Youth living with HIV/AIDS in secondary schools: perspectives of peer educators and patron teachers in Western Uganda on stressors and supports

Abstract

As Youth Living With HIV/AIDS (YLWHA) continue to survive and live with HIV chronically due to effective Antiretroviral Therapy (ART), it is paramount to work toward maximising their psychosocial wellbeing. The school where these YLWHA are expected to spend most of their time is an excellent environment to investigate this. In this study, we explore perspectives of Peer Educators (PEs) in secondary schools of one district in Western Uganda on how YLWHA are perceived in school, on their daily stressors and their way of coping with their HIV-positive serostatus given the support of the schools. We conducted eight focus groups with a total of 59 students who were members of Peer Educators Clubs (PECs) as well as 8 in-depth interviews with patron teachers of PECs in eight secondary schools of Kabarole district, selected through a stratified random sampling method. Focus groups and interviews were tape-recorded, transcribed and analysed thematically both inductively and deductively. Stressors and support in schools, as identified by the PEs were categorised into three interrelated thematic domains; psychological wellbeing of YLWHA, disclosure of HIV status by YLWHA, and health and treatment adherence. Stigma was found to be a key stressor and an intermediary in all the three thematic domains Stressors affecting psychological wellbeing were fear of death and uncertainty of the future compounded by financial and academic challenges. Stressors affecting disclosure centred around lack of privacy, confidentiality and fear of loss of friends. Stressors affecting treatment adherence included lack of privacy while taking drugs, unintended disclosure while obtaining drugs or seeking permission to attend clinic appointments and fear of drug adverse effects due to poor nutrition. A supportive school environment involved the availability of a school nurse, counselling services and PECs. We conclude that the school environment brings more stressors than supports for YLWHA. The daily stressors related to HIV stigma, uncertainty, disclosure, privacy and confidentiality render schooling a hassle for YLWHA. Interventions that promote resilient school communities are necessary to foster disclosure in a non-discriminatory and stigma-free environment. This calls for concerted efforts from all school stakeholders.

HIV/AIDS-care and Support Competence of Secondary Schools in Western Uganda: A Qualitative Inquiry With School Stakeholders

“…Considering the community readiness model [34], we hold that school communities by default need to be ready to receive and support YLWHA rather than instituting supportive measures following in-school disclosures. Since HIV is prevalent in this locality [14] and it is a highly stigmatized condition [16], schools should be at a high level of readiness regardless of any disclosures. Regrettably, our ndings seem to place these schools at the level of vague awareness [35] in which the community is concerned about the health issue -in this case inclusion and support for YLWHA -but the motivation to address it is low.…”

“…Previous research in Ugandan secondary schools has shown that YLWHA are particularly vulnerable to HIVrelated stigma, abuse, poor nutrition, mental and physical health di culties, and poverty [12,[14][15][16][17]. In addition, they often come from households that are economically challenged due to a high burden of healthcare-related costs and loss of income due to ill or deceased adult members [15].…”

“…This has led to a disconnect in concerns between the care providers and the "cared for" and alienation of the immediate social structures from the care podium. The role of the school communities in providing care and support to YLWHA as well as supporting externally driven interventions and policies has received little attention despite its potential for good outcomes [14].…”

Experiences and effects of HIV-related stigma among youth living with HIV/AIDS in Western Uganda: A photovoice study

“…Furthermore, these youth have been facilitated to live longer with HIV as a chronic infection due to Antiretroviral Therapy (ART) [4], yet concerns about their Quality of Life (QoL) have risen. HIV-related stigma has been found to be a key stressor affecting QoL of these youth [1,5]. Although several studies have elaborated how HIV-related stigma undermines the HIV management cascade for youth [6][7][8][9][10], little attention has been devoted to the lived experiences of YLWHA with HIV-related stigma and its effects on their daily life especially in the Ugandan context.…”

Psychosocial Adjustment in Ugandan Children: Coping With Human Immunodeficiency Virus Exposure, Lifetime Adversity, and Importance of Social Support

“…The possible systematic variation across HIV groups in the relationship of adversity and social support to psychosocial adjustment has not been specifically investigated. This understanding is important for targeting the most vulnerable children for interventions to improve psychosocial adjustment in sub‐Saharan Africa countries where HIV prevalence is high but resources are limited, and cumulative lifetime adversity may vary according to perinatal HIV status (Kimera et al., 2019; Menon, Glazebrook, Campain, & Ngoma, 2007; Sanjeeva, Pavithra, Chaitanya, Sunil Kumar, & Rewari, 2016). In order to address this gap, we present longitudinal data on cumulative lifetime adversity, social support, and psychosocial adjustment from a large cohort that includes perinatally HIV infected (PHIV), HIV exposed uninfected (HUU) and HIV unexposed uninfected children.…”