Stigma, Activism, and Well-Being among People Living with HIV

Abstract

Evidence demonstrates that HIV stigma undermines the psychological and physical health of people living with HIV (PLWH). Yet, PLWH describe engaging in HIV activism to challenge stigma, and research suggests that individuals may benefit from activism. We examine associations between experiences of HIV stigma and HIV activism, and test whether HIV activists benefit from greater well-being than non-activists. Participants include 93 PLWH recruited from drop-in centers, housing programs, and other organizations providing services to PLWH in the Northeastern U.S. between 2012 and 2013 (mean age=50 years; 56% Black, 20% White, 18% Other; 61% non-Latino(a), 39% Latino(a); 59% male, 38% female, 3% transgender; 82% heterosexual, 15% sexual minority). Participants completed a cross-sectional written survey. Results of regression analyses suggest that PLWH who experienced greater enacted stigma engaged in greater HIV activism. Anticipated, internalized, and perceived public stigma, however, were unrelated to HIV activism. Moreover, results of a multivariate analysis of variance suggest that HIV activists reported greater social network integration, greater social well-being, greater engagement in active coping with discrimination, and greater meaning in life than non-activists. Yet, HIV activists also reported somewhat greater depressive symptoms than non-activists, suggesting that the association between HIV activism and well-being is complex. By differentiating between HIV stigma mechanisms, the current study provides a more nuanced understanding of which experiences of HIV stigma may be associated with HIV activism. It further suggests that engagement in activism may offer benefits to PLWH, while raising the possibility that activists could experience greater depressive symptoms than non-activists. Given the preliminary nature of this study, future research should continue to examine these complex associations between HIV stigma, activism, and well-being among PLWH. As this work continues, PLWH, as well as interventionists and clinicians invested in improving well-being among PLWH, should carefully weigh the benefits and potential costs of activism.

Introduction

HIV continues to be stigmatized, or socially devalued and discredited (Goffman, 1963), in the U.S. and worldwide. Evidence suggests that this societal stigma undermines the well-being of people living with HIV (PLWH), including psychological (e.g., depressive symptoms, stress) and physical (e.g., lower CD4 count, greater HIV symptoms) health (Logie & Gadalla, 2009). Yet, individuals’ responses to stigma may determine whether they are negatively impacted by stigma. Research and theory suggests that activism is one response (Siegel, Lune, & Meyer, 1998), and that such empowered responses to stigma may have positive implications for individuals (Shih, 2004).

PLWH describe engaging in activism as a response to societal stigma (Siegel et al., 1998; Stanley, 1999), which enables them to challenge and resist societal stigma (including advocating for policy change), and to empower themselves and others (Brashers, Haas, Neidig, & Rintamaki, 2002; Deacon, 2006; Siegel et al., 1998; Stanley, 1999). PLWH may be motivated to engage in activism following personal experiences of stigma, including enacted stigma (past or present experiences of discrimination; e.g., being fired or not promoted), anticipated stigma (future expectations of discrimination; e.g., receiving poor healthcare), and internalized stigma (devaluation of the self; Earnshaw & Chaudoir, 2009). PLWH may also perceive public stigma, or recognize that societal stigma exists, without personally experiencing stigma (Bos, Pryor, Reeder, & Stutterheim, 2013). Enacted, anticipated and perceived public stigma may motivate engagement in HIV activism to challenge stigma and/or empower PLWH. Anticipated stigma may also be a barrier if individuals fear HIV activism will lead to discrimination (Cain et al., 2014), and internalized stigma may act as a barrier if individuals feel stigma is justified

Activism may also contribute to activists’ well-being. PLWH describe benefits of activism, including connection to supportive social networks, and a sense of purpose and power (Siegel et al., 1998; Stanley, 1999). Activist PLWH employ more problem-focused coping and have greater HIV social network integration (i.e., greater connection to others living with HIV; Brashers et al., 2002). Other types of activists also experience greater well-being, including greater meaning in life, social integration, and positive affect (Klar & Kasser, 2009). Although most research suggests that activists enjoy greater psychological well-being, some work finds that activism is not statistically associated with depressive symptoms (Gilster, 2012).

In the current investigation, we differentiate between enacted, anticipated, internalized, and perceived public stigma to understand which experiences of stigma are associated with HIV activism. We control for collectivist identification with PLWH, or the extent to which individual PLWH view themselves as belonging to a larger group of PLWH, given that collective identification appears to play a key role in activism (Simon et al., 1998). We then explore whether HIV activists report greater well-being, as indicated by greater social network integration, social well-being, active coping with discrimination, and meaning in life, and lower depressive symptoms.

Methods

Procedure and Participants

Participants were recruited between November 2012 and April 2013 from drop-in centers, housing programs, and other organizations providing services to PLWH. Clients were eligible if they were HIV-positive, English-speaking, and 18 years or older. Interested clients met with research assistants at recruitment sites. Ninety-three PLWH provided consent, completed the paper-and-pencil survey, and were compensated $25 each. Participant sociodemographic characteristics reflect those of recruitment sites (Table 1). All procedures received approval from the Yale University Institutional Review Board.

