Abstract
This study examined the feasibility and acceptability of two group-based interventions: group-cognitive behavioral therapy (G-CBT) and a family-strengthening intervention delivered via multiple family group (MFG-FS), to address HIV stigma among adolescents living with HIV (ALHIV) and their caregivers. A total of 147 adolescent -caregiver dyads from 9 health clinics situated within 7 political districts in Uganda were screened for eligibility. Of these, 89 dyads met the inclusion criteria and provided consent to participate in the study. Participants were randomized, at the clinic level, to one of three study conditions: Usual care, G-CBT or MFG-FS. The interventions were delivered over a 3-month period. While both adolescents and their caregivers attended the MFG-FS sessions, G-CBT sessions were only attended by adolescents. Data were collected at baseline, 3 and 6-months post intervention initiation. The retention rate was 94% over the study period. Across groups, intervention session attendance ranged between 85 and 92%, for all sessions. Fidelity of the intervention was between 85 and 100%, and both children and caregivers rated highly their satisfaction with the intervention sessions. ALHIV in Uganda, and most of sub–Saharan Africa, are still underrepresented in stigma reduction interventions. The Suubi4Stigma study was feasible and acceptable to adolescents and their caregivers –supporting testing the efficacy of the interventions in a larger trial.
Similar content being viewed by others
References
Valdiserri RO. HIV/AIDS Stigma: an impediment to Public Health. Am J Public Health. 2002;92:341–2.
Gesesew HA, Tesfay Gebremedhin A, Demissie TD et al. 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. Paraskevis D, editor. PLOS ONE. 2017;12:e0173928.
Katz IT, Ryu AE, Onuegbu AG, et al. Impact of HIV-related stigma on treatment adherence: systematic review and meta‐synthesis. J Int AIDS Soc. 2013;16:18640.
Kalichman SC, Shkembi B, Wanyenze RK, et al. Perceived HIV stigma and HIV testing among men and women in rural Uganda: a population-based study. Lancet HIV. 2020;7:e817–24.
Steward WT, Bharat S, Ramakrishna J, et al. Stigma is Associated with delays in seeking care among HIV-Infected people in India. J Int Assoc Provid AIDS Care JIAPAC. 2013;12:103–9.
Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a Fundamental cause of Population Health inequalities. Am J Public Health. 2013;103:813–21.
Kane JC, Elafros MA, Murray SM, et al. A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries. BMC Med. 2019;17:17.
Kip EC, Udedi M, Kulisewa K, et al. Stigma and mental health challenges among adolescents living with HIV in selected adolescent-specific antiretroviral therapy clinics in Zomba District, Malawi. BMC Pediatr. 2022;22:253.
Nabunya P, Namuwonge F, HIV-Related Shame. Stigma and the Mental Health Functioning of Adolescents Living with HIV: findings from a pilot study in Uganda. Child Psychiatry Hum Dev. 2023;54:1771–8.
Robinson A, Cooney A, Fassbender C, et al. Examining the Relationship between HIV-Related Stigma and the Health and Wellbeing of children and adolescents living with HIV: a systematic review. AIDS Behav. 2023;27:3133–49.
UNAIDS. UNAIDS DATA 2023 [Internet]. 2023. Available from: https://www.unaids.org/en/resources/documents/2023/2023_unaids_data.
UNAIDS. Global Partnership for Action to Eliminate All Forms of HIV-Related Stigma and Discrimination. [Internet]. 2023. Available from: https://www.unaids.org/en/resources/documents/2023/global-partnership-hiv-stigma-discrimination.
Bogart LM, Cowgill BO, Kennedy D, et al. HIV-related stigma among people with HIV and their families: a qualitative analysis. AIDS Behav. 2008;12:244–54.
Mafune RV, Lebese RT, Nemathaga LH. Challenges faced by caregivers of children on antiretroviral therapy at Mutale Municipality selected healthcare facilities, Vhembe District, Limpopo Province. Curationis. 2017;40:e1–e9.
Nabunya P, Namuwonge F, Sensoy Bahar O, et al. Stigma by Association, Parenting Stress, and the Mental Health of Caregivers of adolescents living with HIV in Uganda. J Adolesc Health. 2023;72:18–S23.
Kasande M, Natwijuka A, Katushabe Snr E, et al. Experiences of caring for adolescents living with HIV (ALHIV): a qualitative interview with caregivers. HIVAIDS - Res Palliat Care. 2022;14:577–89.
