A qualitative description of service providers' experiences of ethical issues in HIV care.

BACKGROUND: Managing HIV treatment is a complex multi-dimensional task because of a combination of factors such as stigma and discrimination of some populations who frequently get infected with HIV. In addition, patient-provider encounters have become increasingly multicultural, making effective communication and provision of ethically sound care a challenge. PURPOSE: This article explores ethical issues that health service providers in the United States and Botswana encountered in their interaction with patients in HIV care. RESEARCH DESIGN: A descriptive qualitative design was used to collect data from health service providers and patients using focused group discussions. This article is based on responses from health service providers only. PARTICIPANTS AND CONTEXT: This article is based on 11 focused group discussions with a total sample of 71 service providers in seven US sites and one Botswana site. ETHICAL CONSIDERATIONS: Ethical review boards at all the study sites reviewed the study protocol and approved it. Ethical review boards of the study's coordinating centers, Rutgers University and the University of California at San Francisco, also approved it. The study participants provided a written informed consent to participate. FINDINGS: HIV service providers encountered ethical challenges in all the four Beauchamp and Childress' biomedical ethics of respect for patients' autonomy, beneficence, justice, and nonmaleficence. DISCUSSION: The finding that HIV service providers encounter ethical challenges in their interaction with patients is supported by prior studies. The ethical challenges are particularly prominent in multicultural care and resource-constrained care environments. CONCLUSION: Provision of HIV care is fraught with ethical challenges that tend to pose different issues depending on a given care environment. It is important that strong partnerships are developed among key stakeholders in HIV care. In addition, health service providers need to be provided with resources so they can provide quality and ethically sound care.

Does pre-exposure prophylaxis for HIV prevention in men who have sex with men change risk behaviour? A systematic review.

AIMS AND OBJECTIVES: To review the literature regarding PrEP and sexual behaviour change in MSM. BACKGROUND: Pre-exposure prophylaxis for HIV has been available since 2012. Even so, pre-exposure prophylaxis has not been widely accepted among healthcare providers and men who have sex with men some of whom are convinced that pre-exposure prophylaxis decreases condom use and increases sexually transmitted infections. DESIGN: A systematic review of the state of the evidence regarding the association of pre-exposure prophylaxis with condom use, sexually transmitted infection incidence and change in sexual risk behaviours in men who have sex with men. A structured search of databases resulted in 142 potential citations, but only 10 publications met inclusion criteria and underwent data abstraction and critical appraisal. METHODS: An adapted Cochrane Collaboration domain-based assessment tool was used to critically appraise the methodological components of each quantitative study, and the Mixed Methods Appraisal Tool was used to critically appraise qualitative and mixed-methods studies. RESULTS: Condom use in men who have sex with men using pre-exposure prophylaxis is influenced by multiple factors. Studies indicate rates of sexually transmitted infections in treatment and placebo groups were high. Pre-exposure prophylaxis did not significantly change sexually transmitted infection rates between baseline and follow-up. Reporting of sexual risk improved when questionnaires were completed in private by clients. Our review found that pre-exposure prophylaxis may provide an opportunity for men who have sex with men to access sexual health care, testing, treatment and counselling services. We did not find any conclusive evidence that pre-exposure prophylaxis users increase sexual risk behaviours. CONCLUSION: The perception among healthcare providers that pre-exposure prophylaxis leads to increased sexual risk behaviours has yet to be confirmed. In order to provide effective sexual health services, clinicians need to be knowledgeable about pre-exposure prophylaxis as an HIV prevention tool. RELEVANCE TO CLINICAL PRACTICE: In an era where HIV prevention methods are rapidly improving, strategies for sexually transmitted infection testing, treatment, counselling and prevention remain vital to improve health. All healthcare providers are uniquely positioned to promote sexual health through the dissemination of accurate information.

A multinational qualitative investigation of the perspectives and drivers of exercise and dietary behaviors in people living with HIV.

