Psychometric Evaluation of a Cross-Culturally Adapted Felt Stigma Questionnaire Among People Living with HIV in Kenya

Article · August 2013with207 Reads
DOI: 10.1089/apc.2012.0403 · Source: PubMed
Abstract Psychometric properties of an 18-item HIV felt stigma questionnaire were evaluated utilizing data collected from a diverse ethnic and socioeconomic group of 370 people living with HIV/AIDS and receiving HIV/AIDS-related health services at an HIV clinic in Kenya. Factor analyses revealed a four factor solution (public attitudes, ostracize, discrimination, personal life disrupted) based on the Scree plot with explained variance of 44% that had Eigen values greater than 1.00. The retained felt stigma items revealed a Cronbach's alpha coefficient of 0.828, while the four factors had coefficient alphas ranging from 0.675 to 0.799. The adapted retained questionnaire was deemed a practical guide for measuring felt stigma in a Kenyan cultural context to necessitate provision of the most effective HIV-related mental health services to individuals living with HIV in Kenya.
Psychometric Evaluation of a Cross-Culturally
Adapted Felt Stigma Questionnaire Among
People Living with HIV in Kenya
Caroline Kingori, PhD, MPH,
Michael Reece, PhD, MPH,
Samuel Obeng, PhD,
Maresa Murray, PhD,
Enbal Shacham, PhD, MEd, MPE,
Brian Dodge , PhD,
Emannuel Akach, MBChB, MMed,
Peter Ngatia , PhD,
and David Ojakaa, PhD
Psychometric properties of an 18-item HIV felt stigma questionnaire were evaluated utilizing data collected from
a diverse ethnic and socioeconomic group of 370 people living with HIV/AIDS and receiving HIV/AIDS-related
health services at an HIV clinic in Kenya. Factor analyses revealed a four factor solution (public attitudes,
ostracize, discrimination, personal life disrupted) based on the Scree plot with explained variance of 44% that
had Eigen values greater than 1.00. The retained felt stigma items revealed a Cronbach’s alpha coefficient of
0.828, while the four factors had coefficient alphas ranging from 0.675 to 0.799. The adapted retained ques-
tionnaire was deemed a practical guide for measuring felt stigma in a Kenyan cultural context to necessitate
provision of the most effective HIV-related mental health services to individuals living with HIV in Kenya.
tigma, a discrediting phenomenon that is socially
is associated with rejection, shame, or
blame, and often directed towards an issue frowned upon
(e.g., HIV/AIDS) in the social norms of a given community.
To that end, HIV-related stigma is deemed an impediment to
the effectiveness of HIV prevention strategies in relation to
HIV testing, education, disclosure of seropositivity, condom
use, and treatment.
There are different types of stigma documented in the lit-
erature: internalized stigma, anticipated stigma, enacted
stigma, experienced stigma, felt stigma, symbolic stigma, in-
strumental stigma, among others.
Given these different
types of stigma, general stigma is deemed a complex and
multi-dimensional construct
that needs to be addressed
and measured with nuance. Particularly, research suggests (1)
distinguishing across different types of stigma to effectively
comprehend and isolate types of stigma that could potentially
influence targeted HIV prevention outcomes
and (2)
utilizing subscales (e.g., depression or anxiety) to ascertain
whether the interrelationship across related constructs sup-
ports construct validity.
In the current study, felt stigma is
examined among people living with HIV/AIDS. Due to the
influence of past experiences of shame, felt stigma may appear
in HIV-positive individuals who are fearful of other people’s
reactions, afraid of infecting others, unaware of other sero-
positives within their networks and are newly diagnosed.
Roberts and Miller
suggest that people living with HIV/
AIDS (PLWHA) are likely to internalize stigma, which can ad-
versely impact their emotional well-being and overall quality of
life. This is possible if there is a shortage of social support and
networks, which reportedly serve as a buffer against HIV-re-
lated stigma and provide an avenue for HIV-positive individ-
uals to stay engaged in HIV related health care.
screening for emotional issues such as depression or anxiety,
likely to be exacerbated by HIV-related stigma, could be a
regularaspectofHIV-relatedmental health care maintenance.
The extent to which HIV individuals become stigmatized
varies between different contexts (e.g., in one context PLWHA
may be terminated from employment or in another context
family members may ostracize the individual after disclosing
HIV seropositivity).
The challenge faced by researchers,
therefore, is finding out reasons behind stigmatization in
Department of Social and Public Health, Ohio University, Athens, Ohio.
