Digital Peer-support-based Anti-HIV Stigma Intervention Among Adolescents Living With HIV in Ethiopia

Feasibility and Effectiveness of Digital Peer-support-based Anti-HIV Stigma Intervention in Improving Clinical Outcomes Among Adolescents Living With HIV in Ethiopia

Advances in HIV care and treatment turned a once deadly disease into a chronic condition where people living with HIV, including perinatally HIV acquired children, can now lead a healthy life and live longer with their highly effective antiretroviral therapy. Despite the advancements and successes in HIV care and treatment, HIV-related stigma remained a challenge to people living with HIV and for the provision of the available successful treatment and support. Stigma and discrimination related to HIV infection inhibit health-seeking behaviour, clinical outcomes, physical and psychosocial wellbeing and is a major obstacle for timely diagnosis.

Peer support programs to people living with HIV appeared to have improved self-confidence of members and consequently reduced self-stigma and improved their coping ability against external stigma. However, these services are limited in terms of geography owing to lack of adequate financing to cover operational costs for adolescents coming from rural areas and space and facility limitation to accommodate large groups.

The eHealth services have potential to provide some of the services offered in the in-person sessions of the peer support group. Despite this important potential of eHealth services, they are underutilized and are not often used to target HIV-related stigma in adolescents living with HIV. The present study will investigate whether the digital peer-support anti-HIV stigma reduces internalized and anticipated stigma among adolescents living with HIV (ALHIV) in South Ethiopia. Further, we will explore the health-related outcomes including adolescent's psychological wellbeing, retention in care and sustained viral load suppression.

Study Overview

• Status: Recruiting
• Conditions: HIV-related Stigma; Retention in Care; Psychological Wellbeing
• Intervention / Treatment: Behavioral: Peer support based digital anti-HIV stigma intervention; Behavioral: A standard in-clinic in-person psychosocial support

Detailed Description

Introduction The advent of the antiretroviral therapy (ART) and its widespread use have turned HIV/AIDS, a condition once considered as a death sentence, into a chronic disease with perinatally HIV infected children are now living longer and transition into adulthood. Despite this clinical success story, psychological wellbeing of adolescents is overlooked, mainly due to HIV-related stigma, as interventions to reduce stigma did not often target children.

Stigma and discrimination related to HIV infection inhibit health-seeking behavior, clinical outcomes, physical and psychosocial wellbeing and is a major obstacle for timely diagnosis and linkage to care, including adherence to antiretroviral therapy. As a counter to negative experiences, peer-support group by people living with HIV improved self-confidence of members and consequently reduced self-stigma and improved their coping ability against external stigma.

The eHealth, which comprise a range of information and communication resources and tools including text messaging, videos and social media, is uniquely positioned to share interactive health information pseudonymously. However, there is a lack of digital peer-support group interventions for adolescents with a focus on HIV stigma reduction. While different eHealth services provide social support and have the potential to target interventions delivered in the traditional methods, only a few have used it, mostly for ART adherence interventions.

A recent review of stigma reduction interventions in people living with HIV reported a lack of well-designed intervention studies investigating stigma reduction to wither the challenge of HIV-related stigma in HIV care and support. Thus, there is a need for anti-stigma interventions and the effect on health-related outcomes among adolescents living with HIV.

The in-person in-clinic psychosocial peer-support is widely implemented, but this important program had shortfalls with operational logistics. The program, for example, has been severely interrupted during the high picks of covid-19 restrictions, there were also issues of accessibility and the need to travel long distance, unintended disclosure, and funding availability to run programs.

A recent systematic review identified that adolescents and caregivers identified psychosocial needs as their priority where stigma and HIV status disclosure were the most reported challenges. Despite effective anti-stigma interventions are reported among adults living with HIV, there is limited evidence of effective anti-stigma interventions among adolescents living with HIV. The intervention approaches used in previous interventions include information-based approaches, skills building, counselling/support groups, and contact with affected groups. Most interventions, however, used more than one approach though 81% targeted a single domain of stigma and 85% targeted a single socio-ecologic level.

