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. Author manuscript; available in PMC: 2019 Aug 1.
Published in final edited form as: Stigma Health. 2018 May 14;4(2):204–212. doi: 10.1037/sah0000111

Perceptions Prediagnosis and Social Experiences Postdiagnosis Among a Sample of High-Risk Peruvian Men Who Have Sex With Men

Yamile Molina 1,1,2,✉, Kelika A Konda 2,3, Hugo Sanchez 3,4, Robert de la Grecca 4,5, Manuel Villarán 5,6, Jessica Rios 6,6, Carolyn E Bain 7,2, Anna Greer 8,7, Grace Wandell 9,7, Javier R Lama 10,6, Ann Duerr 11,2,7
PMCID: PMC6540975  NIHMSID: NIHMS890476  PMID: 31157298

Abstract

This pilot study examines associations of perceived stigma pre-diagnosis with experienced stigma and social support post-diagnosis with qualitative data; and quantifies the interplay between pre- and post-diagnosis social factors on depressive symptoms among a sample of newly diagnosed Peruvian men who have sex with men (n = 67 total). Qualitative findings highlight the differences between perceptions of stigma pre-disclosure and actual social experiences post-disclosure for most participants. Perceived stigma pre-diagnosis was significantly related to post-diagnosis social support, B = −0.35, p = 0.03, and marginally associated with experienced stigma, B = 0.29, p = 0.07. Pre-diagnosis perceived stigma was associated with greater depressive symptoms, but only among individuals who reported higher amounts of social support, B = 0.55, p = 0.01. Findings suggest the importance of addressing social perceptions in order to optimize the beneficial effects of social support resources among newly diagnosed individuals.

Keywords: HIV stigma, social support, MSM, moderation

INTRODUCTION

Social stigma and support are well-documented determinants of health and well-being of people living with HIV,(Bekele et al., 2013; Earnshaw, Lang, Lippitt, Jin, & Chaudoir, 2015; Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013; Kelly, Hartman, Graham, Kallen, & Giordano, 2014) including seropositive men who have sex with men (MSM).(Bogart, Landrine, Galvan, Wagner, & Klein, 2013; Smit et al., 2010; Wohl et al., 2013; Wohl et al., 2010) Experiences with HIV-specific prejudice and discrimination have been linked to worse mental health and treatment adherence among seropositive populations.(Bogart et al., 2013; Earnshaw et al., 2013; Wohl et al., 2013) Conversely, social support may be protective in terms of mental health and treatment adherence.(Bekele et al., 2013; Earnshaw et al., 2015; Kelly et al., 2014; Williams, Wyatt, Resell, Peterson, & Asuan-O’Brien, 2004) Perceptions of social stigma and support that people living with HIV face have also been tied to the well-being and testing behaviors of populations at high risk for HIV.(Earnshaw & Chaudoir, 2009; Mahajan et al., 2008; Wolitski et al., 2003) Nonetheless, previous research, largely cross-sectional, has not compared perceptions of social stigma pre-diagnosis and actual social experiences post-diagnosis, including if individuals cope by accessing social support, and their experiences with social stigma. Further, little is known about the intersection of perceptions pre-diagnosis and actual experiences post-diagnosis on outcomes, including mental health. These social factors may be particularly influential for the health and well-being of populations with cultural emphases placed on maintaining strong social ties and harmony, such as those within Latin America. This study addresses these gaps in the literature among a sample of high-risk MSM living in Lima, Peru.

A large body of work focused on populations at high risk of or living with HIV has characterized and addressed stigma as “an enduring condition, status or attribute that is negatively valued by a society and whose possession consequently discredits and disadvantages an individual.”(Herek, Capitanio, & Widaman, 2002) Stigma is a multifaceted concept, including two experienced and perceived dimensions.(Parker & Aggleton, 2003) Experienced stigma concerns discrimination and prejudice individuals face. Perceived stigma concerns individuals’ anticipations and beliefs about society’s negative views about a group. Whereas experienced stigma negatively impacts individuals within the stigmatized group, a unique component of perceived stigma is its additional adverse consequences for individuals who are at risk for becoming part of the stigmatized group. For example, high-risk MSMs’ perceptions of HIV/AIDS stigma has been tied to high levels of fear concerning a personal diagnosis and underutilization of HIV testing.(Volk et al., 2015)