Table 1.

Participant characteristics

Characteristic	Total [%(n) or M(SD)]
Socio-Demographic
Age	50.07 (8.60)
Race
Black	55.9 (55)
White	19.4(18)
Other	18.3 (17)
Ethnicity
Latino(a)	38.7 (36)
Non-Latino(a)	61.3 (57)
Gender
Male	59.1 (55)
Female	37.6 (35)
Transgender	3.2 (3)
Sexual Orientation
Heterosexual	81.7 (76)
Gay, Lesbian, and/or Bisexual	15.1 (14)
Education
Less than HS Degree	35.5 (33)
HS degree or More	64.5 (60)
Years Living with HIV	18.11 (8.14)
HIV Activism
Activism: Mean	3.13 (1.07)
Activism: Dichotomized at 4
Yes	29.0 (27)
No	67.7 (63)
Stigma-Related
Enacted Stigma	1.51 (0.69)
Anticipated Stigma	1.60 (0.81)
Internalized Stigma	2.03 (1.03)
Perceived Public Stigma	3.18 (1.13)
Collective Identification with PLWH	3.68 (0.96)
Well-Being
Social Network Integration	3.44 (1.14)
Social Well-Being	3.61 (0.75)
Active Coping with Discrimination	2.96 (0.80)
Meaning in Life	3.96 (1.02)
Depressive Symptoms	15.69 (8.59)

Note: HIV activism; enacted, anticipated, internalized, and perceived public stigma; collective identification with PLWH; social network integration; social well-being; and meaning in life were measured on 1–5 point scales and averaged. Coping with discrimination was measured on a 1–4 point scale and averaged. Depressive symptoms were measured on a 0–3 point scale and summed.

Measures

Participants first reported socio-demographic characteristics. HIV activism was measured using the eight-item Activist Identity and Commitment Scale (Klar & Kasser, 2009), tailored to HIV activism (α=0.95). The scale includes items measuring identification as an HIV activist (e.g., “I identify myself as an HIV/AIDS activist”) and engagement in HIV activism (e.g., “I go out of my way to engage in HIV/AIDS activism”).

Enacted, anticipated, and internalized stigma were measured using the 28-item HIV Stigma Mechanism measure (Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013) (enacted α=0.82, e.g., “Family members have avoided me;” anticipated α=0.92, e.g., “Healthcare workers will not listen to my concerns;” internalized α=0.93, e.g., “I feel ashamed of having HIV”). Perceived public HIV stigma was assessed with the item “Overall, how do people in your community feel towards people who are HIV positive?”, with response options ranging from “very negative” to “very positive.” Collective identification with PLWH was measured with five items adapted from a scale designed to capture collective identification with older people (Simon et al., 1998) and gay people (Simon, Stürmer, & Steffens, 2000; α=0.88).

Social network integration was measured with five items based on a measure introduced by Brashers and colleagues (2002; α=0.82). Social well-being was measured with a four-item scale developed by Keyes (1998) (α=0.73). Active coping with discrimination was measured with the Brief COPE (Carver, 1997), with 10 items adapted to refer to coping with enacted stigma using active coping, religion, emotional support, instrumental support, self-distraction, and venting (α=0.90). Meaning in life was measured with the three-item Meaning in Life Questionnaire: Short Form (Steger, Frazier, Oishi, & Kaler, 2006; Steger & Samman, 2012; α=0.91). Depressive symptoms were measured with the 15-item short form of the CES-D (Andresen, Malmgren, Carter, & Patrick, 1994; Radloff, 1977), excluding items referring to somatic symptoms (α=0.84).

Results

Correlates of HIV activism were examined using linear and logistic regression to provide more robust findings (Table 2). Step 1 of the linear regression analysis included socio-demographic characteristics and accounted for 8% of the variance in activism (p=0.10). Socio-demographic characteristics were generally unrelated to activism, with the exceptions that participants identifying as LGBT and completing high school or more education identified and/or engaged less as activists. Step 2 of the analysis included stigma-related characteristics and accounted for an additional 28% of the variance in activism (p<.001). Participants who reported greater enacted stigma and participants who reported that they collectively identified more with other PLWH identified more as activists. Results of the logistic regression, in which socio-demographic and stigma-related characteristics predicted HIV activism split at four (indicating that participants agreed or strongly agreed with items), replicated associations between stigma-related characteristics and activism.

Table 2.

