Faculty Bibliography

RATIONALE: We propose narrative evidence-based medicine as a necessary elaboration of the NIH translational research roadmap. The roadmap defined two complex obstacles, T1 and T2, to the progress of research from the 'bench' or basic laboratory science to the 'bedside' or clinical application, the traversal of which requires emergence of complex transformative relationships between the parties and stakeholders. It fails to encompass patient interactions, hesitancies and alliances with medical care. AIMS AND OBJECTIVES: We suggest a third transformative or translational step, T3, that begins at the point that practitioners have themselves elected to adopt and recommend strategies and interventions based on high-level evidence and guidelines. In our model, T3 encompasses all aspects of care that converge on the practitioner-patient relationship and ultimately determine what therapies and choices patients actually make regarding their care. RESULTS: Learning from the biopsychosocial model, patient-centred care and shared decision making while attending to the ethical injunction of Emmanuel Levinas to know the other, we have developed a medical practice and theory that unites the local and specific concerns of narrative medicine with the generalizability and power of evidence-based medicine. CONCLUSIONS: We offer innovative approaches to study, teach and improve the therapeutic intimacy and integrative effectiveness of the practitioner-patient relationship.

The sexual behaviors of non-gay identified men who have sex with men and women (MSMW) who do not disclose their same-sex behavior to their female partners (referred to by some as men "on the down low") were examined, including the potential for these men to serve as a "bisexual bridge" for HIV and STD acquisition and transmission. Self-reported sexual behavior data were collected as part of an exploratory study of an ethnically diverse (41% African American, 35% Latino, 22% White, and 2% Asian) sample of 46 non-gay identified, non-disclosing MSMW in New York City. Men reported significantly more male than female sexual partners, but more frequent sex with females. The prevalence and frequency of unprotected sex did not differ significantly between male and female partners in the past 3 months. Men reported risk behavior more often with steady female and steady male partners (e.g., wives, girlfriends, boyfriends) than with more casual male and female partners (regular uncommitted partners, one-night stands). Men, especially African American/Black men, were significantly less likely to report receptive sexual behaviors with men than insertive behaviors. Unprotected sex was common with male and female partners in the past 3 months (e.g., 35% of anal sex with men; 50% of vaginal sex). Indeed, 22% of the sample (38% of those who had both recent males and female partners) reported both unprotected vaginal sex and unprotected anal sex with a male partner during the past 3 months. Although the study was limited by a small convenience sample, the findings suggest that non-gay identified non-disclosing MSMW are at risk for the acquisition and transmission of HIV and STDs, and may serve as a potential bridge, suggesting the need for further research and intervention targeting this unique population.

In the post-1996 era, the effectiveness of antiviral therapies (such as highly active antiretroviral therapy [HAART]), which transformed HIV/AIDS into a more manageable disease, raised expectations that the disease's stigma would decrease. The authors compared focused-interview data from a pre-HAART (1994 to 1996) and a HAART-era (2000 to 2003) sample of African American, Puerto Rican, and White women living with HIV/AIDS to identify changes in stigma experiences and suggest reasons for continued stigmatization. In both eras, general stereotypes about HIV/AIDS, as well as gender- and race-related stereotypes about the disease, were identified. Internalizing any of these stereotypes was a necessary and sufficient condition for feeling stigmatized. Instances of enacted stigmatization were more frequent and intense in the pre-HAART era. Nevertheless, misinformation and irrational fears of contagion, which triggered stigmatizing behavior, persisted into the HAART era. This analysis revealed that although enacted stigmatization has decreased slightly, felt stigma remains a primary adaptational challenge facing women with HIV/AIDS.

Despite the high prevalence of sexual inactivity, decreased sexual desire, and poor sexual satisfaction documented among HIV-infected individuals, women's experiences of sexuality following HIV-infection and their reasons for these sexual changes remain little examined. Further, the potential effects of the availability of highly active antiretroviral therapy (HAART) medications on their sexuality have not been explored among women living with HIV/AIDS. To examine these issues, focused interviews were conducted with two samples of women living with HIV/AIDS: one before the advent of HAART and a second matched sample interviewed after HAART became widely available. Women in both the pre-HAART and HAART eras frequently discussed decreased sexual activity, a loss of sexual interest, and a diminished sense of sexual attractiveness following their HIV infection. In addition, they reported a number of reasons for why they had discontinued sexual activity or were no longer interested in sex, including anxiety about HIV transmission, a loss of freedom and spontaneity during sex, fears of emotional hurt, not wanting the hassle of sexual relationships, a loss of sexual interest, and a diminished sense of sexual attractiveness. However, the types of changes in their sexuality women described, nor the reasons offered for these changes, did not differ between women in the pre-HAART and HAART eras. The findings suggest that therapeutic intervention may be needed by some HIV-infected women to overcome difficulties in resuming healthy sexual relationships following their HIV diagnosis and offer insights into the potential content of such intervention efforts.

