Depressive symptoms, self-esteem, HIV symptom management self-efficacy and self-compassion in people living with HIV.

The aims of this study were to examine differences in self-schemas between persons living with HIV/AIDS with and without depressive symptoms, and the degree to which these self-schemas predict depressive symptoms in this population. Self-schemas are beliefs about oneself and include self-esteem, HIV symptom management self-efficacy, and self-compassion. Beck's cognitive theory of depression guided the analysis of data from a sample of 1766 PLHIV from the USA and Puerto Rico. Sixty-five percent of the sample reported depressive symptoms. These symptoms were significantly (p ≤ 0.05), negatively correlated with age (r = -0.154), education (r = -0.106), work status (r = -0.132), income adequacy (r = -0.204, self-esteem (r = -0.617), HIV symptom self-efficacy (r = - 0.408), and self-kindness (r = - 0.284); they were significantly, positively correlated with gender (female/transgender) (r = 0.061), white or Hispanic race/ethnicity (r = 0.047) and self-judgment (r = 0.600). Fifty-one percent of the variance (F = 177.530 (df = 1524); p < 0.001) in depressive symptoms was predicted by the combination of age, education, work status, income adequacy, self-esteem, HIV symptom self-efficacy, and self-judgment. The strongest predictor of depressive symptoms was self-judgment. Results lend support to Beck's theory that those with negative self-schemas are more vulnerable to depression and suggest that clinicians should evaluate PLHIV for negative self-schemas. Tailored interventions for the treatment of depressive symptoms in PLHIV should be tested and future studies should evaluate whether alterations in negative self-schemas are the mechanism of action of these interventions and establish causality in the treatment of depressive symptoms in PLHIV.

A multinational study of self-compassion and human immunodeficiency virus-related anxiety.

AIM: This study represents an initial effort at examining the association between the construct of self-compassion and human immunodeficiency virus (HIV)-related anxiety in a multinational population with HIV disease. BACKGROUND: Previous studies have found that self-compassion is a powerful predictor of mental health, demonstrating positive and consistent linkages with various measures of affect, psychopathology and well-being, including anxiety. METHODS: Cross-sectional data from a multinational study conducted by the members of the International Nursing Network for HIV Research (n = 1986) were used. The diverse sample included participants from Canada, China, Namibia, the United States of America and the territory of Puerto Rico. Study measures included the anxiety subscale of the Symptom Checklist-90 instrument, the Brief Version Self-Compassion Inventory and a single item on anxiety from the Revised Sign and Symptom Checklist. FINDINGS: Study findings show that anxiety was significantly and inversely related to self-compassion across participants in all countries. We examined gender differences in self-compassion and anxiety, controlling for country. Levels of anxiety remained significantly and inversely related to self-compassion for both males (P = 0.000) and females (P = 0.000). Levels of self-compassion and anxiety varied across countries. CONCLUSIONS: Self-compassion is a robust construct with cross-cultural relevance. A culturally based brief treatment approach aimed at increasing self-compassion may lend itself to the development of a cost effective adjunct treatment in HIV disease, including the management of anxiety symptoms.

Mediators of antiretroviral adherence: a multisite international study.

The purpose of this study was to investigate the effects of stressful life events (SLE) on medication adherence (3 days, 30 days) as mediated by sense of coherence (SOC), self-compassion (SCS), and engagement with the healthcare provider (eHCP) and whether this differed by international site. Data were obtained from a cross-sectional sample of 2082 HIV positive adults between September 2009 and January 2011 from sites in Canada, China, Namibia, Puerto Rico, Thailand, and US. Statistical tests to explore the effects of stressful life events on antiretroviral medication adherence included descriptive statistics, multivariate analysis of variance, analysis of variance with Bonferroni post-hoc analysis, and path analysis. An examination by international site of the relationships between SLE, SCS, SOC, and eHCP with adherence (3 days and 30 days) indicated these combined variables were related to adherence whether 3 days or 30 days to different degrees at the various sites. SLE, SCS, SOC, and eHCP were significant predictors of adherence past 3 days for the United States (p = < 0.001), Canada (p = 0.006), and Namibia (p = 0.019). The combined independent variables were significant predictors of adherence past 30 days only in the United States and Canada. Engagement with the provider was a significant correlate for antiretroviral adherence in most, but not all, of these countries. Thus, the importance of eHCP cannot be overstated. Nonetheless, our findings need to be accompanied by the caveat that research on variables of interest, while enriched by a sample obtained from international sites, may not have the same relationships in each country.

