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Adaptation of the HIV Stigma Scale in Spaniards with HIV
Maria José Fuster-RuizdeApodaca
1
, Fernando Molero
1
, Francisco Pablo Holgado
1
and
Silvia Ubillos
2
1
Universidad Nacional de Educación a Distancia, UNED, Spain,
2
Universidad de Burgos, Spain.
This study was supported by the Fundación para la Investigación y Prevención
del Sida en España (FIPSE). Research Grant: 24637/07.
Correspondence concerning this article should be addressed to Maria J. Fuster-
RuizdeApodaca. Universidad Nacional de Educación a Distancia (UNED). Calle Juan
del Rosal 10, E-28040 Madrid (Spain) E-mail: mjfuster@psi.uned.es
Spanish adaptation of the HIV Stigma Scale 2
Abstract
The primary goal of this study was to adapt Berger et al.’s (2001) HIV Stigma Scale in
Spain, using Bunn et al.’s (2007) version. A second goal assessed whether the four-
factor structure of the adapted scale could be explained by two higher-order dimensions,
perceived external stigma and internalized stigma. A first qualitative study (N=40
people with HIV, aged 28-59) was used to adapt the items and test content validity. A
second quantitative study analyzed construct and criterion validity. In this study
participants were 557 people with HIV, aged 18-76.The adapted HIV Stigma Scale for
use in Spain (HSSS) showed a good internal consistency and good construct validity.
Confirmatory Factor Analyses yielded a first-order, four-factor structure and a higher-
order, bidimensional structure with the two expected factors. Negative relations were
found between stigma and quality of life, self-efficacy to cope with stigma, degree of
HIV status disclosure, and health status.
Keywords: HIV, Stigma Scale, adaptation, validity, second-order dimensions, Spain
Spanish adaptation of the HIV Stigma Scale 3
Numerous investigations show that stigma associated with HIV has a negative impact
on diverse variables related to quality of life and psychological well-being (Franke et
al., 2010; Logie & Gadalla, 2009; Steward et al., 2011). The perception of stigma can
also have negative implications for physical health (Obermeyer & Osborn, 2007; Rao,
Kekwaletswe, Hosek, Martínez, & Rodriguez, 2007; Stratchan, Murray, Russo, & Roy-
Byrne, 2007). Stigma and discrimination also influence public health negatively
because they discourage people from being tested voluntarily for HIV and they deter
people with HIV from disclosing their status or even from following a treatment for
their infection (Clum, Chung, & Ellen, 2009; King et al., 2008; UNAIDS, 2002).
The stigma associated with HIV is a complex construct that includes diverse
categories and dimensions. One traditional classification divides it into two categories,
enacted and internalized stigma (Parker & Aggleton, 2003; Tsutsumi & Izutsu, 2010;
UNAIDS, 2002). In the former, the source of stigma is external (Enacted stigma), and
in the latter, it is internal (Internalized stigma). More recently, Bos, Pryor, Reeder, and
Stutterheim (2013) pointed out that public stigma (common knowledge that a certain
social attribute is devaluated) affects the self in three ways: (a) through enacted stigma
(perceived negative treatment of the stigmatized people), (b) through felt stigma
(experience or anticipation of the stigmatization), and (c) through internalized stigma
(reduction of self-worth of the stigmatized people). This differentiation is important
because different types of stigma as such constitute sources of stigma that can
differentially affect the stigmatized people.
Stigma and discrimination towards people with HIV are a reality that has been
documented in diverse countries (FIPSE, 2005; Fuster, Molero, Gil de Montes, Vitoria,
& Agirrezabal, 2013; Fuster-RuizdeApodaca et al., 2014; Li et al., 2009; Mahajan et al.,
2008). A recent study of a representative sample of Spanish population showed that an
Spanish adaptation of the HIV Stigma Scale 4
important percentage of them still felt discomfort in the presence of people with HIV
(from 25.8 to 49.8%, depending to the daily life scenario). Moreover, 29% of the
population would avoid the contact with them. Furthermore, around 13% of the
population advocate discriminatory policies, and about 15% blame people with HIV for
having the disease (Fuster-RuizdeApodaca et al., 2014). Concerning internalized
stigma, in recent years, research has revealed its magnitude and relevance in people
with HIV and its important consequences for their psychological well-being and quality
of life (Berger, Ferrans, & Lashley, 2001; Kalichman et al., 2009; Visser, Kershaw,
Makin, & Forsyth, 2008). In a study conducted in Spain in which 221 people with HIV
participated, it was found that the levels of enacted and internalized stigma were a little
higher than the theoretical mean of the scale (Fuster-RuizdeApodaca, Molero, &
Ubillos, in press).
Various instruments have recently been designed to measure HIV-related
stigma. One of the most frequently used and referenced is the Stigma Scale of Berger et
al. (2001). This scale has a reported four-factor structure (Personalized Stigma,
Disclosure Concerns, Negative Self-Image, and Concern with Public Attitudes about
People with HIV). Berger et al.’s Stigma Scale has the advantage of being well-
validated in several settings and used fairly extensively in many studies and countries.
(In the table presented as Annex 1, the studies that validated this scale can be consulted
along with the main psychometric properties and validation data of these studies).
Of the four factors of Berger et al’s. (2001) scale, two of them (Personalized
Stigma and Concern with Public Attitudes) measure perceived stigma expressed by
others (experiences with enacted stigma and felt stigma). For the other two factors
(Disclosure Concerns and Negative Self-Image), the source of the stigma is the person
with HIV, in other words, external and internal source, respectively. Thus, according to
Spanish adaptation of the HIV Stigma Scale 5
the distinction proposed in the literature, these four factors could be included within two
more general dimensions, perceived external stigma (enacted and felt stigma), and
internalized stigma. However, some authors (Kalichman et al., 2009) noted that Berger
et al.’s scale does not include items that are sufficiently representative of stigma
internalization, and, therefore, they developed a specific measure of internalized stigma.