To examine potential changes in attitudes toward antiviral medication since the advent of highly active antiretroviral therapy (HAART), focused interviews were conducted with two samples of women living with HIV/AIDS; one in the pre-HAART era (1994-1996) and a second matched sample in the HAART era (2000-2003). Women in the pre-HAART era held highly negative attitudes toward antiviral medications, perceived them as ineffective with few benefits and viewed side effects as intolerable. In contrast, women in the HAART era were less likely to report negative attitudes, which were balanced by more frequent reports of perceived benefits and more likely to view side effects as temporary and manageable. African American women in both eras were more likely to hold negative attitudes and less likely to perceive benefits than White and Puerto Rican women. These findings suggest that views of antiviral medication have improved since the advent of HAART, but that negative attitudes and side-effect concerns remain which should be addressed in interventions to promote treatment acceptance and adherence.

Older adults (age 50 +) are less likely to be tested for HIV and are diagnosed at a later disease stage than younger individuals. To examine the barriers and facilitating factors to testing in this age group, interview data from 35 older men and women who tested HIV positive at age 50 or older were analysed. Participants described a variety of pathways to testing, related to gender, sexual orientation, drug use, and era of the epidemic. Older gay and bisexual men described three trajectories: proactively seeking out testing, delaying testing due to fear and hopelessness, and denying exposure to HIV. Heterosexual drug users and their partners followed two trajectories, depending on the phase of the epidemic: (1) delay due to the lack of knowledge or perceived risk for infection, and (2) delay due to psychological barriers and drug use, despite recognizing their risk. Finally, heterosexual non-drug-users were unaware of their risk. Across risk groups, physical symptoms and encouragement from health care providers were the primary triggers that facilitated testing. The finding that risk perception was a necessary, but not sufficient, condition for undergoing HIV testing suggests that interventions need to reduce barriers and encourage earlier HIV testing among older adults, in addition to promoting risk awareness.

HIV-positive individuals have been encouraged by public health officials to disclose their HIV status to sexual partners. In deciding what to do, however, they must weigh what they see as the potential costs and benefits of disclosing or not disclosing. In the present report we examine the reasons women offer for disclosing or not disclosing their serostatus and the reactions to that disclosure among two matched samples of HIV-infected women. The first sample was interviewed in 1994-1996, before the widespread availability of HAART; while the second sample was interviewed from 2000-2003 after these medications were widely in use. The findings reveal striking similarities between the two time periods in women's reasons for sharing or not sharing their status with partners, and the reactions to disclosure they experienced. The reconceptualization of AIDS as a chronic illness, rather than an acute fatal one, did not appear to have diminished women's felt responsibility to share their diagnosis with potential sexual partners nor their fear that disclosure would be met with rejection. The data revealed that disclosure remains a highly stressful event for HIV-infected women and that they experience considerable emotional suffering as a result of the diminished sense of self-worth and physical attractiveness brought about by their diagnosis. These findings suggest that intervention efforts toward reducing the stigmatization of HIV/AIDS and for assisting women to manage the stress of disclosure and non-disclosure and address women's feelings of self-worth continue to be needed despite the advent of HAART.

Fatigue, a symptom with many possible causes, is highly prevalent among persons with HIV/AIDS. The causal attributions HIV+ individuals make for their fatigue are important because they largely guide the coping responses they use to manage it. In a study to better understand the symptom appraisal process among 100 HIV+ older adults (50+), 49 participants discussed in depth their experience with fatigue. Many participants felt confused, at least initially, about the source of their fatigue, although most offered their HIV disease as a possible cause. However, many who did so also believed it was caused in part by other, generally less threatening causes, such as age, overexertion, or excess weight. HIV medications and other symptoms or comorbidities were also frequently cited as causes of fatigue. Health care professionals and HIV+ peers often helped to shape or reinforce participants' attributions for their fatigue.

Fatigue, a common symptom among persons living with HIV/AIDS, is often underreported and undertreated. However, given fatigue's pervasive effects on well-being and functioning, the identification of its physiologic and psychological causes and strategies to alleviate it are important to patients' quality of life. As part of a study to understand better how HIV-positive middle-aged and older adults (50+) manage common symptoms, 49 participants discussed in depth their experience with fatigue. Most engaged in both self-care activities and sought the assistance of a health care professional. Frequent strategies included dietary changes, vitamins, modification of routines, rest, exercise, and prescribed medications for anemia, Vitamin B(12) deficiency, or testosterone deficiency. Complementary and alternative medicine (e.g., acupuncture, massage, herbal remedies, special juices) was also commonly used. Participants often used multiple strategies to alleviate their fatigue, possibly because of their tendency to attribute it to multiple causes. These HIV-positive older adults were also apt to view fatigue as an indirect indicator of their overall health status and immune functioning. This may explain why many of the coping strategies they used could be considered approaches to improving their overall health status as a means to increasing their energy levels. Health care professionals can play an important role in helping HIV-positive individuals manage their fatigue. The majority of participants tried to implement the coping suggestions offered by health care professionals, as well as those from family, friends, and support group members.