Growing up HIV-positive in Uganda: “psychological immunodeficiency”? A qualitative study

Abstract

Background This study is part of a longitudinal study among children and adolescents with HIV in both urban and rural Uganda: ‘Mental health among HIV infected CHildren and Adolescents in KAmpala and Masaka, Uganda (CHAKA) ’. Method The study is constructed of both quantitative and qualitative components. In this article we report a qualitative study on the experiences of 21 adolescents (twelve to seventeen years) living with HIV in Uganda. The purpose of the study was to investigate both the protective and the risk factors in HIV-infected adolescents’ care environment in order to understand what might contribute to negative outcomes and what might provide a protective buffer against harmful life events. Semi-structured interviews with vignettes about mental disorders were employed and a phenomenological analysis was done. Results The findings uncovered that the adolescents’ families were mostly characterized by instability and diffuse relationships that provided an insecure basis for secure attachment and emotional support. Even in stable and secure family environments, there was no guarantee for getting sufficient emotional support in order to develop a positive self-concept due to the fate being the only infected child in the family. Both secure attachment and positive self-concept are known psychological protective mechanisms that provide the individual with resilience. The adolescents in this study seemed hampered in the development of protective mechanisms and consequently seemed psychologically vulnerable and badly equipped for coping with challenges, which paves the way for the possible development of mental disorders. Conclusion To change the focus towards strengthening the children and adolescents’ development of psychological protective mechanisms implicates a change in focus from illness to health and has consequences for both treatment and prevention. Psychological health promotion must be systemic and aim at strengthening the family environment, but also to establish peer group support.

Informing the measurement of wellbeing among young people living with HIV in sub-Saharan Africa for policy evaluations: a mixed-methods systematic review

“…Mutumba, Bauermeister [102] describes how pill taking between HIV-positive parents and YPLHIV in Uganda fostered bonding "whenever she took hers, I also took mine". In contrast, in three studies, young women expressed the lack of support from caregivers [101,112,120]. Trusting relationships with family members were frequently described as important [101,102,109,121,122].…”

“…Drawing on our qualitative review findings together with the relational meaning model [60] and Goffman's accounts of stigma [133], internalised stigma may reduce wellbeing by lowering self-worth. In addition, externalised stigma encountered within social networks may reduce connectedness of self with family members and peers [102,112,134]. Together, these processes are likely to challenge self-acceptance.…”

“…I am unable to buy the right food for her because she has a special diet since she is sick" [Caregiver, men living with HIV in Uganda felt unable to uphold masculine socio-cultural identities and thus chose not to disclose their HIV status to their parents in fear of the "loss of rights" to endowments [105,106]. Most studies described the manifestations of HIV-related stigma in terms of experienced stigma, which was encountered in relationships with mothers [112,113], family members [101,114], learners and educators (102Mutumba et al, 2015,107,115), and HCWs [115] [113]. Authors also described how stigma intersected with gendered attitudes towards sexuality and self-acceptance among young women [101,[115][116][117], including cultural norms such as respect for elders [113,118,119].…”

“…A key positive factor that YPLHIV utilised for coping was religion and faith, especially when support was limited. Religion and faith were primarily expressed as "belief in God" [100,109,111,112,116,121,123,125]. Most authors perceived religion as bringing comfort and hope, as well as meaning and purpose in their lives.…”

“…Young men living with HIV often reported difficulty in establishing economic security as the sole reason for delaying sexual debut, marriage and having children [100,103,126]. In Uganda, two studies noted how young men had "shattered dreams" [112] as household poverty traps prevented young men from completing their schooling, achieving their career aspirations and entering into the formal labour market. A young man's inability to contribute to his household made him feel "unwanted" and "hurt" [114].…”