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Background: Participation in longitudinal research studies in resource-limited settings often involves frequent interactions with study staff and other participants, as well as receipt of incentives and transportation reimbursements. Social support—receipt of material and emotional resources from one's social network—has been linked to antiretroviral adherence in sub-Saharan Africa. The extent to which social support arises from study participation, its range and depth, and its implications for observational study conduct, have not been extensively described. Methods: We conducted individual open-ended and semi-structured interviews with participants in a longitudinal, observational antiretroviral therapy adherence monitoring study in Mbarara, Uganda. Participants were asked about their experiences in the longitudinal study and their interactions with research staff. We also interviewed study research assistants (RAs). Deductive and inductive coding were used to identify content related to the experience of study participation. Codes were organized into themes, and relationships between themes were used to develop overarching categories. Results: Sixty longitudinal study participants and 6 RAs were interviewed. Instrumental and emotional social support emerged as pervasive and valued aspects of longitudinal study participation. Instrumental support that participants received consisted of enhanced linkage to medical care, health education, and direct and indirect material benefits. Emotional support consisted of perceptions of feeling "cared for" and social interactions that permitted escape from HIV-related stigma. Both instrumental and emotional support often arose through the close relationships participants formed with research staff and with each other. Study-derived social support motivated some participants to adhere to antiretroviral therapy—an unanticipated effect potentially influencing the longitudinal study's primary observational outcome. Conclusions: Longitudinal study participation resulted in instrumental and emotional social support for participants. The depth of support participants experienced has implications for observational study design in resource-limited settings, including need to assess potential effects on study outcomes; consideration of social support during risk/benefit assessment in study ethics review and consent; and vigilance for consequences of social support loss when studies end. [ABSTRACT FROM AUTHOR]

Background. Social support has been shown to mitigate social barriers to medication adherence and improve tuberculosis (TB) treatment success rates. The use of mobile technology to activate social support systems among TB patients, however, has not been well explored. Moreover, studies that tie supportive SMS (Short Message Service) texts to electronic monitoring of TB medication adherence are lacking. Objective. To explore TB patients' current access to social support and perceptions of utilizing real-time adherence monitoring interventions to support medication adherence. Methods. We purposively selected TB patients who owned phones, had been taking TB medications for ≥1 month, were receiving their treatment from Mbarara Regional Referral Hospital, and reported having ≥1 social supporter. We interviewed these patients and their social supporters about their access to and perceptions of social support. We used STATA 13 to describe participants' sociodemographic and social support characteristics. Qualitative data were analyzed using content analysis to derive categories describing accessibility and perceptions. Results. TB patients report requesting and receiving a variety of different forms of social support, including instrumental (e.g., money for transport and other needs and medication reminders), emotional (e.g., adherence counselling), and informational (e.g., medication side effects) support through mobile phones. Participants felt that SMS notifications may motivate medication adherence by creating a personal sense of obligation to take medications regularly. Participants anticipated that limited financial resources and relationship dynamics could constrain the provision of social support especially when patients and social supporters are not oriented about their expectations. Conclusion. Mobile telephones could provide alternative approaches to providing social support for TB medication adherence especially where patients do not stay close to their social supporters. Further efforts should focus on optimized designs of mobile phone-based applications for providing social support to TB patients and training of TB patients and social supporters to match their expectations. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Technology-based interventions for behavior change, such as adherence monitors and SMS text messages, can improve adherence to HIV antiretroviral therapy. It is unclear, however, how the effects of such interventions are maintained when interventions are withdrawn. We explored resiliency of people living with HIV in coping with adherence to antiretroviral therapy (ART) after withdrawing an adherence support intervention of real-time adherence monitors linked to SMS text messages at study closure. This is a qualitative study conducted with former participants of a pilot randomized controlled trial after study closure. Between April 2016 and November 2016, we used convenient sampling to interview 28 of the 62 participants from the pilot trial, which was conducted in rural Uganda. Interviews elicited information on experiences of taking ART in the absence of the intervention, coping strategies, and changes in social support interactions. Data were analyzed inductively using content analysis. Most participants demonstrated resilience through learning adherence from the intervention; and internalizing the habit of medication adherence. They seemed to have a sense of self-esteem, positive thinking, and access to supportive relationships. Other participants employed adaptive coping strategies, such as using alternative cues (e.g., alarms), accessing spiritual support, and adjusting their medication time to their routine. A few participants lacked resiliency, lost the habit and struggled with adherence. They were dependent on the intervention, appeared isolated and psychologically stressed, and were unable to overcome challenges associated with poor social support systems. Intervention-related benefits may or may not persist after the intervention is withdrawn. Contingent on individuals" underlying characteristics and relationships, participants manifested resiliency through learning and internalization, as well as using alternative coping strategies. Such resiliency could facilitate the use of short-term interventions, which are particularly important for resource-limited settings. Participants should be referred to available additional support at study closure when needed. [ABSTRACT FROM AUTHOR]