Center for Sexual Health Promotion,
African Studies Program, and
Department of Applied Health Science, School of Health and
Physical Education, Indiana University, Bloomington, Indiana.
Department of Behavioral Sciences and Health Education, School of Public Health, Saint Louis University, St. Louis, Missouri.
African Medical Research Foundation (AMREF), Nairobi, Kenya.
Volume 27, Number 8, 2013
ª Mary Ann Liebert, Inc.
DOI: 10.1089/apc.2012.0403
different contexts at different periods of time.
For example,
Yebei et al.
examined felt stigma changes over time in Kenya
and extent to which it differs across socio-demographic con-
texts. Findings revealed that felt stigma differed significantly
between gender (male vs. females) and whether HIV-positive
individuals resided in the urban or rural regions. Authors
concluded that variability within social structures vis-a
rural versus urban contexts is likely to influence the extent to
which either gender internalizes negative perceptions con-
cerning their serostatus.
Relevant to the current study, to ensure valid and reliable
measurement of felt stigma within a Kenyan context, it is
critical to adapt a measurement tool cross-culturally to reflect
the cultural context. Culture is a mixture of shared beliefs,
way of thinking, behaviors, and values associated with group
identity and membership.
Additionally, culture is the
foundation for defining and understanding health in order to
develop and implement health strategies relevant to a par-
ticular cultural context.
Cross-cultural adaptation not only addresses language
(linguistic translation) but cultural adaptation needs in order
to prepare a questionnaire for use in another setting, so as to
enhance elicitation of candid responses and maintain content
The goal of cross-cultural adaptation is to produce equiv-
alence between the source and target population, given that a
myriad of questionnaires are adapted from one country for
use in another.
This is critical because a lack of equivalence
in questionnaires between source and target limits the com-
parability of responses across different target groups that can
impact the questionnaires validity and reliability.
cultural adaptation is also necessary even when the language
between cultures remains the same because their lifestyles
and cultural experiences may differ. A major draw-back in
cross-cultural adaptation, however, is a shortage of bilingual
translators and the complexity of the adaptation process.
In this article, we present the results of psychometric ana-
lyses of a cross-culturally adapted HIV felt stigma question-
naire administered to people living with HIV in an urban city in
Kenya. The questionnaire is made up of 18 items that examine
underlying feelings of fear of stigmatization by PLWHA. The
18-item questionnaire was adapted from a validated 11-item
developed in the USA. The 11-item question-
naire was an adaptation of a validated stigma questionnaire
and included items informed by HIV stigma literature.
Seven items deemed culturally appropriate were added to
the 11-item questionnaire in the current study. These seven
items, informed by literature,
examined the relationship
between the cultural context and felt stigma with regard to
perceived beliefs and attitudes of family, friends, religious
organizations, and healthcare systems towards the PLWHA.
The study protocols were approved by the Institutional
Review Boards at Indiana University-Bloomington and by the
Ethics and Scientific Review Committee of the African Med-
ical Research Foundation (AMREF) in Nairobi, Kenya.
Translation and back-translation
The questionnaire was translated from English to the
Kenyan national language Swahili, with the assistance of two
native Swahili-speaking bilingual translators. Swahili is a
national language and widely spoken by the majority of the
population in urban towns in Kenya. The questionnaire then
underwent back translation to ensure similarity in language
and meaning for both versions. Items were checked for sim-
ilarities in meaning with the English version and those with
similar meanings were retained.
Cross-cultural adaptation
To ensure that the questionnaire was conceptually equiv-
alent and culturally relevant to the targeted sample, a group
of four experts (two HIV researchers and two graduate stu-
dents) who are natives of Kenya, knowledgeable of the
Kenyan culture, bilingual and fluent in both English and
Swahili, were chosen to review the conceptual, idiomatic, and
semantic equivalence
of the English and Swahili question-
naire. The experts provided the questionnaire’s face validity.
Changes to some items were proposed and after those chan-
ges were made, the questionnaire was reviewed again and
deemed culturally appropriate for the target population.
Data collection
Data was collected from 370 participants to examine po-
tential underlying HIV felt stigma and the relationship to HIV
prevention strategies such as condom use, medication ad-
herence, and disclosure of serostatus, utilizing a researcher
administered survey. Participants were recruited from an HIV
voluntary testing and counseling clinic in a resource-limited
area in an urban city in Kenya in the year 2011. Targeted
participants were HIV positive from diverse ethnic and so-
cioeconomic background and receiving HIV/AIDS-related
health services at the HIV clinic.
