T. Anne Richards

Effect of race and/or ethnicity in use of antiretrovirals and prophylaxis for opportunistic infection: a review of the literature.

Objective. The authors performed a systematic and critical review of published studies investigating potential associations between race and/or ethnicity and use of HIV-related medications, including antiretroviral medications and medications used for prophylaxis of opportunistic infections. Methods. The authors conducted a Web-based search of the University of California MEDLINE/HealthSTAR database for articles published from January 1, 1985, to October 31, 2001. References cited in articles were used to identify potential additional articles for this review. The authors reviewed articles published in peer-reviewed scientific journals that analyzed race/ethnicity as a predictor of antiretroviral or HIV-related prophylactic medication use. Results. The authors identified 28 reports, including: (a) 26 studies published in 1991–2001 that addressed antiretroviral use, spanning data collection periods from 1984 to 1999; (b) 11 studies published in 1994–2001 that addressed prophylaxis for Pneumocystis carinii pneumonia (PCP), reporting on data collected from 1989 to 1998; and (c) three studies published from 1998 to 2001 that addressed prophylaxis for other opportunistic infections, reporting on data collected from 1993 to 1998. Among the studies that addressed antiretroviral use, 14 found a negative association between non-white race and at least one measure of antiretroviral use, three studies found a positive association, and 16 studies found no association; seven studies found mixed results across several measures of antiretroviral use. Only four of 11 studies found a negative association between race/ethnicity and PCP prophylaxis; the remainder found no association. Two out of three studies found a negative association between race/ethnicity and prophylaxis for other infections. Conclusions. There is evidence of racial/ethnic disparities in utilization of antiretrovirals, which are known to be strongly associated with positive HIV health outcomes. It is now imperative for researchers and policy makers to better understand the causes of these disparities, evaluate programs that affect the delivery of HIV medications, and implement program and policy changes necessary to address the disparities.

Identifying barriers to HIV testing: personal and contextual factors associated with late HIV testing

Abstract Late diagnosis of HIV is associated with increased morbidity, mortality, and health care costs. Despite the availability of HIV testing, persons continue to test late in the course of HIV infection. We used the HIV/AIDS case registry of San Francisco Department of Public Health to identify and recruit 41 persons who developed AIDS within 12 months of their HIV diagnosis to participate in a qualitative and quantitative interview regarding late diagnosis of HIV. Thirty-one of the participants were diagnosed with HIV because of symptomatic disease and 50% of the participants were diagnosed with HIV and AIDS concurrently. Half of the subjects had not been tested for HIV prior to diagnosis. Fear was the most frequently cited barrier to testing. Other barriers included being unaware of improved HIV treatment, free/low cost care, and risk for HIV. Recommendations for health care providers to increase early diagnosis of HIV include routine ascertainment of HIV risk behaviors and testing histories, stronger recommendations for patients to be tested, and incorporating testing into routine medical care. Public health messages to increase testing include publicizing that (1) effective, tolerable, and low cost/free care for HIV is readily available, (2) early diagnosis of HIV improves health outcomes, (3) HIV can be transmitted to persons who engage in unprotected oral and insertive anal sex and unprotected receptive anal intercourse without ejaculation and from HIV-infected persons whose infection is well-controlled with antiretroviral therapy, (4) persons who may be infected based upon these behaviors should be tested following exposure, (5) HIV testing information will be kept private, and (6) encouraging friends and family to get HIV tested is beneficial.

Community consultation in HIV prevention research: a study of community advisory boards at 6 research sites.