Powell-Cope GM, Brown MA. Going public as an AIDS family caregiver. Soc Sci Med. 1992;34:571–80.
Gamarel KE, Kuo CC, Boyes ME, et al. The dyadic effects of HIV stigma on the mental health of children and their parents in South Africa. J HIVAIDS Soc Serv. 2017;16:351–66.
Murray SM, Familiar I, Nakasujja N, et al. Caregiver mental health and HIV-infected child wellness: perspectives from Ugandan caregivers. AIDS Care. 2017;29:793–9.
Armstrong MI, Birnie-Lefcovitch S, Ungar MT. Pathways between Social Support, Family Well Being, Quality of Parenting, and child resilience: what we know. J Child Fam Stud. 2005;14:269–81.
Andersson GZ, Reinius M, Eriksson LE, et al. Stigma reduction interventions in people living with HIV to improve health-related quality of life. Lancet HIV. 2020;7:e129–40.
Hartog K, Hubbard CD, Krouwer AF, et al. Stigma reduction interventions for children and adolescents in low- and middle-income countries: systematic review of intervention strategies. Soc Sci Med. 2020;246:112749.
Martin R, Ashimosi C, Nyandiko W, et al. A systematic review of interventions to reduce HIV-related stigma among primary and secondary school teachers. AIDS Care. 2022;34:1–6.
Chem ED, Ferry A, Seeley J, et al. Health-related needs reported by adolescents living with HIV and receiving antiretroviral therapy in sub‐Saharan Africa: a systematic literature review. J Int AIDS Soc. 2022;25:e25921.
Uganda AIDS. Commission. Facts on HIV and AIDS in Uganda 2022. [Internet]. 2022. Available from: https://uac.go.ug/indexphp?option=com_sppagebuilder&view=page&id=24&Itemid=140.
Mendelsohn JB, Fournier B, Caron-Roy S, et al. Reducing HIV-related stigma among young people attending school in Northern Uganda: study protocol for a participatory arts-based population health intervention and stepped-wedge cluster-randomized trial. Trials. 2022;23:1043.
Mutumba M, Ssewamala F, Namirembe R, et al. A Multilevel Integrated intervention to reduce the impact of HIV Stigma on HIV Treatment outcomes among adolescents living with HIV in Uganda: protocol for a Randomized Controlled Trial. JMIR Res Protoc. 2022;11:e40101.
Nabunya P, Ssewamala FM, Bahar OS, et al. Suubi4Stigma study protocol: a pilot cluster randomized controlled trial to address HIV-associated stigma among adolescents living with HIV in Uganda. Pilot Feasibility Stud. 2022;8:95.
Fordham B, Sugavanam T, Edwards K, et al. The evidence for cognitive behavioural therapy in any condition, population or context: a meta-review of systematic reviews and panoramic meta-analysis. Psychol Med. 2021;51:21–9.
Beck AT. Cognitive therapy: past, present, and future. J Consult Clin Psychol. 1993;61:194–8.
Shi Y, Zhao M, Chen S, et al. Effects of cognitive behavioral therapy on people living with HIV and depression: a systematic review and meta-analysis. Psychol Health Med. 2019;24:578–94.
McKay MM, Gonzales JJ, Stone S, et al. Multiple family therapy groups: a responsive intervention model for Inner City families. Soc Work Groups. 1995;18:41–56.
Ruffolo MC, Kuhn MT, Evans ME. Support, empowerment, and education: a study of multiple Family Group Psychoeducation. J Emot Behav Disord. 2005;13:200–12.
Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV Stigma: a review of HIV Stigma mechanism measures. AIDS Behav. 2009;13:1160.
Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24:518–29.
Armoon B, Fleury M-J, Bayat A-H, et al. HIV related stigma associated with social support, alcohol use disorders, depression, anxiety, and suicidal ideation among people living with HIV: a systematic review and meta-analysis. Int J Ment Health Syst. 2022;16:17.
Lifson AR, Demissie W, Tadesse A, et al. Barriers to Retention in Care as Perceived by persons living with HIV in Rural Ethiopia: Focus Group Results and recommended strategies. J Int Assoc Provid AIDS Care JIAPAC. 2013;12:32–8.