Willing and eligible participants completed surveys after
signing an informed consent form. The survey was anonymous;
participants were assigned alphanumeric unique identifiers in
order to compare responses on the English and translated
Swahili questionnaire without using their real names.
Demographic and HIV-related characteristics. Items in-
cluded age, gender, employment status, tribal affiliation,
highest education level, and length of time since initial diag-
HIV felt stigma questionnaire. Item responses were on a
five-point scale ranging from 1 = ‘never’ to 5 = ‘always,’ to
assess underlying felt stigma symptoms over a 30-day period.
This questionnaire has been utilized in the USA
and western
among individuals attending HIV clinics.
The Patient Health Questionnaire-9 (PHQ-9). Depres-
sion was measured, given the documented association with a
diagnosis of HIV infection
and to help minimize the com-
plexity of the stigma construct.
PHQ-9 is made up of nine
items that examine depression symptoms over 2 weeks and
summed up on a range of severity between 0–27.
Items are
on a four-point Likert scale that range from ‘‘0-not at all to 3-
nearly every day.’ Higher scores indicate higher levels of
depression. PHQ-9 has previously been used among PLWHA
in the United States,
and Nigeria
to examine
psychosocial health status.
Data analysis
Data was analyzed utilizing PASW (Predictive Analytics
Software) Statistics version 19.0.
Descriptive analyses
Percentages, mean, standard deviation were calculated to
describe demographic variables, HIV-related characteristics
and HIV felt stigma.
Exploratory factor analyses. A principal factor analysis
was conducted to assess the questionnaire’s factor structure
using a principal factor extraction with Varimax rotation.
Number of factors retained was determined by examining
for each individual factor and the Scree plot.
Items that loaded onto factors needed to have loadings greater
than 0.50.
Reliability. Analyses of internal consistency were con-
ducted on the retained items from the felt stigma questionnaire
and emerging factors using Cronbach’s coefficient alpha.
Construct validity. Bivariate correlations were conducted
to determine if there was a relationship between the retained
HIV felt stigma questionnaire score, its factors, and depres-
sion (a theoretically related variable).
Participant description
The sample comprised 370 participants with a mean age of
37.06 (standard deviation [SD] = 8.61) years; 60.4% were fe-
male and 39.1% were male. The mean length of time for living
with HIV for females was 4.10 (SD = 3.76) years, while for
males was 3.47 (SD = 2.83) years. With regard to socioeco-
nomic status, 48.1% (n = 178) reported their highest level of
education as standard 4–8, the equivalent of the highest ele-
mentary American school level, and only 29.7% (n = 110) were
employed, with the majority (19.7%, n = 73) earning an income
of 2000–4000 Kenya Shillings, the equivalent of $20–$50 a
month. Most of the participants (27.6%, n = 102) hailed from
the Luhya ethnic group that hails from western Kenya.
The majority of the participants presented with low levels of
felt stigma (males: 41.4%, n = 111; females: 58.6%, n = 157) and
depression (males: 58.8%, n = 183; females: 41.2%, n = 128,
p < 0.05). To determine the levels of stigma and depression, felt
stigma and depression scores were recoded into categorical bi-
nary response variables (to enable comparison between low and
high levels). With regard to felt stigma, sum scores were col-
lapsed, then recoded to reflect two binary categories (1,2): low
stigma levels included sum scores lowest through 39 = 1, while
high stigma levels included sum scores of 40 through highest = 2.
With regard to depression, PHQ-9 sum scores of 0–27 distrib-
uted across severity categories, minimal = 1, mild = 2, moder-
ate = 3, moderately severe = 4, and severe = 5, were collapsed and
recoded into two binary categories (1 through 3 = 0 deemed mild
depression and 4 through 5 = 1 deemed severe depression).
Exploratory factor analyses
Before conducting a principal factor analyses to examine
the factor structure of the felt stigma questionnaire, it was
deemed necessary to examine sampling adequacy
via the
Kaiser-Meyer-Olkin (KMO). KMO revealed a value of 0.846
with a statistically significant Bartlett’s sphericity at 0.000
= 1436.9, df = 153, p = 0.000). The sample was deemed ade-
quate for factor analyses. Results from a principal factor
analysis with Varimax rotation revealed a four-factor solution
based on the Scree plot. The number of factors retained was
determined by examining Eigenvalues.
