Nancy R. Reynolds

Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory

Stigma is a social construction which dramatically affects the life experiences of the individuals infected with the human immunodeficiency virus (HIV) and their partners, family and friends. While it has been generally recognized that the nature of stigma varies across illnesses, it has usually not been considered as changing and emerging over the course of a single illness. In this paper, HIV/AIDS is analyzed in terms of a stigma trajectory. The primary purpose is to conceptualize how individuals with HIV/AIDS experience stigma and to demonstrate how these experiences are affected by changes in the biophysical dimensions of HIV/AIDS. Four phases of the HIV/AIDS stigma trajectory are depicted: (1) at risk: pre-stigma and the worried well; (2) diagnosis: confronting an altered identity; (3) latent: living between illness and health; and (4) manifest: passage to social and physical death. The essential processes through which individuals personalize the illness, dilemmas encountered in interpersonal relations, strategies that are used to avoid or minimize HIV-related stigma, and subcultural networks and ideologies that are drawn upon to construct, avow, and adapt to an HIV identity are considered across the stigma trajectory.

Processes of Self‐Management in Chronic Illness

PURPOSE Self-management is a dynamic process in which individuals actively manage a chronic illness. Self-management models are limited in their specification of the processes of self-management. The purpose of this article is to delineate processes of self-management in order to help direct interventions and improve health outcomes for individuals with a chronic illness. DESIGN Qualitative metasynthesis techniques were used to analyze 101 studies published between January 2000 and April 2011 that described processes of self-management in chronic illness. METHODS Self-management processes were extracted from each article and were coded. Similar codes were clustered into categories. The analysis continued until a final categorization was reached. FINDINGS Three categories of self-management processes were identified: focusing on illness needs; activating resources; and living with a chronic illness. Tasks and skills were delineated for each category. CONCLUSIONS This metasynthesis expands on current descriptions of self-management processes by specifying a more complete spectrum of self-management processes. CLINICAL RELEVANCE Healthcare providers can best facilitate self-management by coordinating self-management activities, by recognizing that different self-management processes vary in importance to patients over time, and by having ongoing communication with patients and providers to create appropriate self-management plans.

Factors influencing medication adherence beliefs and self-efficacy in persons naive to antiretroviral therapy: a multicenter, cross-sectional study.

It is widely recognized that adherence to antiretroviral therapy is critical to long-term treatment success, yet rates of adherence to antiretroviral medications are frequently subtherapeutic. Beliefs about antiretroviral therapy and psychosocial characteristics of HIV-positive persons naive to therapy may influence early experience with antiretroviral medication adherence and therefore could be important when designing programs to improve adherence to antiretroviral therapy. As part of a multicenter AIDS Clinical Trial Group (ACTG 384) study, 980 antiretroviral-naive subjects (82% male, 47% White, median age 36 years, and median CD4 cell count 278 cells/mm3) completed a self-administered questionnaire prior to random treatment assignment of initial antiretroviral medications. Measures of symptom distress, general health and well-being, and personal and situational factors including demographic characteristics, social support, self-efficacy, depression, stress, and current adherence to (nonantiretroviral) medications were recorded. Associations among variables were explored using correlation and regression analyses. Beliefs about the importance of antiretroviral adherence and ability to take antiretroviral medications as directed (adherence self-efficacy) were generally positive. Fifty-six percent of the participants were “extremely sure” of their ability to take all medications as directed and 48% were “extremely sure” that antiretroviral nonadherence would cause resistance, but only 37% were as sure that antiretroviral therapy would benefit their health. Less-positive beliefs about antiretroviral therapy adherence were associated with greater stress, depression, and symptom distress. More-positive beliefs about antiretroviral therapy adherence were associated with better scores on health perception, functional health, social–emotional–cognitive function, social support, role function, younger age, and higher education (r values = 0.09–0.24, all p < .001). Among the subset of 325 participants reporting current use of medications (nonantiretrovirals) during the prior month, depression was the strongest correlate of nonadherence (r = 0.33, p < .001). The most common reasons for nonadherence to the medications were “simply forgot” (33%), “away from home” (27%), and “busy” (26%). In conclusion, in a large, multicenter survey, personal and situational factors, such as depression, stress, and lower education, were associated with less certainty about the potential for antiretroviral therapy effectiveness and ones perceived ability to adhere to therapy. Findings from these analyses suggest a role for baseline screening for adherence predictors and focused interventions to address modifiable factors placing persons at high risk for poor adherence prior to antiretroviral treatment initiation

Gender differences in quality of life among cardiac patients.

Objective Prior studies of quality of life among cardiac patients have examined mostly men. This study evaluated gender differences in quality of life and examined the degree to which social support was associated with quality of life. Methods A sample of 536 patients (35% women) was recruited during a 14-month period from the inpatient cardiology service of a University-based hospital. Participants completed assessments at baseline and at 3-month intervals over the subsequent 12 months, for a total of 5 assessments. Measures at each assessment included quality of life [Mental Component Score (MCS) and Physical Component Score (PCS) from the Medical Outcomes Study—Short Form 36] and social support [Interpersonal Support Evaluation List—Short Form]. Results A total of 410 patients completed the baseline assessment and at least one follow-up, and were included in the data analyses. Linear mixed effects modeling of the MCS score revealed a significant effect of gender (p = .028) and time (p < .001), as well as a significant interaction of gender by social support (p = .009). Modeling of the PCS revealed a significant effect of gender (p = .010) and time (p < .001). Conclusions Women with cardiac disease indicated significantly lower quality of life than men with cardiac disease over the course of a 12-month longitudinal follow-up. Social support, especially a sense of belonging or companionship, was significantly associated with emotional quality of life (MCS) among women. Strategies to increase social support may be important for health and well-being of women with cardiac disease.

