Abstract
To date, there are no established scales to assess PrEP stigma among youth. We validated the Youth PrEP Stigma Scale within the Adolescent Trials Network P3 study (2019-2021). Data from sexual and gender minority youth (16-24 years) who were prescribed PrEP across nine domestic sites were evaluated (N=235). Descriptive statistics, exploratory factor analysis, and correlation coefficients are reported. Results yielded a three-factor solution (PrEP Disapproval by Others, Enacted PrEP Stigma, and PrEP User Stereotypes) with strong factor loadings and Cronbach’s alphas ranging from .83 to .90, suggesting excellent internal consistency. Correlations between this Scale, anticipated HIV stigma, perceived HIV risk, and disclosure of sexual identity were significant, indicating potential for robust application. Given the persistence of HIV infections among youth, stigma as a barrier to prevention, and expansion of PrEP modalities, the Youth PrEP Stigma Scale could enhance intervention and mechanistic research among youth at elevated risk for HIV acquisition.
Keywords: HIV, PrEP, Pre-Exposure Prophylaxis, Stigma, Men who have Sex with Men, MSM, Transgender Women, Scale Development, Scale Validation
RESUMEN
Hasta la fecha, no existen escalas establecidas para evaluar el estigma de la PrEP entre los jóvenes. Validamos la Escala de estigma de la PrEP para jóvenes dentro del estudio P3 de la Red de ensayos para adolescentes (2019-2021). Se evaluaron los datos de jóvenes de minorías sexuales y de género (16-24 años) a quienes se les recetó PrEP en nueve sitios domésticos (N=235). Se informan estadísticas descriptivas, análisis factorial exploratorio y coeficientes de correlación. Los resultados arrojaron una solución de tres factores (desaprobación de PrEP por parte de otros, estigma de PrEP promulgado y estereotipos de usuarios de PrEP) con fuertes cargas factoriales y alfas de Cronbach que oscilan entre .83 y .90, lo que sugiere una excelente consistencia interna. Las correlaciones entre esta Escala, el estigma anticipado del VIH, el riesgo percibido del VIH y la divulgación de la identidad sexual fueron significativas, lo que indica un potencial para una aplicación sólida. Dada la persistencia de las infecciones por el VIH entre los jóvenes, el estigma como una barrera para la prevención y la expansión de las modalidades de PrEP, la Escala de estigma de la PrEP para jóvenes podría mejorar la intervención y la investigación mecánica entre los jóvenes con un riesgo elevado de contraer el VIH.
INTRODUCTION
Pre-exposure prophylaxis (PrEP) is a lifesaving intervention that protects people against human immunodeficiency virus (HIV) acquisition.[1] Until recently, the United States (US) Food and Drug Authority (FDA) had only approved oral daily PrEP with tenofovir disoproxil fumarate with emtricitabine (TDF/FTC) for adolescents and young adults weighing at least 35 kg.[2, 3] In December 2021, the HIV prevention community lauded the FDA-approval of long-acting injectable cabotegravir (CAB-LA).[4] Access to a long-acting PrEP formulation that does not require daily dosing has the potential to make positive impacts on the HIV prevention continuum of care. Despite persistently high HIV rates among youth, PrEP uptake remains low among young people for whom daily pill taking may be perceived as tedious or invasive.[4–8] Adolescents, youth, and emerging adults are disproportionately represented among new HIV cases in the US and globally, in part because this developmental period is marked by social and behavioral risk taking, sexual exploration, and high levels of impulsivity.[9–11] Youth are transitioning from dependency to autonomy, and during this time of maturation, they are undergoing neurological development that can affect adherence to strict medication protocols.[6, 8, 11] As such, CAB-LA, if acceptable, has the potential to curb the epidemic among youth, but only if clinical and research communities are able to address sociostructural barriers to care.
