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"Linnemayr, Sebastian"
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“How am I going to live?”: exploring barriers to ART adherence among adolescents and young adults living with HIV in Uganda
by
Samba, Clare
,
Birungi, Josephine
,
Saya, Uzaib
in
Acquired immune deficiency syndrome
,
Adhesion
,
Adolescence
2018
Background
Studies from sub-Saharan Africa (SSA) document how barriers to ART adherence present additional complications among adolescents and young adults living with HIV. We qualitatively explored barriers to ART adherence in Uganda among individuals age 14–24 to understand the unique challenges faced by this age group.
Methods
We conducted focus group (FG) discussions with Community Advisory Board members (
n
= 1), health care providers (
n
= 2), and male and female groups of adolescents age 14–17 (
n
= 2) and youth age 18–24 (
n
= 2) in Kampala, Uganda. FGs were transcribed verbatim and translated from Luganda into English. Two investigators independently reviewed all transcripts, developed a detailed codebook, achieved a pooled Cohen’s Kappa of 0.79 and 0.80, and used a directed content analysis to identify key themes.
Results
Four barriers to ART adherence emerged: 1) poverty limited adolescents’ ability to buy food and undercut efforts to become economically independent in their transition from adolescence to adulthood; 2) school attendance limited their privacy, further disrupting ART adherence; 3) family support was unreliable, and youth often struggled with a constant change in guardianship because they had lost their biological parents to HIV. In contrast peer influence, especially among HIV-positive youth, was strong and created an important network to support ART adherence; 4) the burden of taking multiple medications daily frustrated youth, often leading to so-called ‘drug holidays.’ Adolescent and youth-specific issues around disclosure emerged across three of the four barriers.
Conclusions
To be effective, programs and policies to improve ART adherence among youth in Uganda must address the special challenges that adolescents and young adults confront in achieving optimal adherence. For example, training on budgeting and savings practices could help promote their transition to financial independence. School staff could develop strategies to help students take their medications consistently and confidentially. While challenging to extend the range of services provided by HIV clinics, successful efforts will require engaging the family, peers, and larger community of health and educational providers to support adolescents and young adults living with HIV to live longer and healthier lives.
Trial registration
ClinicalTrials.gov
Identifier:
NCT02514356
. Registered August 3, 2015.
Journal Article
HIV Care Experiences During the COVID-19 Pandemic: Mixed-Methods Telephone Interviews with Clinic-Enrolled HIV-Infected Adults in Uganda
2021
COVID-19 measures that restrict movement may negatively impact access to HIV care and treatment. To contribute to the currently limited evidence, we used telephone interviews with quantitative and qualitative questions to examine how clients perceived COVID-19 and its effect on their HIV care and ART adherence. One hundred (n = 100) Ugandan adults on ART from an existing study were randomly selected and enrolled. Interviews were recorded, transcribed, and analyzed using descriptive statistics and rapid content analyses. 76% of clients indicated that COVID-19 negatively impacted travel to HIV clinics; 54% perceived that coming to the clinic increased their risk of acquiring COVID-19; and 14% said that COVID-19 had negatively impacted their ART adherence. Qualitative feedback suggests that fear of COVID-19 infection discouraged clinic attendance while stay-at-home orders helped routinize ART adherence and employ new community-based approaches for HIV care. Addressing negative unintended consequences of COVID-19 lockdowns on HIV care is urgently needed.
Journal Article
Rapid mixed-methods assessment of COVID-19 impact on Latinx sexual minority men and Latinx transgender women
by
Izenberg, Max
,
Barreras, Joanna L.
,
Gonzalez, Ana
in
Adult
,
Ambulatory care
,
Antiretroviral drugs
2020
We conducted a rapid, mixed-methods assessment to understand how COVID-19 affected Latinx sexual minority men (LSMM) and transgender women (LTGW). Using a computer-assisted telephone interviewing software, one interviewer called 52 participants (randomly sampled from a larger HIV prevention pilot study aiming to increase HIV knowledge and testing frequency; n = 36 LSMM and n = 16 LTGW) between 04/27/20-05/18/20. We quantified core domains using the Epidemic-Pandemic Impacts Inventory scale and provided important context through open-ended qualitative questions assessing: 1) COVID-19 infection history and experiences with quarantine; 2) Health and healthcare access; 3) Employment and economic impact of COVID-19. Participants reported increases in physical conflict or verbal arguments with a partner (13.5%) or other adult(s) (19.2%) due to stressors associated with the safer-at-home order. Participants also reported increased alcohol consumption (23.1%), problems with sleep (67.3%) and mental health (78.4%). Further, disruptions in access to Pre-Exposure Prophylaxis or PrEP–a daily pill to prevent HIV–occurred (33.3% of 18 participants who reported being on PrEP). Many said they received less medical attention than usual (34.6%), and LTGW reported delays in critical gender-affirming hormones/procedures. Half of the participants lost their jobs (50.0%); many undocumented participants relayed additional financial concerns because they did not qualify for financial assistance. Though no COVID-19 infections were noted, COVID-19 dramatically impacted other aspects of health and overall wellbeing of LSMM and LTGW. Public health responses should address the stressors faced by LSMM and LTGW during the COVID-19 pandemic and the impact on wellbeing.