Objective: To better understand how community advisory boards (CABs) can be used to improve the quality of HIV prevention trials. Design: Data collected included descriptive and epidemiologic reports, ethnographic observations, and face‐to‐face semistructured qualitative interviews with 67 CAB and research team members. Interviews were coded for themes related to community‐based consultation. Setting: The study was conducted at 6 sites of the HIV Prevention Trials Network—Los Angeles, California; Birmingham, Alabama; Philadelphia, Pennsylvania; Harare, Zimbabwe; Lima, Peru; and Chiang Mai, Thailand. Participants: Thirty‐six CAB members and 31 research team members, identified with the assistance of research staff at each site, were recruited for interviews across the 6 sites. Results: Both “broad community” and “population‐specific” models were identified as strategies for CABs to represent potential participants in HIV prevention trials. CABs viewed their role as a bridge between the research team and trial participants. CABs improved prevention clinical trials by assisting in protocol development, recruitment, and retention. In addition, CABs both identified and helped resolve ethical issues in clinical trials. Conclusions: When given time to develop, CABs appear to be a good strategy for building partnerships between researchers and communities for collaborative research projects. This approach has the potential to build sustainable capacity to identify and address ethical issues in research as well as community needs.

Responding to Racial and Ethnic Disparities in Use of HIV Drugs: Analysis of State Policies

Objectives. The objectives of this study were to assess racial/ethnic trends in surveillance data in four states—California, New York, Florida and Texas, identify structural barriers to and facilitators of access to HIV pharmaceuticals by individuals in Medicaid and the AIDS Drug Assistance Program (ADAP), and identify treatment education and outreach efforts responding to the needs of ethnic minority HIV patients. Methods. State surveillance and claims data were used to assess trends by race/ethnicity in AIDS cases and mortality as well as participation rates in Medicaid and ADAP. Key informant interviews with state program administrators and local clinic-based benefit eligibility workers were used to identify social and policy barriers to and facilitators of access to HIV drugs and state strategies for overcoming racial/ethnic disparities. Results. Racial/ethnic disparities in the reduction of AIDS-related mortality were identified in three of the four states studied. Policy barriers included Medicaid requirements for legal immigration status and residency, limits on Medicaid eligibility based on disability requirements, and state-imposed income and benefit limits on ADAP. Social barriers to accessing AIDS medications included lack of information, distrust of government, and HIV-related stigma. State strategies for overcoming disparities included contracting with community-based organizations for treatment education and outreach, the use of regional minority coordinators, and public information campaigns. Conclusions. State policies play a significant role in determining access to HIV drugs, and state policies can be used to reduce racial/ethnic disparities in pharmaceutical access. Overall, eliminating racial/ethnic disparities in access to HIV pharmaceuticals appears to be an achievable goal.

Building community partnerships: case studies of Community Advisory Boards at research sites in Peru, Zimbabwe, and Thailand

Background Differences in resources, knowledge, and infrastructure between countries initiating and countries hosting HIV prevention research trials frequently yield ethical dilemmas. Community Advisory Boards (CABs) have emerged as one strategy for establishing partnerships between researchers and host communities to promote community consultation in socially sensitive research. Purpose To understand the evolution of CABs and community partnerships at international research sites conducting HIV prevention trials. Methods Three research sites of the HIV Prevention Trials Network (HPTN) were selected to include geographical representation and diverse populations at risk for HIV/AIDS — in Lima, Peru; Chitungwiza, Zimbabwe; and Chiang Mai, Thailand. Data collection included review of secondary data, including academic publications and site-specific progress reports; observations at the research sites; face-to-face interviews with CAB members, research staff, and other key informants; and focus groups with study participants. Rapid assessment techniques were used for data analysis. Results Two of the three CABs developed new strategies for community representation in response to new studies. All three CABs expanded their original function and became advocates for broader community interests beyond HIV prevention. The participation and input of community representatives, in response to critical incidents that occurred at the sites over the past five years, helped to solidify partnerships between researchers and communities. Limitations Rapid Assessment is an exploratory methodology designed to provide an understanding of a situation based on the integration of multiple data sources, collected within a short period of time, without a formal examination of transcribed and coded data. Case studies, as a method, are meant to draw out what can be learned from a single case but are not, in the scientific sense, generalizable. Conclusions In developing countries, CABs can be dynamic entities that enhance the HIV research process, assist in responding to issues involving research ethics, and prepare communities for HIV research. Clinical Trials 2008; 5: 147—156. http://ctj.sagepub.com

A Qualitative Examination of a Spiritually-Based Intervention and Self-Management in the Workplace:

This qualitative study assesses the experience of an intervention that provided spiritually based self-management tools to hospital-based nurses. Drawing on wisdom traditions of the major world religions, the eight point program can be practiced by adherents to any religious faith, or those outside of all traditions. Five of eight program points were perceived as directly useful in improving the nurses’ workplace interactions and enhancing fulfillment of compassionate caregiving missions. The findings suggest that this program can be an effective intervention among nurses in dealing with the demands of the healthcare environment and may be a resource for continuing education curricula.

