‘You are not alone’ - The Role of Social Relationships in Engagement in Care for Adolescents Living with Perinatally Acquired HIV in Western Kenya Open Access

McGray, Taren (Spring 2022)

Permanent URL: https://etd.library.emory.edu/concern/etds/f7623d88z?locale=en


Introduction. Adolescents with perinatally acquired HIV (APHIV) are a relatively novel and understudied population, despite their high morbidity and mortality compared to other people living with HIV (PLHIV). The distinct psychosocial challenges APHIV face suggest that social relationships may be an important factor in their engagement in or disengagement with care. To better understand the lived experiences of APHIV and inform APHIV care and support, the Kenya Medical Research Institute (KEMRI) conducted a mixed-methods study. The purpose of the present study was to examine the role that social relationships play in how APHIV in Western Kenya engage with and disengage from care, with the aim of informing efforts to improve the support of APHIV in Western Kenya.

Methods. This thesis comprises the secondary analysis of qualitative data collected by KEMRI from July 2019 and August 2021. Transcripts from interviews with APHIV (n=14), their caregivers (n=15), and providers (n=16), 6 focus group discussions (FGDs) with APHIV, and 2 FGDs with caregivers were analyzed thematically using a constant comparative methodology and grounded theory-based approach using an adapted Socio-Ecological Model (SEM) framework.

Results. Supportive, involved, and caring relationships with friends, family, and romantic or sexual partners improved APHIV engagement in care, often through the intermediary of improved mental health. Having these positive relationships encouraged APHIV to desire to live and therefore adhere to ART and attend clinic visits. Microsystem influences, such as taking ART with others, adherence follow-up, and having close relationships, were most influential in helping APHIV feel loved, normal, and less alone. Meso- and exo-system contexts were also important in creating an enabling or prohibitive environment for APHIV engagement in care, including caregivers’ interactions with other people in APHIV’s lives, having to visit relatives over school holidays, and the support group environment. Macrosystem challenges related to stigma were found to pervade each level, particularly the individual-level, where self-stigma influenced many of APHIV’s personal strategies for managing their care.

Conclusions. APHIV engagement in care is largely influenced through direct interactions and the socio-environmental contexts within which these relationship exist. Interventions should focus on developing strategies to strengthen the level of support felt by APHIV through their friends, peers, teachers, caregivers, and family to improve their motivation for engaging in care This may include tools to improve counseling, training, and education of those who interact with APHIV. An important aspect of these interventions involves teaching those who interact with APHIV how to mitigate socioenvironmental barriers to engagement in care, such as peer pressure, stigma, and disclosure-related challenges.

Table of Contents

Table of Contents

List of Abbreviations: 1

Chapter 1: Introduction. 2

1.1 Background. 2

1.2 Social Relationships. 3

1.3 Need for Evaluation. 4

1.4 Kenya Medical Research Institute. 5

1.5 Purpose Statement 5

Chapter 2: Literature Review.. 7

2.1 Background. 7

2.2 Perinatally acquired HIV.. 7

2.3 HIV Care Continuum. 8

2.4 Engagement in care. 12

2.5 Socio-Ecological Model 14

2.6 Social Determinants of APHIV Health. 15

2.7 Need for Evaluation. 18

2.8 Kenya Medical Research Institute. 19

2.9 Purpose Statement 19

Chapter 3: Manuscript 20

3. 1 Abstract. 20

3. 2 Introduction. 22

3.3 Methodology. 28

3. 4 Results. 32

3.5 Discussion. 64

Chapter 4: Conclusion & Recommendations. 71

References. 73

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