Globally, people living with HIV (PLWH) are at remarkably high risk for developing chronic comorbidities. While exercise and healthy eating reduce and mitigate chronic comorbidites, PLWH like many others, often fail to engage in recommended levels. We qualitatively examined the perspectives and contextual drivers of diet and exercise reported by PLWH and their health care providers. Two hundred and six participants across eight sites in the United States, Puerto Rico and Botswana described one overarching theme, Arranging Priorities, and four subthemes Defining Health, Perceived Importance of Diet and Exercise, Competing Needs, and Provider Influence. People living with HIV and their health care providers recognize the importance of eating a healthy diet and engaging in regular exercise. Yet there are HIV-specific factors limiting these behaviors that should be addressed. Health care providers have an important, and often underutilized opportunity to support PLWH to make improvements to their exercise and diet behavior.

Clinicians' Views of Hepatitis C Virus Treatment Candidacy With Direct-Acting Antiviral Regimens for People Who Inject Drugs.

BACKGROUND: Direct-acting antivirals (DAAs) are curative in most persons with chronic hepatitis C virus (HCV) infection. However, high cost and concerns about adherence and reinfection may present continued barriers to treatment, particularly for people who inject drugs (PWID). OBJECTIVE: To understand changes in assessments of treatment candidacy, given advances in treatment. METHODS: Clinicians attending the Liver Meeting® in 2014 who reported prescribing HCV treatment in the past three years were invited to complete a survey regarding HCV treatment decisions. Participants assessed their likelihood to treat HCV in PWID in association with time of abstinence from injection drug use and what impacts their decision to provide treatment using interferon and DAAs. RESULTS: 108 clinicians completed the survey; 10% were willing to treat an active PWID (last injection within 30 days) using interferon-containing regimens, and 15% with all-oral regimens. For each increasing time interval of injection abstinence, there was an increase in the odds of a clinician reporting willingness to treat with DAAs (Odds Ratio (OR) 2.57, 95% CI 2.18, 3.03) and with interferon-based treatment (OR 2.22 (95% CI 1.90, 2.61), Reinfection and medication cost were cited as most important concerns when determining candidacy. CONCLUSIONS: A cure is now the norm in HCV treatment, and there is an increasing need to address the barriers to treating PWID, the population with the highest burden of infection. Understanding treatment candidacy assessments is essential to improving uptake. This study provides insight into how clinicians view treatment candidacy in this era of DAAs and can help identify supportive treatment environments and concurrent programs.

Appreciating Reasons for Nonadherence in Women.

Women aged 15-24 years have an HIV infection rate twice that of men the same age. In this study we examined reasons why HIV-infected women taking antiretroviral therapy (ART) report missing HIV medications. Women (N = 206) on ART were 2.2 times more likely to endorse reasons pertaining to forgetfulness versus reasons pertaining to problems taking pills (OR = 2.2, 95% CI = 1.63, 2.94, p <.001). There was a difference between the adherent and nonadherent groups in types of reasons overall (p <.001, 95% CI = -3.82, -2.03). Using a patient-centered approach to understand type of nonadherence (intentional vs. unintentional) may support development of novel interventions.

Weaving dreamcatchers: mothering among American Indian women who were teen mothers.

AIMS: The aim of this study was to explore the mothering experience and practice among reservation-based adult American Indian women who had been adolescent mothers. BACKGROUND: Adolescent American Indian women are at an elevated risk for teen pregnancy and poor maternal/child outcomes. Identifying mothering practices among this population may help guide intervention development that will improve health outcomes. DESIGN: A collaborative orientation to community-based participatory research approach. METHODS: Employing interpretive phenomenology, 30 adult American Indian women who resided on a Northwestern reservation were recruited. In-depth, face-to-face and telephone interviews were conducted between 2007-2008. FINDINGS: Women shared their mothering experience and practice, which encompassed a lifespan perspective grounded in their American Indian cultural tradition. Four themes were identified as follows: mother hen, interrupted mothering and second chances, breaking cycles and mothering a community. Mothering originated in childhood, extended across their lifespan and moved beyond mothering their biological offspring. CONCLUSION: These findings challenge the Western construct of mothering and charge nurses to seek culturally sensitive interventions that reinforce positive mothering practices and identify when additional mothering support is needed across a woman's lifespan.

