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

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.

Full text

http://rsw.sagepub.com
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
http://rsw.sagepub.com/cgi/content/abstract/20/1/65
The online version of this article can be found at:
Published by:
http://www.sagepublications.com
can be found at:Research on Social Work Practice Additional services and information for
http://rsw.sagepub.com/cgi/alerts Email Alerts:
http://rsw.sagepub.com/subscriptions Subscriptions:
http://www.sagepub.com/journalsReprints.navReprints:
http://www.sagepub.com/journalsPermissions.navPermissions:
http://rsw.sagepub.com/cgi/content/refs/20/1/65 Citations
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

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
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

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,
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

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.
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

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
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

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.
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

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.
References
Antle, B. J., Wells, L. M., Goldie, R. S., DeMatteo, D., & King, S. M.
(2001). Challenges of parenting for families living with HIV/
AIDS. Social Work, 46, 159-169.
Austin, J. K., MacLeod, J., Dunn, D. W., Shen, J. & Perkins, S. M.
(2004). Measuring stigma in children with epilepsy and their
parents: Instrument development and testing. Epilepsy & Behavior,
5, 472-482.
Berger, B. E., Ferrans, C. E., Lashley, F. R. (2001). Measuring stigma
in people with HIV: Psychometric assessment of the HIV stigma
scale. Research in Nursing and Health, 24, 518-529.
Birenbaum, A. (1992). Courtesy stigma revisited. Mental Retardation,
30, 265-268.
Brackis-Cott, E., Mellins, C. A., & Block, M. (2003). Current life
concerns of early adolescents and their mothers: Influence of
maternal HIV. Journal of Early Adolescence, 23, 51-77.
Bunn, J. Y., Solomon, S. E., Miller, C. & Forehand, R. (2007).
Measurement of stigma in people with HIV: A re-examination
of the HIV stigma scale. AIDS Education and Prevention, 19,
198-208.
Burton, L. M., Cowgill, B. O., Kennedy, D., Ryan, G., Murphy, D. A.,
Elijah, J., et al. (2008). HIV-related stigma among people with
HIV and their families: A qualitative analysis. AIDS and Behavior,
12, 244-254.
Centers for Disease Control (2003). Characteristics of persons living
with AIDS and HIV, 2001. Surveillance supplemental report.
Retrieved May 20, 2008, from http://www.cdc.gov/hiv/stats/hasr-
suppVol9No2.htm
Clark, H. J., Lindner, G., Armistead, L., & Austin, B.-J. (2003).
Stigma, disclosure, and psychological functioning among HIV-
infected and non-infected African-American women. Women &
Health, 38(4), 57-71.
Corrigan, P. W., Watson, A. C., & Miller, F. E. (2006). Blame, shame,
and contamination: The impact of mental illness and drug depen-
dence stigma on family members. Journal of Family Psychology,
20, 239-246.
Cree, V. E., Kay, H. Tisdall, K., & Wallace, J. (2004). Stigma and
parental HIV. Qualitative Social Work, 3, 7-25.
Emlet, C. (2007). Extending the use of the 40-item HIV-stigma Scale
to older adults: An examination of reliability and validity. Journal
of HIV/AIDS & Social Services, 6(3), 43-54.
Goffman, E. (1963). Stigma: Notes on the management of spoiled
identity. New York: Simon & Schuster.
Green, S. E. (2003). “What do you mean ‘what’s wrong with her’?”:
Stigma and the lives of families of children with disabilities.
Social Science & Medicine, 57, 1361-1374.
Hader, S. L., Smith, D. K., Moore, J. S., & Holmberg, S. D. (2001).
HIV infected women in the United States: Status at the millennium.
Journal of the American Medical Association, 285, 1186-1192.
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, 317-377.
Ingram, D., & Hutchinson, S. A. (1999). HIV-positive mothers and
stigma. Health Care for Women International, 20, 93-103.