An important gap in the literature concerns how perceived stigma pre-diagnosis may affect individuals after they receive a positive HIV diagnosis. Despite the wealth of HIV/AIDS stigma literature,(Earnshaw & Chaudoir, 2009; Earnshaw et al., 2015; Earnshaw et al., 2013; Mahajan et al., 2008; Wohl et al., 2013) no studies have examined the effects of how perceptions of HIV stigma before one is diagnosed (pre-diagnosis) translate into how people navigate social experiences after a positive HIV diagnosis, including how much they can cope with their positive diagnosis through social support and their actual experiences with stigma as a person who is seropositive. To note, longitudinal studies have indicated that perceived stigma is associated with experienced stigma as well as predicts lower disclosure and worse mental health outcomes among people living with HIV. (Greef et al., 2010; Miller et al., 2016) Miller and colleagues (2016) have conceptualized stigma as a dynamic, cyclic process, wherein experienced stigma may lead to worse psychological outcomes, which may result in greater perceived stigma. Little has been theorized with regard to perceptions of HIV stigma prior to a diagnosis. Based on previous literature, perceived stigma pre-diagnosis may result in lower disclosure after a positive diagnosis and thus reduced exposure to stigmatizing experiences.(Smith, Rossetto, & Peterson, 2008) Alternatively, higher perceived stigma pre-diagnosis may result in greater vigilance and awareness of stigmatizing experiences.(Miller et al., 2016) On the other hand, inability to disclose one’s positive serostatus because of anticipations about stigma may also result in a lower ability to access social support to cope with a positive diagnosis.(Breet, Kagee, & Seedat, 2014) Thus, it may be that perceived HIV stigma pre-diagnosis may be associated with lower disclosure, which in turn would be associated with lower social support coping. Perceived HIV stigma pre-diagnosis may further be associated with more or fewer experiences with stigma, depending on perceived HIV stigma post-diagnosis.

Another gap in the literature concerns the interplay between individuals’ social perceptions pre-diagnosis and their social experiences of wellbeing post-diagnosis. Indeed, the causal effects of perceived stigma pre-diagnosis for mental health and other outcomes (e.g., linkage to and retention in care) may depend on the actual social experiences individuals have after their positive diagnosis. For example, individuals with high amounts of perceived stigma pre-diagnosis and who experience high levels of stigma post-diagnosis may result in worse mental health, given their anticipations have manifested in real-life settings. The relationship between anticipated stigma pre-diagnosis and social support post-diagnosis may be more complex. On the one hand, some work has suggested that social support post-diagnosis may buffer the experiences of stigma post-diagnosis (Earnshaw et al., 2015), although other work has not found social support to be such a moderator.(Breet et al., 2014) On the other hand, individuals with greater anticipations of stigma pre-diagnosis may not be able to benefit from social support due to heightened fears that family and friends will reject them while ‘supporting’ them. Important questions remain about stigma and social experiences pre- and post-diagnosis. First, individuals who have high levels of perceived stigma pre-diagnosis may also experience greater distress due to conflicting needs, wherein they may want social support post-diagnosis, but may be simultaneously fearful that social interactions will result in rejection. Such cognitive conflict may result in heightened distress. Second, individuals who have high levels of perceived stigma pre-diagnosis may experience greater cognitive burden during social interactions than others due to anticipation of what might happen as well as how to address stigma if it happens. Thus, those relying on social support to cope with their diagnosis may experience worse mental health, if they exhibit high amounts of cognitive processing with regard to anticipation and planning for stigma interactions relative to those who do not cope via social interactions and those who do not have high levels of anticipated stigma. Anticipated stigma may further have adverse effects on those proactively engaging in social interactions if it influences how individuals interpret these situations, including attentional bias to threat, as well as how they cope with these thoughts (e.g., perceived ability to deescalate one’s self; Strod, Stewart, Mullens, & Deb, 2015). Little research to date has collected information about stigma and social experiences pre- and post-HIV diagnosis to test these different scenarios and examine their interdependent effects on health and well-being.

