Effects Of HIV stigma reduction interventions in diasporic communities: insights from the CHAMP study

ABSTRACT

Racialized diasporic communities in Canada experience disproportionate burden of HIV infection. Their increased vulnerabilities are associated with interlocking challenges, including barriers in accessing resources, migration and settlement stress, and systemic exclusion. Further, people living with HIV (PLHIV) in these diasporic communities face stigma and discrimination in both mainstream Canadian society as well as their own ethno-racial communities. HIV stigma negatively impacts all aspects of HIV care, from testing to disclosure to treatment and ongoing care. In response to these challenges, a Toronto based community organization developed and implemented the CHAMP project to engage people living with HIV/AIDS (PLHIV) and leaders from different service sectors from the African/Caribbean, Asian and Latino communities to explore challenges and strategies to reduce HIV stigma and build community resilience. The study engaged 66 PLHIV and ethno-racial leaders from faith, media and social justice sectors in two stigma-reduction training programs: Acceptance Commitment Therapy Training (ACT) and Social Justice Capacity Building (SJCB). Data collection included pre-and post- intervention surveys, focus groups and monthly activity logs. Participants were followed for a year and data on changes in the participants’ attitudes and behaviors as well as their actual engagement in HIV prevention, PLHIV support and stigma reduction activities were collected. CHAMP results showed that the interventions were effective in reducing HIV stigma and increasing participants’ readiness to take action towards positive social change. Participants’ activity logs over a period of 9 months after completing the training showed they had engaged in 1090 championship activities to advocate for HIV related health equity and social justice issues affecting racialized and newcomer PLHIV and communities.

KEYWORDS:

• HIV Stigma reduction
• racial minority
• newcomers living with HIV
• community leaders
• CBR

Introduction

In Canada, racialized diasporic communities experience disproportionately high rates of HIV infection compared to the general population. According to 2013 HIV surveillance data, racialized minority communities accounted for 15.9 to 17.4% of new infections while making up only 2.2% of the Canadian population (Public Health Agency of Canada, 2014). The elevated risks have been attributed to complex interlocking challenges, including poverty, systemic exclusion, and various forms of stigma and discrimination (HIV stigma, racism, homophobia, sexism, etc.), all of which compound migration and settlement stress and exacerbate access barriers to culturally and linguistically appropriate services (Chen, Li, Fung, & Wong, 2015; LaViolette, 2009; Tulloch et al., 2011; Williams, Newman, Sakamoto, & Massaquoi, 2009).

Among the myriad of psychosocial challenges faced by racialized communities, HIV stigma is a major factor manifesting at the individual, community, and societal levels, negatively impacting on all aspects of HIV care, from testing to disclosure to treatment (Logie, James, Tharao, & Loutfy, 2011). At the individual or micro level, enacted and internalized HIV stigma interact with other forms of discrimination, leading to shame, self-rejection, and isolation (Bennett, Hersh, Herres, & Foster, 2016; Grodensky et al., 2015). At the community or meso level, HIV stigma leads to social rejection and exclusion, often even among members of their own ethnic and faith communities (Derose et al., 2010). At the societal or macro level, people living with HIV (PLHIV) experience barriers to accessing healthcare and treatment due to discriminatory health and legal systems that compromise their human rights (Adam, Elliott, Corriveau, & English, 2013). To address HIV stigma, all these levels need to be considered and impacted.

While faith, settlement, ethnoracial media, and social justice organizations often play an important role in providing support and advocacy for racial minority and newcomer communities, these sectors have been relatively under-engaged in issues related to HIV stigma (Balaji et al., 2012). Previous research has shown that sex-negative values, deep-rooted homophobia, and HIV/AIDS phobia create hostile environments that make it unsafe for PLHIV to disclose their status, seek support and services, or advocate for social changes (Conserve, 2014; Koku, 2010). The invisibility of PLHIV and the lack of community leaders to champion HIV issues enable community denial and silence, i.e., the common discourse that “it does not occur in my community”. This reinforces emotional disconnection and dehumanization of PLHIV, undermining community awareness and efforts in HIV prevention, education, and care and perpetuating HIV stigma in a vicious cycle (Li, Wong, Cain, & Fung, 2016).

One way of breaking through the cycle of stigma is to develop interventions that can increase HIV championship from among PLHIV and ethnoracial community leaders to address the multiple levels of stigma. Existing literature shows that many anti-stigma interventions focusing on HIV and mental illness have been carried out around the world. Most of them use social media campaigns or psycho-education (Curry-Stevens, 2003; Lee et al., 2006). Interventions that integrate experiential learning and community engagement have been found to be effective (Rye & Meaney, 2009).

