AIDS Care

Examining HIV/AIDS provider stigma: assessing regional concerns in the islands of the Eastern Caribbean

N. ABELL1, S. E. RUTLEDGE2, T. J. MCCANN3, & J. PADMORE4

Florida State University, USA, 2Temple University, USA, 3St. Georges University, Grenada, and 4University of the West Indies, St. Augustine, Trinidad & Tobago
1

Abstract HIV/AIDS provider stigma has been understudied in the context of prevention, testing, and treatment. Results of a survey of persons associated with HIV/AIDS education, health care, and social service delivery in the Eastern Caribbean are described. Reliable constructs were observed for warmth towards PLHA, comfort in association with them, tendencies to distance from or condemn them, beliefs in viral transmission myths, and perceived capacity to counsel effectively. Most discrimination was directed towards MSM and IDUs. Providers whose roles were likely to involve touch felt less comfortable around PLHA and more likely to distance from and condemn them than providers whose roles were not. Implications for improved measurement and incorporation of mindfulness techniques in stigma intervention are discussed.

HIV/AIDS stigma devalues persons living with HIV/ AIDS (PLHA) or those associated with them, and stems from underlying stigmatization of sexual behaviour or intravenous drug use (Ogden & Nyblade, 2005). Discrimination, the unfair and unjust treatment of an individual based on . . . real or perceived HIV status (p. 7) often follows. Manifestations include avoiding PLHA, passing judgment when determining their worthiness for health and social services, and applying cultural and structural sanctions (Herek, 1999a; Herek et al., 1998). At the structural/cultural level, PLHA are considered undeserving of compassion or care (Malcolm et al., 1998). Expressions range from passive to aggressive, including quarantine, mandatory testing, and denial of immigration (Malcolm et al., 1998). Principles of power and domination characterize individual expressions, underscoring the importance of understanding social inequality as a primary contributor to discrimination (Parker & Aggleton, 2003; Castro & Farmer, 2005). Persons fearing viral acquisition may react negatively. Feeling disgust, anger, or contempt, they may intentionally or unintentionally discriminate to maintain a safe distance from those they know or believe to be HIV/. This atmosphere, expressed in service delivery contexts, can chill the willingness of persons to present for testing and care.

Interventions in HIV/AIDS provider stigma are underdeveloped in existing literature, but are receiving increasing attention in the Caribbean (CAREC, 2004). Anti-stigma campaigns tend to focus more on instrumental stigma (i.e. fear of becoming infected) and transmission myths, downplaying symbolic associations of HIV/AIDS with immoral, weak, or stupid behaviour by deviant subgroups (Rutledge & Abell, 2005). Providers: part of the solution and the problem? Employing prejudiced service providers to deliver HIV prevention and care can be counterproductive. Providers may hold power over clients while simultaneously fearing close contact with them. Many providers, including physicians, nurses, and social workers, are judgmental towards PLHA, and some have withheld treatment (Carter et al., 1996; Cobb & De Chabert, 2002; Isaacs & Lambourne, 2000; Law & Takahashi, 2000; Margolis et al., 2001). For HIV/AIDS services to be effective, providers must understand their own prejudice and avoid discriminating against clients (Hepworth et al., 2002; Singleton-Bowie, 1995). Still, because providers are often stigmatized and punished for their good deeds (see Snyder et al., 1999), many likely struggle with suppressing their own fears of instrumental and symbolic contagion.

Correspondence: N. Abell, PhD, Associate Professor, College of Social Work, Florida State University, Tallahassee, Florida 32306 2570. Tel: 850 644 9753. Fax: 850 644 9750. E-mail: nabell@fsu.edu ISSN 0954-0121 print/ISSN 1360-0451 online # 2006 Taylor & Francis DOI: 10.1080/09540120600774297

N. Abell et al. Results

N Valid%

Table I. Sample characteristics (N /90).