Decades of HIV prevention behavioral research has indicated that regardless of the availability of efficacious biomedical interventions, adoption and uptake are often slowed when non-clinical and sociostructural barriers are unaddressed.[1, 2, 6, 12, 13] Stigma is arguably one of the most detrimental structural forces affecting those at elevated risk for HIV exposure.[14–16] Stigma is a sociological construct wherein sub-groups that hold characteristics deemed “deeply discrediting” by society are treated poorly (enacted stigma), may brace themselves for poor treatment (anticipated stigma), and may feel minimized, rejected, or less than their non-stigmatized peers (internalized stigma).[17–19] HIV researchers face the ongoing challenge of how to define, measure, address, and reduce dimensions of stigma in lasting ways that improve health outcomes.[20–22] Evidence shows that HIV-related stigma’s deleterious effects hurt physical and mental health and are linked to negative outcomes across the HIV treatment and prevention continuums of care.[23, 24]
Youth, due to their developmental stage, are particularly vulnerable to the effects of stigma.[9] Intersectional stigma -- stigma related to holding multiple societally discredited identities -- such as sexual or gender identity, HIV risk, and minoritized race or ethnicity, reduces HIV prevention engagement, particularly among youth who may be more concerned and therefore more susceptible to harmful societal depictions.[24, 25] Rates of PrEP uptake among youth are low compared to older age groups, in part due to PrEP and HIV-related stigma.[26] Mechanistically, PrEP stigma likely functions similar to HIV stigma with experiences of enacted stigma leading to anticipated and internalized stigma.[18] Once stigma is internalized, it can harm youth on PrEP and youth who are clinically indicated for PrEP. A recent scoping review of internalized stigma and PrEP found that PrEP-related stigma was linked to HIV-related stigma and sexual risk behaviors.[27] PrEP stigma is a barrier to quality care, with those on PrEP suggesting that medication adherence is negatively influenced by PrEP related stigma.[28, 29]
There are multiple interventions available to promote PrEP to eligible youth, and new interventions are being developed, adapted, and tailored to keep pace with the evolving HIV prevention landscape.[30] Even with the availability of these strategies, PrEP uptake among youth remains sub-optimal.[2, 6] This is due to a number of factors, within which, stigma is highly impactful (harmful). Addressing PrEP-related stigma in PrEP promoting interventions for youth, requires the ability to measure and understand how this stigma affects health outcomes directly, as well as through mediated and moderated pathways. We note that a handful of PrEP stigma scales have been tested and validated, but these scales have not been tailored specifically for youth at elevated risk for HIV exposure, and – to our knowledge – none of the existing scales have been validated using data from those currently on PrEP.[31–34] In contrast, the scale presented herein has been developed, tested, and validated with a multisite sample of youth on PrEP. Youth in general, as well as sexual and gender minority youth, are key populations for HIV prevention, in part, due to their higher rates of new infections and engagement in risk-taking behaviors.[5, 7]
Under the auspices of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NIH/NICHD)-funded Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN), we conducted the Prepared, Protected, emPowered (P3: ATN protocol 142) intervention study within which we developed and tested the Youth PrEP Stigma Scale for use specifically with youth at high risk for HIV exposure and acquisition.[35] This manuscript presents statistical validation of the Youth PrEP Stigma Scale.
METHODS
Parent study
The P3 study tested the impact of mobile application use among young men who have sex with men (YMSM) and young transgender women who have sex with men (YTWSM), ages 16-24 years, through a nationwide, three-arm randomized controlled trial, with assessments at baseline, after three months (end of intervention phase) and after six months (post-intervention phase).[35] Stigma was a secondary outcome measured at all three points of data collection. ClinicalTrials.gov Identifier: NCT03320512.
Informed consent and ethics review
The ATN P3 protocol, informed assent/consent documents, and related modifications were reviewed and approved by the University of North Carolina, Chapel Hill (UNC) Institutional Review Board (IRB, #17-1951).
Data and participants
The sample for this study included YMSM and YTWSM, aged 16-24 years. All participants were on PrEP or had been on PrEP previously and planning to restart in the next seven days. All participants resided in the US and were prescribed PrEP (N=235) through PrEP services that were provided at nine clinics with multi-state catchment areas: Atlanta, Georgia; Boston, Massachusetts; Bronx, New York; Chapel Hill, North Carolina; Charlotte, North Carolina; Chicago, Illinois; Houston, Texas; Philadelphia, Pennsylvania, and Tampa, Florida. Eligibility criteria also included ability to speak English and provide consent in English.
Youth and community feedback
As part of the measures development and section processes, the study team reviewed previously published qualitative and quantitative research on PrEP among youth.[36] The team also consulted with expert reviewers, as well at the ATN’s national youth advisory board and the project specific youth advisory board to identify key items for inclusion and to ensure these items were acceptable to potential youth study participants.
Development of the Youth PrEP Stigma Scale
The Youth PrEP Stigma Scale was developed leveraging previously tested measures from HIV and PrEP stigma scales available at the time of P3 study implementation. These measures were tailored to include factors relevant to youth and to appropriate developmental health literacy level. Questions were adapted to reflect a focus on youth who had PrEP experience, since existing scales focused on mostly PrEP-naïve populations.
In this process, we first generated an initial item pool of twenty-two individual measures. Based on reviews and feedback from experts in the field of HIV or PrEP-related stigma, items and wording were tailored for youth. We excluded three items related to enacted stigma; for example, “I have been blamed by people in my community for spreading STIs through not using condoms,” because these measures were deemed as not directly measuring PrEP-related stigma. After these exclusions and refinement of measures, the scale was left with nineteen robust items that were endorsed by expert, community, and youth representatives.
Scoring of the Youth PrEP Stigma Scale
All nineteen items included in the Youth PrEP Stigma Scale are rated on a 4-point Likert scale (1=strongly disagree to 4=strongly agree) with no reverse-coded items. Possible range of scores for the full Youth PrEP Stigma Scale is 19-76, with ranges for sub-scales or factors being 8-32 for Disapproval by Others, 7-28 for Enacted PrEP Stigma, and 4-16 for PrEP User Stereotypes. Higher scores indicate higher levels of PrEP-related Stigma among youth. For scoring purposes, composite scores are calculated using the mean of the items in the whole or sub-scale.