Passage meditation improves caregiving self-efficacy among health professionals: a randomized trial and qualitative assessment.

Relational caregiving skills remain seldom studied in health professionals. We evaluated effects on health professional relational caregiving self-efficacy from an eight-week, 16-hour training in self-management tools. Physicians, nurses, chaplains, and other health professionals were randomized after pretest to treatment (n = 30) or waiting list (n = 31). Training used a previously researched program of Easwaran (1991/1978) derived from spiritual wisdom traditions. Changes were measured using a 34-item caregiving self-efficacy scale. Positive effects were observed at posttest, eight- and 19-week follow-up (ds = .38, .47, .37, all ps < .05), and were mediated by adherence to practices and stress reductions (p < .05), findings also obtained in qualitative interviews (n = 24). Evidence suggests this program enhances health professional caregiving self-efficacy, and may merit inclusion in training curricula.

Subjective Experiences of Prayer Among Women Who Care for Children with HIV

This descriptive study explores the nature, experience, and benefits of private prayer among maternal caregivers of children with HIV. Colloquial and meditative prayer were used frequently, in the course of daily activities. Among other benefits, prayer was used to shift attitudes and emotions toward positive perspectives. Positive states of mind grew out of prayer that nurtured gratitude, faith, trust, and wonder. Prayer was used to gain focus and calm, companionship, collaboration, guidance, and moral direction. Results of the study are directed toward the development of spiritual interventions using private prayer and for the development of sensitivity among health care providers.

Death Rites in the San Francisco Gay Community: Cultural Developments of the Aids Epidemic

This study of rituals of dying and death is based on narrative accounts of fifty-two gay men whose partners died of AIDS in the San Francisco Bay Area between 1991 and 1994. Sixty-seven percent of the deaths occurred at home, 71 percent of the caregiving partners were present at the time of death, and 71 percent of the dying partners chose cremation as a means of disposition. These factors influenced the nature of rituals enacted during the final stage of life, immediately after the death, and in the two months following the death. Culturally unique rituals included division of ashes with multiple distribution sites, multiple memorials, self-designed and delivered religious and secular memorials, and private dispersion of ashes without the use of mortuary services. The rites of death described in these data are reflective of the mobile life style among gay men as well as the drive for freedom and control of their own lives that is characteristic of gay liberation.

Do people who develop AIDS within 12 months of HIV diagnosis delay HIV testing

Objective. Individuals diagnosed with AIDS within 12 months of HIV diagnosis have been considered “late testers.” Prevalence estimates of late testers have been made using HIV/AIDS surveillance data, and high rates of late testing have been reported. However, studies evaluating this definition have not been conducted. We measured the degree of misclassification of delayed testing based on this surveillance definition of late testing. Methods. We used dates of negative HIV tests among people who met this definition of late testing in San Francisco from 2007 to 2008 to reclassify people as “verified non-late testers” if there was a negative HIV test within five years of HIV diagnosis, as “verified late testers” if there were no prior tests or if negative tests were recorded five or more years prior to diagnosis, or as “late-tester status not verified.” We measured misclassification of late-tester status and the prevalence of late testing using the different definitions of late testing. Results. Of the 270 people who developed AIDS within 12 months of HIV diagnosis, we found that 89 (33.0%) were verified late testers, 131 (48.5%) were verified non-late testers, and 50 (18.5%) were unverifiable. Using the surveillance definition (individuals who develop AIDS within 12 months of HIV diagnosis), the prevalence of late testing was 26.3%, whereas it was 9.0% when restricted to individuals verified as late testers. Conclusion. Defining people who develop AIDS within 12 months of HIV diagnosis without taking into consideration the dates of prior negative HIV tests leads to substantial misclassification of late testing.