Results of regressions predicting HIV activism

	Linear Regression		Logistic Regression
	B(SE)	B	B(SE)	OR (95% CI)
Step 1: Socio-Demographic Characteristics
Age	0.01 (0.02)	0.07	−0.03 (0.04)	0.97 (0.89–1.05)
Black Race	0.33 (0.45)	0.15	−1.39 (0.98)	0.25 (0.04–1.69)
White Race	0.30 (0.47)	0.11	−2.02 (1.05)	0.13 (0.02–1.04)
Latino(a) Ethnicity	0.09 (0.39)	0.04	−1.05 (0.80)	0.35 (0.07–1.68)
Male Gender	0.08 (0.28)	0.04	−0.75 (0.64)	0.47 (0.14–1.64)
LGBT Sexual Orientation	−0.85 (0.38)	−0.27*	0.93 (0.91)	2.53 (0.43–14.92)
HS Education or More	−0.63 (0.29)	−0.28*	0.48 (0.62)	1.62 (0.48–5.51)
Years Living with HIV	−0.01 (0.02)	−0.10	0.04 (0.04)	1.04 (0.97–1.12)
Step 2: Stigma-Related and Other Characteristics
Enacted Stigma	0.65 (0.26)	0.35**	2.09 (0.96)	8.07 (1.24–52.71)*
Anticipated Stigma	−0.15 (0.21)	−0.11	−0.96 (0.80)	0.38 (0.08–1.85)
Internalized Stigma	−0.13 (0.12)	−0.13	0.35 (0.43)	1.41 (0.61–3.26)
Perceived Public Stigma	−0.08 (0.11)	−0.09	−0.37 (0.40)	0.69 (0.31–1.52)
Collective Identification with PLWH	0.59 (0.13)	0.49**	1.74 (0.55)	5.67 (1.93–16.68)**

Note:

^*p<0.05;

^**p<0.01.

The presented regression parameters for socio-demographic characteristics were calculated in step 1, and those for stigma-related and other characteristics were calculated in step 2.

To protect against Type I errors resulting from running a series of ANOVAs on multiple outcomes, associations between HIV activist identity and well-being were examined using multivariate analysis of variance (Tabachnick & Fidell, 2007) (Table 3). HIV activists reported greater social network integration, greater social well-being, greater engagement in active coping with discrimination, and greater meaning in life than non-activists. HIV activists also reported greater depressive symptoms than non-activists. Effect sizes were medium for social network integration, social well-being, and active coping but small for meaning in life and depressive symptoms.

Table 3.

Results of MANOVA, including estimated marginal means

	Activist	Non-Activist	MANOVA Results
Social Network Integration	4.20 (0.25)	3.08 (0.14)	F(1,72)=14.99, η2=0.20**
Social Well-Being	4.03 (0.17)	3.46 (0.17)	F(1,72)=7.82, η2=0.11**
Active Coping with Discrimination	3.53 (0.18)	2.81 (0.10)	F(1,72)=11.53, η2=0.16**
Meaning in Life	4.35 (0.25)	3.74 (0.14)	F(1,72)=4.28, η2=0.07*
Depressive Symptoms	20.22 (2.03)	14.68 (1.17)	F(1,72)=5.28, η2=0.08*

Note:

^*p<0.05;

^**p<0.01.

Analyses controlled for socio-demographic characteristics in Table 1.

Discussion

Results suggest that stigma, activism, and well-being are associated among PLWH, but that these relationships are complex. First, enacted stigma was associated with activism, whereas anticipated, internalized, and perceived public stigma were not. Second, activists generally reported greater well-being than non-activists, including on indicators of social network integration, social well-being, engagement in active coping with discrimination, and meaning in life. Yet, activists also reported somewhat greater depressive symptoms, complicating the relationship between activism and well-being in this sample. It is possible that experiences of burnout among activists – involving emotional exhaustion, depersonalization, and diminished achievements – could lead to depressive symptoms (Gilster, 2012).

The current investigation adds to the literature on stigma, activism, and well-being among PLWH. By differentiating between stigma mechanisms, it provides a more nuanced understanding of which stigma experiences may be associated with activism. Results are consistent with work suggesting that past experiences of discrimination may be a key motivator of engagement in activism (Brashers et al., 2002; Deacon, 2006; Siegel et al., 1998; Stanley, 1999). Fears of future discrimination, awareness of societal stigma, and internalized stigma may not motive or act as barriers to activism. Results further support findings suggesting that there are benefits and costs of activism (e.g, Gilster, 2012). Although the benefits appear promising, the potential cost of greater depressive symptoms are concerning given associations between depression with lower medication adherence and greater disease progression (Boarts, Sledjeski, Bogart, & Delahanty, 2006).

The current investigation is limited by its small and relatively homogeneous sample and should therefore be considered preliminary. PLWH accessing AIDS service organizations may be particularly marginalized in terms of socioeconomics, education, and other resources. Results may differ among participants recruited from other settings (e.g., LGBT and more educated PLWH may engage in more activism). Future research should examine these associations among larger and more diverse samples. Future work may also employ qualitative methods to investigate which experiences of stigma motivate which forms of activism. It may be important to study these associations using experimental and longitudinal methods, to better understand direction of effects and causal processes involved.

This work suggests that activism may offer benefits to PLWH who experience HIV stigma, including social well-being, connection with other PLWH, and a sense of purpose or meaning in life. Yet, this work also raises the possibility that activists could experience greater depressive symptoms than non-activists. As this possibility is further investigated, PLWH, as well as interventionists and clinicians invested in improving well-being among PLWH, may carefully weigh the benefits and potential costs of activism.