To our knowledge, no studies have been conducted to analyze a possible second-order
bidimensional structure accounting for the two general sources of the perception of
stigma (external and internal) by people with HIV. We hypothesize that this second-
order structure could be achieved by adapting items from an internal source to
adequately measure internalized stigma. This proposal could be useful to measure both
sources of stigma with the same scale and to analyze their effects on people with HIV.
This analysis could contribute to designing interventions to reduce the problem of
public stigma and to enable people with HIV to better cope with the problem.
This investigation had two goals: The primary goal was to adapt the Stigma
Scale (Berger et al., 2001) with two aims: to be able to adequately measure internalized
stigma, and for its use in Spain. The second goal was to analyze whether the factor
structure of the adapted scale could be explained by two new higher order dimensions
related to perceived external (enacted and felt stigma) and internalized stigma.
Method
This research was conducted during a two-year interval (2008 and 2009) and it is part of
a more extensive investigation (Fuster, 2011), consisting of three studies involving a
total sample of 687 people with HIV. The research described here involved the first two
studies of the investigation (Fuster, 2011). The first study, a qualitative one, was used to
adapt the items of the Stigma Scale reduced and refined by Bunn et al. (2007), in order
to obtain evidence of content validity. The second study, quantitative and cross-
Spanish adaptation of the HIV Stigma Scale 6
sectional, was conducted to obtain evidence of construct and criterion validity of the
adapted scale.
Participants
A total sample of 597 people participated in the investigation. The inclusion criteria
were: positive HIV diagnosis, being over 18 years of age, and not having any severe
psychiatric or cognitive disorder.
In the first study, 40 people with HIV were interviewed. One half of them were
men and one half were women. Their ages ranged from 28 to 59 years (M = 42.98, SD =
5.95). Most of them (57.5%) were working, 40% had finished high school, and 30% had
attended elementary school. Regarding health characteristics, 60% of the interviewees
had acquired the infection through unprotected sexual relations, 92.5% were undergoing
antiretroviral treatment, and 82.5% had satisfactory immunological and virological
status.
In the second study, there were 557 participants with HIV, aged 18-76. Most of
them were men and more than half of them were heterosexual, single, and unemployed.
On average, the participants had been infected by HIV for more than ten years, and
more than half of them had acquired the infection through sexual contact. Medically,
they were currently taking antiretroviral therapy and had a good immunological and
virological status (Table 1).
Insert Table 1 about here.
Instruments
The instrument employed in the qualitative study was a semistructured interview with
open questions. The interview was comprised of six blocks of questions. For the
purpose of this investigation—the adaptation of the Stigma Scale (Bunn et al., 2007)
items—we used the discourse categories corresponding to the following questions: (a)
Spanish adaptation of the HIV Stigma Scale 7
main problems perceived of the collective of people with HIV (Can you tell me what
you think are the main problems or difficulties faced by people with HIV in our
society?), main perceived personal problems and concerns (What are the main problems
or difficulties that you must face in your daily life because of your condition of being a
person with HIV?), thoughts, and feelings related to their HIV status (What thoughts
and feelings does a person with HIV provoke in you?); (b) perception of stigma and
discrimination (To what extent do you think that stigma and discrimination towards
people with HIV are currently a problem?, Have you ever suffered some kind of
rejection?, Can you tell me what happened?), justification of discrimination (What do
you think are the reasons for stigma?), personal responses to perceived stigma and to
personally experienced stigma (Could you tell me about your feelings, thoughts, and
actions when you suffered rejection?); (c) level of disclosure of serologic status: reasons
and drawbacks (To what extent do you usually disclose to others that you have HIV?,
What are your reasons for disclosing it?, And for concealing it?).
To measure stigma and the variables used to assess the criterion validity in the
quantitative study, the following instruments were used:
Stigma Scale. We used the revised and refined adapted version of Bunn et al.
(2007). These authors re-analyzed the psychometric properties of Berger et al.’s (2001)
scale. The scale is rated on a 4-point Likert-type response format (1 = strongly
disagree, 4 = strongly agree). This scale showed a good internal consistency and
evidences of construct and criterion validity (Appendix 1).
The scale was translated following the International Test Commission (2006)
guidelines for the translation and adaptation of questionnaires. For this purpose,
backward translation was performed: The scale was translated independently from
English to Spanish by two expert translators, who were familiar with the basic
Spanish adaptation of the HIV Stigma Scale 8
psychometric aspects of item construction. The research team assessed the translations,
reaching a consensus on the final items. After translation, the scale was adapted to the
reality of people with HIV in Spain. For this purpose, a team of seven experts reviewed
it to verify that the items coincided with the discourse categories found in the qualitative
study. As a result of this analysis, some new items were included and others were
eliminated or their wording was changed. The final, 30-item translated version was
reviewed individually by 15 people with HIV in order to guarantee apparent validity.
Then, all the items were re-translated into English by a bilingual person who was blind
to the prior translation process. The items of this translation were compared with the
original items to verify that there were no important differences.
Quality of Life Questionnaire (Ruiz and Baca, 1993). The scale has a 5-point
self-report response format, with higher scores indicating better health status (1 = Not at
all, 5 = Very much). This instrument has shown evidences of good internal consistency,
temporal stability, sensitivity to significant clinical changes, and content and construct
validity (internal structure, concurrent and discriminant validity) in Spanish adult
population. Thus, the Cronbach alpha coefficient across studies ranged from α = .82 to α
= .94. The questionnaire also showed test-retest reliability, with levels of stability
ranging from r = .77 to r =.97. The correlations among quality of life and the criterion
variables ranged from r = -.33 and r = -.73. Three of the four factors of this
questionnaire were used for this investigation: Social Support, General Satisfaction, and
Physical and Psychological Well-being. The Cronbach alpha coefficients for these
factors in this study were α = 85, α = .86, and α = .82, respectively.