Self-compassion and risk behavior among people living with HIV/AIDS.

Sexual risk behavior and illicit drug use among people living with HIV/AIDS (PLWHA) contribute to poor health and onward transmission of HIV. The aim of this collaborative multi-site nursing research study was to explore the association between self-compassion and risk behaviors in PLWHA. As part of a larger project, nurse researchers in Canada, China, Namibia, Puerto Rico, Thailand and the US enrolled 1211 sexually active PLWHA using convenience sampling. The majority of the sample was male, middle-aged, and from the US. Illicit drug use was strongly associated with sexual risk behavior, but participants with higher self-compassion were less likely to report sexual risk behavior, even in the presence of illicit drug use. Self-compassion may be a novel area for behavioral intervention development for PLWHA.

Associations between the legal context of HIV, perceived social capital, and HIV antiretroviral adherence in North America.

BACKGROUND: Human rights approaches to manage HIV and efforts to decriminalize HIV exposure/transmission globally offer hope to persons living with HIV (PLWH). However, among vulnerable populations of PLWH, substantial human rights and structural challenges (disadvantage and injustice that results from everyday practices of a well-intentioned liberal society) must be addressed. These challenges span all ecosocial context levels and in North America (Canada and the United States) can include prosecution for HIV nondisclosure and HIV exposure/transmission. Our aims were to: 1) Determine if there were associations between the social structural factor of criminalization of HIV exposure/transmission, the individual factor of perceived social capital (resources to support one's life chances and overcome life's challenges), and HIV antiretroviral therapy (ART) adherence among PLWH and 2) describe the nature of associations between the social structural factor of criminalization of HIV exposure/transmission, the individual factor of perceived social capital, and HIV ART adherence among PLWH. METHODS: We used ecosocial theory and social epidemiology to guide our study. HIV related criminal law data were obtained from published literature. Perceived social capital and HIV ART adherence data were collected from adult PLWH. Correlation and logistic regression were used to identify and characterize observed associations. RESULTS: Among a sample of adult PLWH (n = 1873), significant positive associations were observed between perceived social capital, HIV disclosure required by law, and self-reported HIV ART adherence. We observed that PLWH who have higher levels of perceived social capital and who live in areas where HIV disclosure is required by law reported better average adherence. In contrast, PLWH who live in areas where HIV transmission/exposure is a crime reported lower 30-day medication adherence. Among our North American participants, being of older age, of White or Hispanic ancestry, and having higher perceived social capital, were significant predictors of better HIV ART adherence. CONCLUSIONS: Treatment approaches offer clear advantages in controlling HIV and reducing HIV transmission at the population level. These advantages, however, will have limited benefit for adherence to treatments without also addressing the social and structural challenges that allow HIV to continue to spread among society's most vulnerable populations.

A 7-item version of the fatigue severity scale has better psychometric properties among HIV-infected adults: an application of a Rasch model.

PURPOSE: To examine the psychometric properties of the 9-item Fatigue Severity Scale (FSS) using a Rasch model application. METHODS: A convenience sample of HIV-infected adults was recruited, and a subset of the sample was assessed at 6-month intervals for 2 years. Socio-demographic, clinical, and symptom data were collected by self-report questionnaires. CD4 T-cell count and viral load measures were obtained from medical records. The Rasch analysis included 316 participants with 698 valid questionnaires. RESULTS: FSS item 2 did not advanced monotonically, and items 1 and 2 did not show acceptable goodness-of-fit to the Rasch model. A reduced FSS 7-item version demonstrated acceptable goodness-of-fit and explained 61.2% of the total variance in the scale. In the FSS-7 item version, no uniform Differential Item Functioning was found in relation to time of evaluation or to any of the socio-demographic or clinical variables. CONCLUSION: This study demonstrated that the FSS-7 has better psychometric properties than the FSS-9 in this HIV sample and that responses to the different items are comparable over time and unrelated to socio-demographic and clinical variables.

