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.

Understanding Health Literacy for People Living With HIV: Locations of Learning.

Health literacy, including people's abilities to access, process, and comprehend health-related information, has become an important component in the management of complex and chronic diseases such as HIV infection. Clinical measures of health literacy that focus on patients' abilities to follow plans of care ignore the multidimensionality of health literacy. Our thematic analysis of 28 focus groups from a qualitative, multisite, multinational study exploring information practices of people living with HIV (PLWH) demonstrated the importance of location as a dimension of health literacy. Clinical care and conceptual/virtual locations (media/Internet and research studies) were used by PLWH to learn about HIV and how to live successfully with HIV. Nonclinical spaces where PLWH could safely discuss issues such as disclosure and life problems were noted. Expanding clinical perspectives of health literacy to include location, assessing the what and where of learning, and trusted purveyors of knowledge could help providers improve patient engagement in care.

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.

90-90-90-Plus: Maintaining Adherence to Antiretroviral Therapies.

Medication adherence is the "Plus" in the global challenge to have 90% of HIV-infected individuals tested, 90% of those who are HIV positive treated, and 90% of those treated achieve an undetectable viral load. The latter indicates viral suppression, the goal for clinicians treating people living with HIV (PLWH). The comparative importance of different psychosocial scales in predicting the level of antiretroviral adherence, however, has been little studied. Using data from a cross-sectional study of medication adherence with an international convenience sample of 1811 PLWH, we categorized respondent medication adherence as None (0%), Low (1-60%), Moderate (61-94%), and High (95-100%) adherence based on self-report. The survey contained 13 psychosocial scales/indices, all of which were correlated with one another (p < 0.05 or less) and had differing degrees of association with the levels of adherence. Controlling for the influence of race, gender, education, and ability to pay for care, all scales/indices were associated with adherence, with the exception of Berger's perceived stigma scale. Using forward selection stepwise regression, we found that adherence self-efficacy, depression, stressful life events, and perceived stigma were significant predictors of medication adherence. Among the demographic variables entered into the model, nonwhite race was associated with double the odds of being in the None rather than in the High adherence category, suggesting these individuals may require additional support. In addition, asking about self-efficacy, depression, stigma, and stressful life events also will be beneficial in identifying patients requiring greater adherence support. This support is essential to medication adherence, the Plus to 90-90-90.

Posttraumatic Stress Disorder and Stressful Life Events Among Rural Women With HIV Disease.

Posttraumatic stress disorder (PTSD) and stressful life events are frequent and distressing problems for women living with HIV (WLWH). Studies have independently focused on the impact of these problems, but little work has examined the relationship between PTSD and stressful life events. Our cross-sectional study examined relationships between PTSD and recent stressful life events in WLWH. A sample of 60 women recruited through HIV community agencies in southeastern North Carolina completed the Stressful Life Events Questionnaire and the PTSD Checklist-Civilian Version (PCL-C). PTSD prevalence was high (43.2%). Two-thirds (66%) reported three or more recent life stressors. Women who experienced a higher number of recent life stressors scored higher on the PCL-C than those with fewer life stressors (p < .001). Recent stressful life events may accelerate PTSD symptoms. Findings underscore the importance of addressing mental health issues in HIV treatment settings. Implications for nursing practice are provided.

Language and Culture in Health Literacy for People Living with HIV: Perspectives of Health Care Providers and Professional Care Team Members.

Low health literacy has been linked to inadequate engagement in care and may serve as a contributor to poor health outcomes among people living with HIV and AIDS. The purpose of this paper was to examine the perspectives of health care providers and professional care team members regarding health literacy in HIV disease. A secondary data analysis was conducted from a qualitative study aimed at understanding factors that help an HIV positive person to manage their HIV disease. Data were collected from sites in Botswana, the US, and Puerto Rico. In the parent study, data were collected through focus group discussions with 135 people living with HIV, 32 HIV health care providers (HCPs), and 39 HIV professional care team members (PCTMs). SPSS was used to analyze quantitative data while ATLAS.ti was used to analyze qualitative data. The findings from analyses of the perspectives of HCPs/PCTMs suggested that linguistic and cultural factors were important themes in the exchange of HIV information between health care providers and PLHIV. These themes included ineffective communication, health seeking behavior, cultural facilitators, and complementary and alternative/traditional healing methods. Thus, this study suggests that language and culture have a major role in health literacy for PLHIV.

American College Students' Views of Depression and Utilization of On-Campus Counseling Services.