We address these gaps in the literature by focusing on the experiences of Peruvian MSM at high risk for HIV. In Peru, MSM remain a highly stigmatized group, wherein the expected face of HIV is that of a gay man.(Caceres & Mendoza, 2009) The layered stigma that conflates HIV and minority sexual identity is normative, most likely due to Peru having an HIV epidemic highly concentrated among MSM. HIV prevalence is 10–20% within this group compared to 0.3% in the general population.(Chow et al., 2016; Carcamo et al., 2012; Clark et al., 2014) Such interconnections of HIV stigma with sexual and gender identity are of particular concern, given the strong oppression of and violence targeting sexual and gender minorities in Peru.(Bracamonte & Alvarez, 2005; Salazar & Villayzán, 2010) Seronegative MSM may have negative experiences due to presumptions about their serostatus and exhibit high levels of perceived HIV stigma. Elevated perceived HIV stigma has important implications for social situations and well-being, if they seroconvert. Indeed, recent research concerning HIV control programs have found that high levels of HIV stigma and self-identification as MSM were associated with poor treatment adherence. (Zafra & Hanae, 2015). This research may speak to the multiple oppressions newly diagnosed Peruvian MSM may face in terms of their serostatus and sexual identity. Further, newly diagnosed Peruvian MSM with high levels of perceived HIV stigma before their diagnosis may be a particularly vulnerable group in terms of how they handle social situations. Their health and well-being may also depend on the interplay of MSM’s perceptions of stigma pre-diagnosis and actual experiences post-diagnosis with social support versus stigma. These social perceptions pre-diagnosis and experiences post-diagnosis may be particularly powerful for well-being among this group, given the cultural emphases Latino populations place on strong social ties and maintaining positive relationships and harmony.(Marin, 1989) For example, sociocultural norms and practices can be demonstrated in HIV policy within Peru, wherein enrollment in national HIV control programs require demonstration that newly diagnosed patients have social support resources.(MINSA, 2006, 2012) Such programs reflect research suggesting that even small increases among individuals with low HIV stigma are significantly associated with treatment adherence. (Valenzuela et al., 2015).

The current, two-part study was a secondary analysis of a larger trial to reduce HIV transmission among Peruvian MSM. First, we analyzed qualitative data concerning perceived stigma among MSM living with HIV who had and had not chosen to disclose their positive serostatus as well as compared perceived stigma with their subsequent social experiences (supportive versus stigmatizing) among those who had disclosed their positive status. Second, we used quantitative data to examine the relationship of perceived HIV/AIDS stigma prior to a positive diagnosis with HIV-specific social support and stigma six months following a positive diagnosis. We hypothesized that individuals with high perceived HIV/AIDS stigma before a positive diagnosis would have lower rates of utilizing their social network to cope with their diagnosis and would also experience lower rates of stigma. We quantified the potential moderating effects of experienced HIV/AIDS stigma and social support in the relationship between perceived stigma prior to a positive HIV/AIDS diagnosis and depressive symptoms six months after a positive HIV/AIDS diagnosis. We hypothesized that, for individuals with greater exposure to social experiences as a person living with HIV, perceived stigma would be more strongly associated with depressive symptoms.

METHODS

Setting

The current study was a part of a larger randomized controlled trial set in Lima, Peru with a Seek-Treat-Test-Retain strategy to expand HIV testing, promote detection of acute and recent HIV infections, and reduce transmission through HAART therapy of newly diagnosed MSM and TW living with HIV. Patient populations of interest included high-risk MSM and TW. The project was a result of collaboration between US-based and Peruvian research institutions. For the current study, we focused on the experiences of self-identified MSM.

Qualitative

Qualitative data were collected as part of formative research to obtain in-depth information on individual decision-making processes and inform the design of the larger project and its primary objective of reducing HIV transmission through early detection and treatment of individuals with acute or recent HIV infections. Trained research staff recruited participants at community venues with flyers containing a brief study description and contact information. Interested individuals then called and were screened by study staff based on the following inclusion criteria: 1) age of at least 18 years or older; 2) ability to understand Spanish; and 3) willingness and ability to provide informed consent. After obtaining informed consent, semi-structured focus groups and in-depth interviews were conducted by staff trained in qualitative data collection techniques. Interviews and focus groups lasted 60–90 minutes and took place within one of the study sites. Participants were given the equivalent of $20 as compensation.

For the current study, we analyzed data from two focus groups and ten one-on-one interviews with self-identified MSM living with HIV concerning general experiences of living with HIV, including anticipations and experiences with interpersonal interactions after a positive HIV diagnosis. To note, focus groups included individuals who varied in the number of years they had lived with HIV, whereas one-on-one interviews were conducted with MSM who had received a positive HIV diagnosis within the past year. Sample questions included “After receiving news of your result, what happened to you?” and “What was it like to tell them [about your HIV diagnosis]?” Participants in the qualitative sample also answered standard questions concerning their age, amount of educational attainment, and years living with HIV.