Nabunya P, Byansi W, Sensoy Bahar O et al. Factors Associated With HIV Disclosure and HIV-Related Stigma Among Adolescents Living With HIV in Southwestern Uganda. Front Psychiatry [Internet]. 2020 [cited 2023 Oct 18];11. Available from: https://www.frontiersin.org/articles/https://doi.org/10.3389/fpsyt.2020.00772.
Corcoran J, Walsh J. Cognitive-Behavioral Theory and Intervention. In: Corcoran J, editor. Build Strengths Ski [Internet]. 1st ed. Oxford University PressNew York; 2004 [cited 2023 Dec 23]. p. 36–57. Available from: https://academic.oup.com/book/1595/chapter/141094540.
Kabajaasi O, Bernays S, Kawuma R et al. Anita’s Tale [Internet]. 2015. Available from: https://www.mrcctu.ucl.ac.uk/studies/all-studies/a/arrow/.
Fordham B, Sugavanam T, Edwards K, et al. Cognitive–behavioural therapy for a variety of conditions: an overview of systematic reviews and panoramic meta-analysis. Health Technol Assess. 2021;25:1–378.
McKay MM, Gonzales J, Quintana E, et al. Multiple family groups: an alternative for reducing disruptive behavioral difficulties of Urban Children. Res Soc Work Pract. 1999;9:593–607.
Sensoy Bahar O, Byansi W, Kivumbi A, et al. From 4Rs and 2Ss to Amaka Amasanyufu (happy families): adapting a U.S.-based evidence‐based intervention to the Uganda Context. Fam Process. 2020;59:1928–45.
Karimli L, Nabunya P, Ssewamala FM, et al. Combining Asset Accumulation and Multifamily Group Intervention to Improve Mental Health for adolescent girls: a cluster-randomized trial in Uganda. J Adolesc Health. 2023;S1054139:X23004226.
Filiatreau LM, Tutlam N, Brathwaite R, et al. Effects of a combination economic empowerment and family strengthening intervention on Psychosocial Well-being among Ugandan Adolescent girls and Young women: analysis of a Cluster Randomized Controlled Trial (Suubi4Her). J Adolesc Health. 2023;72:33–S40.
Ssewamala FM, Brathwaite R, Sensoy Bahar O, et al. The post-intervention impact of Amaka Amasanyufu on behavioral and Mental Health Functioning of children and adolescents in Low-Resource Communities in Uganda: analysis of a cluster-randomized Trial from the SMART Africa-Uganda Study (2016–2022). J Adolesc Health. 2023;72:3–S10.
Ssewamala FM, Byansi W, Bahar OS, et al. Suubi + adherence study protocol: a family economic empowerment intervention addressing HIV treatment adherence for perinatally infected adolescents. Contemp Clin Trials Commun. 2019;16:100463.
Frey M, Pietsch K, Weninger L, et al. The adaptation and evaluation of a CBT-based manual for the inpatient treatment of youth depression: a pilot study. Pilot Feasibility Stud. 2020;6:30.
Muñoz RF, Miranda J. Group therapy manual for cognitive-behavioral treatment of depression. Santa Monica, CA: Rand; 2000.
Rohde P, Feeny NC, Robins M. Characteristics and components of the TADS CBT Approach. Cogn Behav Pract. 2005;12:186–97.
Nsereko ND. The Evolution of Mental Health Understanding and Practice in Uganda. Int J Emerg Ment Health Hum Resil [Internet]. 2017 [cited 2023 Oct 29];19. Available from: https://www.omicsonline.com/open-access/the-evolution-of-mental-health-understanding-and-practice-inuganda-1522-4821-1000354.php?aid=86120.
Ssewamala FM, Shu-Huah Wang J, Brathwaite R, et al. Impact of a family economic intervention (Bridges) on Health Functioning of adolescents orphaned by HIV/AIDS: a 5-Year (2012–2017) Cluster Randomized Controlled Trial in Uganda. Am J Public Health. 2021;111:504–13.
Larsen DL, Attkisson CC, Hargreaves WA, et al. Assessment of client/patient satisfaction: development of a general scale. Eval Program Plann. 1979;2:197–207.
Bhana A, Mellins CA, Petersen I, et al. The VUKA family program: piloting a family-based psychosocial intervention to promote health and mental health among HIV infected early adolescents in South Africa. AIDS Care. 2014;26:1–11.