BACKGROUND: College students are becoming increasingly depressed; however, many do not attend university counseling to seek help. OBJECTIVES: What is the relationship between young adults' mental health literacy, perceived stigma of depression and treatment, knowledge of treatment benefits and risks, beliefs about alternative therapies, and influence of his or her social network with usage of university counseling? STUDY DESIGN: A survey was administered to N = 107 American undergraduate college students to ascertain the students' understanding of depression and their views of counseling services on campus. RESULTS: Both likelihood of using alternative therapies and perceived discrimination of social network accounted for 18% of the variance for likelihood of participants seeking campus counseling. CONCLUSIONS: When a young adult college student perceives stigma or discrimination of depression from family and friends, then they may be less likely to seek university counseling for depression as well as possible applications with alternative therapies as a favorable option.

Building Trust and Relationships Between Patients and Providers: An Essential Complement to Health Literacy in HIV Care.

Health literacy is important for access to and quality of HIV care. While most models of health literacy acknowledge the importance of the patient-provider relationship to disease management, a more nuanced understanding of this relationship is needed. Thematic analysis from 28 focus groups with HIV-experienced patients (n = 135) and providers (n = 71) identified a long-term and trusting relationship as an essential part of HIV treatment over the continuum of HIV care. We found that trust and relationship building over time were important for patients with HIV as well as for their providers. An expanded definition of health literacy that includes gaining a patient's trust and engaging in a process of health education and information sharing over time could improve HIV care. Expanding clinical perspectives to include trust and the importance of the patient-provider relationship to a shared understanding of health literacy may improve patient experiences and engagement in care.

Dimensions of medication adherence in African Americans with type 2 diabetes in rural North Carolina.

PURPOSE: Personal perceptions and beliefs are one of the least studied patient factors influencing medication adherence. This study explored adherence experiences of rural African Americans with type 2 diabetes in rural southeastern North Carolina. METHODS: Social-ecological theory guided a mixed methods approach. The Morisky Medication Adherence Scale (MMAS) assessed adherence. Clinical variables (HgA1c, fasting glucose levels, current medications) were obtained from medical records. Pearson correlation coefficients examined associations between demographics, clinical variables, and MMAS scores. Narrative data obtained from open-ended questions were analyzed through content analysis. RESULTS: The study enrolled 45 rural residents with longstanding type 2 diabetes (11 years, 31% on insulin). The majority of MMAS scores (63%) reflected low adherence (<6); 30% averaged moderate adherence (6 to <8). Males had poor metabolic control (HgA1c 9.0); female glycemic control was moderately good (7.2). Adherence was associated with having health insurance (r = .594, p = .001) and working for pay (r = .440, p = .05). Participants frequently underused medications without consulting a provider; financial limitations served as a major barrier. Perceptions that diabetes only occurs when "sugar is high" are inconsistent with the course of this chronic disease. CONCLUSIONS: High levels of nonadherence remain a major challenge for nursing care providers in economically distressed rural counties.

Awareness and Knowledge of Child and Adolescent Risky Behaviors: A Parent's Perspective.

PROBLEM: Adolescence is a developmental stage marked by risk-taking and limited comprehension of dangers of risky behaviors. Previous research has focused on adolescents' perspective of risk with little evidence on parents' knowledge regarding risk. METHODS: This qualitative study examined parental knowledge and perspectives of child/teen risk behaviors associated with salvia, sexting, inhalant use/abuse, and self/participant-assisted choking. A sample of 30 parents of children/teens aged 10-17 completed a self-administered survey based on Flanagan's critical incident technique. FINDINGS: Data were analyzed according to Flanagan's guidelines. Two advanced practice nurses determined category reliability with 95% agreement. The survey yielded five categories of parental responses to potential risky behaviors in their child/teen including the following: talking to my children, setting up consequences, confronting the child, seeking help, and talking to others. Although the majority of the parents were aware of newer behaviors, less than one half of the participants reported discussing risks with their child/teen. One third reported that their child knew a friend who was thinking about/tried sexting. One quarter of parents reported that they were not monitoring their child/teen's media use. CONCLUSIONS: Study findings provide important implications for developing an evidence-based education intervention to improve parents' awareness, knowledge, and identification of risk behaviors in their children/teens.

Impact of anxiety and depressive symptoms on perceptions of stigma in persons living with HIV disease in rural versus urban North Carolina.

