mental health AIDS

Summer 2005 Newsletter

Casting a Mindful "I" on HIV-Related Stigma

Erving Goffman, whose seminal work "provide[s] the theoretical underpinnings for much of the literature on stigma and stereotyping" (Health Resources and Services Administration, HIV/AIDS Bureau [HRSA/HAB], 2003), defines stigma as "an attribute that is deeply discrediting" and reduces the stigmatized individual "from a whole and usual person to a tainted, discounted one" (Goffman, 1963, p. 3).

Within this framework, highly stigmatized diseases share a number of common attributes:

• The person with the disease is seen as responsible for having the illness
• The disease is progressive and incurable
• The disease is not well understood among the public
• The symptoms cannot be concealed.

HIV infection fits the profile of a condition that carries a high level of stigmatization ... . First, people infected with HIV are often blamed for their condition and many people believe HIV could be avoided if individuals made better moral decisions. Second, although HIV is treatable, it is nevertheless a progressive, incurable disease ... . Third, HIV transmission is poorly understood by some people in the general population, causing them to feel threatened by the mere presence of the disease. Finally, although asymptomatic HIV infection can often be concealed, the symptoms of HIV-related illness cannot. HIV-related symptoms may be considered repulsive, ugly, and disruptive to social interaction ... . (HRSA/HAB, 2003)

The result is the widely documented phenomenon of HIV-related stigma. "HIV-related stigma refers to all unfavorable attitudes, beliefs, and policies directed toward people perceived to have HIV/AIDS as well as toward their significant others and loved ones, close associates, social groups, and communities. Patterns of prejudice, which include devaluing, discounting, discrediting, and discriminating against these groups of people, play into and strengthen existing social inequalities – especially those of gender, sexuality, and race – that are at the root of HIV-related stigma" (HRSA/HAB, 2003).

Research has demonstrated that HIV-related stigma and discriminatory practices can negatively affect condom use, HIV test-seeking behavior, willingness to disclose HIV-positive serostatus, the pursuit of HIV-related health care, the quality of that care, and the solicitation of social support. Stigma and discriminatory practices can also affect the treatment of people living with HIV/AIDS by partners, families, community members, and health care providers (Brown, Macintyre, & Trujillo, 2003).

Not unlike their impacts on the general public, "fear of contagion and fear of death have clear negative effects on health care workers' attitudes toward and treatment of [people living with HIV/AIDS] ... . These attitudes range from mild disdain to refusal to treat to outright abuse ..." (Brown, Macintyre, & Trujillo, 2003, p. 51). Additionally, HIV-related stigma by association can affect informal caregivers (i.e., friends and family) and formal caregivers (i.e., health care workers) alike (Brown, Macintyre, & Trujillo, 2003).

As suggested earlier, "[t]he stigma of [HIV] infection is layered with other stigmas, such as those associated with the routes of transmission (e.g., sex work and injecting drug use) and personal characteristics (e.g., race, religion, ethnicity and gender)" (Reidpath & Chan, 2005, p. 425). By extension, then, the stigma associated with mental illness bears concurrent examination by health care workers, including those who provide mental health services to people living with HIV/AIDS (see sidebar).

The Limitations of Current Research

Brown, Macintyre, and Trujillo (2003) assessed 22 published studies carried out in developed and developing countries in which an assortment of interventions designed to reduce HIV-related stigma were tested.

The target group, setting, type of intervention, measures, and scale of these studies varied tremendously. The majority ... aimed to increase tolerance of [people living with HIV/AIDS] ... among the general population. The remaining studies tested interventions to increase willingness to treat [people living with HIV/AIDS] among health care providers or improve coping strategies for dealing with AIDS stigma among [people living with HIV/AIDS] or at-risk groups. Results suggest some stigma reduction interventions appear to work, at least on a small scale and in the short term, but many gaps remain especially in relation to scale and duration of impact and in terms of gendered impact of stigma reduction interventions. (p. 49)

Triple A Model Suits Clinicians to a T

 For practicing clinicians, the first steps in identifying and addressing HIV-related stigma in others are identifying and addressing stigmatizing attitudes and behaviors in themselves. "Understanding one's own HIV/AIDS biases … [is] crucial to effective and culturally competent social service and health care delivery. ... Despite the best professional intentions across disciplines, ... stigma remains a persistent obstacle to effective prevention and treatment" (Rutledge & Abell, 2005, pp. 195-196).