Quantitative

Qualitative data in this current study resulted in quantitative data on stigma being collected pre- and post-diagnosis as part of the larger trial. This trial was divided into three steps or phases. During Step 1 (“Screening”; pre-diagnosis), participants were recruited from community venues based on the following criteria: 1) male sex at birth; 2) age of 18 years and older; 3) lack of awareness about HIV status or negative result on previous HIV test; 4) evidence of high risk for acquiring HIV-1 infection (e.g., inconsistent condom use, self-identification as sex worker); and 5) ambulatory functional performance (i.e., ≥80 on the Kanofsky scale). During Step 1, participants underwent HIV testing and completed a baseline questionnaire. Participants with a negative HIV test result were recruited to participate for Step 2 (“Testing”), continuous testing every 1–2 months. Participants who experienced an HIV positive diagnosis during Step 1 or Step 2 were recruited to participate in Step 3 (“Treatment”; post-diagnosis), if they met the following eligibility criteria: 1) confirmed acute (HIV antibody negative, HIV-1 RNA test positive) or recent HIV infection (HIV antibody positive, HIV negative step in previous 3 months); 2) no prior history of ART use; and 3) normal hematological, renal, and liver function, as these were criteria for the underlying clinical trial. Participants who consented to enroll in Step 3 (post-diagnosis) completed questionnaires at intermittent periods of the year (e.g., coping and mental health every 3 months; stigma every 6 months) and received either immediate or deferred treatment with a first-line ART regimen. Participants diagnosed with HIV who participated in Step 3 received 185.50 $USD across a year’s worth of visits as compensation.

For the current study, we focused on questionnaire data from participants with: 1) self-identification as MSM; and data on 2) perceived stigma at Step 1 (pre-diagnosis); and 3) experienced stigma, social support coping, and depressive symptoms at six months after their positive diagnosis.

Measures

Socio-demographic variables

Participants completed standard questions concerning education and income. Age at enrollment in Step 1 (pre-diagnosis) was also recorded.

HIV/AIDS stigma

To measure perceived and experienced stigma, two subscales were used from Molina and Ramirez-Valles’ HIV/AIDS Stigma Scale, which was developed for and validated in English and Spanish among Latino GBT.(Molina & Ramirez-Valles, 2013; Ramirez-Valles, Molina, & Dirkes, 2013) Scoring involves summing all items, such that greater scores indicates greater stigma. Cronbach’s alphas for the current sample for perceived and experienced HIV stigma were respectively 0.97 and 0.94. Perceived stigma. Perceived stigma was administered to the quantitative sample during Step 1 (pre-diagnosis). This 15 item subscale had items such as “People believe you get HIV/AIDS because you want to” with a 4-point Likert scale (1 = Strongly Disagree to 4 = Strongly Agree). Experienced stigma. Six months after enrollment in Step 3 (post-diagnosis), participants completed the General Enacted HIV/AIDS stigma subscale. This 13-item instrument has items such as “Some friends have grown more distant from me after they learned I have HIV/AIDS” with a 4-point Likert scale (1 = Strongly Disagree to 4 = Strongly Agree).

Social support coping

Six months after enrollment in Step 3 (post-diagnosis), participants completed the emotional support subscale of the Brief COPE, whose reliability and validity has been established in English and Spanish.(Carver, 1997; Perczek, Carver, Price, & Pozo-Kaderman, 2000) Participants read a brief description indicating they should rate the following items in response to how they have been coping with their HIV diagnosis: “I’ve been getting emotional support from others” and “I’ve been getting comfort and understanding from someone.” Participants answered on a 4-point Likert scale (1 = I haven’t been doing this at all to 4 = I’ve been doing this a lot). Items were summed to create summary scores, such that greater scores indicated higher stigma. Cronbach’s alpha for the current sample for social support coping was 0.83.

Depressive symptoms

Six months after enrollment in Step 3 (post diagnosis), participants completed the 10-item Center for Epidemiologic Studies Depression Scale (CES-D 10)(Andresen, Malmgren, Carter, & Patrick, 1993), which has been validated as an assessment of depressive symptoms in Spanish and in Peru.(Ruiz-Grosso et al., 2015) Individuals were asked to report how much they agreed with statements across the past 30 days. Two sample items are “I felt depressed” and “I felt that everything I did was an effort”. The CES-D 10 tool was scored with a 4-point Likert scale (0= “Rarely or none of the time” to 3= “Most of the time”). Given the small sample size, continuous summary scores were used, but the cut-off for a clinical diagnosis of major depression(Rivera Jr, 2009) is reported when describing the sample. Cronbach’s alpha for the current sample for depressive symptoms was 0.70.