This analysis examined the relationships between HIV-related stigma, depression, and anxiety in rural and urban sites. Participants were HIV-positive urban (n = 100) and rural (n = 100) adult residents of a US southern state, drawn from a sample for a larger international study of self-esteem and self-compassion. Measures included demographic and health information, the HIV Stigma Scale, the Center for Epidemiology Studies Depression Scale (CES-D), and the Symptom Checklist 90 Revised (SCL-R-90) anxiety scale. Independent sample t-tests showed no significant differences between urban/rural groups on measures of HIV-related stigma, anxiety, or depression, except that rural participants reported greater disclosure concerns (t = 2.11, df = 196, p = .036). Both groups indicated high levels of depression and anxiety relative to published norms and clinically relevant cut-off scores. Hierarchical regression analyses were conducted for the HIV Stigma Scale including its four subscales and total stigma scores. Block 1 (control) contained health and demographic variables known to predict HIV-related stigma. Block 2 included the CES-D and the SCL-R-90, and Block 3 was urban/rural location. Mental health symptom scores contributed a significant amount to explained variance in total stigma scores (5.5%, FΔ = 6.020, p < .01), personalized stigma (4.8%, FΔ = 5.035, p < .01), negative self-image (9.7%, FΔ = 12.289, p < .001), and concern with public attitudes (4.9%, FΔ = 5.228, p < .01), but not disclosure concerns. Urban/rural location made significant additional contributions to the variance for total stigma (1.7%, FΔ = 3.899, p < .05), disclosure concerns (2.6%, FΔ = 5.446, p < .05), and concern with public attitudes (1.9%, FΔ = 4.169, p < .05) but not personalized stigma or negative self-image. Depression scores consistently and significantly predicted perceived stigma total and subscale scores. Findings suggest that mental health symptoms and urban/rural location play important roles in perceived stigma, and treatment implications are presented.

A Cross-Sectional Relationship Between Social Capital, Self-Compassion, and Perceived HIV Symptoms.

CONTEXT: Individual resources of social capital and self-compassion are associated with health behaviors and perceived symptoms, suggesting that both are positive resources that can be modified to improve a person's symptom experience. OBJECTIVES: The aim was to examine the relationship between self-compassion and social capital and its impact on current HIV symptom experience in adult people living with HIV (PLWH). We further explored the impact of age on this relationship. METHODS: We conducted a cross-sectional analysis of 2182 PLWH at 20 sites in five countries. Social capital, self-compassion, and HIV symptom experience were evaluated using valid and reliable scales. To account for inflated significance associated with a large sample size, we took a random sample of 28% of subjects (n = 615) and conducted correlation analyses and zero-inflated Poisson regression, controlling for known medical and demographic variables impacting HIV symptom experience. RESULTS: Controlling for age, sex at birth, year of HIV diagnosis, comorbid health conditions, employment, and income, our model significantly predicted HIV symptom experience (overall model z = 5.77, P < 0.001). Employment status and social capital were consistent, negative, and significant predictors of HIV symptom experience. Self-compassion did not significantly predict HIV symptom experience. For those reporting symptoms, an increase in age was significantly associated with an increase in symptoms. CONCLUSION: Employment and social capital modestly predicted current HIV symptom experience. Social capital can be incorporated into symptom management interventions, possibly as a way to reframe a person's symptom appraisal. This may be increasingly important as PLWH age. The relationship between employment status and HIV symptom experience was significant and should be explored further.

Eating disorders and spirituality in college students.

Associations were examined between eating disorder symptoms and spiritual well-being in a convenience sample of college students. Undergraduate nursing students at a university in a Mid-Atlantic coastal beach community were recruited for the study. A total of 115 students completed the Spiritual Well-Being Scale (SWBS); the Sick, Control, One Stone, Fat, Food (SCOFF) screening questionnaire; and the Eating Attitudes Test (EAT-26). Approximately one quarter of students had positive screens for an eating disorder, and 40% admitted to binging/purging. SWBS scores reflected low life satisfaction and a lack of clarity and purpose among students. A significant association was found between EAT-26 scores and SWBS Existential Well-Being (EWB) sub-scale scores (p = 0.014). SCOFF scores were significantly associated with SWBS EWB scores (p = 0.001). Symptoms of eating disorders were pervasive. Future research that assesses the impact of spiritual factors on eating disorders may help health care providers better understand the unique contributions to the development of eating disorders. [Journal of Psychosocial Nursing and Mental Health Services, 53(1), 30-37.].

Beliefs about diabetes and medication adherence among Lumbee Indians living in rural southeastern North Carolina.