Another paradigm to increase internal resilience and promote effective actions comes from psychological intervention literature. Acceptance and Commitment Therapy/Training (ACT) is a mindfulness-based cognitive-behavioral intervention that aims to increase psychological flexibility through mindfulness, acceptance, and behavioral change processes (Hayes, Luoma, Bond, Masuda, & Lillis, 2006). It has been shown to be effective in treating a variety of physical and mental disorders, including anxiety, depression, and chronic pain (A-Tjak et al., 2015). There is emerging evidence that it may be useful in decreasing racial stigma and stigma against substance use (Hayes et al., 2004; Lillis & Hayes, 2007; Luoma, Kohlenberg, Hayes, Bunting, & Rye, 2008; Masuda et al., 2009). Its use may augment efforts to train HIV champions.

The CHAMP study

Community Champions HIV/AIDS Advocates Mobilization Project (CHAMP) was a community-based research aimed at assessing the effectiveness of two group interventions, Acceptance and Commitment Therapy/Training (ACT) and Social Justice Capacity Building (SJCB), in reducing HIV stigma and mobilizing champions to address HIV stigma in the African/Caribbean, Asian and Latino communities in the Greater Toronto Area.

SJCB was designed to promote readiness in HIV championship by increasing participants’ critical understanding of the interrelationship among health, equity, and social justice and developing their skills in advocacy and community mobilization. The intervention used a collaborative learning approach that tapped into participants’ lived experiences and community strengths. Learning activities included experiential exercises on social inclusion/exclusion, sharing of resistance strategies, critical dialogues on intersecting social oppressions, and engagement in developing collective strategies to address HIV related stigma and other social inequities.

ACT aimed at increasing psychological flexibility through six core underlying processes: defusion, acceptance, present moment, self-as-context, values, and committed action. The intervention used group discussion, mindfulness exercises, and experiential group exercises. Learning activities included exercises that examined the role of defusion and acceptance to cope with internalized stigma; a self-as-context exercise that decreased the attachment to limiting self-narratives; and values exercises that increased willingness to commit to values guided behaviors in spite of interfering negative thoughts.

In piloting these two interventions, our research questions were whether: (1) SJCB would decrease HIV stigma; (2) SJCB would increase participants’ capacity to champion HIV; and (3) the addition of ACT would augment the effects of SJCB. This paper addresses these questions using the quantitative measures in this mixed-method study.

Methods

Recruitment and design

Working with community partners, we recruited two target groups of participants from the African/Caribbean, Asian and Latino communities: (1) people living with HIV (PLHIV); (2) Non-PLHIV community leaders (CL) from faith-based, social justice organizations and ethno-specific media. Participants were recruited through outreach to community organizations, advertisements in local (ethnic) media, and presentations in the communities. The inclusion criteria for participation were: age 18 or above, living in the Greater Toronto Area, self-identified as a member of the African/Caribbean, Asian, and/or Latino Canadian communities, and willing and available to take part in the training sessions. In addition, PLHIV participants were limited to those with no prior leadership role in the HIV sector and CL participants needed to be affiliated with either faith-based, media, or social justice organizations.

Using G*Power for power analysis for repeated measures ANOVA between factors with three measurements and with the parameters of power at 0.80, an alpha level of 0.05, and an estimated medium effect size (f = .25), the required sample size was estimated to be 86. To account for dropouts given the high demands of participation, 100 participants were set as the target for recruitment. Participants from each population were randomly assigned to receive SJCB only or the combined ACT + SJCB group interventions. Each active group intervention, SJCB and ACT, consisted of four half-day sessions. PLHIV and CL received the interventions separately to ensure that there was safe participation. A quantitative questionnaire was administered before, immediately after, and 9 months after the intervention. The questionnaire consisted of demographic data and validated scales measuring stigma, ACT-related measures, and readiness for HIV championship. The participants also submitted monthly activity logs over the 9-month follow-up period to capture their HIV championship activities. Qualitative focus groups were conducted before the interventions and at 9 months after the intervention. Participants were also invited to two optional networking sessions at three and nine months after the intervention. Ethics approval was obtained from all affiliated universities and organizations, and informed consent was obtained from all participants prior to data collection. This paper reports on the results from our quantitative data.

