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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.
We conducted a cross‐sectional study to describe the patterns of family support and its effect on viral load suppression among youth aged 15 to 24 years in southwestern Uganda. The study was conducted at the Kinoni Health Center IV, a publically funded and operated health center in Rwampara, a rural, resource‐limited district located in southwestern Uganda. The health center serves over 100 000 patients annually from across 20 villages. It provides general outpatient care, maternal and child health care, inpatient care, general surgery, laboratory diagnostics, and HIV care services to both children and adults. The study was conducted among YLWH between 15 and 24 years of age, both male and female, registered at the ART clinic of Kinoni Health Centre IV. We selected all study participants who had attended the HIV/ART clinic for the last 6 months as per the facility records assisted by the nurse‐in‐charge for the required age group. We enrolled youth between 15 and 24 years of age, both male and female, living with HIV and registered at Kinoni Health Centre IV for HIV/ART care. Eligible participants should have been enrolled on ART for at least 6 months. We excluded individuals who declined to give consent, those who did not have viral load records in their files, and those who were unable to complete the informed consent or assent process as assessed by the study research assistants (RAs). Trained RAs approached eligible participants on the phone if available or notified the clinic front desk to be contacted if an eligible participant turned up for review. RAs introduced the study to the eligible participant and/or the guardian or parent if they came together at the clinic. The RA then obtained voluntary written informed consent from all eligible participants in the local language within a private area of the hospital. Those who could not write made their thumbprint on the consent form. The RAs obtained permission from a guardian or parent who came with participants below 18 years of age to the health facility. A total of 88 YLWH completed study procedures. A subset of 15 YLWH was purposively selected from the total enrolled individuals for qualitative interviews based on study participant's family relationship dynamics, viral load outcome, ART enrolment duration, experience, HIV disclosure status, social support characteristics, and variations in the types and quality of social support provided by family members. In addition, participants were invited to come to the clinic or private research space alone. The interviews aimed at gathering in‐depth information from specific participants with characteristics that would help explain their experiences and the role of family support on their ART uptake and utilization. Participants completed a structured interviewer‐led questionnaire with data on known explanatory factors that affect ART uptake and adherence: socio‐demographics, health and depression, 16 HIV sero‐status disclosure, food insecurity, 11 alcohol use, 17 HIV stigma, 18 and social support. 19 The questionnaire also contained sections on the last viral load recorded over the previous 6 months, relationship and communication with members at home, income, disclosure status, presence of an HIV‐positive family member, the number of people at home, and family support. Our primary outcome of interest was viral load suppression, defined as a viral load of less than or equal to 500 copies/mL. We expressed the quality of family support as emotional (psychological and informational) and instrumental (physical and economic) social support obtained from family members using a standardized score ranging from 1 to 4, 19 with 4 indicating high levels of social support. An in‐depth interview was administered to 15 purposively selected YLWH, which explored family and primary caretaker relationships, ART and disclosure experiences, pill‐taking behavior, food insecurity, and type and variations of family support. The interview guide was developed using the Health Utilization Model (HUM). 20 All qualitative interviews were conducted within 1 week of participant enrolment by two trained RAs and were digitally recorded with the participant's permission in the native local language (Runyankole) in a comfortable and private location within the Health Center premises or a mutually agreed personal space. Interviews lasted between 45 minutes to 1 hour. The recorded interviews were transcribed from the local language directly to English by a well‐trained RA. We considered all the 88 YLWH who completed all study procedures. We described demographic and clinical data for the enrolled participants using standard descriptive statistics. We assessed participant correlates of poor viral load suppression of viral load ≤500 copies/mL, computed for each participant. All data analysis was performed using the Statistical Package for Social Sciences (SPSS) version 20. We estimated the P values with Chi‐squared tests utilizing a level of statistical significance of ≤.05. Continuous variables were summarized using medians and interquartile ranges. We used univariate logistic regression to assess unadjusted associations between covariates and viral load suppression, and these were expressed using crude odds ratio (OR) and 95% confidence intervals (CIs). We tested the variables for collinearity. Those with a P value of less than or equal to .10 in unadjusted analyses were included in a multivariable logistic regression analysis, adding one at a time to control for confounders. Interviews were transcribed in English and coded manually. Coding was jointly done by ECA and RN. Together with others, disagreements in coding were resolved to ensure consistency. We reviewed the coded data to identify repeated patterns and sorted them to derive categories using the inductive content analytic approach. 21 We aimed to construct categories describing individual healthcare experiences, relationship dynamics, involvement and perspectives of family to support healthcare decisions, ART uptake and utilization, as well as barriers and challenges that affect their well‐being. Themes were then generated from the categories identified and presented with illustrative quotes from the participants' interviews to explain how these relationships and support—or lack thereof—shape their healthcare decisions and access to and utilization of ART care. This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (MUREC1/7) and the Uganda National Council of Science and Technology (RESCLEAR/01). In addition, the team obtained approvals from the District Health Officer of Rwampara District and the facility in‐charge of Kinoni Health Centre IV before conducting the research.
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