Four factors, comprising 10 of the 18 items, were extracted,
resulting in explained variance of 45% that had Eigen values
greater than 1.00. Items that loaded onto the factors had a cut-
off point of 0.50 and did not cross-load across the factors
(Table 1). Factor one (public attitudes) emerged the strongest,
explained the greatest percentage of variance (31.01%), and
had three factors load onto it with item-factor correlations
ranging from 0.628–0.547. Factor two (ostracize) had a per-
centage of variance of 6.63% with three item factor loadings
ranging from 0.784–0.604. Factor three (discriminate) had a
percentage of variance of 4.56% with two item factor loadings
ranging from 0.842–0.734. Factor four (personal life disrupted)
had two item factor loadings on it ranging from 0.612–0.516
with a percentage variance of 2.88% (Table 1).
Cronbach’s alpha for the retained felt stigma questionnaire
revealed a high internal consistency (a = 0.828), while the four
factors produced alpha coefficients of 0.675–0.799 (Table 2).
PHQ-9 Questionnaire also revealed a satisfactory level of in-
ternal consistency with an alpha of 0.702.
Construct validity
Pearson correlations were conducted to examine the rela-
tionship between the retained HIV felt stigma questionnaire,
its factors, and theoretically related depression. Findings re-
vealed a low to moderate significant relationship between
depression, HIV felt stigma, and three felt stigma factors.
There was a moderate, significant, and positive correlation
between depression and overall retained felt stigma tool
(r = 0.366, n = 365, p < 0.000). Presence of depression was as-
sociated with heightened feelings of stigmatization. Particular
to felt stigma factors, depression and factor one—public atti-
tudes—had a moderate, significant, and positive correlation
(r = 0.345, n = 365, p < 0.000). Presence of depression was as-
sociated with heightened felt stigma related to other people’s
attitudes towards PLWHA HIV status. There was a low but
significantly positive correlation between depression and
factor two—ostracize (r = 0.279, n = 343, p < 0.000). Depressive
feelings were likely associated with heightened felt stigma
related to ostracizing. With regard to depression and factor
four—personal life disruptedthere was a moderate, signif-
icant, and positive correlation (r = 0.312, n = 365, p < 0.000)
Depression was associated with increased feelings of stig-
matization related to PLWHA’s disruption of their personal
life in the workplace and at home.
Through cross-cultural adaptation of existing HIV felt
stigma questionnaires, HIV prevention interventions in
Kenya and similar contexts can have access to culturally
sensitive, valid and reliable measurement tools that
adequately measure felt stigma among PLWHA. The current
study is unique, given that it is the first study to conduct cross-
cultural adaptation of an HIV felt stigma questionnaire in an
urban population of PLWHA in Kenya. While cross-cultural
adaptation is critical for validity and cultural relevance, Zo-
meta et al.
suggests that ‘methods must limit the effect of
culture and language on the measurement properties of the
questionnaire’ given the complex nature of the adaptation
The current study sought to assess the psychometric
properties of a cross-culturally adapted HIV felt stigma
questionnaire among people living with HIV in an urban city
in Kenya. Study findings suggest that retained questionnaire
items are valid and reliable to measure HIV felt stigma in that
context. To use these retained items in different contexts, even
with a similar target group, it is necessary to adapt them to
enhance relevance.
Participants reported low levels of HIV felt stigma that
could be attributed to their being recruited from an HIV clinic
where they had access to social support groups that may have
minimized any adverse negative impact of felt stigma. There
is documented evidence highlighting that social support
(friends, family, involvement in community activities, etc)
may help to minimize social isolation tendencies that are
likely to exacerbate the fear of being stigmatized.
ever, in this study we cannot ascertain that the social support
groups caused low levels of stigma.
Construct validity findings revealed a statistically significant
relationship between the overall felt stigma construct, three of its
emerging factors, and the theoretically related depression con-
struct. However, the relationship was low to moderate, which
may be linked to participants’ reported low levels of depression
that could potentially have influenced the low levels of HIV felt
stigma given that depression is likely to enhance PLWHA’s
perception of HIV stigma.
Future research could examine
this relationship in a longitudinal study to determine if there
would be any variability from the current findings.