Patterns of morning and evening fatigue among adults with HIV/AIDS.

AIMS AND OBJECTIVES: Describe patterns of morning and evening fatigue in adults with HIV and examine their relationship to demographic and clinical factors and other symptoms. BACKGROUND: Most studies of HIV-related fatigue assess average levels of fatigue and do not address its diurnal fluctuations. Patterns of fatigue over the course of the day may have important implications for assessment and treatment. DESIGN: A cross-sectional, correlational design was used with six repeated measures over 72 hours. METHOD: A convenience sample of 318 HIV-infected adults was recruited in San Francisco. Socio-demographic, clinical and symptom data were collected with questionnaires. CD4+ T-cell count and viral load were obtained from medical records. Participants completed a four-item version of the Lee Fatigue Scale each morning and evening for three consecutive days. Participants were grouped based on their diurnal pattern of fatigue (high evening only, high morning only, high morning and evening and low morning and evening). Group comparisons and logistic regression were used to determine the unique predictors of each fatigue pattern. RESULTS: The high evening fatigue pattern was associated with anxiety and the high morning pattern was associated with anxiety and depression. The morning fatigue pattern showed very little fluctuation between morning and evening, the evening pattern showed the largest fluctuation. The high morning and evening pattern was associated with anxiety, depression and sleep disturbance and this group reported the most fatigue-related distress and interference in functioning. CONCLUSIONS: These results provide initial evidence for the importance of assessing the patient's daily pattern of fatigue fluctuation, as different patterns were associated with different symptom experiences and perhaps different aetiologies. RELEVANCE TO CLINICAL PRACTICE: Different fatigue patterns may benefit from tailored intervention strategies. Management of depressive symptoms could be tested in patients who experience high levels of morning fatigue.

Unhealthy substance-use behaviors as symptom-related self-care in persons with HIV/AIDS.

Unhealthy substance-use behaviors, including a heavy alcohol intake, illicit drug use, and cigarette smoking, are engaged in by many HIV-positive individuals, often as a way to manage their disease-related symptoms. This study, based on data from a larger randomized controlled trial of an HIV/AIDS symptom management manual, examines the prevalence and characteristics of unhealthy behaviors in relation to HIV/AIDS symptoms. The mean age of the sample (n = 775) was 42.8 years and 38.5% of the sample was female. The mean number of years living with HIV was 9.1 years. The specific self-reported unhealthy substance-use behaviors were the use of marijuana, cigarettes, a large amount of alcohol, and illicit drugs. A subset of individuals who identified high levels of specific symptoms also reported significantly higher substance-use behaviors, including amphetamine and injection drug use, heavy alcohol use, cigarette smoking, and marijuana use. The implications for clinical practice include the assessment of self-care behaviors, screening for substance abuse, and education of persons regarding the self-management of HIV.

A State of the Science on HIV Prevention Over 40 Years Among Black and Hispanic/Latinx Communities.

ABSTRACT: We present a state of the science on HIV behavioral prevention interventions in Black and Hispanic/Latinx communities. The purpose of this article is threefold: (a) highlight the early documented underlying social and political barriers that constrained interventions to prevent new HIV infections; (b) address the structural inequities in HIV prevention and treatment; and (c) describe the need for increasing HIV multilevel prevention interventions that support greater HIV testing and pre-exposure prophylaxis uptake. To address HIV prevention, multilevel interventions that address individual, structural, and social level components have demonstrated more sustainable outcomes. Implications for research and clinical practice include (a) updating antiquated curricula in nursing, medicine, and public health that perpetuate racial, structural-level inequities and (b) increasing the pipeline for Black and Hispanic/Latinx persons to pursue research or clinical-focused doctorate degrees.

The impact of taking or not taking ARVs on HIV stigma as reported by persons living with HIV infection in five African countries.

