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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., Competing Interests: The authors have declared that no competing interests exist.

SMS is a widely used technology globally and may also improve ART adherence, yet SMS notifications to social supporters following real-time detection of missed doses showed no clear benefit in a recent pilot trial. We examine the demographic and social-cultural dynamics that may explain this finding. In the trial, 63 HIV-positive individuals initiating ART received a real-time adherence monitor and were randomized to two types of SMS reminder interventions versus a control (no SMS). SMS notifications were also sent to 45 patient-identified social supporters for sustained adherence lapses. Like participants, social supporters were interviewed at enrollment, following their matched participant's adherence lapse and at exit. Social supporters with regular income (RR = 0.27, P = 0.001) were significantly associated with fewer adherence lapses. Instrumental support was associated with fewer adherence lapses only among social supporters who were food secure (RR = 0.58, P = 0.003). Qualitative interview data revealed diverse and complex economic and relationship dynamics, affecting social support. Resource availability in emotionally positive relationships seemingly facilitated helpful support, while limited resources prevented active provision of support for many. Effective social support appeared subject to social supporters' food security, economic stability and a well-functioning social network dependent on trust and supportive disclosure., Competing Interests: Compliance with Ethical Standards All human subjects’ approvals were obtained from all collaborating sites: Mbarara University of Science and Technology, Uganda National Council of Science and Technology, and Partners Healthcare. A research assistant trained in human participant research conducted informed consent procedures with eligible participants in the local language in a private area of the clinic. All consenting participants gave written informed consent individually, or for those who could not write, a thumbprint was made on the consent form. Conflict of Interest All authors declare no conflict of interest.

Background: Active family support helps as a buffer against adverse life events associated with antiretroviral therapy (ART) uptake and adherence. There is limited data available to explain how family support shapes and affects individual healthcare choices, decisions, experiences, and health outcomes among youth living with HIV (YLWH). We aimed to describe family support patterns and its role in viral load suppression among YLWH at a rural hospital in southwestern Uganda. Methods: We performed a mixed‐method cross‐sectional study between March and September 2020, enrolling 88 eligible YLWH that received ART for at least 6 months. Our primary outcome of interest was viral load suppression, defined as a viral load detected of ≤500 copies/mL. Data analysis was performed using Statistical Package for Social Sciences version 20. Fifteen individuals were also purposively selected from the original sample and participated in an in‐depth interview that was digitally recorded. Generated transcripts were coded and categories generated manually using the inductive content analytic approach. All participants provided written consent or guardian/parent assent (those <18 years) to participate in the study. Results: Forty‐nine percent of YLWH were females, the median age was 21 (IQR: 16‐22) years. About half of the participants (53%) stayed with a family member. A third (34%) of participants had not disclosed their status to any person they stayed with at home. Only 23% reported getting moderate to high family social support (Median score 2.3; IQR: 1.6‐3.2). Seventy‐eight percent of YLWH recorded viral load suppression. Viral load suppression was associated with one living with a parent, sibling, or spouse (AOR: 6.45; 95% CI: 1.16‐16.13; P =.033), having a primary caretaker with a regular income (AOR: 1.57; 95% CI: 1.09‐4.17; P =.014), and living or communicating with family at least twice a week (AOR: 4.2; 95% CI: 1.65‐7.14; P =.003). Other significant factors included youth receiving moderate to high family support (AOR: 12.11; 95% CI: 2.06‐17.09; P =.006) and those that perceived family support in the last 2 years as helpful (AOR: 1.98; 95% CI: 1.34‐3.44; P =.001). HIV stigma (AOR: 0.10; 95% CI: 0.02‐0.23; P =.007) and depression (AOR: 0.31; 95% CI: 0.06‐0.52; P =.041) decreased viral load suppression. Qualitative data showed that dysfunctional family relationships, economic insecurity, physical separation, HIV‐ and disclosure‐related stigma, past and ongoing family experiences with HIV/ART affected active family support. These factors fueled feelings of abandonment, helplessness, discrimination, and economic or emotional strife among YLWH. Conclusion: Our data showed that living with a family member, having a primary caretaker with a regular income, living or communicating with family members regularly, and reporting good family support were associated with viral load suppression among YLWH in rural southwestern Uganda. Experiencing depression due to HIV and or disclosure‐related stigma was associated with increased viral load. All YLWH desire ongoing emotional, physical, and financial support from immediate family to thrive and take medications daily and timely. Future interventions should explore contextual community approaches that encourage acceptance, disclosure, and resource mobilization for YLWH who rely on family support to use ART appropriately. [ABSTRACT FROM AUTHOR]

HIV status disclosure remains one of the major challenges to effective HIV prevention. Given the complexities and low rates of disclosure, new innovative strategies are needed. Since electronic adherence monitoring (EAM) are unique mobile devices that light up when transmitting data, those who see them often want to know more about them, which can potentially result in HIV status disclosure. We conducted a qualitative study to explore patient experiences with EAM for antiretroviral therapy (ART) in Uganda with a goal of understanding potential ethical concerns, including disclosure. Unexpectedly, several participants reported intentionally using EAM to facilitate HIV status disclosure to others in order to get social support, encourage HIV testing, and create awareness about HIV. Although researchers and clinicians need to be mindful of the potential for unintended HIV status disclosure through the use of EAM, they should also recognize the potential of this approach to support intended disclosure. [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]

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]

SMS is a widely used technology globally and may also improve ART adherence, yet SMS notifications to social supporters following real-time detection of missed doses showed no clear benefit in a recent pilot trial. We examine the demographic and social-cultural dynamics that may explain this finding. In the trial, 63 HIV-positive individuals initiating ART received a real-time adherence monitor and were randomized to two types of SMS reminder interventions versus a control (no SMS). SMS notifications were also sent to 45 patient-identified social supporters for sustained adherence lapses. Like participants, social supporters were interviewed at enrollment, following their matched participant’s adherence lapse and at exit. Social supporters with regular income (RR = 0.27, P = 0.001) were significantly associated with fewer adherence lapses. Instrumental support was associated with fewer adherence lapses only among social supporters who were food secure (RR = 0.58, P = 0.003). Qualitative interview data revealed diverse and complex economic and relationship dynamics, affecting social support. Resource availability in emotionally positive relationships seemingly facilitated helpful support, while limited resources prevented active provision of support for many. Effective social support appeared subject to social supporters’ food security, economic stability and a well-functioning social network dependent on trust and supportive disclosure.