Adherence to antiretroviral therapies: state of the science.

HIV-related morbidity and mortality have been dramatically improved in populations treated with combination antiretroviral therapy. Although it is widely recognized that adherence to the antiretroviral medication regimens is vital to treatment success, rates of adherence to the regimens are often poor. There is a large body of research exploring the problem of adherence to antiretroviral medications. The literature is, to date, dominated by reports identifying factors that are predictive or associated with antiretroviral adherence. Adherence is increasingly understood as a dynamic behavior influenced by a matrix of interrelated factors that change over time. Preliminary reports suggest varying degrees of success with strategies designed to improve adherence. Multifaceted strategies appear to be the most promising; however, there are few controlled studies substantiating the effectiveness of these approaches and the mechanisms by which the interventions promote adherence are not well understood. More well powered, rigorously evaluated antiretroviral adherence intervention trials are urgently needed. Further, problems in the field exist because of limitations in the available adherence measures. This paper provides a comprehensive review and analysis of the state-of-the-science of this body of work. Despite substantial attention to antiretroviral adherence in recent years, there remain significant gaps in our understanding.

Cigarette smoking and HIV: more evidence for action.

As many as 50-70% of persons infected with HIV are current smokers. Compelling evidence concerning the risks of cigarette smoking to persons living with HIV urges the inclusion of smoking treatment protocols in contemporary models of HIV care. Yet in spite of growing awareness of this problem, persons living with HIV are not being effectively treated for tobacco use. To further an understanding of contributing factors and define directions for evidenced-based intervention, factors associated with smoking behavior among persons living with HIV are examined.

Optimizing measurement of self-reported adherence with the ACTG Adherence Questionnaire: a cross-protocol analysis.

Background/Objective:The AIDS Clinical Trials Group (ACTG) Adherence Questionnaire is used extensively, but investigators frequently only use the first item of the questionnaire (4-day recall). Design/Methods:A secondary analysis was conducted to (1) estimate the validity and reliability of each of the 5 scale items and (2) compare the approach commonly used to summarize adherence data collected with the instrument (average 4-day recall) with alternate approaches derived using principal component (PC) analysis and the full questionnaire. We hypothesized that an estimate of adherence taking all items of the questionnaire into account would provide a stronger measure of adherence. Results:Logistic regression analyses showed that the first PC identified (PC1) was significantly correlated with plasma HIV RNA outcome (P < 0.0001 for ACTG 370 data and P = 0.006 for ACTG 398 data) and correlated with plasma HIV RNA better than average 4-day recall. An adherence index formulated using weights of PC1 showed substantially greater variability in the range of adherence scores in comparison to average 4-day adherence recall alone. PC1 compared favorably with 2 indices derived from medication event monitoring system data as well. Conclusions:Findings indicate that a superior assessment of antiretroviral adherence may be obtained with the ACTG Adherence Questionnaire by using the method employed in this analysis.

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.

Cigarette Smoking in the HIV-Infected Population

As mortality due to AIDS-related causes has decreased with the use of antiretroviral therapy, there has been a rise in deaths related to non-AIDS-defining illnesses. Given the exceedingly high prevalence of cigarette smoking among individuals living with HIV infection, tobacco has been implicated as a major contributor to this paradigm shift. Evidence suggests that smoking-related illnesses, such as cardiovascular disease, respiratory illnesses, and certain malignancies, contribute substantially to morbidity and mortality among HIV-infected persons. In this review, we summarize the adverse health consequences of smoking relevant to HIV-infected individuals and discuss smoking cessation in this unique population, including a discussion of barriers to quitting and a review of studies that have examined smoking cessation interventions.

Telephone support to improve antiretroviral medication adherence: a multisite, randomized controlled trial.

Objective:To determine whether proactive telephone support improves adherence to antiretroviral therapy (ART) and clinical outcomes when compared to standard care. Methods:A multisite, randomized controlled trial (RCT) was conducted with 109 ART-naive subjects coenrolled in AIDS Clinical Trials Group (ACTG) 384. Subjects received standard clinic-based patient education (SC) or SC plus structured proactive telephone calls. The customized calls were conducted from a central site over 16 weeks by trained registered nurses. Outcome measures (collected over 64 weeks) included an ACTG adherence questionnaire and 384 study endpoints. Results:For the primary endpoint, self-reported adherence, a significantly better overall treatment effect was observed in the telephone group (P = 0.023). In a post hoc analysis, composite adherence scores, taken as the first 2 factor scores from a principal components analysis, also found significant intervention benefit (P = 0.023 and 0.019 respectively). For the 384 primary study endpoint, time to regimen failure, the Kaplan-Meier survival curve for the telephone group remained above the SC group at weeks 20 to 64; a Cox proportional hazard model that controlled for baseline RNA stratification, CD4, gender, age, race/ethnicity, and randomized ART treatment arm suggested the telephone group tended to have a lower risk for failure (hazard ratio = 0.68; 95% confidence interval: 0.38 to 1.23). Conclusions:Findings indicate that customized, proactive telephone calls have good potential to improve long-term adherence behavior and clinical outcomes.