexual activity, pregnancy, safety and violence, and drugs. Early adolescents whose mothers were HIV-positive were concerned additionally with their mothers' sickness and death, adult responsibilities, stigma and ostracism, and an even greater uncertainty about their futures. Mothers' concerns for their children included safety and violence, sexual activity, drugs, and parenting. Mothers who were HIV-positive also were concerned about their own HIV-related issues of stigma, disclosure, becoming ill, and children assuming adult roles. Although early adolescents and mothers reported talking to each other about concerns, the quality of those discussions was unclear. Implications for family-based HIV prevention interventions are discussed.
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The stigmatization process might differ as a function of whether "marked" individuals are viewed within a context of other marked individuals or in the context of positively viewed "normals. "Several alternative impression outcomes seem plausible the destigmatization by association of marked individuals, the stigmatization by association of normal individuals, a contrast effect, or no influence of context. Two experiments produced evidence only for stigma-by-association effects-heterosexual male targets were denigrated when viewed with their homosexual friends. Moreover, this effect survived attempts both to make the heterosexual target similar to the subjects and to present him as an individual of high achieved status. More generally, these data highlight the risk of researching social cognitive phenomena within circumscribed social contexts: Crucial naturally occurring processes are too easily overlooked.
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The emotional distress, self-esteem and problem behaviors of adolescent daughters aged 11–18 years (n= 121) and their mothers with HIV were examined and related to reports of parental disclosure of serostatus and adolescents’ perceived bonds with their parents. Most mothers with HIV reported emotional distress in the clinical range (70%). The levels of emotional distress, self-esteem and drug use were significantly correlated between mothers and daughters. Adolescent’s emotional distress was significantly related to maternal disclosure of HIV status. Daughters who perceived their mothers as highly caring also perceived them as low in overprotection. Daughters who perceived their mothers as low in caring were more emotionally distressed and reported more conduct problems and lower self-esteem. Interventions to enhance adjustment of daughters in families coping with HIV must focus on mental health symptoms and mother–daughter bonds.
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Focuses on the stigmatization of HIV and AIDS. It begins with a critical examination of the stigma construct itself. Although it is a widely used construct in the social and behavioral sciences, stigma remains vaguely and poorly conceptualized. After offering a reconceptualization of stigma, the authors examine the bases of the AIDS-related stigma and the factors that intensify and minimize the extent to which particular people with HIV/AIDS are stigmatized. The final section of the chapter deals with the psychological and interpersonal consequences of AIDS-related stigma and with the stigma management strategies of people who have HIV and AIDS. (PsycINFO Database Record (c) 2012 APA, all rights reserved)