Perceived Self-Efficacy to Cope with Stigma Scale (Fuster, 2011). Based on the self-
efficacy literature, we used four items that are rated on a 4-point Likert-type response
format, with higher scores indicating a higher perceived self-efficacy. The construct of
Spanish adaptation of the HIV Stigma Scale 9
this scale was also validated by means of confirmatory factor analysis, and the results
showed a first-order one-dimensional structure (Fuster, 2011). The internal consistency
of the scale was satisfactory (α = .78).
Degree of HIV status disclosure. Based on the research of Stratchan et al. (2007), we
used one item rated on a 5-point Likert-type response format with higher scores
indicating more HIV status disclosure (1 = Never disclose, 5 = Always disclose).
Health status. We included questions related to years living with HIV, lymphocyte CD4
count, viral load copies, and suffering from AIDS-related opportunistic infection.
Procedure
During their consultations or when attending to diverse services, professionals from
health centers explained the goals of the study to the participants, requesting their
participation and obtaining their informed consent. In the case of the qualitative study,
participants were requested to take part in an in-depth interview, and, if they agreed, the
researcher-interviewer contacted them to schedule a meeting. At the beginning of the
interview, permission was requested to audio-tape the interview, informing the
participants of its subsequent transcription and of the confidentiality of the data. In the
case of the quantitative study, the professionals handed out the anonymous and self-
administered questionnaire to the participants to complete while in the waiting-rooms of
the centers and subsequently return to the professionals.
Ethical approval and permission to conduct the research was granted by the non-
governmental organizations and hospitals involved in the study. All the procedures of
this study followed the 1964 Helsinki declaration (revised in 1996), as well as the
guidelines for good clinical practice.
Data Analysis
Content Validity
Spanish adaptation of the HIV Stigma Scale 10
To analyze the qualitative data, content analysis of the interviews was conducted by a
team of seven experienced investigators. The narrations of the interviews were
categorized, mainly inductively and according to the topic and the conceptual areas
provided by the interview as a whole. Next, the data were coded by counting the
frequencies of the references in each category of the narration. Each section of the
interview was categorized and coded by two of the seven researchers of the study. Inter-
rater agreement of the coding of each pair of researchers was applied to study the
reliability of the codifications. Inconsistencies were resolved by consensus. The analysis
yielded substantial reliability (Cohen’s κ = .77, SD = .10, statistic value range from .62
to 1).
Validation of the internal structure of the adaptation of HIV Stigma Scale for use with
Spaniards (HSSS)
First, we conducted first-order confirmatory factor analysis (CFA) to assess the fit of
the adapted questionnaire to the factor structure proposed by the authors of the original
scale (model 2) (Berger et al., 2001; Bunn et al., 2007). Next, to address the second goal
of this investigation, second-order CFA was performed to determine whether the four
first-order factors could be explained by means of two new dimensions or latent factors
(model 1). The new proposed dimensions were Perceived External Stigma, which would
include Personalized Stigma and Concern with Public Attitudes, and Internalized
Stigma, which would include Disclosure Concerns and Negative Self-image. Finally, in
order to compare the model fit to the proposed structure (four first-order factors and two
second-order factors), we tested two alternative models. The first one assessed the fit of
the adapted questionnaire to two first-order factors (Perceived External Stigma and
Internalized Stigma) (model 3). The second one assessed its fit to four first-order factors
and one second-order factor (model 4). We compared the change of the fit between
Spanish adaptation of the HIV Stigma Scale 11
these models and our proposed model (four first-order factors and two second-order
factors).
The robust unweighted least square method was used, as the factors of the scale did not
meet the assumption of normality. To determine goodness of fit, the following indexes
were employed: the Satorra-Bentler chi square, the chi-square-df ratio, the goodness of
fit index (GFI), the adjusted goodness of fit index (AGFI), the root mean square residual
(RMR), the standardized root mean square residual (RMSEA), the comparative fit index
(CFI), the normed fit index (NFI), the nonnormed fit index (NNFI), the incremental fit
index (IFI), and the consistent Akaike information criterion (CAIC).
Criterion validity
Next, we analyzed the criterion validity of the adapted version of the Stigma Scale. For
this purpose, we analyzed, using Pearson`s correlation, the relation between the stigma
dimensions and the following variables related to well-being: (a) the total score of
participants’ quality of life and each one of its dimensions (Social Support, Life
Satisfaction, and Physical and Psychological Well-being), (b) their perceived self-
efficacy to cope with stigma, and (c) the degree of HIV status disclosure. In accordance
with the literature (Greeff et al., 2010; Holzemer et al., 2007; Fuster-RuizdeApodaca et
al., in press; Logie &Gadalla, 2009), we expect a negative relation between stigma
dimensions and these variables. Finally, we analyzed whether there were differences in
health-related variables as a function of participant’s perceived external and internalized
stigma. We expected poorer physical health in individuals with higher levels of stigma
perception (Logie & Gadalla, 2009).
The PRELIS and LISREL 8.7 programs were used for the CFAs, and, for the
remaining analyses, SPSS 15.