Country Barbados Grenada Trinidad & Tobago Gender (missing /3) Female Male Age (missing /11) 20 29 30 39 40 49 50 59 60/ Role (missing /12) Sports Coach Service provider: physical contact Service provider: no physical contact Populations Served1 (missing /3) Children Adolescents Adults

39 35 16 51 36 17 22 29 8 3 34 26 18 75 68 78

43.3 38.9 17.8 58.6 41.4 21.5 27.8 36.7 10.1 3.8 43.5 33.4 23.1 86.2 78.2 89.7

Respondents included 39 persons in Barbados (primarily sports coaches), and 35 persons in Grenada and 16 in Trinidad & Tobago (primarily health and social services providers) (see Table I). Most were women, and average age was 39.2 years (SD / 10.3). Over half were service providers; of those, 59% were likely to have direct physical contact with PLHA. Most worked with more than one age group. Attitudes and beliefs Respondents rated statements about PLHA. They generally agreed that PLHA were unconcerned about infecting others, disagreed that PLHA had got(ten) what they deserve, and were neutral regarding PLHAs responsibility for becoming infected (see Table II). Respondents with prior HIV/AIDS education rated the possibility of acquiring HIV through sharing a glass with a PLHA, using public toilets, or being coughed or sneezed on by a PLHA. Although the coaches in Barbados rated these more highly than others, the average scores for health workers and social service providers suggest they also had concerns about casual transmission. All participants reported substantial concern that testing HIV/ could lead to discrimination, and reported that such concerns were reasonably likely to affect their own decisions to get tested. Measuring HIV/AIDS stigma Six constructs were identified: . Warmth: feeling favourably towards infected or affected persons, including children, adults, MSM, IDU, and caregivers. . Comfort: ease in interacting with PLHA, in school, at work, shopping, and sharing tableware. . Distancing: minimizing contact or association with PLHA. . Condemnation: judging or wishing to control PLHA. . Transmyth: HIV acquisition by sharing glasses, using public toilets, or being coughed or sneezed on, and . Counsel: perceived ability to effectively educate and support others regarding prevention, testing, and treatment. All scales met or exceeded the recommended reliability coefficient (a /.70) (Springer et al., 2002) (see Table III).

Note : 1respondents may indicate multiple categories.

HIV-stigma research is hampered by poor measures, often lacking cross-cultural validation, and by limited understanding of the effects of educating providers about their attitudes and behaviours (Brown et al., 2003). In the present study, we surveyed providers in the islands of the Eastern Caribbean on their attitudes and projected behaviours towards PLHA. Our larger purpose was to establish whether and to what degree attitudes and behaviours identified elsewhere might also exist in this region. Methods We conducted a series of workshops over three years in Barbados, Grenada, and Trinidad & Tobago. These were coincident with key informant interviews and focus group sessions conducted with providers, PLHA, and caregivers on stigma in HIV/AIDS services. Workshop participants were sampled by convenience in Barbados, where a stigma workshop was presented to sports coaches engaged in prevention and treatment of adolescent substance abuse. Participants in Grenada and Trinidad & Tobago were purposively sampled from ministries of health and social services, and nongovernmental organizations. A voluntary, anonymous survey explored their attitudes and projected behaviours towards PLHA, using items adapted from Hereks (1999b) stigma questionnaire.

Examining HIV/AIDS provider stigma

Table II. Attitudes toward PLHA and beliefs about HIV/AIDS by country. Trinidad & Tobago

Barbados Attitudes toward PLHA1 PLHA dont care if they infect others PLHA are responsible for having their illness PLHA who got HIV through sex or drug use got what they deserve Transmission Beliefs2 Sharing a glass with a PLHA Using public toilets Being coughed or sneezed on Trust of Authorities & Experts1 Scientists & doctors can be trusted to tell the truth about HIV/AIDS Expert opinions about casual contact is true HIV testing and concerns about stigma Testing HIV/ may lead to discrimination3 Concern about discrimination might affect decision to be tested4

Grenada

Total

M SD M SD M SD M SD M SD M SD M SD M SD M SD M SD

4.33 1.67 3.45 1.94 2.29 1.47 2.82 1.87 3.68 1.89 3.03 1.78 4.72 1.77 5.29 1.68 6.34 1.44 4.89 2.01