Factor analyses revealed four factors containing seven
items from the original HIV felt stigma questionnaire
three items from those added to enhance relevance of the
Table 1. Factor Structure and Loadings of the HIV Felt Stigma Questionnaire
Factor 1 Factor 2 Factor 3 Factor 4
Item number on the
attitudes Ostracize Discriminate
life disrupted
3. Feared that I would lose my friends if they learned
about my having HIV
0.628 0.401 0.003 0.181
8. Was embarrassed about having HIV
0.589 0.281 0.133 0.203
17. Felt like people who are important in my life were
disappointed by me because of my HIV status
0.547 0.262 0.288 0.115
12 Felt like disclosing my HIV status would prevent
my having a family
0.485 0.100 0.163 0.359
18 Felt like I could not take my medication as
prescribed because I worried about people
knowing my HIV status
0.448 - 0.038 0.136 0.233
13 Felt like disclosing my HIV status would interfere
with my relationship with my children
0.433 0.228 0.122 0.207
7 Avoided a situation because I was worried about
people knowing I have HIV
0.411 0.114 0.196 0.402
9 Felt that keeping my HIV status a secret was
- 0.399 - 0.054 0.121 0.045
16 Felt like people were blaming me for acquiring
0.376 0.367 0.315 0.241
4. Felt like people that I know were treating me
differently because of my HIV status
0.138 0.784 0.119 0.240
2. Felt that people were avoiding me because of my
HIV status
0.202 0.653 0.164 0.125
5. Felt like people looked down on me because I have
0.187 0.604 0.394 0.231
1. Felt that having HIV was a punishment for things I
had done in the past
0.252 0.260 - 0.023 0.132
14 Felt like people were avoiding eating my food
because of my HIV status
0.045 0.204 0.842 0.081
15 Felt like people were avoiding touching me because
of my HIV status
0.082 0.110 0.734 0.235
11. Felt like my working environment has been ad-
versely impacted because of my HIV status
0.060 0.322 0.108 0.612
10. Felt like my home life has been disrupted because
of my HIV status
0.221 0.374 0.113 0.516
6 Avoided dating because most people don’t want a
relationship with someone with HIV
0.244 0.117 0.268 0.454
Original Items from USA questionnaire.
New added items.
questionnaire to the cultural context in Kenya.
three new items demonstrated moderate to strong item factor
loadings (0.547–0.842). This indicates that these new items
were strongly related to the stigma construct and reliable in
measuring felt stigma in this context.
Of the four factors that emerged, factor three (3) and factor
four (4) (see Table 1) only had two items that loaded onto these
two factors, respectively. From a statistical perspective, a factor
needs a minimum of three items to load onto it in order to retain
it. However, in this study, factors three and four were retained
because conceptually the items that loaded are critical to un-
derstanding stigmatizing and discriminating beliefs and be-
haviors within an African context. In essence, items from these
two factors (fear of touch, fear of eating food prepared by an HIV
infected individual, and disruption of work and home envi-
ronment) revolve around social networks and group perspec-
tives that are critical in determining the identity of an individual
and sense of belonging within a cultural context, given that
stigma is a socially constructed phenomenon and HIV/AIDS is
a socially frowned upon issue
For example, relevant to food prepared by an HIV person,
an HIV stigma study conducted in South Africa by Air-
hihenbuwa et al.
found that ‘‘food, for example, represents a
form of nurturance that is a cornerstone in the bonding that is
established in the family.Beyond the physical ingestion,
food becomes an important way to contextualize relations
and connectedness in a culture in ways that could inform
sustainable intervention.’
Basically, sharing of food is a
cultural practice that is key in enhancing a sense of belonging,
connectedness, and identity within an African context vis-a
vis Kenya. Therefore, when an HIV-infected person is con-
cerned about those within his/her group setting avoiding
eating food prepared by him/her, such discriminating be-
havior produces feelings of shame because group connect-
edness is deemed severed. Thus, the resulting outcome may
be avoidance, alienation (e.g., refusing to interact or touch
HIV infected individual), lack of trustworthiness, and dis-
ruption of home/work life, which may potentially impact the
success of HIV prevention strategies such as condom use,
medication adherence, or disclosure of serostatus.
Overall, the emerging four dimensions may provide per-
tinent information for HIV interventions and clinics regarding
the multidimensionality of stigma, and the need to focus on
each different dimension at a time to adequately address HIV
felt stigma among PLWHA.
Reliability analyses of the felt stigma questionnaire and its
factors revealed high coefficient alphas, indicating a high in-
ternal consistency. High reliability scores are consistent with
other studies assessing psychometric assessment of HIV
stigma questionnaires.
Future studies could examine if
there would be changes across time in the same community.