Results
Spanish adaptation of the HIV Stigma Scale 12
Review and Adaptation of the Stigma Scale Items
First, we compared the translation of the scale items with the analyzed discourses of the
people with HIV in those sections of the interview from the qualitative study
corresponding to the topic of this study. A summary of the main categories and their
frequencies can be seen in Table 2. Next, the following modifications were carried out
on Bunn et al.’s (2007) revised and reduced version of the HIV Stigma Scale. Items 28,
38, and 39, all belonging to the factor Personalized Stigma, were eliminated. There were
two reasons for these eliminations. The first was to reduce the scale, because this factor
contained the most items, and the items that were eliminated loaded on three factors of
Berger et al.’s (2001) original scale. The second reason was that, after translation, the
content of the items was less representative of the reactions of the Spanish population
towards people with HIV than the rest of the items of this factor. Additionally, item 14
was also eliminated, and items 8, 10, and 12 were reworded because their original
wording contained statements and terms that generated rejection or distress or did not
coincide with Spanish reality. Finally, items 15 and 23 were eliminated from the factor
Negative Self-image, and four new items were added to this factor (items 11, 13, 14,
and 18). These new items contained potential attitudes or emotions derived from stigma
internalization that were more representative of the reality of people with HIV in Spain
because they had appeared in the participants’ discourse in the qualitative study, and
they were not included in the items of the original scale. These items referred to the
justification of stigma, the fear of infecting other people, self-exclusion from affective-
sexual life for fear of transmitting HIV, and the feeling of deserving punishment for
having the infection (see Table 2). The final scale comprised 30 items, and this was
administered to the 557 participants in the second study. The items that comprised the
questionnaire are shown in the Appendix 2.
Spanish adaptation of the HIV Stigma Scale 13
Insert Table 2 about here.
Construct validity
The results of the first-order CFA confirmed the model proposed by the authors (model
2) (Berger et al., 2001). The results showed an acceptable fit of the model to the data
(table 3). As shown in Figure 1, most of the standardized loadings were near or higher
than 0.5, the level considered adequate (Green, 1978). The results of the covariances
among the factors are presented in Table 4.
Insert Figure 1 about here.
Next, second-order CFA was performed. The model confirmed the four first-
order factors found and two second-order factors (model 1). These were Perceived
External Stigma (on which loaded Personalized Stigma and Concern with Public
Attitudes) and Internalized Stigma (which grouped Disclosure Concerns and Negative
Self-image). The model presented an acceptable fit to the data (table 3). Figure 2 shows
the model with the standardized parameters. All the parameters of the model were
statistically significant (p < .05) and the standardized coefficients generally presented
high values although they were moderate in some cases. Likewise, a high correlation
was observed between the second-order dimensions (ϕ = .83).
Insert Figure 2 about here.
Finally, we compare the fit of the different proposed alternative models. As
shown in Table 3, the proposed second-order model (model 1) showed a better RMSEA
value than the model with four first-order factors (model 2). In addition, the change in
chi-square was significant and the fit was the most parsimonious. Also, this proposed
second-order model presented a better fit than the alternative model that confirmed that
the two proposed dimensions of stigma - Perceived External Stigma and Internalized
Stigma -could be explained by two first-order factors (model 3). Finally, we found no
Spanish adaptation of the HIV Stigma Scale 14
differences in chi-square compared with the alternative model with a single second-
order factor (model 4). However, some fit indices were somewhat better (RMR, AGFI,
and CFI) in the model with two second-order factors.
Insert Table 3 about here
Internal consistency
Table 4 shows that the dimensions with the highest internal consistency were
Personalized Stigma and Disclosure Concerns, whereas Negative Self-image and
Concern with Public Attitudes had somewhat lower, albeit good, internal consistency.
The internal consistency of the two second-order dimensions, was also high.
Criterion validity
As can be seen in Table 4, we found negative correlations between the dimensions of
stigma and the target variables related to well-being. Firstly, both the total score on
Quality of Life and on each one of its dimensions—Social Support, Life Satisfaction,
and Physical and Psychological Well-being—had negative relationships with the
diverse factors of the Stigma Scale. The highest negative relationship was with the
second-order dimension, Perceived External Stigma. Regarding the first-order factors,
Personalized Stigma and Negative Self-image had higher negative relations with total
Quality of Life and its dimensions than the other two factors (Disclosure Concerns and
Concern with Public Attitudes of Rejection). Furthermore, we found negative
correlations between all the stigma dimensions and perceived self-efficacy to cope with
stigma. In this case, the highest correlation was found between self-efficacy and
internalized stigma. Moreover, the same patterns of correlations were found between
stigma dimensions and the degree of disclosure of HIV-positive status. However, in this
case, the correlation between disclosure and the first-order factor Personalized Stigma
was nonsignificant.
Spanish adaptation of the HIV Stigma Scale 15
Finally, some differences as a function of the participant’s physical health were
found. Those who had suffered AIDS-related opportunistic infections had a higher score
in the Perceived External Stigma dimension (M = 2.66, SD = .68) than those who had
not suffered them (M = 2.48, SD = .65), t (493) = 3.02, p = .003, d = 0.26. We found no
significant differences in the scores of the Internalized Stigma dimension.
Stigma Scale Scores
The scores of the total Stigma Scale and its factors were calculated according to the
method described by Berger et al. (2001), adding the values corresponding to each
response, such that higher scores are related to higher perceived stigma in its diverse
dimensions. The scores of factors Personalized Stigma and Negative Self-image were
slightly below the theoretical mean of the possible score for these factors. The mean
scores of the factors of Concern with Public Attitudes of Rejection and Disclosure
Concerns were high, exceeding the theoretical mean. With regard to the second-order
dimensions, we observed that the Internalized Stigma score was slightly higher than the
theoretical mean of the scale, whereas the Perceived External Stigma score was lower
than that mean (see Table 4).
Insert Table 4 about here.
Discussion
As a result of this investigation, we have a version of the Stigma Scale (Berger et al.,
2001; Bunn et al., 2007) adapted to a large sample of people with HIV in Spain. Thus,
an outcome of this adaptation study, a questionnaire that measures two important
dimensions of stigma (perceived external and internalized stigma) suffered by people
with HIV is available. These results indicate that the 30-item version proposed shows
diverse evidence of validity –content, apparent, construct, criterion validity– and
therefore has good psychometric properties for use with Spaniards.