Journal Article
Changes in ART Adherence Relate to Changes in depression as Well! Evidence for the Bi-directional Longitudinal Relationship Between Depression and ART Adherence from a Prospective Study of HIV Clients in Uganda
by
Linnemayr Sebastian
,
Ghosh-Dastidar, Bonnie
,
Wagner, Glenn J
in
Adherence
,
Adherents
,
Antiretroviral drugs
2020
Studies have documented how levels and change in depression correspond to ART non-adherence. However, few studies have examined how levels of and change in adherence may relate to levels of and change in depression, although one might expect mental health to be related to physical health and how successful one is in managing disease. To assess the bidirectional nature of the association between these two constructs, we examined data from a prospective trial of an ART adherence intervention in Uganda that followed 143 participants over 20 months. Adherence was measured using electronic monitoring caps; non-adherence was defined as missing > 10% of prescribed doses; self-reported depression was measured using the Patient Health Questionnaire (PHQ-9), and PHQ-9 > 4 defined the presence of at least minor depression. Adjusted linear and logistic regression models were used to examine the longitudinal relationships between depression and non-adherence. At baseline, 40.6% had at least minor depression and 37.1% were non-adherent. Time varying change in the classification of depression (e.g., becoming depressed) predicted change in non-adherence status (e.g., becoming non-adherent), and this association remained when examining continuous measures of the constructs. Similarly, time varying measures of increases in non-adherence predicted increases in depression, regardless of whether continuous or binary classification measures were used. A temporal trend of increased non-adherence over time was observed, and this was accelerated by an increase in depression. Furthermore, those who had at least minor depression at baseline were more likely to be non-adherent at follow-up. These findings support the potential benefits of depression care and adherence support for improving adherence and mental health, respectively, and call for further research to examine such benefits.The trial has been registered with ClinicalTrials.gov (NCT02503072).
Journal Article
A randomized controlled trial study of the acceptability, feasibility, and preliminary impact of SITA (SMS as an Incentive To Adhere): a mobile technology-based intervention informed by behavioral economics to improve ART adherence among youth in Uganda
by
Samba, Clare
,
Wagner, Zachary
,
Linnemayr, Sebastian
in
Acquired immune deficiency syndrome
,
Adolescent
,
Adolescent medicine
2020
Background
Studies report serious adherence problems among youth (individuals age 15–24 years of age) in Uganda. Recent growth in mobile phone ownership has highlighted the potential of using text-based interventions to improve antiretroviral treatment (ART) adherence among Ugandan youth. We piloted a randomized controlled trial of a text-based intervention providing weekly real-time antiretroviral adherence feedback, based on information from a smart pill box, to HIV-positive Ugandan youth. In this paper, we report the acceptability, feasibility, and preliminary impact of the intervention.
Methods
We randomized participants to a control group, or to receive messages with information on either their own adherence levels (Treatment 1 - T1), or their own adherence and peer adherence levels (Treatment 2 – T2). We conducted six focus groups from December 2016 to March 2017 with providers and youth ages 15–24, double coded 130 excerpts, and achieved a pooled Cohen’s Kappa of 0.79 and 0.80 based on 34 randomly selected excerpts.
Results
The quantitative and qualitative data show that the intervention was deemed acceptable and feasible. After controlling for baseline adherence, the T1 group had 3.8 percentage point lower adherence than the control group (95% CI -9.9, 2.3) and the T2 group had 2.4 percentage points higher adherence than the control group (95% CI -3.0, 7.9). However, there was an increasing treatment effect over time for the T2 group with the largest effect towards the end of the study; a 2.5 percentage point increase in the initial 9-weeks that grows steadily to 9.0 percentage points by the last 9-weeks of the study. We find negative treatment effects for T1 in 3 of the 4 9-week intervals. This pilot study was not designed to detect statistically significant differences.