PrEP and HIV-related measures
Community PrEP norms
Measures were created for this study to assess community norms related to taking PrEP, including perception of community-level PrEP stigma. Items are rated on a 4-point Likert scale (1=strongly disagree to 4=strongly agree) and included, “People taking PrEP are portrayed poorly in the media and online”, “People in my community talk poorly about people taking PrEP”, and “I think I am not following the ‘rules’ of my community if I take PrEP.” An exploratory factor analysis was employed to examine the factor structure of these three items. Bartlett’s test of sphericity was significant [χ2(3)=150.708, p<.001)], and Kaiser-Myer-Olkin (KMO) value was .65, suggesting the suitability of data for factor analysis.[37] Results yielded a single factor that explained 64.96% of the variance. Factor loadings ranged from .73 to .86. In this study, Cronbach’s alpha was .72.
Anticipated HIV stigma
Anticipated HIV-related stigma was assessed with four items adapted from Golub et al.’s study.[38] Participants responded using a 4-point Likert scale (1=strongly disagree to 4=strongly agree). An exploratory factor analysis was conducted to determine the factor structure of the four items. KMO value (.79) and Bartlett’s test of sphericity [χ2(6)=459.869, p<.001)] suggested the suitability of data for factor analysis. Results indicated a one-factor solution, accounting for 71.06% of the variance. Factor loadings ranged from .80 to .89. In the current study, this measure showed high internal consistency, with Cronbach’s alpha = .86.
Perceived HIV risk
Perceived HIV risk, often a precursor to beginning PrEP, was assessed with five items adapted from the Perceived Risk of HIV Scale.[39] We conducted an exploratory factor analysis to identify the factor structure of the five items. KMO value was .72 and Barlett’s test of sphericity was significant [χ2(10)=249.342, p<.001)], suggesting data’s suitability for factor analysis. Results yielded a single factor that explained 47.96% of the variance. Factor loadings ranged between .45 and .83. In the current study, Cronbach’s alpha was calculated as .70.
Other measures
Disclosure of sexual identity
Participants responded to three items regarding family, peer, and primary care provider (PCP) knowledge of their sexual identity.[40, 41] Items included, “How many of your immediate family members know about your sexual identity?” and “How many of your peers know about your sexual identity?” Response options for these two items: None, some, but less than half, about half; more than half, and all. Participants were also able to respond from 1=does not know to 4=definitely knows to the question: “How open are you about your sexual identity to your primary medical care provider?”
Statistical analyses
We examined descriptive statistics and thereafter conducted an exploratory factor analysis (principal component analysis with varimax rotation) to identify the factor structure of Youth PrEP Stigma Scale. In the factor analysis, the following criteria for item/factor retention were used: a minimum communality of 0.30 for each item, a minimum factor loading of 0.40,[42, 43] and eigenvalue of 1.0 or greater.[44] Then, Cronbach’s alpha coefficients were calculated to assess internal consistency reliability. Lastly, to validate the Youth PrEP Stigma Scale, Pearson correlation coefficients between the Youth PrEP Stigma Scale and related study variables, namely community PrEP Norms, anticipated HIV stigma, perceived HIV risk, and self-disclosure of sexual identity, were calculated. All analyses, including mean score calculations for scoring, were conducted using the Statistical Package for the Social Sciences (SPSS; Version 22, Inc., Chicago, IL).
RESULTS
Sample demographics
Table 1 includes demographic information of our sample. Mean age was 21.6 years, with a standard deviation (SD) of 1.95 years. About 23% identified as African American or Black and about 62% identified as White. Over a quarter (28%) were Hispanic or Latinx. The majority (92%) were of male gender, and 79% reported being gay or same gender loving. Nearly half reported a monthly income that indicated poverty; specifically, 43% reported a monthly income of under $1,000 a month (about $12,000 annually). The federal poverty guideline (level) is $13,590 annually.
Table 1.
Descriptive statistics of study participants (N=235)
| Variables | M (SD) or N (%) |
|---|---|
| Age | 21.60 (1.95) |
| Hispanic or Latinx | |
| Yes | 66 (28.1) |
| No | 169 (71.9) |
| Race | |
| American Indian/Alaskan Native | 9 (3.8) |
| Asian | 21 (8.9) |
| Black | 54 (23.0) |
| White | 145 (61.7) |
| Other | 1 (0.4) |
| Decline | 14 (6.0) |
| Gender Identity* | |
| Female | 2 (0.9) |
| Male | 215 (91.5) |
| Transgender woman or transfeminine | 9 (3.8) |
| Genderqueer, gender non-conforming, or non-binary | 22 (9.4) |
| Decline | 1 (0.4) |
| Sexual identity | |
| Gay or same gender loving | 186 (79.1) |
| Bisexual | 27 (11.5) |
| Queer | 18 (7.7) |
| Straight or heterosexual | 2 (0.9) |
| Pansexual | 2 (0.9) |
| Income (past 30 days) | |
| $0-$999 ($0-$11,999/yr)** | 102 (43.3) |
| $1000-$4,999 (about $12,000-$59,999/yr) | 100 (42.5) |
| $5000 or more (about $60,000 or more/yr) | 11 (4.7) |
| Don’t know or declined to answer | 22 (9.3) |
Study participants could select more than one gender identity.
