The importance of how research participants think they are perceived: results from an electronic monitoring study of antiretroviral therapy in Uganda

Novel monitoring technologies in HIV research, such as electronic adherence monitors (EAMs), have changed the nature of researcher-participant interactions. Yet little is known about how EAMs and the resulting interaction between researchers and participants affect research participation and the data gathered. We interviewed participants and research assistants (RAs) in an observational cohort study involving EAMs for HIV antiretroviral therapy (ART) in Uganda. We qualitatively explored interviewees’ views about ethical issues surrounding EAMs and assessed data with conventional and directed content analysis. Participants valued their relationships with RAs and were preoccupied with RAs’ perceptions of them. Participants were pleased when the EAM revealed regular adherence, and annoyed when it revealed non-adherence that contradicted self-reported pill-taking behavior. For many, the desire to maintain a good impression incentivized adherence. But some sought to creatively conceal non-adherence, or refused to use the EAM to avoid revealing non-adherence to RAs. These findings show that participants’ perceptions of the study staff's perceptions of them affected the experience of being monitored, study participation, and ultimately the data gathered in the study. Investigators in monitoring-based research should be aware that social interactions between participants and study staff could affect both the practical and ethical conduct of that research.     

Congenital Heart Disease and Women’s Health Across the Life Span: Focus on Reproductive Issues

From adolescence to older age, women with congenital heart disease (CHD) face unique challenges. In this review we explore the ways in which CHD affects women’s sexual and reproductive health and, in turn, how their sexual and reproductive history affects the course of their CHD. In adolescence, special attention must be paid to menstrual irregularities and concerns of developing sexuality and self-image. Discussions about sexuality and reproduction are an important part of transition planning and must be done with an awareness of the adolescent’s developing understanding and maturity. Pregnancy imposes a hemodynamic load on the heart which may lead to cardiac, obstetric, and fetal/neonatal complications in women with CHD. Prepregnancy counselling must include an assessment of maternal and fetal risk according to several well developed models. Counselling should also include discussions about fertility and alternatives to pregnancy when appropriate. Recommendations for contraception must be made according to the patient’s cardiac lesion. In caring for women with CHD during pregnancy, a multidisciplinary cardio-obstetrics team is recommended to optimize care. More research is needed into the long-term impact of pregnancy on the prognosis of patients with CHD. As women with CHD increasingly survive into old age, more attention will need to be directed toward the treatment of menopause and acquired heart disease in this population.     

The Dynamic Relationship Between Social Support and HIV-Related Stigma in Rural Uganda

Background

Cross-sectional studies show that human immunodeficiency virus (HIV) stigma is negatively correlated with social support.

Purpose

The purpose of this study is to examine the bidirectional relationship between social support and HIV stigma.

Methods

We collected quarterly data from a cohort of 422 people living with HIV in Uganda, followed for a median of 2.1 years. We used multilevel regression to model the contemporaneous and 3-month-lagged associations between social support and both enacted and internalized stigma.

Results

Lagged enacted stigma was negatively correlated with emotional and instrumental social support, and lagged instrumental social support was negatively correlated with enacted stigma. Internalized stigma and emotional social support had reciprocal lagged associations.

Conclusions

Interventions to reduce enacted stigma may strengthen social support for people living with HIV. Improved social support may in turn have a protective influence against future enacted and internalized stigma.     

The Acceptability and Perceived Usefulness of a Weekly Clinical SMS Program to Promote HIV Antiretroviral Medication Adherence in KwaZulu-Natal,South Africa

Short message service (SMS) text messages have been used to remind and encourage patients to take ART in research studies. However, few studies have assessed the feasibility and acceptability of SMS in routine clinical practice. We report patient perspectives on a weekly SMS adherence support program after implementation into clinical care at an HIV clinic in KwaZulu-Natal, South Africa. We conducted structured interviews with a cross-sectional convenience sample of 100 adult patients who were invited to join the program, 88 of whom had received a program SMS. Of these respondents, 81 (92 %) would recommend the program to a friend. Sixty-eight (77 %) felt the program helped them remember clinic appointments, a response associated with male gender [odds ratio (OR) 5.88, 95 % confidence interval (CI) 1.52–23.26, P = 0.011] and HIV disclosure outside the home [OR 3.40, 95 %CI 1.00–11.60, P = 0.050]. This clinical SMS adherence program was found to have high patient-perceived usefulness.     

Impact of Obesity on Outcomes of Pregnancy in Women With Heart Disease

BackgroundWomen with heart disease are at risk for complications during pregnancy. This study sought to examine the effect of maternal obesity on pregnancy complications in women with heart disease.ObjectivesThe objective was to determine the incidence of adverse cardiac events (CE) in pregnant women with heart disease and obesity.MethodsAdverse CE during pregnancy were examined in a prospective cohort of women with heart disease. CE were a composite of the following: cardiac death/arrest, arrhythmias, heart failure, myocardial infarction, stroke, aortic dissection, and thromboembolic events. Pre-eclampsia and post-partum hemorrhage were also studied. Outcomes were examined according to body mass index (BMI). To identify additional predictors of CE, a baseline risk score (CARPREG [Canadian Cardiac Disease in Pregnancy Study] II score) for predicting cardiac complications was calculated for all pregnancies and included in a multivariable logistic regression model.ResultsOf 790 pregnancies, 19% occurred in women with BMI ≥30 kg/m² (obesity), 25% in women with BMI 25 to 29.9 kg/m² (overweight), 53% in women with BMI 18.5 to 24.9 kg/m² (normal weight), and 3% in women with BMI <18.5 kg/m² (underweight). Women with obesity were at higher risk of CE when compared with women with normal weight (23% vs. 14%; p = 0.006). In a multivariable model, obesity (odds ratio: 1.7; 95% confidence interval: 1.0 to 2.7) and higher CARPREG II risk scores (odds ratio: 1.7; 95% confidence interval: 1.5 to 1.9) predicted CE. Pre-eclampsia was more frequent in women with obesity compared with those with normal weight (8% vs. 2%; p = 0.001).ConclusionsObesity increases the risk of maternal cardiovascular complications in pregnant women with heart disease. This modifiable risk factor should be addressed at the time of preconception counseling.     

Perceptions About Local ART Adherence Norms and Personal Adherence Behavior Among Adults Living with HIV in Rural Uganda

AIDS and Behavior - Although misperceived norms often drive personal health behaviors, we do not know about this phenomenon in the context of antiretroviral therapy (ART) adherence. We conducted a...     

Particle therapy at the Heidelberg Ion Therapy Center (HIT) - Integrated research-driven university-hospital-based radiation oncology service in Heidelberg, Germany

The Heidelberg Ion Therapy Center (HIT) offers treatment of particle therapy with variety of ion species for over 1300 patients yearly. In November 2009, patient treatment has begun. The aim of the center is to provide high-end radiotherapy, and to define the role of particle therapy through clinical trials.     

Zur Operation von Hypophysentumoren

Ohne ZusammenfassungMit 8 Textabbildungen.Herrn Prof. Dr.Güttich zum 60. Geburtstag.