Conclusions
Improving youth’s adherence by supplementing information about their adherence with information about the adherence of peers is a promising new strategy that should be further evaluated in a fully-powered study. Providing one’s own adherence information alone appears to have less potential.
Trial registration
NCT02514356
07/30/2015.
Journal Article
Exposure to political violence and health risk behaviors of Palestinian youth
by
Karam, Rita T.
,
Khammash, Umaiyeh
,
Huang, Wenjing
in
Addictive behaviors
,
Adolescent
,
Adolescent health
2025
Background
Exposure to political violence, which pervades many parts of the Middle East and Northern African (MENA) region, is a key potential factor behind the rising rates of risky behaviors among youth, such as drug use, alcohol use, and sexual activity. Theory and empirical work on youth elsewhere suggests that individual characteristics, mental health, and youths’ future orientation play a role in such behaviors. It is possible that political violence impacts behavior in part through its effects on these factors, in particular mental health. However, very little is known about the determinants of youth risk behavior in the region. Understanding the determinants will help MENA countries to deal with emerging public health threats as well as risks to youth health and well-being resulting from engagement in risky behavior. We examined determinants of risky behavior among Palestinian youth in the West Bank and East Jerusalem.
Methods
We employed structural equation modeling using a 2014 nationally representative data from the Palestinian Youth Health Risk Study to examine the factors associated with engagement of youth ages 18–24 (
N
= 1449) in risky behaviors.
Results
Personal experience of political violence was the strongest direct predictor of engagement in interpersonal violence (
β
= 0.21,
p
= 0.00) and substance use (
β
= 0.21,
p
= 0.00). With respect to indirect effects, global distress mediates the impact of witnessing and vicariously experiencing violence on the three outcomes. However, no association was found between personally experiencing political violence and global distress. The study also identified several individual characteristics, such as religiosity, that may be protective against risky behavior. Females are less likely to engage in risky behavior than males, despite experiencing higher levels of global distress.
Conclusions
The study is the first to use population-based data to test the effects of exposure to political violence on key risky health behaviors of Palestinian youth, a population facing protracted conflict and hardship for which solutions remain elusive. The findings suggest the need for customized interventions to target male and female Palestinians at an early age to develop their coping skills in dealing with violence and distress.
Trial registration
Not applicable.
Journal Article
Short Message Service (SMS)-Based Intervention to Improve Treatment Adherence among HIV-Positive Youth in Uganda: Focus Group Findings
by
Kambugu, Andrew
,
Haberer, Jessica
,
Wabukala, Peter
in
Adolescent
,
Adult
,
Anti-HIV Agents - administration & dosage
2015
This paper presents one of the first qualitative studies to discuss programmatic barriers to SMS-based interventions for HIV-positive youth and discusses pathways through which youth perceive them to work. We conducted six focus groups with 20 male and 19 female HIV-positive youths in two clinics in Kampala, Uganda. We find that youth commonly use SMS as over 90% of this study's youths knew how to read, write and send messages and almost three-fourths of them had phones. Youth strongly felt that the success of this intervention hinged on ensuring confidentiality about their HIV-positive status. Key programmatic challenges discussed where restrictions on phone use and phone sharing that could exclude some youth. Participants felt that the intervention would improve their adherence by providing them with needed reminders and social support. Youths' suggestions about intervention logistics related to content, frequency, timing and two-way messages will be helpful to practitioners in the field.
Journal Article
Impact of behavioral economics to improve antihypertensive therapy adherence, a pilot randomized controlled trial in Los Angeles
2025
Routinized pill-taking can enhance medication adherence but is difficult to achieve. In this pilot randomized controlled trial we assess the feasibility, acceptability, and preliminary efficacy of a novel behavioral economics-based approach to medication-adherence. We enrolled 60 hypertensive adults, who all received information on pill-routinization and selected an existing behavioral routine (‘anchor’) to assist with routinization of pill-taking. Participants were randomized into 3 groups: 1)‘Control’ receiving usual care (
n
= 20); 2)‘Messages’ receiving daily text messages (
n
= 20); and 3)‘Incentives’ receiving both text messages and rewards for medication adherence (
n
= 20). Interventions lasted 3 months, followed by a 6-month post-intervention period during which we assessed medication-adherence and conducted standardized assessments of acceptability. The study demonstrated high feasibility and acceptability, with 90% of participants willing to refer others to the study. Mean adherence during the extended follow-up period (months 7–9) was numerically higher in both intervention arms than the control arm (Control 75%, Messages 84%, and Incentives 77%) though this pilot study was not powered to detect a statistically significant difference (
P
= 0.73). While this pilot study was under-powered to detect between-group differences, the novel behavioral economics habit formation approach was feasible, acceptable, and yielded promising results, warranting completion of a fully-powered trial.