Analytic Plan

Qualitative

Qualitative analysis was used to address the first objective of the study, which was to characterize perceived stigma in the context of disclosure and to compare anticipations with stigma with experiences with social support and stigma. First, we transcribed all qualitative interviews and focus groups verbatim, checked for accuracy, and uploaded into ATLAS.ti version 7 (Berlin, Germany). Three authors independently read each transcript (YM, AG, GW). During group meetings, these authors used an analytic approach that combined inductive and deductive analysis, in which constructs of interest were explored (i.e., perceived stigma, experienced stigma and support post-diagnosis) and simultaneously new themes were identified from the interview data.(Bernard & Ryan, 2009) First, the team generated a preliminary codebook to capture the essence of each idea and provide an example quote to maintain inter-coder reliability. As new themes emerged, the team returned to coded transcripts to apply the new codebook across all focus groups and interviews. Throughout this process, authors compared notes, reviewed the data, and clustered similar ideas together into categories representative of broader themes.

Quantitative

Quantitative analysis was used address the second and third objectives of the study. We first conducted Pearson’s correlations and analyses of variance to examine the relationship of age, education, and income to study variables of interest (perceived stigma, experienced stigma, social support coping, depressive symptoms). To quantify the relationships of perceived stigma prior to a diagnosis to experienced stigma and social support after a diagnosis, we conducted multivariable linear regression models with and without socio-demographic (age, education, income) and psychosocial covariates (social support coping and depressive symptoms at diagnosis). To examine the moderating roles of social support coping and experienced stigma, two multivariable linear regression models were conducted. Each model included the predictor (perceived stigma), one of the moderating variables (either social support coping or experienced stigma) and one interaction term (either social support coping*perceived stigma or experienced stigma*perceived stigma). For significant interaction terms, participants were dichotomized as ‘low’ or ‘high’, based on the median value of moderating variables. Multivariable linear regressions models were then conducted to examine the relationship of perceived stigma and depressive symptoms across the two levels of the moderator. For all regression models, standardized coefficients are reported and an alpha of 0.05 was used. All analyses were conducted in SPSS. We conducted post-hoc power analyses, using G*Power 3.1.9.2. We would only be able to detect large effects (f2 = 0.45), when assuming an alpha of .05, power of .80, a sample size of 42 individuals, and a regression model with 2 main effects, 1 interaction term, and 5 covariates.

RESULTS

Table 1 provides socio-demographic and clinical information for participants involved in qualitative and quantitative data collection. The average for participants from the quantitative sample and qualitative sample were respectively were 27.7 years old (SD = 7.0) and 33.7 years old (SD = 9.0). Approximately 32% of individuals in the qualitative sample and 27% of individuals in the quantitative sample had completed high school or less. Among the qualitative sample, the average number of years living with HIV was 4.7 (SD = 5.1). Among the quantitative sample, approximately 59% indicated they had a monthly income of less than $253 USD (average income). Table 1 also provides univariate information for perceived stigma, experienced stigma, social support coping, and depressive symptoms for participants in the quantitative sample. Age, education, and income were not associated with these variables in this sample (ps= 0.17–0.99).

Table 1.

Characteristics of study samples.

Qualitative Sample (n= 22) Quantitative Sample (n = 45)
Range M (SD) Range M (SD)
Age 22.00–54.00 33.66 (8.99) 20.00–53.00 27.73 (6.95)
Years living with HIV 0.00–15.00 4.72 (5.08) 0.503 0.501
Perceived HIV stigma2 -- -- 15.00–60.00 30.65 (14.35)
Experienced HIV stigma3 -- -- 13.0–44.00 21.00 (7.32)
Social support coping4 -- -- 2.00–8.00 5.18 (2.41)
n (%) n (%)
High school or less5 -- 7 (32) -- 12 (27)
<Average household income ($253)5,6 -- -- -- 26 (59)
Clinical depression5,7 -- -- -- 19 (42)
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1

At the point of data collection, all participants in the quantitative sample had received a positive HIV diagnosis six months prior.

2

Perceived HIV stigma was measured using the Perceived stigma subscale of Molina and Ramirez-Valles’ HIV/AIDS Stigma Scale. The observed and possible range are 15–60.

3

Experienced HIV stigma was measured using the General Enacted HIV/AIDS Stigma subscale of Molina and Ramirez-Valles’ HIV/AIDS Stigma Scale. The possible range is 13–52, which differs from the observed range.

4

Social support coping was measured by the emotional support subscale of Carver’s Brief COPE instrument. The observed and possible range is 2–8.

5

Continuous variables are dichotomized to facilitate readability.

6

Monthly income.

7

Depressive symptoms were measured by the Center for Epidemiologic Studies Short Depression Scale (CESD-10). The possible range for the instrument is 0–30 and the cut-off for a diagnosis of clinical depression is a score of 10 or greater.