In summary, compared to other HIV stigma question-
this study’s retained HIV felt stigma questionnaire
is unique. First, it addresses different dimensions of stigma,
whereas other questionnaires examine HIV stigma in general
albeit its multidimensionality that could potentially be mea-
suring different aspects of stigma.
Examining HIV
stigma in general may present challenges in determining which
dimensions could be influencing the targeted behavior(s).
Second, the retained questionnaire has items that focus on the
relationship between PLWHA and his/her cultural context in
influencing feelings of stigma that could impact uptake of HIV
prevention behaviors. Such items are necessary, given that re-
search suggests the importance of comprehending cultural
contexts where stigmatizing behavior such as blame, ostraciz-
ing, or fear is exhibited against PLWHA.
While the intention of the researcher is not to generalize the
findings to all individuals living with HIV, the findings can
speak to the importance of having a cross-culturally adapted
measurement tool that can enhance: (1) equivalence of ques-
tionnaires between the source and target so as to compare
responses across groups in different contexts and maintain
validity and reliability; (2) the likelihood of eliciting candid
HIV felt stigma responses from respondents within a partic-
ular cultural context; and (3) HIV health care system based on
candid responses from PLWHA in order to provide access to
efficient HIV care in resource-limited settings in Kenya.
Relevant to the HIV health care system, it is also critical to
examine HIV stigma among health care providers. In a frag-
mented health care system such as those found in developing
countries like Kenya, health care workers may be over-
worked, lack critical training in stigma and mental health is-
sues, are underpaid, are looked down upon for caring for HIV
infected individuals.
Hence, PLWHA may encounter stig-
matizing beliefs and behaviors within a health care setting. To
that end, within such settings, it is imperative to train health
care workers on the importance of enhancing compassionate
care, helpful behaviors, increased use of condom use, and
confidentiality and sensitivity of PLWHA serostatus.
Addressing such challenges can enhance adequate measure-
ment of felt stigma within a clinic setting given that stigma
may have an impact on HIV treatment strategies.
The study is not without limitations. First, findings are only
relevant to PLWHA attending an HIV clinic and have po-
tentially participated in a social support group. Second, there
is likelihood of self-selection bias whereby only participants
who agreed to participate in the study were recruited. Third,
this questionnaire only measured HIV felt stigma and may not
be suitable to measure general stigma given the complexity
and multidimensionality of the stigma construct. Finally,
since the questionnaire was researcher administered, given
the variability in educational levels whereby majority of the
participants revealed their highest level of education as
standard 4–8 (the equivalent of the highest elementary
American school level), the psychometric properties of the
questionnaire could have been impacted.
Table 2. Internal Consistency for PHQ-9, HIV
Felt Stigma Questionnaire with Retained Items
and Emerging Factors
Number of items Coefficient alpha
English questionnaire
Retained items
10 0.828
Public attitudes 3 0.722
Ostracize 3 0.770
Discrimination 2 0.799
Personal life disrupted 2 0.675
PHQ-9 questionnaire 9 0.702
The findings of the current study support documented
evidence that considers stigma in general as a socially con-
structed phenomenon capable of negatively impacting shared
values, beliefs, or norms. Therefore, HIV interventions and
clinics can focus on developing and promoting HIV education
via social marketing, targeting the public to desensitize them,
and minimize HIV felt stigma on PLWHA.
This project was sponsored in part by funding provided
from the School of Health, Physical Education, and Re-
creation and the Department of Applied Health Science at
Indiana University-Bloomington. We thank the co-authors,
study participants, medical officers at AMREF-Kenya,
statistical consultants, and research assistants. Its contents
are solely the responsibility of the authors and do not
necessarily represent any official view. Special thanks are
extended to Walter Kibet, Winnie Nzioka, Wairimu Njor-
oge, Yvonne Machira, Dr. Festus Ilako, Dorcas Kinuthia,
late Alex Thuo, Brian Blevins, Derrel Powers, Dong Sim,
Stephanie Dickinson, Dr. Michael Reece, Dr. Maresa Mur-
ray, Dr. Samuel Obeng, Dr. Enbal Shacham, Dr. Brian
Dodge, Dr. Emannuel Akach, Dr. Peter Ngatia, and
Dr. David Ojakaa.