Under the 2022 federal poverty level for a single individual of $13,590 annually
Youth PrEP Stigma Scale factors
To develop the structure of the Youth PrEP Stigma Scale, we performed exploratory factor analysis. Bartlett’s test of sphericity was significant [χ2(171)=2929.135, p<.001)], and KMO value was .90, suggesting data’s suitability for factor analytic procedures.[37] Results of the factor analysis yielded a three-factor solution: PrEP Disapproval by Others (8 items), Enacted PrEP Stigma (7 items), and PrEP User Stereotypes (4 items). Based on the criteria for item retention, no items were eliminated. The three-factor solution accounted for 65.26% of the variance. Factor loadings ranged between .55 and .86. See Table 2 for all factor loadings.
Table 2.
Factor loadings for Youth PrEP Stigma Scale items
| Items | Factor Loadings | ||
|---|---|---|---|
| Disapproval by Others | Enacted PrEP Stigma | PrEP User Stereotypes | |
| 8. I worry my friends will find out that I take PrEP | .82 | ||
| 5. I feel ashamed to tell other people I am taking PrEP | .77 | ||
| 7. I worry people will think I am gay if they know I take PrEP | .74 | ||
| 9. I worry my family will find out that I take PrEP | .71 | ||
| 11. I think people will give me a hard time if I tell them I take PrEP | .69 | ||
| 12. I think people will judge me if they know I am taking PrEP | .68 | ||
| 6. I worry people will think I am a bad person if they know I take PrEP | .68 | ||
| 10. I worry my sex partners will find out that I take PrEP | .57 | ||
| 19. I have experienced physical violence because I am taking PrEP | .86 | ||
| 14. I have been rejected romantically because I take PrEP | .81 | ||
| 13. I have been blamed by people in my community for spreading HIV through PrEP use | .78 | ||
| 18. I have been unfairly discriminated against because I take PrEP | .78 | ||
| 17. I have been yelled at or scolded because I take PrEP | .75 | ||
| 15. I have been slut shamed because I take PrEP | .65 | ||
| 16. I have been judged by a health care provider for taking PrEP | .60 | ||
| 2. I worry people will assume that I am HIV+ if they know I take PrEP | .78 | ||
| 1. I worry people will assume I sleep around if they know I take PrEP | .75 | ||
| 3. I worry people will think my partner(s) are HIV+ if they know I take PrEP | .74 | ||
| 4. I worry about listing PrEP as one of my current medications during doctor appointments | .55 | ||
Factor 1 (PrEP Disapproval by Others) explained 25.12% of the variance, with an eigenvalue of 8.60; Factor 2 (Enacted PrEP Stigma) 24.12%, with an eigenvalue of 2.54; and Factor 3 (PrEP User Stereotypes) 16.02%, with an eigenvalue of 1.26.
Reliability of the Youth PrEP Stigma Scale factors
Internal consistencies of the scales were calculated. Cronbach’s alpha coefficients were .90 for PrEP Disapproval by Others, .88 for Enacted PrEP Stigma, .83 for PrEP User Stereotypes, and .92 for the entire scale, indicating strong reliability. We did not calculate test-retest reliability coefficient due to delay between baseline and follow-up data collection, and because a goal of the intervention was to destigmatize PrEP adherence thereby potentially altering participant responses over time.
Validity of the Youth PrEP Stigma Scale
Correlation coefficients between the Youth PrEP Stigma Scale, community PrEP norms, anticipated HIV stigma, perceived HIV risk, and self-disclosure of sexual identity were computed to examine construct and predictive (i.e., concurrent) validity. As shown in Table 3, all Youth PrEP Stigma Scale scores (Scale Total Score, PrEP User Stereotypes, Disapproval by Others, Enacted PrEP Stigma) were significantly correlated with community PrEP norms (t=13.35, r=.66, p<.01; t=8.54, r=.49, p<.01; t=11.11, r=.59, p<.01; t=12.01, r=.62, p<.01, respectively), providing evidence for the construct validity of the Youth PrEP Stigma Scale. Results indicated significant correlations between Youth PrEP Stigma Scale factors and anticipated HIV stigma, perceived HIV risk, and self-disclosure of sexual identity, suggesting that all three Youth PrEP Stigma Scale factors, especially PrEP User Stereotypes and Disapproval by Others, have good validity in predictive value.
Table 3.
Correlation coefficients of Youth PrEP Stigma Scale factors
| Variables | PrEP-related Stigma-Total | t | PrEP User Stereotypes | t | Disapproval by Others | t | Enacted PrEP Stigma | t |
|---|---|---|---|---|---|---|---|---|
| PrEP or HIV-related Measures | ||||||||
| Community PrEP Norms | .66** | 13.35 | .49** | 8.54 | .59** | 11.11 | .62** | 12.01 |
| Anticipated HIV Stigma | .27** | 4.28 | .35** | 5.70 | .25** | 3.94 | .00 | 0.0 |
| Perceived HIV Risk | .19** | 2.95 | .22** | 3.43 | .11 | 1.68 | .13* | 2.00 |
| Self-disclosure of Sexual Identity | ||||||||
| Family | −.21** | −3.24 | −.19** | −2.92 | −.21** | −3.24 | −.09 | −1.36 |
| Peer | −.30** | −4.80 | −.24** | −3.77 | −.39** | −6.46 | −.08 | −1.22 |
| PCP | −.10 | −1.30 | −.08 | −1.04 | −.12 | −1.57 | −.04 | −.52 |
|
| ||||||||
| Mean(SD) | 4.92(1.50) | 1.92(.73) | 1.65(.63) | 1.34(.43) | ||||
p < .05,
p < .01.