Spanish adaptation of the HIV Stigma Scale 16
Regarding validity, the adaptation was performed on the basis of the results of a
broad qualitative study, which allowed us to know at first hand the relevant issues about
the perception of stigma and discrimination by Spaniards with HIV. Thus, both the
original items retained and those included or modified are representative of Spaniards’
experience of stigma (both perceived external stigma and internalized stigma).
Therefore, these items provide evidence of content validity and allow the measurement
of both sources of stigma with the same instrument. Moreover, a small study of
comprehension and appraisal by people with HIV was conducted, which allowed us to
adjust the drafting and translation of the items to the reality of their situation and to the
idiomatic language used in Spain. This provides evidence of apparent validity.
Second, evidence of construct validity was provided, both for internal (internal
structure) and external aspects (criterion validity). Concerning the internal structure of
the scale, this study has confirmed the four-factor structure proposed by its original
authors (Berger et al., 2001). From the results, we conclude that the stigma perceived by
people with HIV corresponds to a multidimensional model of four first-order factors
that are related to each other, although with different contents.
However, this study has also gone one step further, showing that these four
factors can be grouped into and summarized as two latent second-order dimensions,
perceived external and internalized stigma. This factorial structure had the best and
more parsimonious fit. Furthermore, this structure responds to the division identified in
the literature and by international organizations about the types of stigma perceived by
people with HIV (Bos et al., 2013; Herek et al., 2013; Parker & Aggleton, 2003;
Tsutusmi & Izutsu, 2010; UNAIDS, 2002). Thus, a second-order dimension related to
diverse situations of rejection that people with HIV perceive from an external source,
the majority group, was found. This dimension, perceived external stigma, includes
Spanish adaptation of the HIV Stigma Scale 17
personally experienced situations of rejection or discrimination, and also the rejection
that people with HIV perceive directed towards the HIV community in general.
Therefore, this dimension includes the concepts of enacted and felt stigma, as used by
Herek et al. (2013). The second dimension, internalized stigma, includes feelings and
concerns derived from the internalization of the negative attitudes of society and
expressed in this scale through negative self-image and concerns about serostatus
disclosure. Thus, this dimension is similar to the concept of self-stigma used both by
Boss et al. (2013) and by Herek et al. (2013).
Regarding this second-order factorial structure, it is important to note that the
relation found between the two second-order dimensions is high, and no significant
differences were found with respect to a single second-order factor. However, this could
be because both are dimensions of the same social problem, the stigma suffered by
people with HIV. In our opinion, the evidence of the content validity (based on of the
theory of stigma and a qualitative study) and the differences in the size of the
correlations of the two second-order dimensions of stigma with the criterion variables
indicate that they are two different dimensions. The differentiation and study of these
two sources of stigma is important because they allow us to better understand their
implications in people with HIV.
Evidence of criterion validity was also provided. Firstly, we found a negative
relation of all the dimensions of stigma with the dimensions of quality of life and self-
efficacy to cope with stigma and the degree of disclosure of HIV-positive status.
With regard to the relations of the first-order factors with quality of life, the
lowest correlations were found in the factors Disclosure Concerns and Concern with
Public Attitudes. With regard to the second-order dimensions, Perceived External
Stigma was the dimension with the strongest association. These findings are consistent
Spanish adaptation of the HIV Stigma Scale 18
with other investigations (Holzemer et al., 2007). Thus, Franke et al. (2010) found that
the perception of stigma is negatively related to quality of life. Although these authors
used a different measure of quality of life, they also found that the factors with the
lowest correlations were Disclosure Concerns and Concern with Public Attitudes.
Previously, both Berger et al. (2001) and Bunn et al. (2007) had reported that high
scores on the Stigma Scale correlated negatively with an important component of
psychological well-being (self-esteem). In the study of Bunn et al., the lowest relation
was also found with the factor Disclosure Concerns. There are several possible
explanations for these findings. Regarding the factor Concern with Public Attitudes,
perceiving stigma and discrimination towards people with HIV does not necessarily
imply that the person has suffered it in the personal sphere. This would have a more
negative impact on quality of life. In fact, research of discrimination in diverse socially
disadvantaged groups concludes that there is a discrepancy between personal and group
discrimination. This discrepancy may be due to the benefits for well-being of denying
personal discrimination (Taylor, Wright, & Porter, 1994). With regard to the factor
Disclosure Concerns, other studies have shown that its impact on quality of life could
derive through the mediation of other variables, such as self-efficacy or coping
strategies (Fuster, 2011).
Regarding the negative correlations of the dimensions of stigma with perceived
self-efficacy to cope with stigma, we found that the strongest correlation was with
internalized stigma. This result is consistent with research showing the negative effects
of internalized stigma not only on the well-being of people with HIV but also on their
capacity to seek social support or to cope with stigma (Fuster-RuizdeApodaca et al., in
press; Herek, Saha, & Burack, 2013; Stutterheim et al., 2011; Visser et al., 2008).
Furthermore, some authors have indicated that, as internalized stigma is a negative
Spanish adaptation of the HIV Stigma Scale 19
attitude towards an aspect of oneself, this constitutes some sort of specific domain of
low self-esteem (Herek et al., 2013).
The negative correlations found between the dimensions of stigma and the
degree of disclosure of HIV-positive status are also consistent with the literature (Logie
& Gadalla, 2009). In this case, internalized stigma had also the strongest negative
correlation. In fact, disclosure concerns are a relevant dimension of internalized stigma.
Finally, we found some relation between stigma dimensions and the participants’
psychical health. Those who had suffered opportunistic infections related to AIDS had a
higher punctuation in the Perceived External Stigma dimension. This result is also
consistent with the literature showing the negative effects of stigma on physical health
(Logie & Gadalla, 2009; Stratchan et al., 2007).