Using a digital peer support-based intervention, the present study will bridge the gaps in previous studies by targeting more than one stigma mechanism and ecological levels and by assessing the impact of anti-HIV stigma interventions. The present study will investigate whether the digital peer-support anti-HIV stigma reduces internalized and anticipated stigma among ALHIV in South Ethiopia. Further, we will explore the health-related outcomes including adolescent's psychological wellbeing, retention in care and sustained viral load suppression.

Objective Evaluate the effect of digital peer-support-based intervention on anticipated- and internalized HIV-stigma, psychological wellbeing, and retention in care among adolescents and youth living with HIV.

Methods We follow the MRC framework for complex intervention as methodologic guide, and to evaluate the intervention, we will conduct a quasi-experimental study for the duration of 16 weeks. Validated tools tested in Ethiopian context in the project will be used to measure the primary outcome, internalized- and anticipated-HIV-related stigma. The twelve item short version of the Berger HIV-related stigma scale, the HIV stigma scale-12 (HSS-12), will be used to measure HIV-related stigma. The scale has a Likert scale response options, 1 "Strongly disagree" to 4"Strongly agree". The possible score range for the total HSS-12 scale will be 12 to 48. Higher values indicate a higher level of stigma. The secondary outcomes include psychological wellbeing, mainly depression and anxiety, and retention in care. The Patient Health Questionnaire-9 (PHQ-9) will be used to measure depression and the Generalized Anxiety Disorder-7 (GAD-7) will be used to measure anxiety. Both PHQ-9 and GAD-7 have response options in Likert scale ranging from 0"never at all" to 3"almost always". For the PHQ-9, possible score range is 0 to 27, and for the GAD-7, it is 0 to 21, where higher values indicate a worse outcome. Retention in care will be measured based on proportion of kept visits from a total scheduled visits during the past 12-months preceding the assessment period. A linear mixed model will be used to estimate effect of the intervention on psychological and/or clinical outcomes; a structured equation modelling will be used to designate possible causal pathways for the outcomes of interest.

• Study Type: Interventional
• Enrollment (Estimated): 282
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Melkamu Merid Mengesha, Master of Public Health in Epi; Phone Number: +251912094941; Email: melkamu_merid.mengesha@med.lu.se
• Study Contact Backup: Name: Cecilia Follin, PhD; Phone Number: +46709760463; Email: cecilia.follin@med.lu.se

Study Locations

• Ethiopia
  • South Ethiopia
    • Arba Minch, South Ethiopia, Ethiopia
      • Completed
      • Arba Minch General Hospital
    • Dara, South Ethiopia, Ethiopia
      • Recruiting
      • Dilla University Teaching Hospital
      • Contact: Kassahun Alehegn, MD; Phone Number: +251912770715; Email: alehegnkassahun12@gmail.com
    • Gofa, South Ethiopia, Ethiopia
      • Recruiting
      • Sawula General Hospital
      • Contact: Matusala Samuel, BSc; Phone Number: +251909203360; Email: matosami90@gmail.com
    • Jinka, South Ethiopia, Ethiopia
      • Recruiting
      • Jinka General Hospital
      • Contact: Tizita Chebud, BSc; Phone Number: +251913361175; Email: drbisreg@gmail.com
    • Sodo, South Ethiopia, Ethiopia
      • Completed
      • Wolaita Sodo University Comprehensive Specialized Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult
• Accepts Healthy Volunteers: No

Description

Inclusion Criteria:

• Adolescents who have been disclosed of their HIV status
• adolescents and young people between the age of 15 and 22 years old
• receiving antiretroviral medications; and
• completed at least first cycle primary school education (i.e. grade 4).

Exclusion Criteria:

• Participants with known diagnosed mental health condition
• Participants with hearing loss or loss of vision