In a recent paper, Rutledge and Abell (2005) lay out a conceptual model designed "to address the experience and expression of stigma by providers of health care and social services" (p. 187).

We propose a three-step model for responding to HIV/AIDS-related stigma. Based on principles of mindfulness ..., these steps suggest a strategy for better understanding self and situation as a precursor to responding, rather than reacting, to life experiences. ...

Mindfulness principles are derived from Buddhism ... and have, as their overriding concern, the relief of suffering and the dispelling of illusions. ... [T]he practices are essentially techniques for looking deeply into oneself to cultivate compassion and understanding ... .

... As applied to the dynamics of HIV/AIDS provider stigma, our proposed Awareness/ Acceptance/Action Model (AAAM) suggests a framework for intentional response in health care and social service settings. Following mindfulness principles, one would take full account of initial experiences when confronted with a challenge, concentrating first on cultivating awareness. In mindfulness training, this implies two related steps: looking deeply and listening well. (pp. 190-191)

Cultivating Awareness: Looking Deeply and Listening Well

 According to Rutledge and Abell, the first step in cultivating awareness is "looking deeply." "Looking deeply involves paying attention to the full range of one's initial experience so as not to respond prematurely. How am I feeling? What thoughts and associations do I have? How are these impacting my choices about how to deal with this person or situation? ... In the framework of mindfulness, ignoring the full expression of one's initial reactions can set the stage for ill-considered and unintentional reactions that perpetuate discrimination ..., and inhibit the ... provider from effectively performing his or her role" (p. 191).

A related second step in cultivating awareness is "listening well." "Whereas the process of looking deeply centers initially on understanding self in the encounter with others, listening entails paying undistracted attention to a set of cues communicated by another. When attempting to understand the [client's] needs and wishes, the ... provider must track speech content and tone, emotional expression, and body language. In mindfulness terms, ... listening ... emphasizes a readiness to suspend prior considerations and biases, and to learn from another through careful observation" (p. 191).

Additionally, "[e]ducating oneself about the nature of HIV, the routes and means of transmission, the implications for testing, treatment, and caregiving, and the psychosocial complications faced by family, friends, professionals, and community members can enhance the provider's ability to respond based on fact rather than misinformation" (p. 192).

Achieving Acceptance

The next component of this approach centers on "acceptance." In this context, acceptance has several meanings. These include acknowledging:

• The reality of our own biases and fears;
• Contradictions between what we know intellectually and what we feel or enact interpersonally;
• That underestimating our potential to stigmatize people living with HIV/AIDS necessarily detracts from our effort to offer the best possible response; and
• That use of the concepts "us" and "them" to distance ourselves from people living with HIV/AIDS delays acceptance of the pervasiveness of HIV across a range of people and circumstances.

"Coming to grips with the full extent to which 'they' are 'we' calls for a literal transformation of one's identity, and challenges providers to a deeper understanding of self-care. Whereas one might formerly have considered service to be a one-way transaction, it now becomes part-and-parcel of creating health-enhancing community environments" (p. 192).