DISCUSSION
The purpose of this study was to explore the internal consistency and external validity of the newly developed Youth PrEP Stigma Scale evaluated with a population of youth at elevated risk of HIV exposure in the ATN protocol 142: P3 trial. Our study sample was racially diverse, with roughly 40% non-White or Hispanic participants who predominantly identified as gay and reported low income. To our knowledge, our study is the first to validate a PrEP stigma scale specific to youth and for youth at risk of HIV acquisition. We found that our key factors yielded a three-factor solution (PrEP Disapproval by Others, Enacted PrEP Stigma, and PrEP User Stereotypes) with strong factor loadings and individual factor Cronbach’s alphas ranging from .83 to .90, suggesting excellent internal consistency. Results also indicated correlations between scale factors and community PrEP norms, anticipated HIV stigma, perceived HIV risk, and self-disclosure of sexual identity to peers, parents and providers.
Comparing the Youth PrEP Stigma Scale to existing PrEP stigma scales
To our knowledge, there are currently five validated stigma scales on PrEP: PrEP Stigma Scale,[31] Community PrEP Related Stigma Scale,[33] HIV PrEP Stigma Scale,[32], PrEP Anticipated Stigma Scale,[34] and the newly validated Youth PrEP Stigma Scale presented herein. All five scales were validated in the past five years, four were tested with sexual and gender minority (SGM) populations. The Youth PrEP Stigma Scale is unique with its focus on the experience of current and prior PrEP users and its validation with a racially diverse sample of SGM youth. While the Community PrEP Related Stigma Scale’s sample included about 35% Latinx participants,[33] and the PrEP Stigma Scale was tested with a sample that included about 27% African American participants,[31] only the Youth PrEP Stigma Scale had over 20% Latinx (28%) and African American (23%). Similar to the Youth PrEP Stigma Scale, both the PrEP Stigma Scale and the HIV PrEP Stigma Scale were tested across multiple states,[32] and all scales were validated with sample sizes greater than 100 participants. The number of items in these scales ranged from 8 to 22, with the Youth PrEP Stigma Scale including 19 indicators. Number of sub-factors ranged from one in the HIV PrEP Stigma Scale to four in the Community PrEP Related Stigma Scale, with the Youth PrEP Stigma Scale including three factors.
While the PrEP Anticipated Stigma Scale was tested with adult cisgender heterosexual women,[34] and our Youth PrEP Stigma Scale was validated with a sample of predominantly young gay men, these scales shared two factors: PrEP User Stereotypes and PrEP Disapproval by Others. In the PrEP Anticipated Stigma Scale, PrEP User Stereotypes consisted of five items compared to four items in our matched factor;[34] however, even within the same-named factors, only two of the four or five items were shared. In contrast, the PrEP Anticipated Stigma Scale PrEP Disapproval by Others factor includes three items compared to eight items in the same factor within the Youth PrEP Stigma Scale.[34] The factor overlap in these stigma scales that were validated with very different populations, one scale with eight items validated with adult females and the other with nineteen items validated with a young predominantly male sample, may indicate that certain commonalities related to PrEP stigma are constant and exist across diverse populations and settings. Table 4 includes a detailed comparison of all five scales.
Table 4.
Comparing the Youth PrEP Stigma Scale to existing validated PrEP stigma scales
| Youth PrEP Stigma Scale | PrEP Stigma Scale[31] | Community PrEP Related Stigma Scale[33] | HIV PrEP Stigma Scale[32] | PrEP Anticipated Stigma Scale[34] | |
|---|---|---|---|---|---|
| Authors | Budhwani, et. al. | Klein and Washington | Algarin et. al. | Siegler et. al. | Calabrese et al |
| Study Year | 2019-2021 | 2017-2018 | 2020-2021 | 2018 | 2017 |
| Reliability Coefficients | Disapproval=0.90 Enacted=0.88 Stereotypes=0.83 Entire Scale=0.92 |
0.96 | 0.86 | Semantic Differential=0.88 Likert=0.82 |
Stereotypes=0.87 Disapproval=0.91 |
| # of Items | 19 | 22 | 16 | 12 | 8 |
| # of Factors | 3 | 3 | 4 | 1 | 2 |
| Type of Scale | 4-point Likert | Yes and no and 5-point Likert | True and False, Likert, and sliding scale of proportions | Semantic differential and Likert | 4-point Likert |
| Location | Multiple sites across the United States | National sample | Florida | Multiple sites across the United States | Connecticut Planned Parenthood Centers |
| Primary Populations | Young MSM and TGWM | MSM | Adult male sex at birth with sexual attraction to men | Adult male sex at birth having anal sex with a man in past year | HIV-negative, heterosexually-active, cisgender-women |
| PrEP usage | 95.7 % current use, 4.3 % prior use | Not reported (82.1% reported being HIV-negative) | Sample only had to report awareness of PrEP | 9.0% current use, 2.9% prior use (6.8% living with HIV; 17.9% PrEP eligible) | PrEP-inexperienced |
| Sample Size | N=235 | N=273 | N=107 | N=279 | N=597 |
| % African American and Latinx | 23.0% African American; 28.1% Latinx |
27.1% African American; 18.3% Latinx |
6.6% African American; 34.9% Latinx |
2.3% African American; 7.7% Latinx |
39.4% African American; 24.1% Latinx |
| Age (Years) | 16-24 years; mean=21.6 |
18-72 years; mean=34.4 |
18+ years; mean=30.4 |
Unknown; 12.9% < 25 |
18+ years; 43% 18-25 years |
Example of potential value in differentiating by factor
As noted in Table 3, PrEP User Stereotypes had a moderate, positive correlation to community PrEP norms (r=.49; p<.01), and a moderately negative correlation with self-disclosure of sexual identity to peers (r=−.24; p<.01). Example of items that loaded on this factor included, “I worry people will assume that I am HIV positive if they know I take PrEP” and “I worry people will assume I sleep around if they know I take PrEP.” These items reflect the perceptions that some individuals internalize stigma related to PrEP use.[23] From a developmental standpoint, this is an anticipated consequence from enacted stigma and community orientation that may prevent youth from starting PrEP given the importance of peer relationships for this age group. The ability to ascertain this information is immensely valuable when working with youth, because efforts to reduce the impact stereotypes may warrant different techniques than those to bolster youth against experiences of PrEP related enacted stigma.