Registration: URL:
https://www.clinicaltrials.gov
; Unique identifier: NCT04029883; registered 23/07/2019.
Journal Article
INcentives and ReMINDers to Improve Long‐Term Medication Adherence (INMIND): impact of a pilot randomized controlled trial in a large HIV clinic in Uganda
by
Ghai, Ishita
,
Odiit, Mary
,
Linnemayr, Sebastian
in
Acquired immune deficiency syndrome
,
Adult
,
AIDS
2024
Introduction Habits are a common strategy for successfully countering medication non‐adherence, yet existing interventions do not support participants during the long habit formation period, resulting in high attrition. We test a novel intervention combining text messages and incentives with anchoring to support antiretroviral therapy (ART) pill‐taking habits. Methods In a randomized, parallel controlled trial, a sample of 155 participants 18 years and older who initiated ART within 3 months were recruited at Mildmay Uganda between October 2021 and April 2022. All participants were educated on the anchoring strategy and chose an anchor, that is existing routines, to pair with pill‐taking. Participants were randomized to either usual care (C = 49), daily text message reminders to follow their anchoring plan (Messages group; T1 = 49) or messages and incentives conditional on pill‐taking in line with their anchor (Incentives group; T2 = 57). Assessments occurred at baseline, month 3 (end of intervention) and month 9 (end of observation period). The primary outcomes are electronically measured mean adherence and pill‐taking consistent with participants’ anchor time. Results The primary outcome of pill‐taking in line with the anchoring plan was higher in the Incentives group during the 3‐month intervention (12.2 p.p. [95% CI: 2.2 22.2; p = .02]), and remained significantly higher after the incentives were withdrawn (months 4−6 (14.2 p.p. [95% CI 1.1 27.2; p = .03]); months 7−9 (14.1 p.p. [95% CI −0.2 28.5; p = .05])). Mean adherence was higher in both treatment groups relative to the control group during the intervention (T1 vs. C, p = .06; T2 vs. C, p = .06) but not post‐intervention. Conclusions The promising approach of using incentives to support habit formation among ART treatment initiators needs to be evaluated in a fully powered study to further our understanding of the habit formation process and to evaluate its cost‐effectiveness.
Journal Article
The association between adherence to antiretroviral therapy and viral suppression under dolutegravir‐based regimens: an observational cohort study from Uganda
by
Wang, Zetianyu
,
Odiit, Mary
,
Wagner, Zachary
in
Adult
,
Anti-HIV Agents - therapeutic use
,
Antiretroviral agents
2024
Introduction Millions of people living with HIV (PLWH) take oral antiretroviral therapy (ART), which requires a lifetime of consistent medication adherence. The relationship between adherence and poor HIV outcomes is well documented. Newer ART regimens that include dolutegravir (DTG) could be more forgiving, but empirical evidence on the relationship between adherence and viral suppression under DTG is only emerging. Methods In this observational cohort study (secondary analysis of data from a randomized trial), we used data from 313 ART clients from a large HIV clinic in Kampala, Uganda. Over the 4‐year study period (January 2018–January 2022), 91% switched from non‐DTG regimens to DTG regimens. We measured adherence using Medication Event Monitoring Systems‐caps and extracted prescription information and viral load measures from electronic health records. We estimated unadjusted linear regressions and adjusted models that included individual and time fixed‐effects. Results Under non‐DTG regimens, 96% of participants were virally suppressed (defined as viral load < 200 copies/ml) when adherence was 90% or higher in the 3 months before viral load measurement. Viral suppression was 32 percentage points lower when adherence was between 0% and 49% (95% CI −0.44, −0.20, p < 0.01), 12 percentage points lower when adherence was between 50% and 79% (95% CI −0.23, −0.02, p < 0.01), and not significantly different when adherence was between 80% and 89% (effect of 0.00, 95% CI −0.06, 0.07, p = 0.81). In contrast, for participants taking DTG, there was no statistically significant difference in viral suppression among any of the four adherence levels; more than 95% were virally suppressed at each adherence level. On average, switching to DTG increased viral suppression by 6 percentage points in our adjusted models (95% CI 0.00, 0.13, p = 0.03). Conclusions There was no significant association between adherence levels and viral suppression among PLWH taking DTG regimens, suggesting a high degree of forgiveness for missed doses. The use of DTG should be prioritized over older regimens, particularly for those with low adherence. Clinical Trial Number NCT03494777.
Journal Article