Taking Action

The final component of this approach involves "action," or the use of awareness and acceptance in developing intentional responses to people living with HIV/AIDS. Rather than falling back on habitually patterned reactions, action signifies the development of responses that are both compassionate and constructive.

o "On the most personal level, individual action can include deepening awareness of one's own prejudices as a prelude for more clear thinking about HIV/AIDS services. How is it that my attitudes are clouding my ability to see this situation as it actually is, rather than how I first imagine[d] it to be? In this sense, self care includes a commitment to preventing one's misconceptions from blocking understanding or clouding emotional responses to the needs of [people living with HIV/AIDS]" (p. 193).

o "On an interpersonal level, action represents the commitment to cultivate a compassionate approach to service provision. This includes respecting others as they are, and striving to listen deeply to their true circumstances before determining a plan of action. Admittedly, this is extremely challenging in the context of limited resources, openly fearful or hostile families and communities, and demanding or needy clients. In this context, the notion of self-care rests on the awareness that the suffering of one inevitably contributes to suffering of all others, and that communities cannot thrive as long as the needs of some are systematically disregarded" (p. 193).

In this way, action "pushes the notion of self-care to its highest level. In the end, AAAM principles recognize that the stigma surrounding HIV/AIDS is deeply rooted both within and across cultures ... and responses failing to take this into account are incomplete. The notion of an activist is inseparable from comprehensive HIV/AIDS responses. In the context of the proposed model, such actions include attending to social policies and institutions that, intentionally or otherwise, pose barriers to necessary and constructive responses" (p. 193).

Not So Fast ...

Rutledge and Abell close by reminding clinicians that, while they "may feel competent in delivering services, they may remain sorely unaware of how their unintended stigmatizing behaviors may be interpreted by vulnerable populations. Although we may consider ourselves 'ready for action,' we may remain unaware of how we evoke stigmatizing responses. It is critical to continually 'look deeper'; the AAAM is not intended to be a short-term experience" (pp. 197-198).

References

Brown, L., Macintyre, K., & Trujillo, L. (2003). Interventions to reduce HIV/AIDS stigma: What have we learned? AIDS Education & Prevention, 15(1), 49-69.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Shuster.

Health Resources and Services Administration, HIV/AIDS Bureau. (2003, May). Stigma and HIV/AIDS: A review of the literature. Rockville, MD: Author. Retrieved April 21, 2005, from the World Wide Web: http://hab.hrsa.gov/publications/stigma/introduction.htm

Reidpath, D.D., & Chan, K.Y. (2005). A method for the quantitative analysis of the layering of HIV-related stigma. AIDS Care, 17(4), 425-432.

Rutledge, S.E., & Abell, N. (2005). Awareness, acceptance, and action: An emerging framework for understanding AIDS stigmatizing attitudes among community leaders in Barbados. AIDS Patient Care & STDs, 19(3), 186-199.

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A Separate Piece (of Work)

Sriram and Jabbarpour (2005) conducted a brief anonymous survey of 50 clinical staff members (including psychiatrists, psychologists, social workers, and nursing staff) at a state psychiatric facility. The investigators used a written questionnaire to pose two simple yes-or-no questions: "If you were to be diagnosed with schizophrenia, would you be uncomfortable talking about it to a nonprofessional (such as friends or acquaintances)?" If respondents answered "Yes," they were then asked whether "it [was] because of stigma?" (p. 610). Thirty respondents (60%) indicated that they would be uncomfortable talking about their diagnosis to friends and acquaintances. Seventeen respondents (34%) indicated that it was because of stigma.

As the authors see it, these findings suggest that "[w]e may be practicing a double standard – expecting consumers and the public to cast off their stigmatizing beliefs but harboring those beliefs ourselves" (p. 610). Building on recommendations made by the President's New Freedom Commission on Mental Health (2003; summarized in a Building Block in the Fall 2004 issue of mental health AIDS ), Sriram and Jabbarpour astutely observe that efforts to eradicate stigmatizing beliefs associated with mental illness should not be confined to the general public and mental health service consumers, but should extend to mental health professionals as well.

References

New Freedom Commission on Mental Health. (2003). Achieving the promise: Transforming mental health care in America. Executive summary. Rockville, MD: DHHS Pub. No. SMA-03-3831.

Sriram, T.G., & Jabbarpour, Y.M. (2005). Are mental health professionals immune to stigmatizing beliefs? [Letter]. Psychiatric Services, 56(5), 610.

– Compiled by Abraham Feingold, Psy.D.

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