AIM: This study examined the impact of taking or not taking antiretroviral (ARV) medications on stigma, as reported by people living with HIV infection in five African countries. DESIGN: A two group (taking or not taking ARVs) by three (time) repeated measures analysis of variance examined change in reported stigma in a cohort sample of 1454 persons living with HIV infection in Lesotho, Malawi, South Africa, Swaziland, and Tanzania. Participants self-reported taking ARV medications and completed a standardized stigma scale validated in the African context. Data were collected at three points in time, from January 2006 to March 2007. Participants taking ARV medications self-reported a mean CD4 count of 273 and those not taking ARVs self-reported a mean CD4 count of 418. RESULTS: Both groups reported significant decreases in total HIV stigma over time; however, people taking ARVs reported significantly higher stigma at Time 3 compared to those not taking ARVs. DISCUSSION: This study documents that this sample of 1454 HIV infected persons in five countries in Africa reported significantly less HIV stigma over time. In addition, those participants taking ARV medications experienced significantly higher HIV stigma over time compared to those not taking ARVs. This finding contradicts some authors' opinions that when clients enroll in ARV medication treatment it signifies that they are experiencing less stigma. This work provides caution to health care providers to alert clients new to ARV treatment that they may experience more stigma from their families and communities when they learn they are taking ARV medications.

Does "asymptomatic" mean without symptoms for those living with HIV infection?

Throughout the history of the HIV epidemic, HIV-positive patients with relatively high CD4 counts and no clinical features of opportunistic infections have been classified as "asymptomatic" by definition and treatment guidelines. This classification, however, does not take into consideration the array of symptoms that an HIV-positive person can experience long before progressing to AIDS. This short report describes two international multi-site studies conducted in 2003-2005 and 2005-2007. The results from the studies show that HIV-positive people may experience symptoms throughout the trajectory of their disease, regardless of CD4 count or classification. Providers should discuss symptoms and symptom management with their clients at all stages of the disease.

Understanding Native women's health: historical legacies.

PURPOSE: Theoretical underpinnings of two theories are examined for their applicability in guiding practice and research when understanding Native American women's health outcomes. METHOD: Published studies testing two independent theories, historical trauma and weathering, are reviewed. Key theoretical concepts that are applicable in the study of Native women and understanding their intergenerational heritage of injustice and cultural context are discussed. RESULTS: The authors infer underlying assumptions and definitions of both theories and present a hypothetical diagram blending both theories. CONCLUSION: By understanding historical legacies and the surrounding context, researchers and clinicians can develop knowledge to improve and enhance optimal health outcomes and life opportunities for Native women.

Sleep disturbances in women with HIV or AIDS: efficacy of a tailored sleep promotion intervention.

BACKGROUND: Poor sleep is a frequent complaint of persons with HIV infection. OBJECTIVES: To pilot test a tailored sleep promotion intervention protocol based on principles of sleep hygiene in a convenience sample of 30 HIV seropositive women. METHODS: At baseline and 1 week after implementing the intervention, sleep was assessed by self-report measures and wrist actigraphy. Objective sleep measures include total sleep time, number of awakenings, and sleep efficiency, as well as level of daytime activity, 24-hr activity rhythm, and amount of sleep during the day. RESULTS: Prior to the intervention, women averaged 6.4 hr (SD = 1.99) of sleep, and 67% (n = 20) of the sample napped more than 30 min per day. After allowing 1 week to implement sleep hygiene principles to promote healthy sleep behaviors, there was a significant improvement in their perception of sleep and a significant change in their 24-hr activity rhythm. This involved more activity and less napping during the day. DISCUSSION: Although there was minimal change in objective measures of nighttime sleep for the group as a whole, those with initiation insomnia and maintenance insomnia benefited most from the intervention. These findings support the utility of a tailored sleep promotion intervention for women who are HIV positive to address their unique form of sleep disturbance.

HIV symptoms.

