Balancing disfigurement and fear of disease progression: Patient perceptions of HIV body fat redistribution.

This study was conducted to identify and describe the perceived morphologic changes of body fat redistribution and related distress among persons taking combination antiretroviral therapy. Six focus group interviews were conducted in four different US cities with men and women (n = 58) who reported antiretroviral-related symptoms of body fat loss and/or gain. Interview data were audiotaped, transcribed verbatim and systematically analysed using inductive techniques. Physical discomfort and impairment and psychological and social distress were reported across sex, sexual orientation and geographic subgroups. While participants acknowledged that antiretroviral drugs were keeping them alive, there was tension between the desire for life-sustaining treatment and optimal quality of life. Some participants engaged in harmful heath behaviours in an attempt to control bodily changes (e.g. non-adherence to antiretroviral regimen). Participants feared that fat loss represented disease progression and worried that visible changes would lead to unintentional disclosure of their HIV status. Although a potential source of support, healthcare providers were commonly perceived as ignoring and, in so doing, discrediting patient distress. Participants recognised the limitations of current lipodystrophy treatment options, yet a cure for the syndrome seemed less important to them in the short term than simply being listened to and the powerful, but oblique sources of distress addressed.

HIV vaccine efficacy trial participation: men who have sex with men's experiences of risk reduction counselling and perceptions of risk behaviour change.

Qualitative interviews were conducted with 35 men who have sex with men, enrolled in the world's first phase III HIV vaccine efficacy trial at five US sites, regarding their risk reduction counselling experiences and their perceptions of its impact on risk behaviour. Respondents ranged in age from 20 to 58 years and were predominately white (71.4%) in racial/ethnic origin. Systematic qualitative analysis revealed that a positive counselling experience meant having good rapport with clinic staff. Differences in attitudes toward counselling were related to either a personal approach of balancing an enjoyable sex life with safe sex behaviours (balancing risks) or accepting the consequences of risky sexual behaviour rather than making changes (risk homeostasis). Respondents seeking to balance risks indicated that they saw themselves engaging in safer sexual behaviour almost twice as often as in riskier behaviours. They perceived counselling and behavioural risk assessments to help increase their awareness of personal risk-taking behaviours. Conversely, those with a risk homeostasis approach reported that they had established sexual boundaries prior to trial participation that had thus far proven to be effective in avoiding HIV infection, and that they were comfortable with the level of risk taken. Thus, risk reduction counselling had little to no influence on their sexual practices. Some of these men also indicated that while they had not found the risk reduction information imparted to them by clinic staff to be novel, counselling was beneficial in reinforcing their HIV/AIDS and safe sex knowledge base.

Assessment of hunger and appetite and their relationship to food intake in persons with HIV infection.

Assessments of hunger and/or appetite are common methods of screening for development of illness-related anorexia. There are limited data to determine whether these methods predict actual food intake in persons with HIV disease. Therefore, the authors examined the relationship between self-reported food intake and subjective ratings of hunger and appetite in 31 adults with HIV infection. Participants also indicated presence of additional factors that can decrease amount of food eaten. Subjective ratings of appetite and hunger correlated with each other but not with food intake. Twenty-four additional factors that can affect food intake were reported to be present. The most common were illness-related and factors such as eating with friends or family. These results indicate that measures of hunger and appetite are not sufficient to screen for decreased food intake. Additional factors that can affect food intake should also be included in a comprehensive assessment of adults with HIV infection.

Aerobic exercise: effects on parameters related to fatigue, dyspnea, weight and body composition in HIV-infected adults.

OBJECTIVES: The purpose of the study was to examine the effects of aerobic exercise on physiological fatigue (time on treadmill), dyspnea [rate of perceived exertion (RPE) and forced expiratory volume at 1 s (FEV1)], weight, and body composition in HIV-1-infected adults (200-499 x 106 CD4+ cells/l). DESIGN: The study was a randomized, wait-listed, controlled clinical trial of aerobic exercise in HIV-1-infected adults on signs and symptoms associated with HIV-1 infection or its treatment. METHODS: Sixty subjects were recruited and randomized to two groups. Experimental subjects completed a 12-week supervised exercise program. Control subjects continued usual activity from baseline to week 12 and were then were enrolled in the exercise program. RESULTS: At baseline, the groups were similar in age, weight, body mass index [mean body mass index (BMI) > 27], time since diagnosis, number of symptoms, CD4+ cell count, and number on protease inhibitor therapy (n = 7). Despite disproportionate attrition from the exercise group (38%), exercise subjects were able to remain on the treadmill longer, lost weight, decreased BMI, subcutaneous fat, and abdominal girth when compared to controls. The improvement in weight and body composition occurred without a decrease in kilocalories consumed. Exercise did not seem to have an effect on RPE, a surrogate for dyspnea, and FEV1. There was no significant difference in either the change in CD4+ cell count, percentage or copies of plasma HIV-1 RNA between groups. CONCLUSIONS: We conclude that supervised aerobic exercise training safely decreases fatigue, weight, BMI, subcutaneous fat and abdominal girth (central fat) in HIV-1-infected individuals. It did not appear to have an effect on dyspnea.

The feasibility of a nurse-managed, peer-led tobacco cessation intervention among HIV-positive smokers.

