Mwaba, Kasonde Marie Madeleine; (2022) "Wherever I go I'll always have it": Experiences of adolescents with HIV treatment and care in Zambia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Adolescents living with HIV (ALHIV) are making up an increasing number of new infections globally, however HIV treatment outcomes among this population remain poor, especially in resource limited settings. Sub-Saharan Africa (SSA) has the largest number of ALHIV where AIDS is a leading cause of adolescent death. Despite the poor health outcomes among ALHIV in resource-limited settings in SSA not much is known about the psychosocial factors affecting the experiences of ALHIV in Zambia, including with engagement with the HIV care continuum. There are also limited studies examining the perceptions and experiences of ALHIV across the life course, including with self-disclosure, advanced treatment regimens and transitioning from pediatric to adult HIV care. There are also limited qualitative studies exploring these experiences from the perspective of health service providers, who play a key role in care provision and support. Despite increased access to antiretroviral therapy (ART) in low resource settings, ALHIV continue to struggle, indicating the need to examine factors within the social environment that impede engagement with the HIV care continuum and improved treatment outcomes in this population. To gain an understanding of these challenges the primary objective of this thesis is to identify psychosocial factors affecting the lived experiences of ALHIV and their engagement with the HIV care continuum in Lusaka, Zambia using the HIV care continuum as an organizing framework. This thesis includes a systematic review exploring the self-disclosure experiences of ALHIV in SSA and a depth analysis of the lived experiences of ALHIV from the perspectives of adolescents and health service providers in Zambia. Participants were recruited from clinics and NGOs in Lusaka between December 2018 and April 2019. The semi-structured interviews were analyzed using thematic network analysis. Findings from the systematic review identified 4372 articles from the search, with 14 articles eligible for inclusion. Data extraction and analysis found low rates of self-disclosure among ALHIV, and identified motivations, facilitators and barriers to disclosure. Barriers to disclosure included fears of rejection, abandonment and onward disclosure of HIV status. Findings from the adolescent in-depth analyses identified various factors shaping the lived experiences of ALHIV including individual, relational and health system related factors. It also identified important challenges to treatment engagement and changing experiences across the life course, including learning of HIV status, coping, managing adherence in the context of everyday life, managing anticipated stigma, disclosure of HIV status. These findings illustrate how psychosocial factors within the environment shape adolescent experiences navigating living with HIV across the life course, which are further compounded by the stressors related to adolescence. The health service provider findings identified perceptions of health service providers on the challenges faced by ALHIV and underlined unique challenges encountered by this group working with adolescent populations. The findings showed that health service providers are knowledgeable of the challenges faced by ALHIV, especially regarding engagement with treatment services however, they are limited in their ability to respond to the needs of adolescents due to the restrictive social contexts in which they work. These findings highlight the need for interventions targeting the social environment, especially socioeconomic and public policy aspects that significantly affect adolescent treatment experiences and access to health services. In sum, this body of work showed that diverse factors affect the experiences of adolescents across the HIV care continuum and that the experiences and needs of ALHIV change across the life course. These accounts highlight the need for the creation of enabling social environments that enhance adolescent engagement in treatment and care and improve their quality of life. My data suggests that such interventions must be multi-faceted and address factors at multiple levels of the social environment with consideration of key stages of development. The root causes producing and maintaining risks in the social environment must be addressed for any gains in the control of the adolescent HIV epidemic to be sustained, as unmediated social contexts undermine improvements in treatment outcomes and the goal to end the HIV epidemic by 2030. It is hoped that the findings from this thesis will enable stakeholders to better understand and address the needs of ALHIV, especially across adolescence and into adulthood and inform future research into the experiences of adolescents.

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