People with HIV/AIDS are a vulnerable group whose symptoms can seriously affect their quality of life. HIV/AIDS symptoms can result from the disease itself, from secondary complications of the disease, or from side-effects of highly active antiretroviral therapy (HAART) and other medications related to comorbidities. HIV symptoms are the single most important indicators for patients and practitioners. Symptoms prompt patients to seek medical attention and provide health care providers with essential clues about changes in health status and quality of life. Despite increased recognition of the importance of addressing symptoms among people with HIV/AIDS, few studies have examined the management of HIV symptoms. This chapter introduces HIV symptoms, reports on the methods of review, provides an overview of contextual issues including the literature on symptoms, issues related to symptom measures, theoretical foundations on symptom management, HIV-specific measures, non-HIV-specific measures, translation of findings into practice, and implications for future research and policy.

Symptom cluster of fatigue and depression in HIV/AIDS.

Fatigue and depression are among the most frequently rated symptoms of people with HIV/AIDS. This study aimed: (1) to describe severity of fatigue and depression in an outpatient sample (n=372) of men and women with HIV/AIDS, (2) to evaluate sensitivity and discriminant validity for two fatigue and three depression scales and (3) to investigate whether fatigue and depression are conceptually distinct concepts or reciprocally dependent. This was a secondary analysis of a descriptive, cross-sectional study with convenience sampling. Fatigue was assessed with the fatigue factor score of the revised Sign and Symptom Checklist HIV (SSC-HIVrev), and the fatigue scale of the Self-Care Symptom Management for Living with HIV/AIDS Scale SCSMS-F). Depression was assessed with the depression factor score of the SSC-HIVrev, the depression scale of the SCSMC-D and the Center for Epidemiologic Studies Depression Scale (CES-D). Most of the participants were male (67%), with a mean age of 39.9 years, and of African American decent (73%). Dependent on the instrument, the average fatigue severity was moderate and the average depression severity was moderate to severe. Women experienced higher fatigue and depression severity scores than men. The scores on the same instruments for fatigue and depression showed significant correlations (SSC-HIVrev fatigue and depression r=0.62; SCSMS fatigue and depression r=0.64), indicating that both concepts are closely related. Patients seeking help for fatigue and/or depression should always be evaluated for both symptoms. Future research is needed to identify dimensions in different fatigue and depression scales in order to differentiate the impact of both symptoms on people living with HIV/AIDS.

Cytokine polymorphisms are associated with daytime napping in adults living with HIV.

OBJECTIVE/BACKGROUND: Daytime napping longer than one hour has been associated with an increased risk for all-cause mortality. Associations between cytokine polymorphisms and daytime napping in chronic illnesses such as HIV, however, have not been well described. The purpose of this study was to examine cytokine polymorphisms associated with long daytime napping in adults living with HIV. METHODS: A cross-sectional analysis was conducted using a convenience sample of 257 adults living with HIV. Daytime napping was assessed with wrist actigraphy data collected over three days. Participants categorized as long nappers (≥60 min) were compared to short nappers and non-nappers (<60 min). Single nucleotide polymorphisms (SNPs) for 15 candidate genes involved in cytokine signaling were analyzed. Genes included: interferon-gamma (IFNG), IFNG receptor 1 (IFNGR1), interleukins (IL1B, IL1R, IL1R2, IL2, IL4, IL6, IL8, IL10, IL13, IL17A), nuclear factors of kappa light polypeptide gene enhancer in B cells (NFKB1 and NFKB2), and tumor necrosis factor alpha (TNFA). RESULTS: After adjusting for relevant demographic and clinical characteristics, long daytime napping was associated with 12 SNPs from seven genes: 1) IFNG rs2069728; 2) IL1B rs1143642, rs1143627, and rs16944; 3) IL2 rs2069763; 4) IL6 rs4719714, rs1554606, and rs2069845; 5) IL17A rs3819024 and rs8193036; 6) NFKB1 rs4648110; and 7) NFKB2 rs1056890. CONCLUSIONS: Cytokine genetic variations may have a role in physiological regulation of daytime napping as well as nocturnal sleep. Cytokine polymorphisms associated with long daytime napping could help identify adults with HIV who may benefit from targeted therapeutic interventions.