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Caroline Kingori, PhD, MPH
Department of Social and Public Health,
Grover Center W347
1 Ohio University
Athens OH 45701
    • We designed a correlational transversal study that was approved by the authors' University ethical committee. In order to develop the two initial instruments and to ensure their content validity, we reviewed the current literature on IS and DC, focusing on items that encompass these constructs in existing scales [11, 19, 21, 22, 25, 29, 33,3536373839404142434445. We made an effort to select, combine, divide and create items that reflect the different aspects of IS and DC, resulting in the development of two draft instruments: the HIV Internalized Stigma Scale (HIV-ISS) and the HIV Disclosure Concerns Scale (HIV-DCS). Each scale comprised 11 items with a 5-point Likert-type response format.
    [Show abstract] [Hide abstract] ABSTRACT: Internalized stigma and disclosure concerns are key elements for the study of mental health in people living with HIV. Since no measures of these constructs were available for Spanish population, this study sought to develop such instruments, to analyze their reliability and validity and to provide a short version. A heterogeneous sample of 458 adults from different Spanish-speaking countries completed the HIV-Internalized Stigma Scale and the HIV-Disclosure Concerns Scale, along with the Hospital Anxiety and Depression Scale, Rosenberg's Self-esteem Scale and other socio-demographic variables. Reliability and correlation analyses, exploratory factor analyses, path analyses with latent variables, and ANOVAs were conducted to test the scales' psychometric properties. The scales showed good reliability in terms of internal consistency and temporal stability, as well as good sensitivity and factorial and criterion validity. The HIV-Internalized Stigma Scale and the HIV-Disclosure Concerns Scale are reliable and valid means to assess these variables in several contexts.
    Article · Jan 2017
    • Therefore, investigating exposure to discrimination requires an understanding of what constitutes exclusion, rejection, blame, and devaluation and how these processes occur for and are experienced by particular individuals or groups of individuals with disabilities. Studies of social stigma related to particular health conditions (e.g., Livingston & Boyd, 2010; on living with mental illness; Parker & Aggleton, 2003; on HIV and AIDS-related stigma and discrimination) and investigations in cross-cultural settings (Angermeyer, Buyantugs, Kenzine, & Matschinger, 2004; Kingori et al., 2013) have shown that discrimination takes many forms and operates in multiple contexts, both of which are likely to be specific to particular cultures at particular points in time and the nature of the oppressed and oppressing group. Discriminatory interactions experienced by people with disabilities, for example, may include staring, infantilizing , avoidance, distancing, insulting, bullying, harassment, and physical violence (Garland-Thomson, 2009; Herek, 2014; Imrie, 2000; Roulstone in disability service/care settings on public transport, in the street, in local shopping centers, and in cyberspace (Wedgwood, Smith, Shuttleworth, & Llewellyn, 2013).
    [Show abstract] [Hide abstract] ABSTRACT: Increasing attention is being paid to the impact of discrimination on the health of oppressed groups. In this chapter, we review the impact of the personal experience of discrimination on the health and well-being of people with intellectual disabilities. We begin by addressing conceptual and methodological issues facing research on links between discrimination and health. We then review: (1) research that has addressed the impact of the personal experience of discrimination on the health of oppressed groups; (2) what is known about the extent to which people with intellectual disabilities experience personal discrimination; (3) the literature that has attempted to address the impact of the personal experience of discrimination on the health of people with intellectual disabilities; (4) the literature on interventions aimed at reducing the exposure to or impact of discrimination among people with intellectual disabilities. Finally, we provide some suggestions and recommendations for future research in this area.
    Chapter · Dec 2015
    • That is, those who contract HIV through culturally-unaccepted behaviors (e.g., commercial sex) or practices (e.g., drug use) may experience greater stigma than those who contract it unintentionally, e.g., blood donors who were infected through HIV-contaminated blood collection equipment. Despite the presence of psychometrically sound measures of HIV-related stigma among a variety of populations, including PLWHAs [21,22], healthcare providers of PLWHAs [23,24], HIV-affected youth and children [25,26], men who have sex with men [27], and general populations in South Africa [28] and Yemen [29], few studies have investigated HIV-related stigma at the affected family level. This deficiency may reflect the absence of a validated scale to measure HIV stigma in both PLWHAs and their HIV-uninfected family members.Therefore, we designed a set of brief measurement scales to assess HIV-related stigma perceived by PLWHAs and courtesy stigma perceived by HIVuninfected family members of PLWHAs.