Electronic adherence monitors (EAMs) record and report an array of health behaviors, ranging from taking daily medications to wearing medical devices. EAMs are utilized in research worldwide and are being investigated for clinical use. However, there is also growing popular concern about the extent to which electronic devices may be used to monitor individuals, including allegations in the media that EAMs represent a move towards "Big Brother" in medicine. Here, we highlight the unique benefits as well as the potential ethical challenges that electronic adherence monitoring generates. These challenges surround autonomy, privacy and confidentiality, trust, and ancillary care obligations. We describe key questions within each of these domains that warrant further investigation, and present potential solutions to many of the concerns raised. [ABSTRACT FROM AUTHOR]

The article discusses the dependence on digital medical devices like electronic adherence monitors (EAM) in resource-limited settings in the article by Klugman and colleagues in 2018. Topics covered include its risks to health and potential loss of trust in digital medicine, the intrinsic and extrinsic motivation in medical device dependency, and its issues of optimal functionality versus access and compatibility. Also noted are concerns on technology malfunction and unavailability.

Background: Maternal mortality rate remains unacceptably high in Uganda. In-depth evidence about the barriers to access and utilization of maternal health services specifically among the rural illiterate pregnant women remains lacking. The potentials of mobile health technologies in addressing the maternal health challenges remain unclear. Aim: To explore the maternal health-related barriers among illiterate pregnant women in rural Southwestern Uganda and highlight the potentials of mobile health technologies. Material and Methods: This is a midline qualitative study conducted with the participants of a pilot randomized controlled trial. Between October 2019 and December 2019, we carried out semi-structured interviews with 30 illiterate pregnant mothers. Interviews elicited information on the barriers to access and utilization of maternal health services. An inductive, content analytic approach was used to analyze qualitative data. Quantitative sociodemographic and socioeconomic data were summarized descriptively. Results: Participants reported that lack of money (for transport and medical costs), unfriendly maternal health services, and delays at the maternal health clinic constrain access and utilization of maternal health services. Given their widespread adoption, mobile technologies can potentially address some of these barriers e.g., money for transport or microenterprise start-up can be sent to women through their mobile phones or maternal health-related services (such as health education and consultation) can be provided electronically. Conclusion: Future efforts should focus on utilizing mobile health technologies to not only enable women overcome the critical financial challenges but also facilitate remote access and utilization of maternal health services. [ABSTRACT FROM AUTHOR]