Limitations
Limitations should be considered when applying findings. First, data for this analysis are cross-sectional and do not offer inference on causal associations. In a follow-up project, there is the opportunity to evaluate the Youth PrEP Stigma Scale over time, specifically using the second (3 month) and third (6 month) data collection periods of the P3 study. Second, while our sample size has over-representation of participants of color, it is still predominantly White which limits our ability to explore more complex analyses such as testing racial differences in experiences of PrEP stigma. As a result, our statistical power to detect such findings is limited. Our analyses are similarly limited in their ability to directly capture and measure intersectional stigma itself.[14, 45] The sample has several strengths and unique features, but may not represent the entirety of the PrEP-engaged youth populations; thus, may not be generalizable but should be validated in more samples of PrEP-engaged youth. Lastly, our study does not note any other youth-specific PrEP stigma scales; therefore, convergent and discriminant analyses are limited and merit future research in a larger sample.
CONCLUSIONS
Our results indicate that the Youth PrEP Stigma Scale is a valid instrument to be used with diverse youth populations. The testing of this scale with PrEP-engaged youth, an extremely difficult population to reach, makes a notable contribution to existing prevention science. Specifically, the validation and tailored design for PrEP experienced youth is critical, considering that youth have particularly poor adherence and are inconsistent with their medications.[24, 29, 36] Having a validated stigma measure at the time of initial PrEP prescribing, as well as at follow-up where drop-off in the prevention continuum may occur, could inform more youth-friendly, tailored approaches to promote PrEP persistence.
The Youth PrEP Stigma Scale is promising in its multidimensional approach to capturing PrEP-related stigma. It addresses individual, interpersonal, and community level factors while capturing PrEP stigma dimensions. The Youth PrEP Stigma Scale’s inclusion of enacted stigma is directly relevant to the lived experiences of youth on PrEP, obtaining actual experiences rather than hypothetical opinions which may be an acceptable approach for youth who may struggle with more abstract questions or theoretical scenarios.
Future adolescent, youth, and emerging adult health research should incorporate this Youth PrEP Stigma Scale into larger studies and clinical trials focused on HIV prevention, PrEP uptake, and PrEP persistence. The growing array of PrEP options reinforces the need to address stigma. HIV prevention behavioral and structural interventions that measure and address PrEP-related stigma offer a promising opportunity to address the HIV epidemic among youth at high risk of HIV exposure and acquisition.
Funding
Research reported in this publication was supported by the National Institute of Mental Health (NIMH) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health (NIH) under Award Numbers K01MH116737 and R25MH067127 (Budhwani) and U19HD089881 (Hightow-Weidman). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Footnotes
Conflicts of interest
None noted.
Ethics approval
The Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) Prepared, Protected, emPowered (P3: ATN protocol 142) informed assent/consent documents, and related modifications were reviewed and approved by the University of North Carolina, Chapel Hill (UNC) Institutional Review Board (IRB, #17-1951).
Consent to participate
All participants agreed to participate and provided informed consent.
Consent for publication
Not applicable.
Code availability
Code is available upon request from our quantitative lead, Dr. İbrahim Yiğit.
Availability of data and material
Data is available upon request through the University of North Carolina, Chapel Hill (UNC) BatLab via the study Principal Investigator, Dr. Lisa Hightow-Weidman.