The purpose of this pilot study was to examine the effectiveness of an 8-week, nurse-managed, peer-led smoking cessation intervention among HIV-positive smokers. The intervention was based on the Agency for Health Care Policy and Research Smoking Cessation Clinical Practice Guideline and was delivered by an ex-smoker who was HIV positive and had been trained by an advanced practice nurse to deliver cessation counseling. Eight male HIV-positive smokers were assigned to the intervention group and received (a) 21 mg nicotine patch therapy for 6 weeks, (b) weekly face-to-face or telephone counseling, and (c) skills training that included substitute strategies for dealing with not smoking. Those participants assigned to the control group received written self-help materials for smoking cessation. Abstinence rates at end of intervention and 8 months were compared between groups. At end of treatment, 62.5% of intervention group participants were biochemically confirmed as abstinent from smoking compared with 0% in the control group. Eight-month abstinence rates were 50% among the intervention group compared with 0% in the control group.

'In an important way, I did die': uncertainty and revival in persons living with HIV or AIDS.

This study reports the revival experiences of persons who once were reconciled to their death from HIV/AIDS but who, as a result of dramatic treatment responses, now believe they may survive (popularly known as the Lazarus Syndrome). A purposive sample of men and women living with HIV infection or AIDS were interviewed in six focus groups. As part of a larger study of uncertainty in HIV illness, participants described their uncertainty accompanying renewed health and a return to the joys and problems of continued life. While new discoveries about the disease and exciting antiretroviral therapies hold the promise of improved survival, ambiguity about the durability of treatment response and ultimate survival contribute to the level of uncertainty with which a patient must cope. The experience of uncertainty in the narratives about revival involved renegotiation. Participants described physical renewal as an unexpected new stressor forcing them to renegotiate: (a) feelings of hope and future orientation, (b) social roles and identities, (c) interpersonal relations, and (d) the quality of their lives. Implications for prevention, practice, research and theory are presented and suggestions for education and assistance are offered.

Social support and unsupportive social interactions: their association with depression among people living with HIV.

Although numerous studies of people living with HIV have focused on positive social support, researchers have directed surprisingly little attention to the nature and effects of negative social interactions in this population. Based on data from a diverse sample of people with HIV (N = 271), we conducted a factor analysis to develop the HIV version of the Unsupportive Social Interactions Inventory (USII). Four types of unsupportive or upsetting responses that an HIV-positive person might receive from others were identified: insensitivity, disconnecting, forced optimism and blaming. In analysis with a sub-sample of 96 people with HIV, unsupportive social interactions were only moderately correlated with social support, suggesting that these constructs are relatively independent. Using hierarchical regression analysis, we found that unsupportive social interactions predicted a significant amount of the variance in depression, beyond the variance accounted for by physical functioning and positive social support. Partial correlations indicated that the relationship between unsupportive social interactions and depression was not an artifact of trait negative affectivity. Favourable evidence of the USII's reliability and validity suggests that the instrument provides a useful tool for assessing unsupportive social interactions experienced by people with HIV. Practical implications of the findings and directions for future research are discussed.

Patient appraisal of mandarin orange didanosine: implications for adherence and well-being.

Didanosine (Videx, ddI) has been shown to be an effective agent in the treatment of HIV disease. However, patients have had difficulties adhering to didanosine preparations due to taste aversion and/or associated nausea. The efficacy of didanosine may, therefore, be compromised. This is of concern to clinicians who seek to promote patient adherence to medication regimes and to foster the quality of patient well-being. In this study, focus groups were used to gather exploratory data about patient (n = 15) response to the new mandarin orange didanosine preparation. Data were audiotaped, transcribed verbatim, and systematically analyzed by the investigators using inductive techniques. Findings provide information regarding client evaluation of the new didanosine preparation and patterns of usage. Although clients generally find the mandarin orange preparation more tolerable, they describe engaging in numerous strategies aimed at attenuating what they experience as the inconvenience of taking the medication. Mental tricks, systematic restructuring of daily routines and environment, and dietary schemes were among the strategies devised by patients through trial and error to self-promote their adherence.

The patient self-advocacy scale: measuring patient involvement in health care decision-making interactions.

Despite the fact that many individuals express a desire for more information and involvement in the health care process, it remains to be seen if they have adopted a more participative approach by becoming involved in decisions made about their health. Research indicates that, in actual practice, individuals are differentially willing or able to be active patients. AIDS patient activists are 1 group of individuals who have become more involved in their health care decision making. This study tests the reliability and validity of a measure of patient activism-the Patient Self-Advocacy Scale (PSAS)--designed to assess the dimensions of (a) increased illness and treatment education, (b) increased assertiveness in health care interactions, and (c) increased potential for nonadherence. Tests administered to 2 samples of participants (174 adults from an HIV-AIDS population and 21 8 adults from a general population) demonstrated that the PSAS was a reliable and valid measure of patient involvement in health care decision making.

Uncertainty in illness across the HIV/AIDS trajectory.

Uncertainty is a chronic and pervasive source of psychological distress for persons living with HIV. Numerous sources of heightened uncertainty, including complex changing treatments, ambiguous symptom patterns, and fears of ostracizing social response, play a critical role in the experience of HIV-positive persons and are linked with negative perceptions of quality of life and poor psychological adjustment. Currently, research on uncertainty in HIV fails to explicate the uncertainty experience over time. Because the uncertainty of HIV varies over the course of the illness, an explicit consideration of the sources of uncertainty over the HIV illness trajectory is needed to forecast the informational and stress management needs of persons facing uncertainty about HIV illness. A biopsychosocial model developed to characterize the HIV stigma trajectory provides a useful framework modified to depict uncertainty across the HIV illness experience. Uncertainty in four phases of the HIV illness trajectory are differentiated: (a) at risk, (b) diagnosis, (c) latent, and (d) manifest.