Faculty Bibliography

BACKGROUND: Patients retained in HIV care but not on antiretroviral therapy (ART) represent an important part of the HIV care cascade in the United States. Even in an era of more tolerable and efficacious ART, decision making in regards to ART offer and uptake remains complex and calls for exploration of both patient and provider perspectives. We sought to understand reasons for lack of ART usage in patients meeting the Health Resources Services Administration definition of retention as well as what motivated HIV primary care appointment attendance in the absence of ART. METHODS AND FINDINGS: We conducted a qualitative study consisting of 70 in-depth interviews with ART-naive and ART-experienced patients off ART and their primary care providers in two urban safety-net HIV clinics in San Francisco and New York. Twenty patients and their providers were interviewed separately at baseline, and 15 dyads were interviewed again after at least 3 mo and another clinic visit in order to understand any ART use in the interim. We applied dyadic analysis to our data. Nearly all patients were willing to consider ART, and 40% of the sample went on ART, citing education on newer antiretroviral drugs, acceptance of HIV diagnosis, social support, and increased confidence in their ability to adhere as facilitators. However, the strength of the provider recommendation of ART played an important role. Many patients had internalized messages from providers that their health was too good to warrant ART. In addition, providers, while demonstrating patient-centered care through sensitivity to patients experiencing psychosocial instability, frequently muted the offer of ART, at times unintentionally. In the absence of ART, lab monitoring, provider relationships, access to social services, opiate pain medications, and acute symptoms motivated care. The main limitations of this study were that treatment as prevention was not explored in depth and that participants were recruited from academic HIV clinics in the US, making the findings most generalizable to this setting. CONCLUSIONS: Provider communication with regard to ART is a key focus for further exploration and intervention in order to increase ART uptake for those retained in HIV care.

Adolescents may come from family settings that heighten their vulnerability to early sexual initiation, promiscuity and sexual exploitation. Using qualitative data, we illustrated how early life and family circumstances including neglectful or dysfunctional parenting, sexual abuse, and unstable housing placed young women on a risk trajectory for HIV infection. Five representative cases from a sample of 26 adolescent and young adult HIV-infected females (ages 16-24) who participated in a study about the disease-related adaptive challenges they faced are discussed. Study participants were recruited from five New York City adolescent HIV clinics that provided comprehensive specialty medical and ancillary social services to adolescents and young adults with the disease. The findings revealed that these young women's unmet need for love, protection, and feeling valued left them vulnerable to exploitive relationships with men who were often significantly older and resulted in their HIV infection.

CONTEXT: Fatigue is a prevalent, debilitating, and often disruptive symptom for cancer patients. Yet, it remains inadequately understood and managed, especially among late middle-aged and older patients with advanced disease. Few studies have explored fatigue qualitatively, and almost none have focused on patients' attributions for this subjective and multidimensional symptom. OBJECTIVES: Our objectives were to 1) examine the attributions patients aged 55 years or older with advanced cancer made for their fatigue and how they arrived at these attributions and 2) understand how patients' attributions affect how they contend with fatigue, including communication with health care providers. METHODS: We conducted qualitative in-depth interviews with 35 patients aged 55 years or older on their experiences with fatigue. Patients had a variety of cancers and were at stages IV or late III of the disease. Interviews were thematically coded and analyzed. RESULTS: Two main themes emerged: 1) Cancer-related treatment was the master and often the sole attribution patients made for their fatigue. Patients making this attribution expressed certainty about its accuracy and seemed less distressed about the symptom. 2) Multiple causes of fatigue, typically a combination of cancer, treatment, and nonthreatening causes (e.g., older age, overexertion, or anemia), also were offered by some. Patients seemed to resist identifying disease severity as a cause and appeared motivated to normalize and minimize the symptom, thus decreasing its threatening impact. CONCLUSION: Patients' causal attributions for fatigue had a profound effect on their physical and psychological well-being, their communication with providers, and their integration of the symptom into their lives.

Despite the high prevalence of hepatitis C virus (HCV) infection among injection drug users also infected with human immunodeficiency virus (HIV), and the synergistic adverse effect of the two diseases on patients' health and survival, research on the clinical management of these patients and particularly the low uptake of HCV therapy is limited. We conducted qualitative interviews with 17 HIV providers from two urban public hospitals. We discovered that the limitations of the current state of medical knowledge, the severe side effects of HIV and HCV therapies, and the psychosocial vulnerability of HIV/HCV-coinfected patients combined with their resistance to becoming informed about HCV posed significant challenges for providers. To contend with these challenges, providers incorporated key dimensions of patient-centered medicine in their practice, such as considering their patients' psychosocial profiles and the meaning patients assign to being coinfected, and finding ways to engage their patients in a therapeutic alliance.