4 2.06 3.03 1.94 1.85 1.18 1.72 1.22 2.22 1.85 2.26 1.68 4.94 1.84 6.06 1.43 5.97 1.4 4.63 2.04

3.94 2.35 3.31 1.99 2.31 1.89 2.13 2.19 2.06 2.29 1.6 1.6 4.63 2.16 5.94 1.73 6.19 1.72 4.44 2.8

4.13 1.95 3.26 1.94 2.13 1.45 2.28 1.78 2.84 2.07 2.48 1.77 4.79 1.85 5.7 1.62 6.17 1.47 4.7 2.17

Responses range from : 11 /strongly disagree 7 /strongly agree; 21 /very unlikely 7 /very likely; 31 /not at all concerned 7 /very concerned; 41 /not at all 7 /a great deal.

Relations among stigma constructs Correlations and associated effect sizes (r2s) are summarized in Table IV. As expected, more warmth was associated with increased comfort, stronger belief in counselling effectiveness, less distancing and condemnation, and less belief in transmission myths. Greater reported comfort was associated with increased confidence in counselling abilities and reduced tendencies to distance, condemn, or believe in myths. Respondents with greater counselling confidence were less likely to distance, condemn,
Table III. Constructs associated with HIV/AIDS provider stigma1. Scale Warmth Comfort3 Distancing3 Condemnation3 Transmyth3 Counsel3
2

or believe in myths, and those who distanced themselves the most from PLHA were more likely to condemn them or believe in myths. The strongest relationships were observed between Comfort and Warmth (r2 /.31), Comfort and Distance (r2 /.46), and Condemnation and Distance (r2 /.34). Comparisons within the region All respondents reported generally positive regard for PLHA (Warmth M /62) (see Table V). They were moderately comfortable with PLHA, had low tendencies to distance, and somewhat higher tendencies to condemn. They also reported some belief in transmission myths. Overall, providers were confident regarding their capacity to counsel effectively. Although ANOVAs revealed significant differences by country across all factors, post-hoc analyses determined these to be between Bajan and other respondents. These differences were likely a function of professional role, where Bajan coaches responsibilities differed meaningfully from other providers. Subsequently, we contrasted respondents in Grenada and Trinidad & Tobago only, to determine whether differences could be detected amongst them.

Reliability (a) .85 .78 .86 .77 .72 .93

SEM 7.37 .63 .42 .43 .84 .30

Notes : 1Adapted from: Herek, G. M. (1999). HIV/AIDS and stigma: 1999 survey items. Retrieved October 17, 2002, from http:// psychology.ucdavis.edu/rainbow/html/Stigma_items_99.pdf; 2response range: 0 /least warmth 100 /most warmth; 3response range: 1 /least 7 /most.

N. Abell et al.

Table IV. Correlations among HIV/AIDS stigma scales (N /88). Warmth r Comfort Counsel Distance Condemn Transmyth .56 .40 /.38 /.39 /.27 r2 .31 .16 .14 .15 .07 r Comfort r2 r Counsel r2 r Distance r2 Condemn r r2

.44 /.68 /.38 /.26

.19 .46 .14 .07

/.34 /.25 /.38

.12 .06 .14

.58 .42

.34 .18

.38

.14

Table V. HIV/AIDS scale means by country. Barbados Warmth1 Comfort2 Counsel2 Distance2 Condemn2 Transmyth2 M SD M SD M SD M SD M SD M SD 51.7 14.5 4.50 1.31 5.17 1.27 3.18 1.00 3.38 .87 3.17 1.39 Grenada 68.8 20.9 5.31 1.24 6.28 .62 2.41 1.06 2.78 .81 2.17 1.41 Trinidad & Tobago 69.8 13.9 6.00 1.08 6.51 .62 2.37 1.19 3.16 .95 2.04 2.01 Total 61.6 19.1 5.08 1.35 5.84 1.12 2.74 1.12 3.11 .90 2.57 1.59

Notes : 1response range /0 100; 2response range /1 7.