Qualitative findings

Perceived stigma and decisions to not disclose

Perceived stigma and decisions to not disclose appeared to be strongly associated, as exemplified by this respondent, “I did not tell anyone for fear that it would get out throughout my community.” Participants most frequently indicated they would experience stigma from their intimate partners. One respondent noted, when discussing why he had not disclosed his recent status to past sexual partners, “No, I haven’t told them…I fear all of a sudden, they will reject me or, more than anything, discriminate against me.” When describing perceived negative experiences from broader society, participants often declared their concern about others using their serostatus to harm them in terms of their jobs or in general, as clarified by this participant, “I chose to keep it to myself…I only let [people] know…who will not use my diagnosis to hurt me.” With regard to family and friends, participants most often emphasized situations wherein their serostatus would be a burden to family and friends. This was often discussed with regard to mothers, as exemplified by this respondent, “I will not be able to tell them, because my mom is too weak to be able to receive that kind of news. She loves too much and I am sure she would feel very bad.”

Perceived stigma and experiences with support and stigma

Participants who had discussed their serostatus with others often anticipated negative reactions, including stigma. In contrast to their anticipations, however, people who spoke with others about their status often experienced support and not stigma, as noted by this respondent:

Above all [I felt] shame…I didn’t have a good relationship with him [intimate partner]…I have told him…it had a lot of influence, because now he tells me things that before he didn’t tell me: ‘I care for you’,’I love you’, [and] ‘I am always going to be with you. He has clung to me a little more.

Another participant agreed, “Actually, in the past, I have not had many problems…I have not felt much rejection – just the opposite.” Others mentioned the alarm they anticipated, but also subsequent support, as this respondent exemplifies, “I told my mom…it bothered her a little, but she told me not to worry, that she would actualize the possibility of supporting me emotionally…that is what helped me to be able to strengthen myself.” Notably, however, most individuals had not widely disclosed their positive HIV status. Indeed, the majority had disclosed to only their partners or only their female relatives.

Relatively few individuals experienced stigma in this sample, but those who had often described situations that were similar to anticipations described above. For example, one participant described a particularly emotionally tense experience when first disclosing his serostatus to his intimate partner, “When I told him, he was scared and started screaming at me…and it [the relationship] ended there.” Another participant also indicated,

My partner, he wanted to tell me something bad with respect to this disease and it made me feel bad and I said, ‘Why did I tell him?’ It would have been better if I had kept it to myself.

Others, such as this respondent, noted experiences with broader society, “People imagine the worst and already are saying things. The worst thing they say is ‘they [HIV positive people] are corrupt people.’”

Quantitative findings

Next, we conducted linear regressions to assess relationships of perceived HIV stigma before diagnosis to experienced HIV stigma and social support coping six months after an HIV positive diagnosis. Perceived HIV stigma was associated with reduced social support coping B = −0.38, p = .01, after adjusting for psychosocial and socio-demographic covariates. Overall, individuals who reported higher levels of perceived stigma before their positive HIV diagnosis relied less on social support to cope with their positive HIV serostatus. Also, there was a marginal association between perceived and experienced HIV stigma, B = 0.29, p = 0.07.

Finally, to examine the moderating effects of social support coping and experienced HIV stigma on the relationship between perceived HIV stigma and depressive symptoms, we conducted two multivariable linear regression models (Table 2). The interaction between perceived stigma and social support coping was significant after adjusting for covariates and main effects, indicating that the relationship between perceived stigma and depressive symptoms may vary across different amounts of social support coping. Subsequently, we classified participants as having low levels of social support coping if their scores were lower than the sample median for social support coping and high levels of social support coping if their scores were equivalent or greater than the median. Initial separate regression models across social support coping levels revealed perceived stigma to be associated with greater depressive symptoms among those with high social support coping, but not low social support coping, after adjusting for psychosocial and socio-demographic covariates. Such findings indicate that, for individuals who rely more on social support to cope with their positive HIV diagnosis, high amounts of perceived stigma are related to greater depressive symptoms. The second set of models revealed that the interaction between perceived and experienced stigma was not significant.

Table 2.