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Health Services Research
• Allocation: Non-Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Digital peer support; In the digital peer support arm, adolescents and youth living with HIV will be networked digitally to share their experiences and receive a structured educational message designed based on literature review and also referring the national psychosocial support guidelines. Adolescents and youth who don't have smartphones will be offered with one to enable them connect digitally. Brief orientation about the Telegram messaging app will be provided to all participants in the intervention arm to close any digital divide. Two modules (individual life skills module and the social mastery skills module) in 12 sessions (module 1: introduction, goal-setting, decision-making, myths and misconceptions about HIV, self-acceptance, self-care, resilience; module 2: coping skills, communication skills, onward disclosure of HIV status, understanding stigma language, and building relationship) will be offered over 16 weeks.	Behavioral: Peer support based digital anti-HIV stigma intervention; Participants in the intervention arm will remotely attend educational sessions facilitated by peer leaders and supervised by healthcare providers and members of the research team. They will receive audiovisual content as part of modules (two modules in 12 sessions) designed to enhance both individual and social life skills. The intervention group will be organized into seven groups, each consisting at most 20 participants. Peer leaders, who received training on facilitation skills, will facilitate discussions on the session topics, with each session expected to last about one hour. To bridge the digital divide, the research team will provide smartphones to participants to support online discussions via the Telegram messaging platform. Technical orientation on using the Telegram app for discussions will be provided to all participants, regardless of their prior experience with the platform. Internet data for connectivity will be secured every fortnightly over the period of 16 weeks.; Behavioral: A standard in-clinic in-person psychosocial support; In arm 2, the control arm, participants will receive the existing psychosocial support routinely provided in the hospitals where they receive care. As part of this in-clinic peer support, adolescents living with HIV meet monthly to sit together and discuss a topic under the supervision of an assigned healthcare provider. After the discussion, they spend time playing together, followed by sharing a meal before departing, with a small transport allowance provided.
Active Comparator: In-person peer support; In the in-clinic in-person peer support, adolescents and youth living with HIV meet in-person fortnightly and share experiences and receive peer led lessons based on the national psychosocial support module. They also had time to spend together playing and eating lunch. Furthermore, they receive a small amount of fee to cover transport.	Behavioral: A standard in-clinic in-person psychosocial support; In arm 2, the control arm, participants will receive the existing psychosocial support routinely provided in the hospitals where they receive care. As part of this in-clinic peer support, adolescents living with HIV meet monthly to sit together and discuss a topic under the supervision of an assigned healthcare provider. After the discussion, they spend time playing together, followed by sharing a meal before departing, with a small transport allowance provided.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
HIV-related stigma: internalised and anticipated	The Brief HIV Stigma Scale-12, translated into Amharic and validated for use in the Ethiopian context, will be employed to assess HIV-related stigma among adolescents living with HIV. The tool comprises 12 items measuring four constructs, each represented by three items. Responses are rated on a four-point Likert scale ranging from 1 ("strongly disagree") to 4 ("strongly agree"). Total scores range from 12 to 48, with higher scores indicating greater levels of stigma (i.e., worse outcomes).	From enrollment at baseline to the end of intervention at 16 weeks.

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Psychological well-being	1. Psychological well-being will be assessed using measures of depression and anxiety. Depression will be measured with the Patient Health Questionnaire-9 (PHQ-9), a nine-item scale scored from 0 ("never at all") to 3 ("nearly everyday"), with total scores ranging from 0 to 27; higher scores indicate worse depressive symptoms. Anxiety will be assessed using the Generalized Anxiety Disorder-7 (GAD-7), which uses the same response format (0 to 3) and yields scores from 0 to 21, with higher values indicating severe anxiety symptoms. Psychological well-being will be defined as "good" and "poor". Participants with PHQ-9 and GAD-7 scores<10 will be classified as having good psychological well-being; others will be classified as poor.	From enrollment at baseline to the end of intervention at 16 weeks.
Retention in care	1. Retention in HIV care will be measured as the proportion of kept clinic visits out of the total scheduled visits during the 12 months preceding the assessment period.	From enrollment at baseline to the end of intervention at 16 weeks.