The realization that many persons with HIV/AIDS are subjected to multiple layers of stigmatization because they belong to socially deviant and disenfranchised groups (e.g., injection drug users, racial/ethnic and sexual minorities) accounts for an increasing interest in the phenomenon of stigma layering. The stigma associated with hepatitis C virus (HCV) has also been conceptualized as layered. However, researchers have overlooked the fact that HCV adds a layer to the HIV stigma and vice versa. Qualitative interviews with 132 HIV/HCV-coinfected patients were analyzed to explore how they experience the two layers of stigma. Most participants hierarchically ordered the stigmas associated with each disease and regarded HIV as the more stigmatizing of the two. A small number perceived HIV and HCV as equally stigmatizing. The impact of the hierarchical and nonhierarchical ordering of the two stigmas on coinfected patients' felt and enacted stigmatization is explored and implications for interventions are discussed.

Although the attributions individuals make about what causes their physical symptoms are known to influence their care seeking and self-care behaviours, much less is known about the strategies they use to arrive at these attributions. The strategies employed to understand the causes of their symptoms were investigated using in-depth interviews with 100 late middle-age and older adults with HIV/AIDS in New York City. The data revealed that most participants actively sought to explain their symptoms. The explanatory strategies identified included: relying upon illness or medication representations, lay beliefs about the body and ageing, invoking pre-existing vulnerabilities, engaging in lay experimentation, social comparison processes, considering temporal ordering and consulting authoritative sources. While most of them offered a single cause for their symptoms, some offered more complex multi-causal explanations. These findings provide understanding into the reasons why some older adults with HIV/AIDS misattribute symptoms resulting in delay in care or care over-utilisation, suggesting the need for patient education.

Abstract Understanding the sexual risk behaviors of youths living with HIV/AIDS is critical to secondary prevention of HIV. As part of a larger qualitative study of youths living with HIV, in-depth interviews were conducted with 27 African American and Latino, HIV-infected young men who have sex with men, aged 16-24 years, living in New York City. The study explored the role of substance use, the social-sexual-environmental, and psychological contexts in which sexual risk behaviors occurred. Since learning of their HIV infection, the majority of participants had reduced their risky sexual behaviors; however, a subset (26%) of participants continued to have unprotected sex, in most cases with multiple partners. Substance use, the social environmental context of the sexual encounter, the psychological impact of HIV on sexual behavior, and partner characteristics were associated with high-risk sexual behaviors in this group. Among high-risk participants, factors associated with risky sexual behaviors clustered, with 57% reporting two or more factors. More intensive interventions are needed for this subset of youths living with HIV, including assessment and treatment for substance use and mental health issues, strategies for stress reduction, and partner interventions

CONTEXT: Although the experience of physical symptoms can adversely influence emotional well-being, the specific emotional reactions experienced in response to specific symptoms are not well understood. OBJECTIVES: To examine the emotional impact of diarrhea among HIV+ late middle-age and older adults (i.e., age 50 years and older). METHODS: In-depth interviews were conducted with 100 participants, of whom 29 had experienced diarrhea and spoke about the emotional impact it had had on them. RESULTS: Three principal themes emerged: 1) I don't control the diarrhea, the diarrhea controls me; 2) I feel ashamed, dirty, and tainted; and 3) I fear what the diarrhea is doing to me and what it means. Their inability to control when and where their diarrhea would occur was a great source of emotional distress for participants. Almost all feared the possibility of fecal incontinence while out in public and the humiliation it would bring. To avoid this, many greatly restricted their time outside the home or where they would go to ensure access to a restroom. Others felt shame and perpetually "dirty" even when not dealing with a bout of diarrhea. Many also worried about the effect the diarrhea would have on their health and whether it signaled progression to end-stage disease. CONCLUSION: The data strongly support the need to aggressively manage diarrhea in HIV-infected adults, as the social and emotional consequences can be profound. When it cannot be effectively controlled, physicians and social service agencies should address the isolation by providing home-based opportunities for social support and interaction.

Using qualitative data, this article explored the circumstances leading to HIV testing among 59 HIV-infected adolescents recruited from New York City HIV clinics. Results showed differences between the heterosexual women and the gay and bisexual men. Most of the young women were tested during routine health care or self-initiated tests, and most were asymptomatic when they tested positive. Their testing decisions were sometimes based on assessments of their boyfriends' risk behaviors rather than their own. Many young men were experiencing symptoms of illness when they tested positive, and about half of them recognized their symptoms as related to HIV and sought tests. Some young men expressed fear of learning about positive test results, which delayed their testing, and some providers did not initially recommend HIV testing for young men who presented with symptoms. The article concludes that consideration of these gender and sexual orientation-related concerns can facilitate HIV testing among adolescents.