Measures

Enacted and internalized Stigma: (a) AIDS-Related Stigma Scale (A-RSS) (Kalichman et al., 2005) and (b) Internalized AIDS-Related Stigma Scale (IA-RSS) (Kalichman et al., 2009) – 9-item and 6-item standardized scales used to measure HIV stigma for CL and internalized stigma for PLHIV respectively. Six additional items augmented the A-RSS based on our previous study (Li et al., 2016): “People who got infected through sex or drugs have only themselves to blame”; “AIDS is a gay disease”; “People in my community want to hear about HIV and AIDS”, “People who are infected with HIV or have AIDS have gone against their culture”, “People who are infected with HIV or have AIDS bring shame onto their families”, “HIV and AIDS are not problems in my ethnic community”. Analyses were done with the original and expanded scale (A-RSS+). As results were similar, we will present the data with the expanded scale. Using baseline data, Cronbach's alphas were 0.91 for A-RSS+ and 0.88 for IA-RSS. We note, however, that the alpha for the A-RSS+ decreased to .37 in the 9-month follow-up, making it unreliable for use in analyses.

ACT-specific measures: (a) Acceptance and Action Questionnaire version II (AAQ-II) (Bond et al., 2011) – a 7-item measure of psychological flexibility, the target of ACT, conceptualized as an individual's ability to persist in value-driven behavior in the face of negative emotions or feelings; (b) Freiburg Mindfulness Inventory (FMI) (Walach, Buchheld, Buttenmüller, Kleinknecht, & Schmidt, 2006) – a 14-item measure of mindfulness, defined as the capacity to adopt a non-judgmental stance and attend to the present moment; and (c) Values Living Questionnaire (VLQ) (Wilson, Sandoz, & Kitchens, 2010) – a 2-part instrument used to assess (i) the perceived value in 10 different areas of life (e.g., work, family, friends, etc) from “Not at all Important” to “Very Important” and (ii) the consistency of one's actions with regards to their own values in each of these areas from “Completely Inconsistent” to “Completely Consistent”. Both the total action consistency score (VLQ-A) and the action consistency score weighted by importance (VLQ-W) were used. Cronbach's alphas were 0.92 for AAQ-II, 0.79 for FMI, 0.82 for VLQ-A, and 0.80 for VLQ-W.

HIV Championship Readiness: based on our previous research and working with our community advisory committee, we generated items to explore participants’ perceived readiness to engage in HIV championship activities: (a) willingness to speak out against stigma – 12-items that presented specific scenarios (e.g., “if I hear members of my family making homophobic statements”) and gave multiple options (“join in with them” scored as 1; “stay silent”; “I change the subject”; “leave the group”; “I don't know what to do”; “other” – scored as 2; and “speak out against such comments” scored as 3); (b) perceived knowledge to discuss HIV related issues (e.g., “HIV transmission”) – 6 items on a likert scale from “not at all knowledgeable” to “extremely knowledgeable”; (c) confidence to talk to others about HIV related issues (e.g., “HIV transmission”) – 6 items from “not at all confident” to “completely confident”; (d) confidence to engage others to fight against various social injustices (e.g., “homophobia”) – 5 items from “not at all confident” to “completely confident”; and (e) confidence to mobilize networks champion HIV related issues (e.g., “combat discrimination against people with HIV or AIDS”) – 5 items from “not at all confident” to “completely confident”. The Cronbach's alpha were: 0.91, 0.77, 0.85, 0.85, 0.87 respectively.

Data analysis

All scales were tested for internal consistency and independence from each other. Repeated measures ANOVA and regression techniques were used to examine pre-post-post and between group differences on all measures. Variations in outcomes were examined based on intervention group (SJCB vs. Combo) and participant type (PLHIV or CL).

Results

Study participants

We used over recruitment as a strategy to address anticipated attrition associated with the time-demand of the intervention research. We initially engaged a total of 105 participants (42 CL and 63 PLHIV). A total of 66 participants (63%) completed the group interventions, including 35 who received SJCB and 31 who received both ACT and SJCB. There were 28 PLHIV who dropped out due to health related and legal reasons and 11 CL who dropped out due to employment related issues. None of the dropouts were related to non-acceptance of the interventions. A total of 62 participants (32 PLHIV and 30 CL) completed the entire 9-month follow-up period; reasons for attrition during follow-up included migration to another country (n = 2), deportation (n = 1), and death due to non-HIV related illness (n = 1). A significant difference in baseline scale scores between those who dropped-out and those who stayed in could not be found.