Multivariable linear regression models testing the moderating roles of experienced HIV stigma and social support coping post-diagnosis on relationship between perceived HIV stigma pre-diagnosis and depressive symptoms post-diagnosis.

n Crude Adjusted n Crude Adjusted
B p B p B p B p
Perceived HIV stigma × Social support coping 42 1.18 0.008 1.26 0.01 High social support coping 22 0.57 0.004 0.41 0.02
Low social support coping 19 −0.29 0.22 -- --
Perceived HIV stigma × Experienced HIV stigma 42 .25 0.73 -- -- High experienced stigma -- -- -- -- --
Low experienced stigma -- -- -- -- --
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Notes. Multivariable linear regression models were first conducted to examine the interaction effect of perceived HIV stigma pre-diagnosis with social experiences post-diagnosis (social support coping, experienced HIV stigma), after adjusting for psychosocial (social support coping and depressive symptoms at baseline) and socio-demographic covariates (age, education, income). If interaction terms were significant in crude and adjusted models, the relationship of perceived HIV stigma and depressive symptoms was examined across two levels of the moderating social experience variable (high vs. low, based on median value of social support coping or experienced HIV stigma).

DISCUSSION

The current study contributes important preliminary findings to the stigma and health literature. We first offer results concerning the effects of HIV stigma pre-diagnosis on decisions to disclose and actual social experiences among seropositive MSM. Second, we provide preliminary evidence concerning the interactive effects of perceptions pre-diagnosis and experiences post-diagnosis on mental health. Such work has significant implications for future research and practices, especially concerning stigma screening and reduction.

Our study provides important information about perceived HIV stigma, which is a less studied dimension of stigma relative to experienced and internalized stigma. Interestingly, qualitative and quantitative results suggested anticipation of social stigma to be more prevalent than actual experiences with stigma. This may be in part due to the concealability of one’s positive serostatus and the effects of perceived stigma on decisions to disclose. Interestingly, perceived stigma involved anticipations of discrimination and prejudice, but also included fear about overburdening one’s social and especially familial network. These findings align with other work concerning HIV stigma among Latino populations and likely reflect Latino sociocultural norms and values concerning protecting and placing family and friends’ needs above one’s own needs.(Molina & Ramirez-Valles, 2013; Ramirez-Valles et al., 2013) Relative to anticipation of stigma, few individuals experienced discrimination and prejudice because of their serostatus; nonetheless, these individuals did report situations similar to those anticipated. Further, participants who disclosed to their network did experience immediate alarm from family and friends; nonetheless, this concern was temporal. Non-disclosure may be protective from experiencing stigma and burdening one’s social network; however, heightened perceived stigma also can reduce one’s access social support to cope with one’s diagnosis, as quantitatively found in this study.

The implications of this limited access are complex. On the one hand, qualitative findings indicated benefits to disclosing one’s serostatus, wherein the majority of participants experienced important emotional support during a stressful period. Nonetheless, the majority of participants reported high perceived HIV stigma before their diagnosis, which may influence why most accessed support from a select few within their social network post-diagnosis, despite their positive experiences. Perceived HIV stigma pre-diagnosis was further associated with depressive symptoms post-diagnosis, however only among participants within the quantitative sample who used more social support to cope with their HIV status. Individuals who more often cope through social support may be more vulnerable to negative social perceptions and experiences than those who use alternative methods of coping (e.g., positive reframing, acceptance), in part because of competing needs – i.e., greater reliance on social resources versus need to avoid threatening social stimuli. Another explanation may concern cognitive burden and metabeliefs, wherein individuals with high levels of anticipated stigma may be particularly burdened by adverse thoughts during social interactions and therefore not able to perceive and benefit from the positive aspects of the exchange. Notably, this work in contrast to some other research focused on post-diagnosis stigma, coping, and mental health (Breet et al., 2014; Earnshaw et al., 2015). Such findings may highlight the differential effects of social support across different dimensions and time points of stigma (pre versus post) as well as potentially reflect more research to arrive at a consensus of this complex picture. Nonetheless, our findings suggest that potentially addressing social perceptions about stigma prior to actual social experiences following a diagnosis may be beneficial.

Experienced stigma post-diagnosis did not augment the relationship between perceived stigma pre-diagnosis and depressive symptoms, contrary to our hypothesis. This may be in part due to the relatively low amounts of stigma experienced within quantitative sample. The lower amounts of experienced stigma may be due to several factors, including decisions to not disclose one’s serostatus and the limited amount of time since a positive diagnosis for the quantitative sample.