Background. Utilization of perinatal services in Uganda remains low, with correspondingly high rates of unskilled home deliveries, which can be life-threatening. We explored psychosocial and cultural factors influencing birthing choices for unskilled home delivery among postpartum women in rural southwestern Uganda. Methods. We conducted in-depth qualitative face-to-face interviews with 30 purposively selected women between December 2018 and March 2019 to include adult women who delivered from their homes and health facility within the past three months. Women were recruited from 10 villages within 20 km from a referral hospital. Using the constructs of the Health Utilization Model (HUM), interview topics were developed. Interviews were conducted and digitally recorded in a private setting by a native speaker to elicit choices and experiences during pregnancy and childbirth. Translated transcripts were generated and coded. Coded data were iteratively reviewed and sorted to derive categories using inductive content analytic approach. Results. Eighteen women (60%) preferred to deliver from home. Women's referent birth location was largely intentional. Overall, the data suggest women choose home delivery (1) because of their financial dependency and expectation for a "natural" and normal childbirth, affecting their ability and need to seek skilled facility delivery; (2) as a means of controlling their own birth processes; (3) out of dissatisfaction with facility-based care; (4) out of strong belief in fate regarding birth outcomes; (5) because they have access to alternative sources of birthing help within their communities, perceived as "affordable," "supportive," and "convenient"; and (6) as a result of existing gender and traditional norms that limit their ability and freedom to make family or health decisions as women. Conclusion. Women's psychosocial and cultural understandings of pregnancy and child birth, their established traditions, birth expectations, and perceptions of control, need, and quality of maternity care at a particular birthing location influenced their past and future decisions to pursue home delivery. Interventions to address barriers to healthcare utilization through a multipronged approach could help to debunk misconceptions, increase perceived need, and motivate women to seek facility delivery. [ABSTRACT FROM AUTHOR]

Background: Uganda's maternal mortality remains unacceptably high, with thousands of women and newborns still dying of preventable deaths from pregnancy and childbirth-related complications. Globally, Antenatal care (ANC) attendance has been associated with improved rates of skilled births. However, despite the fact that over 95% of women in Uganda attend at least one ANC, over 30% of women still deliver at home alone, or in the presence of an unskilled birth attendant, with many choosing to come to hospital after experiencing a complication. We explored barriers to women's decisions to deliver in a health care facility among postpartum women in rural southwestern Uganda, to ultimately inform interventions aimed at improving skilled facility births. Methods: Between December 2018 and March 2019, we conducted in-depth qualitative face-to-face interviews with 30 post-partum women in rural southwestern Uganda. The purposeful sample was intended to represent women with differing experiences of pregnancy, delivery, and antenatal care. We included 15 adult women who had delivered from their homes and 15 who had delivered from a health facility in the previous 3 months. Women were recruited from 10 villages within 20 km of a regional referral hospital. Interviews were conducted and digitally recorded in a private setting by a trained native speaker to elicit experiences of pregnancy and birth. Translated transcripts were generated and coded. Coded data were iteratively reviewed and sorted to derive descriptive categories using an inductive content analytic approach. Results: Regardless of where they decided to give birth, women wished to deliver in a supportive, respectful, responsive and loving environment. The data revealed six key barriers to women's decisions to deliver from a health care facility: 1) Fear of unresponsive care, fueling a fear of being neglected or abandoned while at the facility; 2) fear of embarrassment and mistreatment by health care providers; 3) low perception of risk associated with pregnancy and childbirth; 4) preferences for particular birthing positions and their outcome expectations; 5) perceived lack of privacy in public facilities; and 6) perceived poor clinical and interpersonal skills of health providers to adequately explain birthing procedures or support expectant or laboring women and their newborn. Conclusion: Anticipation of unsupportive, unresponsive, disrespectful treatment, and a perceived lack of tolerance for simple, non-harmful traditions prevent women from delivering at health facilities. Building better interpersonal relationships between patients and providers within health systems could reinforce trust, improve patient–provider interaction, and facilitate useful information transfer during ANC and delivery visits. These expectations are important considerations in developing supportive health care systems that provide acceptable patient-friendly care. These findings are indicative of the vital need for midwives and other health care providers to have additional training in the role of communication and dignity in delivery of quality health care. [ABSTRACT FROM AUTHOR]