Our participants reflected the diversity of the target communities, including 30 African/Caribbean (45%), 25 Asian (37%), and 11 Latino/Hispanic (17%) participants. Among PLHIV, males made up 51% (n = 18) of the sample, females 46% (n = 16) and transgendered females 3% (n = 1). Among CL, 61% (n = 19) were female and 39% (n = 12) were male. In terms of sectoral backgrounds of CL, faith leaders made up 38% (n = 12), arts and media made up 19% (n = 6) and social justice made up 42% (n = 13) (See Table 1).

Table 1. Participant demographics.

Demographics		Total
		PLHIV (n = 35)	CL (n = 31)
Gender	Trans	1(3%)	0
	Female	16 (46%)	19 (61%)
	Male	18 (51%)	12 (39%)
Age	18–29	3 (9%)	8 (26%)
	30–39	12 (34%)	8 (26%)
	40–49	12 (34%)	3 (10%)
	50–59	6 (17%)	9 (28%)
	60+	2 (6%)	3 (10%)
Ethnicity	Asian	7 (20%)	18(58%)
	Black	20 (57%)	10 (32%)
	Latino	8 (23%)	3 (10%)
Sexual orientation	Gay/Lesbian	11 (31)	7 (23%)
	Bisexual	4 (11%)	1 (3%)
	Questioning	2 (6%)	1 (3%)
	Heterosexual	18 (51%)	22 (71%)
Faith	Buddhist	2 (6%)	1 (3%)
	Christian	22 (63%)	15 (48%)
	Hindu	1 (3%)	0
	Muslim	0	4 (13%)
	None	7 (20%)	9 (29%)
	Other	3 (9%)	2 (6%)
Born in Canada	Yes	0	6 (19%)
	No	35	25 (80%)
Years in Canada	<1	6 (17%)	1 (3%)
	1–5	8 (23%)	6 (19%)
	6–10	7 (20%)	6 (19%)
	11–15	3 (9%)	1 (3%)
	16–20	2 (2%)	1 (3%)
	21–30	3 (9%)	5 (16%)
	31+	6 (17%)	5 (16%)
	Not specified	0	7 (21%)

Impact of intervention

After the intervention, PLHIV had significantly decreased internalized stigma (IA-RSS) and CL had significantly decreased stigma against HIV/AIDS (A-RSS+) (Table 2). In regression analysis, a significant difference could not be found between PLHIV and CL or between interventions (SJCB vs. ACT + SJCB) on any outcome measures. Therefore, other than the stigma scales, PLHIV and CL were combined in analyses. Measures of psychological flexibility (AAQ-II) and mindfulness (FMI) were not significantly different from pre to post. Participants as a group had significantly increased valued living as measured by action consistency with their values (VLQ-A) and the weighted scores of their action consistency (VLQ-W). Participants improved in all 5 areas assessed with regards to readiness for HIV championship: they were significantly more likely to endorse speaking out against stigma in social situations; had significantly increased perceived knowledge and confidence to talk to others about HIV issues; had increased confidence to engage others to fight social injustices; and had increased confidence to mobilize community networks to champion HIV issues.

Table 2. Summary of quantitative data on participants who completed all interventions and follow-up (n = 62).

Scales	Scale range	Pre Mean (SD)	Post Mean (SD)	9-Month Follow-up^† Mean (SD)
PLHIV Internalized Stigma (IA-RSS)	6–30	15.4 (6.5)	13.3 (6.5)**	12.8 (5.6)**
CL Stigma (A-RSS+)	15–75	23.3 (8.7)	20.3 (3.6)*	–
Mindfulness (FMI)	14–56	41.2 (6.3)	40.3 (7.4)	40.5 (5.4)
Psychological Flexibility (AAQ-II)	7–49	23.6 (11.3)	22.4 (10.3)	21.6 (10.1)
Values (VLQ-A)	10–100	67.1 (18.4)	74.5 (17.7)*	73.1 (16.8)*
Weighted Values (VLQ-W)	100–1000	553.6 (185.1)	651.1 (184.5)**	616.1 (180.1)*
Speaking Out in Social situations	12–36	32.4 (4.2)	33.6 (3.0)*	33.3 (4.0)
Feeling Knowledgeable	6–30	20.6 (4.0)	22.8 (4.0)**	23.3 (4.2)**
Confidence to Talk	5–25	20.8 (5.6)	23.1 (3.8)**	22.7 (5.0)*
Confidence to Engage others to fight injustice	5–25	20.3 (4.0)	22.4 (3.2)**	21.5 (3.4)**
Confidence to Mobilize Networks	5–25	18.8 (4.5)	20.7 (3.8)**	20.2 (4.2)*

*p < 0.05; **p < 0.01; ^†Compared against Pre.