Limitations

The current study had several limitations. First, our study did not use population-based recruitment strategies and was focused on a subset of individuals at risk for HIV (i.e., MSM). Our findings may thus not be generalizable to all MSM as well as other populations who disproportionately experience the burden of HIV. Second, our sample size was small and thus underpowered for quantitative analysis, especially for assessment of moderation. The interaction of perceived and experienced HIV stigma may not have emerged, because of a lack of statistical power. Future studies with large sample sizes that are designed to examine these interactions are warranted. Relatedly, we included multiple socio-demographic and psychosocial covariates; nonetheless, we did not measure experienced stigma prior to six months of the parent study and were unable to include it models. In line with this limitation, we did not measure perceived stigma post-diagnosis and thus could not examine how changes in perceived stigma may be related to experienced HIV stigma, social support coping or depressive symptoms. This is a limitation, given previous literature has connected perceived stigma to experienced HIV stigma and mental health consequences across time.(Greef et al., 2010; Miller et al., 2016; Molina & Ramirez-Valles, 2013) It is further a limitation, given our intriguing, albeit marginal findings, concerning perceived stigma pre-diagnosis and experienced HIV stigma six months post-diagnosis. It may be that perceived HIV stigma post-diagnosis underlies this marginally significant association.(Miller et al., 2016) Future studies are warranted to examine the dynamics of different elements of stigma further pre- and post-diagnosis. The ability to compare differences between participants within the qualitative and quantitative sample was limited, as the some variables were not collected across these different phases. Relatedly, our qualitative sample had been living with HIV for longer than the quantitative sample, which influenced our ability to triangulate findings across different data sets. In addition to differences across data sets, the way qualitative data were collected restricted our ability to analyze differences by time since diagnosis. Future comprehensive qualitative data are warranted via individual interviews or focus groups stratified by time since diagnosis in order to confirm our quantitative patterns as well as to provide a more nuanced understanding of the dynamic relationships between different aspects of HIV stigma, social support coping, and depressive symptoms. This was in part due to the qualitative formative data informing subsequent quantitative data in the larger quantitative trial. Future, well-designed mixed method research is warranted to confirm our qualitative and quantitative findings.

Future Venues

Nonetheless, our study provides important venues for future research and practice. Future studies should confirm our quantitative findings with larger, representative samples of seropositive MSM who have been living with HIV for longer periods of time. Qualitative studies are also needed to explore further the interplay of perceptions pre-diagnosis and social experiences post-diagnosis for health as well as associated mechanisms. Studies are needed that can quantify participants’ social needs in order to understand more fully the complex interplay between perceived HIV stigma pre-diagnosis and social support coping post-diagnosis. Future research is warranted to explore these patterns among other high-risk populations at high risk for HIV, especially those living in cultures that emphasize strong social ties. With regard to practice, our findings suggest that screening for high levels of perceived HIV stigma may be useful for targeted counseling when providing individuals with positive diagnoses. Our work also suggests that while requiring social support may be useful in national HIV control and care programs, it may not mitigate the effects of perceived stigma for health and well-being. Nonetheless, our work suggests that assessment of social resources may be useful with regard to identifying and caring for potentially vulnerable patients.

Contributor Information

Yamile Molina, Mailing address: University of Illinois at Chicago, 549 SPHPI, MC923, 1601 West Taylor Street, Chicago, IL 60612, USA, Phone: +01-312-355-2679.

Kelika A. Konda, Mailing address: C/Diez Canseco #333, Oficina 1, Miraflores, 18, Lima, Peru, Phone: +511-446-1845.

Hugo Sanchez, Mailing address: Jr Jaén, Barranco, 15063, Lima, Peru, Phone: +511-247-2755.

Robert de la Grecca, Mailing address: 6197000 Anexo 4407, Ca José Chocano 199, Bellavista, Callao-Perú, Phone: + 51-987-395-817.

Manuel Villarán, Mailing address: Av Almirante Miguel Grau 1010, Branco, 4, Lima, Peru, Phone: +511-206-7800.

Jessica Rios, Mailing address: Av Almirante Miguel Grau 1010, Branco, 4, Lima, Peru, Phone: +511-206-7800.

Carolyn E. Bain, Mailing address: 1100 Fairview Ave N, mail Stop E2-112, Seattle, WA 98109, USA, Phone: +01- 206-667-7858.

Anna Greer, Mailing address: 1100 Fairview Ave N, mail Stop E2-112, Seattle, WA 98109, USA, Phone: +01- 206-667-7858.

Grace Wandell, Mailing address: 1100 Fairview Ave N, mail Stop E2-112, Seattle, WA 98109, USA, Phone: +01- 206-667-7858.

Javier R. Lama, Mailing address: Av Almirante Miguel Grau 1010, Branco, 4, Lima, Peru, Phone: +511-206-7800.

Ann Duerr, Mailing address: 1100 Fairview Ave N, mail Stop E2-112, Seattle, WA 98109, USA, Phone: +01-206-667-7938.

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