Health-related quality of life in patients with lower rectal cancer after sphincter-saving surgery: a prospective 6-month follow-up study.

This longitudinal descriptive study examined whether rectal cancer patients report changes in health-related quality of life (HRQOL) over a 6-month period after different types of sphincter-saving surgery (SSS): intersphincteric resection (ISR), ultra-low anterior resection (ULAR) and low anterior resection (LAR). It also compares HRQOL among the three groups of patients. Seventy-three patients from two hospitals in Japan completed questionnaires on HRQOL and defecation symptoms immediately before surgery and 1 and 6 months afterwards. Results showed that ISR patients had significantly worse HRQOL scores than ULAR and LAR patients and more defecation symptoms that persisted during the 6 months post-SSS. Thus, patients undergoing ISR require psychological and social support, including skills in competent self-management, during the early post-operative period. Furthermore, defecation problems substantially influence HRQOL. The first month post-SSS is particularly challenging. The assumption that HRQOL is better after SSS compared to living with a permanent stoma might not be valid.

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).

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.

Age-appropriate HIV prevention messages for older adults: findings from focus groups in New York State.

The Emerging Issues Committee of the New York State HIV Prevention Planning Group identified that prevention messages were not including persons 50 and older and that 15 percent of the newly reported AIDS cases in 1997 in New York were in this age group. Recognizing that there may be unique needs in targeting prevention messages for this age group, a consultant conducted five focus groups throughout the state to speak with people to determine what they identified as unique themes related to HIV prevention for this age group.

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.

Correlates of sleep quality in persons with HIV disease.

This study used the Symptom Experience dimension of the revised UCSF Symptom Management Conceptual model to examine correlates of sleep quality in HIV-infected persons. According to this model, person, health/illness, and environment categories influence perception of a symptom. The average person in the sample (N = 58) reported being HIV-infected for 8.5 years and was 46 years old, not working, and a person of color. Depending on the level of data, either chi square or Pearson correlations were computed between the person, health/illness, and environment categories and the dependent variable, sleep quality, as measured by the Pittsburgh Sleep Quality Index. Person variables significantly related to sleep quality were employment status, trait anxiety, and general well-being. Health/illness variables significantly related to sleep quality were length of time living with HIV disease and five health status measures (depressive symptoms, state anxiety, symptom severity, daytime sleepiness, and functional status). The environmental variables associated with sleep quality were sleeping alone, having a separate bedroom, and sleeping in a noisy room. Correlates of better sleep quality are positive general well-being, less anxious personality trait and emotional state, less daytime sleepiness, less depressive symptoms, and less symptom severity. Correlates of worse sleep quality are impaired functional status and longer duration of living with HIV disease.

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.

Exploring the clinical nurse specialist role in an AIDS community-based organization.

Although community-based organizations (CBOs) serving persons living with HIV/AIDS have proliferated, the role of advanced practice nurses in these CBOs has not been articulated. This article describes four components of the clinical nurse specialist (CNS) role in a CBO: a nutrition program for ambulatory persons living with HIV disease. The CNS educates clients about strategies to improve and maintain their health and manage complex treatment regimens in daily lives that are often chaotic and limited by severe financial constraints. As a member of a multidisciplinary team, the CNS provides a healthcare perspective in policy development and staff education for a predominantly social service agency.

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.

Two cultures, one epidemic.

HIV infection is a global epidemic, and health care providers involved in HIV/AIDS care must be aware of how communities with different cultures, values, beliefs, and resources are coping. This article describes a 3-month volunteer experience with the Shona people of Zimbabwe, Africa. Similarities and uniqueness between an urban setting in an industrial country and a rural environment in a developing country are explored.

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.

Exploring the complexity of sleep disturbances in persons with HIV/AIDS.

Sleep disturbances are influenced by physiological, psychological, and environmental factors. Many persons living with HIV/AIDS manifest a variety of sleep disorders. Although completion of a brief sleep assessment can be helpful to determine the presence of a sleep problem, more in-depth investigation is necessary when sleep problems are reported. This pilot work used an open-ended interview guide developed from elements of Hauri's comprehensive sleep history. A convenience sample of six HIV-positive clients was interviewed during January 1997. In addition to answering open-ended questions about sleep-wake patterns, participants completed the Pittsburgh Sleep Quality Index and a personal characteristics form. HIV-severity information was obtained from the medical record. A complete sleep evaluation includes a thorough history and physical assessment, with a special focus on underlying pathology and medication use such as over-the-counter drugs, vitamins and herbal products, and mood-altering substance use. Treatment plans can include instruction about a variety of cognitive behavioral strategies. The nurse plays a major role in assessing, evaluating, teaching, and referring, which can contribute to identification of strategies that can improve quality of life.

Revisiting how the Chronic Illness Trajectory Framework can be applied for persons living with HIV/AIDS.

Over 7 years ago, the Chronic Illness Trajectory Framework was applied to persons living with HIV/AIDS (Nokes, 1991). This article addresses how new information about HIV-infection disease can be interpreted through the Chronic Illness Trajectory Framework. At the time of the first writing, HIV infection was diagnosed indirectly through the presence of antibodies and one or two medications were available to treat the infection. Currently, direct viral testing is used clinically and 18 medications, which can be used in a variety of combinations, should be available by the end of 1998. Although mortality rates from AIDS dropped sharply with the advent of new therapies, current anecdotal reports are indicating that some people, who initially felt much better on the medications, are now developing viral resistance and life-threatening toxicities. Unfortunately, it seems that as we approach the 21st century, information about HIV continues to evolve and another update will then be needed.

Development of an HIV educational needs assessment tool.

The learning needs of persons with HIV/AIDS continue to grow more complex as new treatments are developed and HIV disease shifts from being a terminal to a chronic illness. Clinicians could use a simple tool to help them to focus on what clients think is important to know about living with HIV/AIDS. This article describes the development of the HIV Educational Needs Assessment Tool (HENAT). HIV+ persons (N = 363) who were receiving health care in a variety of ambulatory and institutional settings participated in this research during 1990 and 1993-1994. Factor analysis was used to shorten the instrument into a form that could be used in any nurse/client interaction. Principal axis factor extraction and varimax rotation deleted 16 items. The remaining 34 items were grouped into six factors: Treatments, Entitlements, Relationships, Preventing Infections, Social Support, and Working. Cronbach's alphas were computed and results ranged from .70 to .88. Two month test-retest correlations for a subset of participants (n = 195) ranged from .54 to .67. HENAT can be used (a) to examine differences in perception of learning needs between clients with HIV disease and their health care providers, (b) to measure shifts in learning needs over time, (c) to relate HIV-specific learning needs to length of time living with HIV disease, (d) to give clients an opportunity to assess their learning needs, and (e) as part of a larger intervention study that evaluates the effectiveness of patient education.