The internal consistency found for the total scale and for the factors is good. The
coefficients are lower than those of the original scale (Berger et al. 2001), which may be
related to the lower number of items in this adapted version. However, compared to the
reduced version of Franke et al. (2010), similar and even higher coefficients were found
in some factors, such as Disclosure Concerns.
Finally, the results of the scale scores show that the most relevant concerns are
related to public attitudes about people with HIV and to disclosure. This same result
was found by Franke et al. (2010) in the version of the scale validated for Peruvians. In
other studies with the scale, personalized stigma appeared as one of the most relevant
sources of stigma for the interviewees (Bunn et al., 2007). The coincidence of the
results found with the scale of Franke et al. (2010) and the differences with the other
studies carried out in an American population indicate that the realities experienced by
people with HIV in varied cultural settings may be very different. In Spain,
approximately 80% of the people with HIV conceal their condition to some extent
Spanish adaptation of the HIV Stigma Scale 20
(Agirrezabal, Fuster & Valencia, 2009; Fuster, 2011). This high rate of concealment
could imply, on the one hand, less personal exposure to stigma and discrimination or, on
the other hand, cognitive overload related to the constant concern about secret thoughts
(Quinn, 2006). In fact, in this study, the stigma dimension with the highest score in our
participants was that of Internalized Stigma. It does not, therefore, seem that the
problem of stigma in Spain derives from third persons but instead that the main source
of stigma is internal; that is, the people with HIV. This result had been found in other
studies (Visser et al., 2008).
The results of this study have important implications, as they clear the way to the
possibility of performing two strategies for the assessment of stigma perceived by
people with HIV. The use of first- or second-order scores will depend on the
researchers’ interests and the purpose of the measure. Assessment through the second-
order dimensions could provide a continued appraisal of the sources of stigma in our
society, clarifying the intensity and the direction and dimension of the response. In this
sense, for example, through the second-order dimensions, those in charge of designing
policies and allocating resources to address the topic of this study could determine the
kind of interventions that are needed. On the other hand, four-dimensional assessment,
by explaining more response variability and, as a result, gaining discriminative capacity,
might detect more particular problems with stigma and, thereby, contribute to designing
more specific interventions as a function of the people involved.
Limitations and proposals for improvement
Despite the fact that a strong point of this study was the large sample size, it has some
limitations. One of them is that the HIV community is heterogeneous, so future studies
are needed to analyze scale invariance across sexes and as a function of other
sociodemographic or relevant health characteristics. This is a central issue in the field of
Spanish adaptation of the HIV Stigma Scale 21
measurement and one that would allow generalization of the model (Vandenberg &
Lance, 2000). Furthermore, it would be necessary to conduct crossed validation of the
results in future studies.
Finally, it is important to underline that in this research, we adapted the Stigma
Scale (Berger et al., 2001). This adaptation has allowed us to measure two major
sources of stigma with the same scale. However, given that changes have been made in
some items, this will affect cross-cultural comparisons.
Spanish adaptation of the HIV Stigma Scale 22
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Spanish adaptation of the HIV Stigma Scale 29
Table 1. Sociodemographic and clinical characteristics of the 557 participants of the
quantitative study
Sociodemographic and clinical variables
%
Gender
Males
70.8
Females
28
Transsexual
1.3
Age, years, mean (± SD)
43.43 ± 8.09
Education level
No studies
7.1
Elementary School
34.6
High School
41.1
University degree
15.1
Other
2
Marital status
Married/living with a partner
31.4
Divorced/separated
16.1
Single
45.4
Widowed
7.1
Work situation
Working legally (with a legal contract)
31.7
Working illegally (without any contract)
9.4
Unemployed
58.9
Sexual behavior
Heterosexual
56.4
Homosexual
33.1
Bisexual
6.1
No answer
4.4
Transmission route
Unprotected sexual relation
57.7
Sharing injection materials
21.3
Transfusion
0.4
Unknown (various concomitant practices)
20
Other
0.5
Duration of infection, years, mean (± SD)
13.5 ± 7.6
Taking antiretroviral therapy
88.2
CD4 cell count, cells/mm
3
, mean (± SD)
557.8 ± 288.7
Undetectable plasma viral load
62.7
Note: Data in percentages unless otherwise stated.
Spanish adaptation of the HIV Stigma Scale 30
Table 2. Categories of the content analysis of the qualitative study and percentages of
people who mention each one (n = 40)
Categories
%
Main problems perceived by the group of people with HIV
Stigma and discrimination
82.5
Concerns related to concealing serology and self-stigmatization
22.5
Main perceived personal concerns and problems
Emotional and cognitive burden derived from concealing HIV
32.5
Concern about disclosing serology to partner
20
Stigma compelled by family and friends
7.5
Limitations of rights and opportunities derived from the stigma
15
Personal experience of stigma
80
Expressions and forms of stigma experienced
Health sphere
42.5
Work setting
12.5
Affective and sexual life
17.5
Physical isolation
12.5
Social isolation
7.5
Derogatory verbal expressions
27.5
Feelings related to internalization of stigma
Feelings of guilt for having HIV
42.5
Feelings of shame for having HIV
40
Feelings of being punished for having HIV
37.5
Fear of transmitting the infection
30
Justification of stigma and discrimination
42.5
Behaviors of self-exclusion derived from the stigma
Avoidance of affective and sexual relations
25
Avoidance of seeking job opportunities
20
Avoidance of physical contact
12.5
Avoidance of social contact
12.5
Avoidance of contact with other people with HIV
12.5
Degree of concealment of serology
High concealment
37.5
Selective disclosure
25
Selective concealing
5
Visibility
32.5
Reasons for concealing serology
Fear of others' rejection
52.5
Protection of significant others from stigma by association
17.5
Forced to or advised by others
10
Protection of significant others from suffering
22.5
Drawbacks of concealing serology
Emotional and cognitive burden of concealing a central identity aspect
45
Social and affective isolation
15
Fear of transmitting the infection
10
Note: Main global categories obtained from the sections of the interview used in the present
investigation. Responses to many of the categories allowed multiple coding.