    [Show abstract] [Hide abstract] ABSTRACT: Courtesy stigma is the stigmatization a person perceives or experiences due to their association with a stigmatized individual or group. Most HIV-related stigma scales have been developed for people living with HIV/AIDS (PLWHAs), but not for their HIV-uninfected family members. To date, few measurement scales have been designed to measure the degree of stigma among both PLWHAs and their HIV-uninfected family members at the family level. We developed a set of courtesy stigma scales and estimated their reliability and validity from 256 PLWHAs and 256 of their HIV-uninfected family members. Exploratory and confirmatory factor analyses were performed in two independent samples: a development sample (N = 216) and a validation sample (N = 296), respectively. Two factors ("public stigma" and "self-perceived stigma") had high internal consistency reliability (Cronbach's alpha coefficient between 0.83-0.90) and good construct validity (standardized factor loading range: 0.37-0.95) in both samples. These findings document that the newly developed brief instrument is a psychometrically sound measure of HIV-related stigma among both PLWHAs and their HIV-uninfected family members.
    Full-text · Article · Mar 2014
  • [Show abstract] [Hide abstract] ABSTRACT: Abstract This study examines a proposed theoretical model examining the interrelationships between stigma, disclosure, coping, and medication adherence among 158 HIV-infected patients on antiretroviral therapy (ART) in northern Tanzania. Perceived and self-stigma, voluntary and involuntary disclosure, positive and negative coping, and demographics were assessed by trained interviewers, and self-reported adherence was collected during 5 months follow-up. Data were examined using correlation and regression analyses. The analyses showed that perceived stigma is primarily related to involuntary disclosure, whereas self-stigma is related to voluntary disclosure. Religious coping positively relates to acceptance, whereas perceived stigma explains higher levels of denial of HIV status. Lastly, adherence was negatively affected by alcohol use, self-stigma, and denial. We conclude that adherence is predominantly predicted by negative rather than positive coping mechanisms. Therefore, substituting maladaptive coping mechanisms like denial and alcohol use with a more adaptive coping style may be an important strategy to improve long-term ART adherence and well-being of patients. Moreover, this study showed that it is useful to examine both involuntary and voluntary disclosure when studying its relation with stigma.
    Full-text · Article · Feb 2014
  • [Show abstract] [Hide abstract] ABSTRACT: In Kenya, there was a reported decline in HIV incidence and prevalence among those aged 15 to 64 years and children. Despite the decline, closer assessment of psychosocial issues like depression, contextual factors (family and community), and social support is necessary given the likely impact on overall health and HIV prevention. This paper examines an association between symptoms of depression and social support on overall health among HIV-positive participants recruited from an HIV clinic in Kenya. Descriptive statistics and logistic regression analyses were utilized. Findings reveal that compared to those with minimal depression (referent category) participants with mild, moderate, moderately severe/severe depression had higher odds of having poor health, respectively. For social support, compared with participants with no social support (referent category), participants with high social support had lower odds of having poor overall health in both unadjusted and multivariable-adjusted models. In conclusion, this study suggests that HIV clinics and interventions need to focus more on the psychological and/or mental health status of HIV-infected individuals while providing avenues such as social support groups that can be a buffer against the negative impact of HIV infection, depression on overall health outcomes.
    Full-text · Article · Apr 2014
  • [Show abstract] [Hide abstract] ABSTRACT: Abstract While global scale-up of prevention of mother-to-child transmission of HIV (PMTCT) services has been expansive, only half of HIV-infected pregnant women receive antiretroviral regimens for PMTCT in sub-Saharan Africa. To evaluate social factors influencing uptake of PMTCT in rural Kenya, we conducted a community-based, cross-sectional survey of mothers residing in the KEMRI/CDC Health and Demographic Surveillance System (HDSS) area. Factors included referrals and acceptability, HIV-related stigma, observed discrimination, and knowledge of violence. Chi-squared tests and multivariate regression analyses were used to detect stigma domains associated with uptake of PMTCT services. Most HIV-positive women (89%) reported blame or judgment of people with HIV, and 46% reported they would feel shame if they were associated with someone with HIV. In multivariate analyses, shame was significantly associated with decreased likelihood of maternal HIV testing (Prevalence Ratio 0.91, 95% Confidence Interval 0.84-0.99), a complete course of maternal antiretrovirals (ARVs) (PR 0.73, 95% CI 0.55-0.97), and infant HIV testing (PR 0.86, 95% CI 0.75-0.99). Community perceptions of why women may be unwilling to take ARVs included stigma, guilt, lack of knowledge, denial, stress, and despair or futility. Interventions that seek to decrease maternal depression and internalization of stigma may facilitate uptake of PMTCT.
    Full-text · Article · Oct 2014
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