REFERENCES
- 1.Spinner CD, Boesecke C, Zink A, Jessen H, Stellbrink H-J, Rockstroh JK, et al. HIV pre-exposure prophylaxis (PrEP): a review of current knowledge of oral systemic HIV PrEP in humans. Infection. 2016;44(2):151–8. [DOI] [PubMed] [Google Scholar]
- 2.Camp C, Saberi P. Facilitators and barriers of 2-1-1 HIV pre-exposure prophylaxis. PLOS ONE. 2021;16(5):e0251917. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Wood BR. Prevention of HIV for persons with low-frequency, high-risk exposures: PrEP (preexposure prophylaxis), PEP (postexposure prophylaxis), or ‘PIP’ (postexposure prophylaxis in-pocket). AIDS. 2020;34(3). [DOI] [PubMed] [Google Scholar]
- 4.Ogunbajo A, Tsai AC, Kanki PJ, Mayer KH. Acceptability of and Preferences for Long-Acting Injectable HIV PrEP and Other PrEP Modalities among Sexual Minority Men in Nigeria, Africa. AIDS and Behavior. 2022. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Hart-Cooper GD, Allen I, Irwin CE Jr., Scott H Adolescent Health Providers’ Willingness to Prescribe Pre-Exposure Prophylaxis (PrEP) to Youth at Risk of HIV Infection in the United States. J Adolesc Health. 2018;63(2):242–4. [DOI] [PubMed] [Google Scholar]
- 6.Macapagal K, Kraus A, Korpak AK, Jozsa K, Moskowitz DA. PrEP Awareness, Uptake, Barriers, and Correlates Among Adolescents Assigned Male at Birth Who Have Sex with Males in the U.S. Arch Sex Behav. 2020;49(1):113–24. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Stoner MCD, Bhushan NL, Maragh-Bass AC, Mitchell JT, Riggins L, Walker M, et al. Using Participatory Methods to Assess PrEP Interest and Uptake Among Young People Living in the Southeastern US: A Mixed Methods Assessment. AIDS Behav. 2021. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Biello KB, Hosek S, Drucker MT, Belzer M, Mimiaga MJ, Marrow E, et al. Preferences for Injectable PrEP Among Young U.S. Cisgender Men and Transgender Women and Men Who Have Sex with Men. Arch Sex Behav. 2018;47(7):2101–7. [DOI] [PubMed] [Google Scholar]
- 9.Dévieux J, Malow R, Stein JA, Jennings TE, Lucenko BA, Averhart C, et al. Impulsivity and HIV risk among adjudicated alcohol- and other drug-abusing adolescent offenders. AIDS Educ Prev. 2002;14(5 Suppl B):24–35. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Kovensky R, Khurana A, Guyer S, Leve LD. Childhood Adversity, Impulsivity, and HIV Knowledge as Predictors of Sexual Risk Outcomes in At-Risk Female Youth. Adolescents. 2021;1(1):56–69. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Budhwani H, Naar S. Training Providers in Motivational Interviewing to Promote Behavior Change Pediatric Clinics of North America. In press. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Ogunbajo A, Storholm ED, Ober AJ, Bogart LM, Reback CJ, Flynn R, et al. Multilevel Barriers to HIV PrEP Uptake and Adherence Among Black and Hispanic/Latinx Transgender Women in Southern California. AIDS and Behavior. 2021;25(7):2301–15. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Pinto RM, Berringer KR, Melendez R, Mmeje O. Improving PrEP Implementation Through Multilevel Interventions: A Synthesis of the Literature. AIDS and Behavior. 2018;22(11):3681–91. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Turan JM, Elafros MA, Logie CH, Banik S, Turan B, Crockett KB, et al. Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Medicine. 2019;17(1):7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Budhwani H, Robles G, Starks TJ, MacDonell KK, Dinaj V, Naar S. Healthy Choices Intervention is Associated with Reductions in Stigma Among Youth Living with HIV in the United States (ATN 129). AIDS and Behavior. 2021;25(4):1094–102. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Quinn K, Bowleg L, Dickson-Gomez J. “The fear of being Black plus the fear of being gay”: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med. 2019;232:86–93. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Goffman E Selections from stigma. The disability studies reader. 1997;203:215. [Google Scholar]
- 18.Turan B, Budhwani H, Fazeli PL, Browning WR, Raper JL, Mugavero MJ, et al. How Does Stigma Affect People Living with HIV? The Mediating Roles of Internalized and Anticipated HIV Stigma in the Effects of Perceived Community Stigma on Health and Psychosocial Outcomes. AIDS and Behavior. 2017;21(1):283–91. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Budhwani H, De P. Perceived Stigma in Health Care Settings and the Physical and Mental Health of People of Color in the United States. Health Equity. 2019;3(1):73–80. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Crenshaw KW. On intersectionality: Essential writings: The New Press; 2017. [Google Scholar]
