**HIV Infection and Schooling Experiences of Adolescents in Uganda**

Harriet Birungi1, Francis Obare1, Anne Katahoire2 and David Kibenge3

<sup>1</sup>*Population Council, Nairobi*  <sup>2</sup>*Makerere University, Kampala 3Ministry of Education and Sports 1Kenya 2,3Uganda*

#### **1. Introduction**

72 Social and Psychological Aspects of HIV/AIDS and Their Ramifications

Wood K, Maforah F, and Jewkes R (1998): "He forced me to love him": putting violence on

The increased availability of anti-retroviral treatment (ART) for HIV in parts of sub-Saharan Africa (SSA) has enabled many children who were perinatally infected to survive to schoolgoing age and even longer. For instance, a study conducted in 2007 in Uganda among adolescents aged 15-19 years who were perinatally infected with HIV found that about 70% of them were attending school at the time of the survey and many desired to be in school to avoid social isolation (Birungi et al., 2008). With an increasing number of HIV-positive young people attending school, most governments in SSA have begun to recognize the challenges this situation presents to the education sector (Kelly, 2003). Many governments have formulated Education Sector Policies on HIV/AIDS that encompass all learners, employees, managers and administrators in all learning institutions at all levels of the education system (for example, Ministry of Education and Sports- Uganda, 2006; Ministry of Education- Kenya, 2004). The policies predominantly revolve around a legal framework that recognizes and upholds the rights of all people with a special focus on marginalized and vulnerable groups and those with special needs. They also recognize the need for universal access to HIV/AIDS information, access to treatment and care, protection from discrimination and stigma, and care for orphans and vulnerable in-school young people.

In spite of the recognition of school-going HIV-positive young people as a vulnerable group, education sector responses to HIV/AIDS in the SSA region are predominantly curriculumbased. The focus is almost entirely on developing the capacity of learners in the areas of better knowledge about the diseases, skills that enhance the ability to protect oneself against infection, and approaches that acknowledge the rights and dignities of those infected and affected (Bennell et al., 2002; Cohen, 2004; Kelly, 2000; Rugalema & Khanye, 2004). Insufficient attention has been paid to ways of supporting in-school HIV-positive young people partly because their needs in school are still largely unknown given that this is an emerging issue in the region. It could also be due to the dilemma of how to tackle the issue of HIV in schools based on fears that having specific programs targeting in-school HIVpositive young people could reinforce stigma and discrimination against them.

Whatever the reason for the lack of appropriate education sector responses in this area, a key issue that emerges is the need for evidence on in-school experiences of HIV-positive young people in the region. This should in turn inform appropriate interventions aimed at

HIV Infection and Schooling Experiences of Adolescents in Uganda 75

(WHO et al., 2009, 2010). However, challenges still remain with respect to reaching all those in need of treatment due to limited human resource capacity to provide the services, and

With respect to education, Uganda implemented the Universal Primary Education (UPE) programme in 1997 which removed fees for enrolment in primary schools and resulted in substantial increases in enrolments (Deininger, 2003; Murphy, 2003; Nishimura et al., 2008; UBOS and Macro International, 2007). This was followed ten years later (in 2007) with the introduction of Universal Secondary Education (USE) whose impact is yet to be systematically evaluated (Chapman et al., 2010). Estimates of HIV prevalence among members of the school community (students and teachers) are unavailable. However, realizing the challenges posed by HIV to the education sector, the Ministry of Education and Sports issued the *Education and Sports Sector National Policy Guidelines on HIV/AIDS* in 2006 to provide a framework for responding to the epidemic within the sector. The objectives of the policy are to: (1) raise knowledge of students, education managers and other sector employees on HIV/AIDS; (2) ensure that students, education managers, and educators access prevention, treatment, care and support services; (3) eliminate all forms of stigma and discrimination; (4) mitigate the impact of HIV/AIDS that impede access to and provision of quality education; (5) strengthen the education sector's capacity to effectively respond to HIV/AIDS; and (6) contribute to the knowledge base on HIV/AIDS through research

The data are from a study conducted in Uganda in 2009 whose objective was to understand the needs of in-school HIV-positive young people. The study involved two major components. The first component was a survey among 718 young people aged 12-19 years (of school-going age) who were perinatally infected with HIV (had been living with the virus since infancy) and who knew their sero-status. The sample members were identified and recruited through existing HIV/AIDS treatment, care and support programs/centres selected by The AIDS Support Organization (TASO)-Uganda in four districts (Kampala, Wakiso, Masaka and Jinja). Thirteen such centres participated in the study. All adolescents who received services from the centres and satisfied the eligibility criteria in terms age, perinatal infection, and awareness of sero-status were targeted for inclusion in the study. TASO counsellors assisted with the identification and mobilization of the eligible respondents. The process involved obtaining clearance from the management of the centres, identifying the target sample from the existing records, and making calls to their parents to request them to come to the centres or targeting days when they visit the centres for routine

Information was collected using a structured questionnaire which was translated into *Luganda* and *Lusoga*, the two dominant local languages. Interviews were partially completed with 6 of the participants. Information was gathered on the respondents' background characteristics, educational attainment, school attendance (absenteeism, repetition, changing of schools, and drop-out), motivations for being in school or dropping out, disclosure of HIV status within the school environment and the reactions of others to the disclosure, availability of support programs for HIV-positive young people within schools, psychosocial feelings in school and whether these affected school attendance, and experiences of physical or verbal abuse, discrimination and stigma in school. For adolescents aged 12-17 years, written consent to

lack of efficient management of funds and supplies (Onyango and Magoni, 2002).

(Ministry of Education and Sports- Uganda, 2006).

**3. Data** 

reviews or drug re-fills.

ensuring an inclusive education system that adequately responds to the challenges in-school HIV-positive young people may face. This chapter therefore responds to the need for relevant evidence by exploring the experiences of HIV-positive adolescent boys and girls in primary and secondary schools in Uganda from the perspectives of school officials and teachers, the general student body, as well as adolescents perinatally infected with HIV. It specifically focuses on: (1) school attendance and experiences with class repetition; (2) experiences of stigma and discrimination within the school environment; and (3) availability of school-based health and psychosocial support programs and services for HIV-positive students. It ends with a discussion of the implications of these experiences for addressing the needs of in-school HIV-positive young people by the education sector not only in Uganda but in SSA countries affected by the pandemic.