Denison JA, Packer C, Nyambe N, et al. Family connections randomized controlled trial: assessing the feasibility and acceptability of an intervention with adolescents living with HIV and their caregivers in Ndola, Zambia. AIDS Care. 2022;34:459–68.
Kizito S, Nabunya P, Ssewamala FM. Enhancing adherence to antiretroviral therapy among adolescents living with HIV through Group-based therapeutic approaches in Uganda: findings from a pilot cluster-randomized controlled trial. J Pediatr Psychol. 2023;jsad081.
Nabunya P, Ssewamala FM, Ilic V. Family economic strengthening and parenting stress among caregivers of AIDS-orphaned children: results from a cluster randomized clinical trial in Uganda. Child Youth Serv Rev. 2014;44:417–21.
Wang JS-H, Ssewamala FM, Han C-K. Family economic strengthening and mental health functioning of caregivers for AIDS-affected children in rural Uganda. Vulnerable Child Youth Stud. 2014;9:258–69.
Bowen M. Family therapy in clinical practice. Princeton, NJ: Recording for the Blind & Dyslexic; 2007.
Yetti K, Lindayani L, Huang M-C. Children HIV disclosure: should the children know their HIV status prior treatment and what are the information have to be told? Clin Ethics. 2020;15:162–6.
Doat A-R, Negarandeh R, Hasanpour M. Disclosure of HIV Status to Children in Sub-saharan Africa: a systematic review. Med (Mex). 2019;55:433.
Zgambo M, Kalembo FW, Mbakaya BC. Risky behaviours and their correlates among adolescents living with HIV in sub-saharan Africa: a systematic review. Reprod Health. 2018;15:180.
Mengesha MM, Teshome A, Ajema D et al. The association between HIV diagnosis disclosure and adherence to anti-retroviral therapy among adolescents living with HIV in Sub-Saharan Africa: A systematic review and meta-analysis. Wasti SP, editor. PLOS ONE. 2023;18:e0285571.
Biadgilign S, Deribew A, Amberbir A et al. J Ho editor 2011 Factors Associated with HIV/AIDS Diagnostic Disclosure to HIV infected children receiving HAART: a Multi-center Study in Addis Ababa, Ethiopia. PLoS ONE 6 e17572.
Klutsey DA, Amankwah-Poku M, Oppong Asante K. To disclose or not to disclose? Caregivers experiences of disclosure of HIV status of children living with HIV in Accra, Ghana. Lifestyle Med. 2021;2:e40.
Mugo C, Firdawsi O, Wang J, et al. When they are all grown, I will tell them: experience and perceptions of parental self-disclosure of HIV status to children in Nairobi, Kenya. BMC Public Health. 2023;23:519.
Calabrese SK, Martin S, Wolters PL, et al. Diagnosis disclosure, medication hiding, and medical functioning among perinatally infected, HIV-positive children and adolescents. AIDS Care. 2012;24:1092–6.
King R, Katuntu D, Lifshay J, et al. Processes and outcomes of HIV Serostatus Disclosure to sexual partners among people living with HIV in Uganda. AIDS Behav. 2008;12:232–43.
Acknowledgements
We are grateful to the staff and the volunteer team at the International Center for Child Health and Development (ICHAD) in Uganda for monitoring the study implementation process. Our special thanks go to all the children and their caregiving families who agreed to participate in the study.
Funding
This work was supported by the National Institute of Mental Health (NIMH; Grant # R21MH121141, 2020–2022; MPIs: Proscovia Nabunya, PhD and Fred M. Ssewamala, PhD). NIMH had no role in the study design, data collection, analysis, interpretation of findings and preparing this manuscript. The content of this paper is solely the responsibility of the authors and does not necessarily represent the official views of the NIMH.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors have no conflict of interest to disclose.
Clinical Trials Registration
The study is registered in the Clinical trials.gov database (Identifier #: NCT04528732).
Full study protocol
https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-022-01055-7
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Nabunya, P., Migadde, H., Namuwonge, F. et al. Feasibility and Acceptability of Group-Based Stigma Reduction Interventions for Adolescents Living with HIV and Their Caregivers: The Suubi4Stigma Randomized Clinical Trial (2020–2022). AIDS Behav 28, 1630–1641 (2024). https://doi.org/10.1007/s10461-024-04284-4
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10461-024-04284-4