Prevalence, correlates, and self-management of HIV-related depressive symptoms.

Depressive symptoms are highly prevalent yet undertreated in people living with HIV/AIDS (PLHAs). As part of a larger study of symptom self-management (N=1217), this study examined the prevalence, correlates, and characteristics (intensity, distress, and impact) of depressive symptoms, and the self-care strategies used to manage those symptoms in PLHAs in five countries. The proportion of respondents from each country in the total sample reporting depressive symptoms in the past week varied and included Colombia (44%), Norway (66%), Puerto Rico (57%), Taiwan (35%), and the USA (56%). Fifty-four percent (n=655) of the total sample reported experiencing depressive symptoms in the past week, with a mean of 4.1 (SD 2.1) days of depression. Mean depression intensity 5.4 (SD 2.7), distressfulness 5.5 (SD 2.86), and impact 5.5 (SD 3.0) were rated on a 1-10 scale. The mean Center for Epidemiologic Studies Depression Scale score for those reporting depressive symptoms was 27 (SD 11; range 3-58), and varied significantly by country. Respondents identified 19 self-care behaviors for depressive symptoms, which fell into six categories: complementary therapies, talking to others, distraction techniques, physical activity, medications, and denial/avoidant coping. The most frequently used strategies varied by country. In the US sample, 33% of the variance in depressive symptoms was predicted by the combination of education, HIV symptoms, psychological and social support, and perceived consequences of HIV disease.

HIV illness representation as a predictor of self-care management and health outcomes: a multi-site, cross-cultural study.

Research has shown that the perceptions that form the cognitive representation of an illness (illness representation) are fundamental to how persons cope with illness. This study examined the relationship of illness representation of HIV with self-care behavior and health outcomes. Data were collected at 16 sites in the United States, Taiwan, Norway, Puerto Rico and Colombia via survey. HIV seropositive participants (n = 1,217, 31% female, 38% African-American/Black, 10% Asian/Pacific Islander and 26% White/Anglo) completed measures of illness representation based on the commonly accepted five-component structure: identity, time-line, consequences, cause, and cure/controllability (Weinman et al. 1996, Psychology and Health, 11, 431-445). Linear regression analyses were conducted to investigate relationships among illness representation, self-care behaviors and quality-of-life outcomes. Components of illness representation were associated with self-care and health outcomes, indicating that the cognitive representation of HIV has consequences for effective illness management. For example, perception that there is little that can be done to control HIV was significantly associated with fewer and less effective self-care activities (F = 12.86, P < .001) and poorer health function in the domain of quality-of-life (F = 13.89, P < .001). The concept of illness representation provides a useful framework for understanding HIV symptom management and may be useful in directing development of effective patient-centered interventions.

Unhealthy behaviours for self-management of HIV-related peripheral neuropathy.

The prevalence of peripheral neuropathy is frequent in HIV disease and is often associated with antiretroviral therapy. Unhealthy behaviours, particularly substance-use behaviours, are utilized by many HIV-positive individuals to manage neuropathic symptoms. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of unhealthy behaviours to self-manage peripheral neuropathy in HIV disease. Sociodemographic and disease-related correlates and unhealthy behaviours were examined in a convenience sample of 1,217 respondents who were recruited from data collection sites in several US cities, Puerto Rico, Colombia, and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n=450) identified a variety of unhealthy self-care behaviours including injection drug use, oral drug use, smoking cigarettes and alcohol ingestion. Specific unhealthy behaviours that participants reported to alleviate peripheral neuropathy included use of marijuana (n=67), smoking cigarettes (n=139), drinking alcohol (n=81) and street drugs (n=30). A subset of those individuals (n=160), who identified high levels of neuropathy (greater than five on a scale of 1-10), indicated significantly higher use of amphetamines and injection drug use in addition to alcohol use and cigarette smoking. For participants from Norway, substance use (using alcohol: 56%) was one of the most frequent self-management strategies. Implications for clinical practice include assessment and education of persons with HIV for self-care management of the complex symptom of peripheral neuropathy.

Symptom management and self-care for peripheral neuropathy in HIV/AIDS.

Peripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviral therapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of peripheral neuropathy in HIV disease, sociodemographic and disease-related correlates and self-care strategies. A convenience sample of 1,217 respondents was recruited from data collection sites in several US cities, Puerto Rico, Colombia and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n=450) identified 20 self-care behaviors including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Ratings of frequency and effectiveness were also included. An activities checklist summarized into five categories of self-care behaviors including activities/thoughts, exercise, medications, complementary therapies and substance was used to determine self-care behaviors. Taking a hot bath was the most frequent strategy used by those with peripheral neuropathy (n=292) and received the highest overall rating of effectiveness of any self-management strategies included in this study at 8.1 (scale 1-10). Other self-care strategies to manage this symptom included: staying off the feet (n=258), rubbing the feet with cream (n=177), elevating the feet (n=236), walking (n=262), prescribed anti-epileptic agent (n=80), prescribed analgesics (n=84), over-the-counter medications (n=123), vitamin B (n=122), calcium supplements (n=72), magnesium (n=48), massage (n=156), acupuncture (n=43), reflexology (n=23) and meditation (n=80). Several behaviors that are often deemed unhealthy were included among the strategies reported to alleviate peripheral neuropathy including use of marijuana (n=67), cigarette smoking (n=139), drinking alcohol (n=81) and street drugs (n=30).

The impact of meaning in life and life goals on adherence to a tuberculosis medication regimen in South Africa.

SETTING: Out-patient tuberculosis (TB) clinics in Durban, South Africa. OBJECTIVE: Health care provider concerns about persons with active TB defaulting on medications led to a study of adherence among persons receiving anti-tuberculosis therapy and, specifically, the relationships between meaning in life, life goals, sense of coherence, social support, symptom presence and intensity, and adherence in individuals diagnosed with TB. DESIGN: A cross-sectional, descriptive design was used to gather self-reported data from TB-infected individuals who were enrolled in out-patient clinics. Data were collected from 159 Zulu and/or English-speaking persons who agreed to participate in the study. RESULTS: A significant relationship was found between higher life goals and adherence to TB treatment (P = 0.027). Analysis of variance revealed that higher meaning in life ratings were significantly associated with older age (P = 0.007). Having children and children living in the same household were significantly associated with low meaning in life ratings (P = 0.006 and P < or = 0.001, respectively), indicating that these individuals were more concerned about basic matters of home and sustenance. CONCLUSIONS: The results of this study indicate that meaning in life and life goals may be useful for identifying individuals who will require additional support in adhering to anti-tuberculosis treatment.

Strategies for self-management of HIV-related anxiety.

This study examines the frequency and effectiveness of commonly used strategies for self management of anxiety in an international sample of 502 participants from Norway (n=42, 8%), Taiwan (n=35, 7%), and the US (n=426, 85%). An activities checklist summarized into five categories of self-care behaviours including activities/thoughts, exercise, medications, complementary therapies, and substance use determined self-care behaviours. Ratings of frequency and effectiveness for each self-care activity were also included. Praying received the highest overall rating of effectiveness of any self-management strategies included in this study at 8.10 (scale 1 to 10), followed by meditation (7.37), exercising (7.32), using relaxation techniques (7.22), cooking (6.98), and walking (6.90). An analysis of effectiveness scores for each self-care strategy by country reflected a wide variation. The three most effective anxiety self-care strategies reported by participants from Norway included exercise (7.31), walking (6.96), and reading (6.44). Highest ratings of effectiveness by participants from Taiwan included talking with others with HIV (6.0), attending support groups (6.0), and exercising (6.0). US participants allocated highest ratings of effectiveness to complementary/alternative therapies, including praying (8.10), meditating (7.43), and using relaxation techniques (7.35). Regardless of the country, watching television and talking with family and friends were the two most frequently reported strategies. These strategies for self-management of HIV-related anxiety are important for clinicians to be aware of in the care of persons with HIV/AIDS.

Self-care management for neuropathy in HIV disease.

Peripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviral therapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of peripheral neuropathy in HIV disease, the self-care strategies, and sources of information for self-care utilized by the sample. A convenience sample of 422 respondents was recruited from an Internet web-based site developed by the University of California, San Francisco International HIV/AIDS Research Network and from five geographic data collection sites (Boston, New York City, San Francisco and Paterson in the USA, and Oslo, Norway). Results of the study indicated that respondents with peripheral neuropathy identified 77 self-care behaviours including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Sources of information included health care providers, informal networks and media sources.

Issues in cross-cultural quality-of-life research.