- 21.Logie CH, James L, Tharao W, Loutfy MR. HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Med. 2011;8(11):e1001124. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Earnshaw VA, Smith LR, Cunningham CO, Copenhaver MM. Intersectionality of internalized HIV stigma and internalized substance use stigma: Implications for depressive symptoms. J Health Psychol. 2015;20(8):1083–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Mulawa MI, Rosengren AL, Amico KR, Hightow-Weidman LB, Muessig KE. mHealth to reduce HIV-related stigma among youth in the United States: a scoping review. Mhealth. 2021;7:35-. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Wood S, Gross R, Shea JA, Bauermeister JA, Franklin J, Petsis D, et al. Barriers and Facilitators of PrEP Adherence for Young Men and Transgender Women of Color. AIDS Behav. 2019;23(10):2719–29. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Mulawa MI, Rosengren AL, Amico KR, Hightow-Weidman LB, Muessig KE. mHealth to reduce HIV-related stigma among youth in the United States: a scoping review. Mhealth. 2021;7:35. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Allan-Blitz LT, Mena LA, Mayer KH. The ongoing HIV epidemic in American youth: challenges and opportunities. Mhealth. 2021;7:33. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Rosengren AL, Lelutiu-Weinberger C, Woodhouse EW, Sandanapitchai P, Hightow-Weidman LB. A Scoping Review of HIV Pre-exposure Prophylaxis Stigma and Implications for Stigma-Reduction Interventions for Men and Transwomen Who Have Sex with Men. AIDS and Behavior. 2021;25(7):2054–70. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Golub SA. PrEP Stigma: Implicit and Explicit Drivers of Disparity. Current HIV/AIDS Reports. 2018;15(2):190–7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Tangmunkongvorakul A, Chariyalertsak S, Amico KR, Saokhieo P, Wannalak V, Sangangamsakun T, et al. Facilitators and barriers to medication adherence in an HIV prevention study among men who have sex with men in the iPrEx study in Chiang Mai, Thailand. AIDS Care. 2013;25(8):961–7. [DOI] [PubMed] [Google Scholar]
- 30.Budhwani H, Kiszla MB, Hightow-Weidman LB. Adapting Digital Health Interventions for the Evolving HIV Landscape: Examples to Support Prevention and Treatment Research. Current Opinion in HIV and AIDS. In press. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Klein H, Washington TA. The Pre-Exposure Prophylaxis (PrEP) Stigma Scale: Preliminary findings from a pilot study. Int Public Health J. 2019;11(2):185–95. [PMC free article] [PubMed] [Google Scholar]
- 32.Siegler AJ, Wiatrek S, Mouhanna F, Amico KR, Dominguez K, Jones J, et al. Validation of the HIV Pre-exposure Prophylaxis Stigma Scale: Performance of Likert and Semantic Differential Scale Versions. AIDS Behav. 2020;24(9):2637–49. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Algarin AB, Hee Shrader C, Hackworth BT, Varas-Diaz N, Fennie KP, Sheehan DM, et al. Development and Validation of the Community PrEP-Related Stigma Scale (Community-PSS). AIDS Educ Prev. 2021;33(2):120–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Calabrese SK, Dovidio JF, Tekeste M, Taggart T, Galvao RW, Safon CB, et al. HIV Pre-Exposure Prophylaxis Stigma as a Multidimensional Barrier to Uptake Among Women Who Attend Planned Parenthood. J Acquir Immune Defic Syndr. 2018;79(1):46–53. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.LeGrand S, Knudtson K, Benkeser D, Muessig K, McGee A, Sullivan PS, et al. Testing the Efficacy of a Social Networking Gamification App to Improve Pre-Exposure Prophylaxis Adherence (P3: Prepared, Protected, emPowered): Protocol for a Randomized Controlled Trial. JMIR Res Protoc. 2018;7(12):e10448–e. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Golub SA, Gamarel KE, Surace A. Demographic Differences in PrEP-Related Stereotypes: Implications for Implementation. AIDS Behav. 2017;21(5):1229–35. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Tabachnick BG, Fidell LS. Cleaning up your act: Screening data prior to analysis. Using multivariate statistics. 2001;5:61–116. [Google Scholar]
- 38.Golub SA, Gamarel KE. The Impact of Anticipated HIV Stigma on Delays in HIV Testing Behaviors: Findings from a Community-Based Sample of Men Who Have Sex with Men and Transgender Women in New York City. AIDS Patient Care and STDs. 2013;27(11):621–7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Napper LE, Fisher DG, Reynolds GL. Development of the perceived risk of HIV scale. AIDS Behav. 2012;16(4):1075–83. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Bouris A, Guilamo-Ramos V, Pickard A, Shiu C, Loosier PS, Dittus P, et al. A systematic review of parental influences on the health and well-being of lesbian, gay, and bisexual youth: time for a new public health research and practice agenda. J Prim Prev. 2010;31(5–6):273–309. [DOI] [PubMed] [Google Scholar]
- 41.Ryan C, Russell ST, Huebner D, Diaz R, Sanchez J. Family acceptance in adolescence and the health of LGBT young adults. J Child Adolesc Psychiatr Nurs. 2010;23(4):205–13. [DOI] [PubMed] [Google Scholar]
- 42.Thompson B, Daniel LG. Factor Analytic Evidence for the Construct Validity of Scores: A Historical Overview and Some Guidelines. Educational and Psychological Measurement. 1996;56(2):197–208. [Google Scholar]
- 43.Velicer WF, Eaton CA, Fava JL. Construct explication through factor or component analysis: A review and evaluation of alternative procedures for determining the number of factors or components. Problems and solutions in human assessment. 2000:41–71. [Google Scholar]
- 44.Kaiser HF. A note on Guttman’s lower bound for the number of common factors. British Journal of Statistical Psychology. 1961;14:1–2. [Google Scholar]
- 45.Kalichman SC, Shkembi B, Eaton LA. Finding the Right Angle: A Geometric Approach to Measuring Intersectional HIV Stigma. AIDS and Behavior. 2022;26(1):27–38. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data is available upon request through the University of North Carolina, Chapel Hill (UNC) BatLab via the study Principal Investigator, Dr. Lisa Hightow-Weidman.