This study assessed personal beliefs about the causes and meaning of having diabetes among the members of the Lumbee Indian tribe living in rural southeastern North Carolina. The sample included 20 males (50%) and 20 females (50%); the mean duration of having diabetes was 9.82 years. The average body mass index (BMI) for females was 34.76 (range, 24.21-55.44), whereas the average BMI for males was 35.10 (range, 22.71-59.71). Ninety percent reported a family history of diabetes. The majority of participants held beliefs that diabetes was a serious and chronic condition and that the disease was amenable to personal control. Participants perceived that diabetic medications were an essential and effective part of their treatment regimen, and they reported greater comfort in adhering to prescribed medication regimens than making long-term lifestyle changes. This study highlights the high prevalence of diabetes among Lumbee Indians and also the need for future studies in this area.

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.

Use of a brief version of the self-compassion inventory with an international sample of people with HIV/AIDS.

The objective of this study was to extend the psychometric evaluation of a brief version of the Self-Compassion Scale (SCS). A secondary analysis of data from an international sample of 1967 English-speaking persons living with HIV disease was used to examine the factor structure, and reliability of the 12-item Brief Version Self-Compassion Inventory (BVSCI). A Maximum Likelihood factor analysis and Oblimin with Kaiser Normalization confirmed a two-factor solution, accounting for 42.58% of the variance. The BVSCI supported acceptable internal consistencies, with 0.714 for the total scale and 0.822 for Factor I and 0.774 for Factor II. Factor I (lower self-compassion) demonstrated strongly positive correlations with measures of anxiety and depression, while Factor II (high self-compassion) was inversely correlated with the measures. No significant differences were found in the BVSCI scores for gender, age, or having children. Levels of self-compassion were significantly higher in persons with HIV disease and other physical and psychological health conditions. The scale shows promise for the assessment of self-compassion in persons with HIV without taxing participants, and may prove essential in investigating future research aimed at examining correlates of self-compassion, as well as providing data for tailoring self-compassion interventions for persons with HIV.

Anxiety symptoms in HIV-infected individuals.

Anxiety is one of the most frequent symptoms recognized by providers who care for persons living with HIV disease (PLWH). This evidence-based review of anxiety and HIV disease includes an overview of anxiety symptoms, their prevalence in PLWH, and co-existing mood and behavioral disorders. Harmful physiologic effects are also highlighted. Valid and reliable clinical measurement tools used for assessing anxiety include the Clinical Diagnostic Questionnaire, the Hamilton Anxiety Scale, the State-Trait Anxiety Scale, the Profile of Mood States, and the Hospital Anxiety and Depression Scale. Evidence supports the use of cognitive behavioral therapy as a recommended intervention for the treatment of anxiety symptoms and/or anxiety disorders in PLWH. Medications for use with more severe and disabling anxiety are discussed, as well as evidence based on expert opinion for anxiety self-management.

Focus on increasing treatment self-efficacy to improve human immunodeficiency virus treatment adherence.

PURPOSE: Human immunodeficiency virus (HIV) treatment self-efficacy is the confidence held by an individual in her or his ability to follow treatment recommendations, including specific HIV care such as initiating and adhering to antiretroviral therapy (ART). The purpose of this study was to explore the potential mediating role of treatment adherence self-efficacy in the relationships between Social Cognitive Theory constructs and self- reported ART adherence. DESIGN: Cross-sectional and descriptive. The study was conducted between 2009 and 2011 and included 1,414 participants who lived in the United States or Puerto Rico and were taking antiretroviral medications. METHODS: Social cognitive constructs were tested specifically: behaviors (three adherence measures each consisting of one item about adherence at 3-day and 30-day along with the adherence rating scale), cognitive or personal factors (the Center for Epidemiology Studies Depression Scale to assess for depressive symptoms, the 12-Item Short Form Health Survey (SF-12) to assess physical functioning, one item about physical condition, one item about comorbidity), environmental influences (the Social Capital Scale, one item about social support), and treatment self-efficacy (HIV Adherence Self-Efficacy Scale). Analysis included descriptive statistics and regression. RESULTS: The average participant was 47 years old, male, and a racial or ethnic minority, had an education of high school or less, had barely adequate or totally inadequate income, did not work, had health insurance, and was living with HIV/acquired immunodeficiency syndrome for 15 years. The model provided support for adherence self-efficacy as a robust predictor of ART adherence behavior, serving a partial mediating role between environmental influences and cognitive or personal factors. CONCLUSIONS: Although other factors such as depressive symptoms and lack of social capital impact adherence to ART, nurses can focus on increasing treatment self-efficacy through diverse interactional strategies using principles of adult learning and strategies to improve health literacy. CLINICAL RELEVANCE: Adherence to ART reduces the viral load thereby decreasing morbidity and mortality and risk of transmission to uninfected persons. Nurses need to use a variety of strategies to increase treatment self-efficacy.