Table VI. Mean differences among HIV/AIDS stigma scales by Roletouch (N /43). Warmth M Touch No Touch Note : *p B/ .05. 65.5 72.5 SD 18.8 17.6 Comfort* M 5.18 6.00 SD 1.34 .88 Counsel M 6.39 6.32 SD .64 .56 Distance* M 2.85 2.00 SD 1.05 1.03 Condemn* M 3.18 2.56 SD .86 .77 Transmyth M 2.59 1.61 SD 1.74 1.44

Table VII. Analysis of variance for comfort (N /43). Source Roletouch w/in group error Analysis of Variance for Distance (N /43) Roletouch w/in group error Analysis of Variance for Condemn (N /43) Roletouch w/in group error df 1 42 1 42 1 42 F 1.58 (1.38) 6.97 (1.08) 5.99 (0.68) h2 .110 p .028

.142

.012

.125

.019

Note : Values enclosed in parentheses represent mean square errors.

Examining HIV/AIDS provider stigma Differences attributable to provider role Participants roles were categorized according to those who were likely to have direct physical contact with PLHA (Touch: Nurse, Dentist, Caregivers, and Student Nurses) and those who were not (No Touch: Peace Corp Volunteer, Police Officer, Prison Officer, HIV/AIDS Counsellor, Social Worker, CEO, Administrator, and HIV Educator) (see Table VI). No differences were observed in warmth, counselling capacity, or belief in myths. However, those likely to touch were also more likely to condemn, to distance from, and to feel less comfortable around PLHA. The effect sizes (h2 ) were modest, ranging from 11 14% (see Table VII). Conclusions A number of limitations apply. The sample was small and nonrandom, participants role responsibilities varied substantially, and the measures had not previously been used in the region. Furthermore, surveys were conducted during a stigma workshop that may have biased responses. Still, whereas no similar data have been previously reported, some provisional observations are warranted. First, the attitudes and projected behaviours present in other cultures also appear in the Eastern Caribbean. Providers report least warmth towards MSM and IDU. Further investigation should examine the association or these beliefs with providers capacities to create safe environments conducive to HIV/AIDS service delivery. Measures were far from perfect both psychometrically and in their comprehensive incorporation of theory. Future research should emphasize validation of culturally appropriate instruments differentiating felt and enacted expressions of instrumental and symbolic stigma, and incorporating social and institutional constructs. Participants reported warmth towards PLHA, but also tendencies to condemn, and lingering beliefs in transmission myths. That respondents expressed any belief in myths remains alarming, undermining the credibility of participants assessments of their counselling abilities and identifying a target for future interventions. It is remarkable that persons whose jobs are more likely to involve touch are significantly less comfortable around PLHA, and more likely to distance from and condemn them. This might reveal unwarranted provider prejudice or, just as likely, the potential that experience being up close has reinforced providers fears. Although the effect sizes associated with these observations are modest, they tend to support PLHAs frequent reports that providers lack compassion or are disengaged. Implications for practice and research

Continued attention to HIV/AIDS provider stigma interventions remains critical. Mindfulness principles of awareness, acceptance, and action (Rutledge & Abell, 2005) may encourage providers to look deeply into their own experience, to see not only the surface nature of their interactions with PLHA, but also the underlying basis for engaging in ways that are hurtful and contradictory to their intended service goals. The mindfulness approach encourages listening well, and may be best realized by applying principles from exposure or contact models of stigma intervention. Finding ways to challenge providers real or imagined experience of MSM, IDU, or others may require hearing from them in their own words and learning directly from their experiences in seeking services. Finally, researchers and practitioners must work to better understand the implications of providers who are likely to touch being more prone to prejudice and fear than those who are not. Ultimately, reducing stigma will require understanding the disconnect between what we know intellectually, feel emotionally, and are able to transact socially in offering testing, treatment, and care to PLHA.

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