Joslin, D. (2000). Emotional well-being among grandparents raising
children affected and orphaned by HIV disease. In B. Hayslip, Jr.
& R. Goldberg-Glen, (Eds.), Grandparent raising grandchildren:
Theoretical, empirical, and clinical perspectives (pp. 87-106).
New York: Springer.
Joslin, D., & Harrison, R. (1998). The “hidden patient”: Older relatives
raising children orphaned by HIV disease. Journal of the American
Medical Women’s Association, 53, 65-71.
Kalichman, S. C. (1998). Social sequelae. In Understanding AIDS:
Advances in research and treatment (2nd ed., pp. 209-232).
Washington DC: American Psychological Association.
Leary, M. R., & Schreindorfer, L. S. (1998). The stigmatization of
HIV and AIDS: Rubbing salt in the wound. In V. J. Derlega &
A. P. Barbee, (Eds.), HIV & Social Interaction (pp. 12-29). Thousand
Oaks, CA: Sage.
Lee, M. B., & Rotheram-Borus, M. J. (2002). Parents’ disclosure of
HIV to their children. AIDS, 16, 2201-2207.
Lee, R. S., Kochman, A., & Sikkema, K. J. (2002). Internalized
stigma among people living with HIV-AIDS. AIDS and Behavior,
6, 309-319.
Lee, M. B., Lester, P., & Rotheram-Borus, M. J. (2002). The relation-
ship between adjustment of mothers with HIV and their adolescent
children. Clinical Child Psychology and Psychiatry, 7, 71-84.
Mason, S., Sultzman, V., Berger, B., & Ferrans, C. (2008, October).
The experience of stigma-by-association among African-American
adolescents whose mothers have HIV. Poster session presented at
the NIMH Annual International Research Conference on the Role
of Families in Preventing and Adapting to HIV/AIDS, Providence,
Rhode Island.
Mellins, C. A., Brackis-Cott, E., Dolezal, C., & Meyer-Bahlburg, H.
F. L. (2005). Behavioral risk in early adolescents with HIV+
mothers. Journal of Adolescent Health, 36, 342-351.
Murphy, D. A., Austin, E. L., & Greenwell, L. (2006). Correlates of
HIV-related stigma among HIV-positive mothers and their unin-
fected adolescent children. Women & Health, 44(3), 19-42.
Murphy, D. A., Roberts, K. J., & Hoffman, D. (2002). Stigma and
ostracism associated with HIV/AIDS: Children carrying the secret
of their mothers’ HIV+ serostatus. Journal of Child and Family
Studies, 11, 191-202.
Neuberg, S. L., Smith, D. M., Hoffman, J. C., & Russell, F. J. (1994).
When we observe stigmatized and “normal” individuals interact-
ing: Stigma by association. Personality and Social Psychology
Bulletin, 20, 196-209.
Norvilitis, J. M., Scime, M., & Lee, J. S. (2002). Courtesy stigma in
mothers of children with attention deficit/hyperactivity disorder: A
preliminary investigation. Journal of Attention Disorders, 6, 61-68.
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.
Poindexter, C. C. (2002). “It don’t matter what people say as long
as I love you”: Experiencing stigma when raising an HIV-
infected grandchild”. Journal of Mental Health and Aging, 8,
331-347.
Prachakul, W., Grant, J. S., & Keltner, N. L. (2007). Relationships
among functional social support, HIV-related stigma, social
problem solving, and depressive symptoms in people living with
HIV: A pilot study. Journal of the Association of Nurses in AIDS
Care, 18(6), 67-76.
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from

Mason et al. / African American Adolescents Whose Mothers Have HIV 73
Sandelowski, M., Lambe, C., & Barroso, J. (2004). Stigma in HIV-
positive women. Journal of Nursing Scholarship, 36, 122-128.
Warnecke, R. B., Ferrans, C. E., Johnson, T. P., Chapa-Resendex, G.,
O’Rourke, D. P., Chavez, N., et al. (1996). Measuring quality of
life in culturally diverse populations. Journal of the National
Cancer Institute, 20, 29-38.
Willis, G. B. (2004). Cognitive interviewing: A tool for improving
questionnaire design. Thousand Oaks, CA: Sage.
Wright, K., Naar-King, S., Lam, P., Templin, T., & Frey, M. (2007).
Stigma scale revised: Reliability and validity of brief measure of
stigma for HIV+ youth. Journal of Adolescent Health, 40,
96-98.
For reprints and permissions queries, please visit SAGE’s Web site at http://www.sagepub.com/journalsPermissions.nav
at Univ of Illinois at Chicago Library on December 18, 2009 http://rsw.sagepub.comDownloaded from