PURPOSE: To examine cross-cultural measurement of quality of life (QOL) and issues to consider in adapting quality-of-life instruments. ORGANIZING CONSTRUCT: Health-related quality of life. METHODS: Review of the literature on cross-cultural QOL using the Cumulative Index to Nursing & Allied Health Literature (CINAHL), 1982 to February 2000, and Medline, 1966 to May 2000, databases. FINDINGS: Use of research instruments beyond the samples with which they were initially tested, particularly if the new samples are cross-cultural, presents considerable challenges. The findings indicate consideration of these problems: phenomenon of interest, cross-cultural versus cross-national, salience, conceptual equivalence, cultural hegemony versus cultural validity, cultural equivalence versus verbal equivalence, fidelity versus appropriateness, privacy versus disclosure, appropriateness of format, and resource utilization for translation. Although the literature indicates increased discussion of theoretical, conceptual, and operational approaches to measuring cross-cultural QOL, problems continue in adapting instruments from one culture to another. CONCLUSIONS: Many issues about cross-cultural QOL were identified. By addressing these issues, researchers can develop appropriately translated and validated quality-of-life instruments to advance knowledge about cross-cultural QOL.

The use of complementary and alternative therapies.

The National Center for Complementary and Alternative Medicine (NCCAM) was created by Congress in 1998 as part of the National Institutes of Health. As interest in alternative and complementary therapies among healthcare providers and consumers has increased in recent years, the NCCAM has provided research funding to determine the efficacy of various types of unconventional treatments. The Center also provides research training and acts as a clearing-house for information dissemination to practitioners and the general public. Inclusion and exclusion criteria for alternative and complementary medicine as defined by the NCCAM are provided. Interest in these non-traditional treatments will likely continue to increase over the next few years. The NCCAM is playing a vital role as it provides avenues to determine how these therapies can lead to enhanced quality of life for individuals as we enter the new millennium.

Long-term continuum of care for people living with HIV/AIDS.

The introduction of highly active antiretroviral therapy (HAART), has created new options for those infected and affected by human immunodeficiency virus/ acquired immunodeficiency syndrome (HIV/AIDS). Most HIV-infected persons no longer die within months of diagnosis. There is now a long-term continuum of care that can end in misery or relative comfort. The introduction of palliative care in concert with curative therapies throughout the disease trajectory should be the standard of care for all persons. At the very least, the introduction of palliative care and hospice at the end of life is important to the holistic care of persons living with HIV/AIDS.

Relationships between perception of engagement with health care provider and demographic characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS.

The purpose of this descriptive, correlational study was to examine the relationships between perception of engagement with health care provider and demographic characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS. The convenience sample of 707 non-hospitalized persons receiving health care for HIV/AIDS was recruited from seven U.S. sites. All measures were self-report. Perception of engagement with health care provider was measured by the newly developed Engagement with Health Care Provider scale. Adherence to therapeutic regimen included adherence to medications, provider advice, and appointments. Health status was measured by the Medical Outcomes Study Short Form 36 (MOS SF-36), Living with HIV scale, CD4 count, and length of time known to be HIV-positive. There were no significant relationships between engagement with health care provider and age, gender, ethnicity, and type of health care provider. Subscales of the MOS SF-36 and Living with HIV explained a significant, but modest amount of the variance in engagement. Clients who were more engaged with their health care provider reported greater adherence to medication regimen and provider advice. Clients who missed at least one appointment in the last month or who reported current or past injection drug use were significantly less engaged.

Predictors of perception of cognitive functioning in HIV/AIDS.

This is a descriptive, correlational study of the predictors of perceived cognitive functioning. The convenience sample of 728 nonhospitalized persons receiving health care for HIV/AIDS was recruited from seven sites in the United States. All measures were self-reported. Self-perception of cognitive functioning, the dependent variable, was composed of three items from the Medical Outcomes Study HIV scale: thinking, attention, and forgetfulness. Data related to age, gender, ethnicity, education, injection drug use, CD4 count, and length of time known to be HIV-positive were collected on a demographic questionnaire. The scale from the Sign and Symptom Checklist for Persons with HIV Disease was used to measure self-reported symptoms. Data were analyzed using hierarchical multiple regression analysis. Predictors of perception of cognitive functioning explained a total of 36.3% of the variance. Four blocks--person variables (1.5%) (age, gender, education, history of injection drug use), disease status (2.3%), symptom status (26.5%), and functional status (5.4%)--significantly contributed statistically to the total variance. Among those individuals who completed the questions related to depression (n = 450), 28% of the variance in cognitive functioning was explained by this variable. The findings in this multi-site study indicate that symptom status explained the largest amount of variance in perceived cognitive functioning. Early identification of cognitive impairment can result in appropriate clinical interventions in remediable conditions and in the improvement of quality of life.