Spanish adaptation of the HIV Stigma Scale 31
31
Table 3. Fit indexes of the proposed model and the alternative models
RMSEA [90% CI]
RMR
GFI
AGFI
CFI
NFI
NNFI
IFI
CAIC
Satorra-
Bentler χ
2
df
∆χ
2
(∆df)
1
Model 1.
(four first-order factors and two
second-order factors)
.051 [.046, .056],
.073
.96
.96
.98
.96
.98
.98
1281.71
813. 28
(p= .000)
398
Model 2. (four first-order
factors)
.054 [.050, .059]
.072
.96
.96
.98
.96
.98
.98
1405.33
934.96
(p = .000)
339
121.68 (59)
(p = .000)
Model 3. (two first-order
factors)
.084 [.080, .088]
.091
.94
.94
.95
.93
.94
.95
2141.73
1706.99
(p= .000)
404
893.45 (6)
(p = .000)
Model 4.
(four first-order factors and one
second-order factor)
.051 [.046, .056]
.076
.96
.95
.96
.96
.98
.98
1270.91
816.47
(p= .000)
400
3.19 (2)
(p = .20)
1
Change in chi-square between the proposed model (Model 1) and the rest of the proposed alternative models.
Spanish adaptation of the HIV Stigma Scale 32
32
Table 4. Descriptive statistics, covariances (ϕ) between the factors of the Spanish HIV Stigma Scale and correlations between the factors of the
Spanish HIV Stigma Scale and the criterion variables
Covariances (ϕ)
Pearson’s Correlations (r)
M
SD
Range
scores
Cronbach’
s α
PS
DC
NSI
CPA
Social
Support
Life
Satisfaction
Physical and
Psychological
Well-being
Quality of
Life
Self-
efficacy
HIV
disclosure
PS
16.82
7.03
8-32
.89
1
.50
.57
.59
-.36**
-.33**
-.29**
-.39**
-.30**
-.07
DC
26.32
6.79
9-36
.78
1
.72
.57
-.19**
-.18**
-.16**
-.21**
-.54**
-.54**
NSI
16.73
5.21
8-32
.70
1
.50
-.31**
-.29**
-.27**
-.34**
-.40**
-.30**
CPA
14.87
3.56
5-20
.75
1
-.13**
-.21**
-.19**
-.21**
-.24**
-.16**
PES
29.46
9.23
13-52
.87
-.33**
-.32**
-.28**
-.37**
-.33**
-.13**
IS
43.06
10.44
17-68
.82
-.28**
-.26**
-.24**
-.31**
-.56**
-.49**
HSSS
74.67
17.01
30-120
.88
-.35**
-.34**
-.30**
-.39**
-.50**
-.35**
Note: The scale has a range of 4 points. PS = Personalized Stigma, DC = Disclosure Concerns, NSE = Negative Self-Image, CPA = Concern with Public Attitudes, PES =
Perceived External Stigma, IS = Internalized Stigma. Perceived External Stigma and Internalized Stigma are the dimensions resulting from the second-order CFA. HSSS =
HIV Stigma Scale Spain.
** p < .01.
Spanish adaptation of the HIV Stigma Scale 33
33
Figure 1. First-order confirmatory factor analysis of the adapted HIV Stigma Scale.
Estimation of the robust unweighted least squares.
Spanish adaptation of the HIV Stigma Scale 34
34
Figure 2. Second-order confirmatory factor analysis of the adapted HIV Stigma Scale.
Estimation of the robust unweighted least squares. PS = Personalized Stigma, DC =
Disclosure Concerns, NSI = Negative Self-Image, CPA = Concern with Public
Attitudes.
Spanish adaptation of the HIV Stigma Scale 35
35
Appendix 1
Studies that have made adaptations and validations of the HIV Stigma Scale
Country
Authors and Year
Version
N
Back-translation
Reliability
Internal Validity
External Validity
US (New
England)
Bunn et al., 2007
HSS
1
-32
157 HIV+ (19-64 years)
Original version
HSS-32: .95
Factors: .90 to .97
CFA
8
: Four factors
9
Negative correlation with self-esteem and
positive with stigma consciousness,
discrimination and fear of discovery
India (Tamil
Nadu State)
Jeyaseelan et al.,
2013
HSS-25
250 HIV+ (18-40+
years)
Yes
Tamil
HSS-25: .88
Factors: .88 to .68
(Disclosure: .19)
EFA
10
, CFA: Four
factors
Higher among HIV +
with major depression than among those
without major depression (MDI)
Peru (Lima)
Franke et al., 2010
HSS-21
130 HIV + (IQR
6
: 26–
37 years).
Yes
Spanish
HSS-21: .84
Factors: .68 to .84
EFA: Four factors
Negative correlation with QoL (MOS-HIV)
and mental health (MOS-HIV mental
health) and positive with depression
República
Domicana
Miric (2004)
HSS-18
(dummy)
254 HIV+ people (15-
65 years old)
HSS-18: .84
Factors: .83 to .51
EFA: Four factors
Negative correlation with self-esteem, social
support and positive correlation with
depression
Puerto Rico
Jimenez et al., 2010
HFSS
2
-17
106 HIV +
Yes
Spanish
HFSS-17: .91
Factors: .77 to .88
EFA: Four factors
Positive correlation with depression and
sexual abuse
Kenya
(Mombasa)
Sarna et al. (2008)
HSS-16
234 HIV + (M≈37
years)
Swahili
HSS-16: .81
Three factors: DC,
NSI and CPA
9
No information
11
US (Michigan)
Wright et al., 2007
HSS-10
3
48 HIV + youth (16–25
years)
Original version
Factors: .72 to .84
EFA: Four factors
Positive correlation with global symptom
index (depression and anxiety) and alcohol
Sweden
Wiklander et al.,
2013
HSSC-8
4
58 HIV+ Child and
Adolescent (8-18 years
old)
Yes
Swedish
HSS-8: .81
Factors: .80 to .55
EFA: DC, NSI, CPA
9
Negative correlation with quality of life
related to the health (HRQoL)
Mozambique
(Ribáuè and
Malema)
Massicotte, 2010
HSS-40
5
237 HIV + ART
(HBC/non-HBC)
7
Portuguese and
Emakua
HSS-40: .97
Factors: .96 to .88
None
Negative correlation with quality of life
(Whoqol-Bref).