Collaborators and Investigators

• Sponsor: Lund University

Publications and helpful links

General Publications

• Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006 May 22;166(10):1092-7. doi: 10.1001/archinte.166.10.1092.
• Levis B, Benedetti A, Thombs BD; DEPRESsion Screening Data (DEPRESSD) Collaboration. Accuracy of Patient Health Questionnaire-9 (PHQ-9) for screening to detect major depression: individual participant data meta-analysis. BMJ. 2019 Apr 9;365:l1476. doi: 10.1136/bmj.l1476.
• Kane, J.C. et al. (2019) 'A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries', BMC Medicine, 17(1), p. 17. Available at: https://doi.org/10.1186/s12916-019-1250-8.
• Dyer, J. et al. (2021) 'The Psychosocial Effects of the COVID-19 Pandemic on Youth Living with HIV in Western Kenya', AIDS and behavior, 25(1), pp. 68-72. Available at: https://doi.org/10.1007/s10461-020-03005-x.
• Chem, E.D. et al. (2022) 'Health-related needs reported by adolescents living with HIV and receiving antiretroviral therapy in sub-Saharan Africa: a systematic literature review', Journal of the International AIDS Society, 25(8), p. e25921. Available at: https://doi.org/10.1002/JIA2.25921.
• Mark, D. et al. (2019) 'Peer Support for Adolescents and Young People Living with HIV in sub-Saharan Africa: Emerging Insights and a Methodological Agenda', Current HIV/AIDS Reports, 16(6), pp. 467-474. Available at: https://doi.org/10.1007/s11904-019-00470-5.
• Biru, M. et al. (2018) 'Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers' Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment', Comprehensive Child and Adolescent Nursing, 41(4), pp. 293-309. Available at: https://doi.org/10.1080/24694193.2017.1372531.
• Andersson, G.Z. et al. (2020) 'Stigma reduction interventions in people living with HIV to improve health-related quality of life.', The lancet. HIV, 7(2), pp. e129-e140. Available at: https://doi.org/10.1016/S2352-3018(19)30343-1.
• Rao, D., Frey, S. and Ramaiya, M. (2018) 'eHealth for Stigma Reduction Efforts Designed to Improve Engagement in Care for People Living with HIV', Current HIV/AIDS Reports, 15(6), pp. 397-402. Available at: https://doi.org/10.1007/s11904-018-0414-z.
• Simpson, N. et al. (2021) 'Insaka: mobile phone support groups for adolescent pregnant women living with HIV', BMC pregnancy and childbirth, 21(1), pp. 663-663. Available at: https://doi.org/10.1186/s12884-021-04140-6.
• Mburu, G. et al. (2013) 'Resisting and challenging stigma in Uganda: the role of support groups of people living with HIV', Journal of the International AIDS Society, 16(3S2), p. 18636. Available at: https://doi.org/10.7448/IAS.16.3.18636.
• Sweeney SM and Vanable PA (2016) 'The Association of HIV-Related Stigma to HIV Medication Adherence: A Systematic Review and Synthesis of the Literature', AIDS and behavior, 20(1), pp. 29-50. Available at: https://doi.org/10.1007/s10461-015-1164-1.
• Chory, A. et al. (2021) 'HIV-Related Knowledge, Attitudes, Behaviors and Experiences of Kenyan Adolescents Living with HIV Revealed in WhatsApp Group Chats', https://doi.org/10.1177/2325958221999579, 20. Available at: https://doi.org/10.1177/2325958221999579.
• Gesesew (2017) 'Significant association between perceived HIV related stigma and late presentation for HIV/AIDS care in low and middle-income countries: A systematic review and meta-analysis', PLOS ONE, 12(3), p. e0173928. Available at: https://doi.org/10.1371/journal.pone.0173928.
• Stangl, A.L. et al. (2013) 'A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come?', Journal of the International AIDS Society, 16(3 Suppl 2), pp. 18734-18734. Available at: https://doi.org/10.7448/IAS.16.3.18734.

Study record dates

Study Major Dates

• Study Start (Actual): November 13, 2025
• Primary Completion (Estimated): April 1, 2026
• Study Completion (Estimated): May 1, 2026

Study Registration Dates

• First Submitted: November 24, 2025
• First Submitted That Met QC Criteria: February 19, 2026
• First Posted (Actual): February 23, 2026

Study Record Updates

• Last Update Posted (Actual): February 23, 2026
• Last Update Submitted That Met QC Criteria: February 19, 2026
• Last Verified: February 1, 2026

More Information

Terms related to this study

• Keywords: HIV-related stigma; digital peer-support; adolescents living with HIV; south Ethiopia
• Other Study ID Numbers: Dnr 2023-04045-01

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: Data collected in this study include sensitive individual information and hence the research team do not have the right to share individual patient data.

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No