Delirium in patients with cancer at the end of life.

PURPOSE: Delirium is a common and distressing syndrome seen in patients with advanced cancer. Behavioral manifestations of delirium, such as agitation, may result in medical intervention, stress to family caregivers, and inpatient hospice admission. The purpose of this study was to examine the frequency, characteristics, and presumed causes of delirium in patients with advanced cancer. DESCRIPTION OF STUDY: Records of all patients with cancer who were admitted to an inpatient hospice facility in 1995 were reviewed retrospectively (N = 210). Patients were classified as delirious based on the clinical judgment of the admitting physician. RESULTS: Delirium was the third most common reason for admission (20%). Male gender (P = .04) and the presence of a primary or metastatic brain tumor (P = .03) were significant risk factors for delirium, while advanced age and primary or metastatic liver, lung, or bone cancer were not. Resolution of the agitation, the most disruptive symptom of delirium, occurred in 69% of patients before death or discharge. CLINICAL IMPLICATIONS: Delirium is common in hospice patients with cancer and is an important cause of family distress and increased cost of care. The recognition of early clinical signs and predisposing factors should facilitate prompt diagnosis. Appropriate intervention is usually successful in alleviating the most distressing symptoms of delirium.

Validation of the Sign and Symptom Check-List for Persons with HIV Disease (SSC-HIV).

Symptom management for persons living with HIV disease is recognized as an extremely important component of care management. This article reports the validation of a new sign and symptom assessment tool designed to assess the intensity of HIV-related symptoms using two samples (study 1: n=247; study 2: n=686) of people living with HIV disease. Study 1 data were collected between 1994 and 1996 before the initiation of highly active antiretroviral therapy (HAART). Study 2 data were collected between 1997 and 1998 after the wide adoption of HAART therapy. The initial version of the Sign and Symptom Check-List for Persons with HIV Disease (SSC-HIV) included 41 signs and symptoms. This scale was submitted to a principal components factor analysis with a varimax rotation. The final solution reports six factors explaining 68.9% of the variance. The six symptom clusters (factors), the number of items in the factor, and the Cronbach alpha reliability estimates were: malaise/weakness/fatigue (six items, alpha=0.90); confusion/distress (four items, alpha=0.90); fever/chills (four items, alpha=0.85); gastrointestinal discomfort (four items, alpha=0. 81); shortness of breath (three items, alpha=0.79); and nausea/vomiting (three items, alpha=0.77). These six factors have strong reliability estimates and a stable factor structure that supports the construct validity of the 26-item instrument. Additional evidence supports the concurrent validity of the scale as well as its sensitivity to change over time. The final version of the SSC-HIV is a 26-item scale available for use by clinicians and researchers to measure the patient's self-report of HIV-related signs and symptoms.

Predictors of self-reported adherence in persons living with HIV disease.

This study examined the relationships between the five dimensions of the Wilson and Cleary model of health-related quality of life and three self-reported adherence measures in persons living with HIV using a descriptive survey design. Data collection occurred in seven cities across the United States, including university-based AIDS clinics, private practices, public and for-profit hospitals, residential and day-care facilities, community-based organizations, and home care. The three dependent adherence measures studied were "medication nonadherence," "follows provider advice," and "missed appointments." The sample included 420 persons living with HIV disease with a mean age of 39 years of which 20% were women and 51% were white; subjects had a mean CD4 count of 321 mm3. HIV-positive clients with higher symptom scores, particularly depression, were more likely to be nonadherent to medication, not to follow provider advice, and to miss appointments. Participants who reported having a meaningful life, feeling comfortable and well cared for, using their time wisely, and taking time for important things were both more adherent to their medications and more likely to follow provider's advice. No evidence was found demonstrating any relationship between adherence and age, gender, ethnicity, or history of injection drug use. These findings support the need to treat symptoms, particularly depression, and to understand clients' perceptions of their environment as strategies to enhance adherence. A limitation of this study was that adherence was measured only by self-report; however, the study did expand the concept of adherence in HIV care beyond medication adherence to include following instructions and keeping appointments.

Origins: an American perspective.

The birth of hospice in the United States was fostered by the work of Florence Wald, former Dean of the Yale School of Nursing. Her activities are emblematic of the dedication of many other hospice volunteers who made hospice a reality in the United States. Nurturer, humanitarian and visionary, we salute Florence Wald and the many others who have contributed to the change in how end-of-life care is rendered in the United States. Congratulations and well done.