Fewer stigma in HBC that non-HBC.
1
HSS = HIV Stigma Scale;
2
HFSS = HIV Felt-Stigma Scale;
3
There is a translation to Amharic (Ethiopia) (Bezabhe et al., 2013);
4
HSSC = HIV Stigma Scale for Children;
5
HSS-40 (Berger et al., 2001) was also translated and back-translated into Bahasa Malaysia (Choi et al., 2010);
6
IQR=interquartile range;
7
ART= antiretroviral treatment;
HBC= Home Based Care program;
8
CFA=Confirmatory Factor Analysis;
9
Four Factors=Enacted Stigma, Disclosure Concerns (DC), Negative Self-Image (NSI), and
Concerns with Public Attitude (CPA);
10
EFA= Exploratory Factor Analysis;
11
Authors state it was field tested before use in Swahili but do not contribute any more
information.
Spanish adaptation of the HIV Stigma Scale 36
36
Appendix 2
Spanish adaptation of the HIV Stigma Scale
Nº
1
English
Nº
Spanish adaptation
4
Telling someone I have HIV is risky
1
Decirle a alguien que tienes el VIH es muy arriesgado
3
People’s attitudes about HIV make me feel worse about myself
2
Las actitudes de la gente hacia el VIH me hacen sentir mal conmigo mismo
2
I feel guilty because I have HIV
3
Me siento culpable por tener el VIH
5
Most people with HIV lose their jobs when employers learn that they have HIV
4
Las personas seropositivas pierden su trabajo cuando sus jefes se enteran que tienen el VIH
6
I work hard to keep my HIV a secret
5
Me esfuerzo por mantener en secreto que tengo el VIH
7
I feel I am not as good as others because I have HIV
6
Siento que no soy tan bueno/a como el resto de la gente porque tengo el VIH
8
I am ashamed to tell other people that I have HIV
2
7
Me da vergüenza contarle a otras personas que tengo el VIH
2
9
People with HIV are treated like outcasts
8
Las personas con VIH son tratadas como marginadas
1
In many areas of my life, no one knows that I have HIV
9
En muchos ámbitos de mi vida nadie sabe que tengo el VIH
10
Many people believe that a person with HIV is despicable
2
10
Mucha gente cree que una persona con VIH es despreciable
2
-
I feel very anxious about transmitting HIV to other people
3
11
Me angustia transmitir a otras personas el VIH
3
12
I feel as if my body were dirty because I have HIV
2
12
Siento como si mi cuerpo estuviera sucio por tener el VIH
2
-
I would understand it if someone rejected my friendship because I have HIV
3
13
Entendería que alguien rechazara mi amistad porque tengo el VIH
3
-
Having HIV is a punishment for some of my behaviors
3
14
Tener el VIH es un castigo por algunos de mis comportamientos
3
16
Most people with HIV are rejected when others learn that they have HIV
15
Muchas personas son rechazadas cuando los demás se enteran que tiene el VIH
17
I am very careful who I tell that I have HIV
16
Tengo mucho cuidado a quien le digo que tengo el VIH
18
Some people who know that I have HIV have grown more distant
17
Alguna gente que conozco se ha vuelto más distante conmigo desde que saben que tengo VIH
-
I prefer to avoid having sexual relations because I’m afraid of transmitting HIV to another
person
3
18
Prefiero evitar tener relaciones sexuales porque temo transmitir el VIH a la otra persona
3
20
Most people are uncomfortable around someone with HIV
19
La mayoría de la gente está incómoda si tiene cerca a alguien con VIH
21
I never felt that I have to hide the fact that I have HIV
20
Nunca he sentido la necesidad de esconder que tengo el VIH
22
I worry that people may judge me when they learn that I have HIV
21
Me preocupa que la gente me juzgue si se enteran de que tengo el VIH
24
I am hurt by how people react to learning I have HIV
22
Me siento herido/a por la manera en que la gente reacciona cuando sabe que tengo el VIH
25
I worry that people who know I have HIV will tell others
23
Me preocupa que la gente que sabe que tengo el VIH se lo cuente a otros
26
I regret having told some people that I have HIV
24
Me arrepiento de haberle dicho a algunas personas que tengo el VIH
29
People I care about stopped calling me after learning that I have HIV
25
Personas cercanas a mi han dejado de llamarme después de saber que tengo el VIH
32
People don’t want me around their children once they know that I have HIV
26
Hay gente que no me deja estar cerca de sus hijos después de saber que tengo VIH
33
People have physically backed away from me because I have HIV
27
La gente se aparta físicamente de mi porque tengo el VIH
35
I have stopped socializing with some people due to their reactions
28
He dejado de relacionarme con algunas personas debido a sus reacciones
36
I have lost friends by telling them that I have HIV
29
He perdido buenos amigos/as por decirles que tengo el VIH
37
I told people close to me to keep my HIV a secret
30
Le he pedido a gente cercana a mí que guarde el secreto de que tengo el VIH
1
Item number of the original scale
2
Item with variations in the translation compared to the original item.
3
Item added based on the content analysis of the qualitative study