At 9-month follow-up, the results were not significantly different from post-intervention, with most improvements retaining significance compared to baseline. The items on speaking out against HIV/Stigma in social situations fell just below significance (p = 0.07).

Activity logs

Based on analysis of the monthly activity logs, activities were categorized according to the level of impact (self; personal relationships such as friends, families, and co-workers; community such as organizations or institutions; societal; and global) and the type of activities. The participants carried out a total of 1090 activities, with the majority of impact at personal relationship and community levels. The types of activities included: (i) championing against social injustice (e.g., confronting homophobia in faith organizations and academic institutions; (ii) promotion of care and support for PLHIV (e.g., PLHIV providing peer support, and CL volunteering at AIDS service organization); (iii) supporting HIV prevention education and awareness (e.g., leading online forums and educational workshops); (iv) championing against HIV related stigma and discrimination (e.g., CL and PLHIV collaborating to address stigma); and (v) community building and networking (e.g., participants establishing new social groups and organizing community events).

Discussion

The group intervention employed by CHAMP was effective in decreasing internalized HIV stigma among PLHIV, with the decrease maintained at follow-up. As internalized stigma is linked with HIV diagnosis and care; affects mental health; and has indirect impact on overall wellbeing, this observed benefit can have important implications for this type of intervention for PLHIV. In response to the second research question, activity logs and the VLQ show that both PLHIV and CL were engaging in meaningful activities in multiple domains of their lives after the intervention, with many PLHIV attributing internalized shame as a previous psychological barrier.

Similarly, results suggest that the CHAMP intervention is effective in decreasing stigma among non-PLHIV CL. As the stigmatizing environment embedded in the communities has been identified as a key source of distress and a reason for non-disclosure (Li et al., 2016), the results suggest the need for promoting this type of intervention among key community leaders. Further, as stigma also influences the healthcare experience of PLHIV (Chen et al., 2015), further studies can explore the use of the CHAMP intervention for health service providers.

Ultimately, the aim of any intervention being able to decrease enacted and internalized HIV stigma is that attitudinal shifts may enable meaningful behaviors that lead towards greater equity. Oppression on invisible traits such as HIV status and sexual orientation thrives on stigma manifested in fear, shame, and silence at the individual level and denial and disengagement with the issue at the community level. Beyond the importance of stigma reduction is the finding that the CHAMP intervention led to an increase in readiness in both PLHIV and CL to champion HIV related issues, as evidenced in both the readiness scales and the activity logs.

Based on the employed measures, the addition of ACT did not appear to significantly augment the impact of SJCB. While ACT may truly be ineffective in producing any significant changes, the observation of markedly positive changes among a number of participants undergoing ACT suggests that the lack of significant results might be due to other explanations, such as the small sample size limiting power, the limitation of the instruments used, and/or the effect of ACT being similar and hence indistinguishable from the effects of SJCB. With regards to the latter, it may be possible that both interventions contributed to increased value living, while the compact way in which ACT was delivered did not allow sufficient time for participants to practice unique ACT skills such as defusion and mindfulness skills through homework. Our qualitative data from focus groups shed more nuanced understanding of the differential beneficial impact of ACT and SJCB.

There are a number of limitations to the study. As noted, the final sample size was small limiting the power of the study. There may be a selection bias in that participants who wanted to join the project to become HIV champions may already have less stigmatizing attitudes or higher psychological flexibility, thereby limiting the amount of improvement. As there is no control group, effects other than the intervention as the cause of the observed improvement cannot be ruled out. Larger studies with a control group and with intervention groups that are exposed to only ACT or SJCB may further shed light on the effects of these interventions. Future dismantling research may isolate the active ingredient of the interventions and further comparative studies can examine the impact of these interventions against other anti-stigma strategies.

Conclusion

The CHAMP intervention was designed to strategically challenge HIV stigma through breaking down the conspiracy of silence using experiential learning that combines both raising awareness and building skills. In addition to shifts in attitudes, CHAMP participants have demonstrated actions as HIV champions in their own spheres of influence. The overall outcome of the study suggests that engaging and empowering both PLHIV and non-PLHIV community leaders can reduce HIV stigma and promote individual and collective resilience and action.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Canadian Institutes of Health Research.