HIV-Related Stigma, Maternal Caregiving, and Adjustment of Chinese Adolescents with Perinatally Acquired HIV

Abstract

Adolescents with perinatally acquired HIV (PHIV), who acquired HIV through vertical transmission during pregnancy, delivery, or breastfeeding, face a wide range of adversities. They manage the medical burden of lifelong antiretroviral therapy as well as psychological challenges, including HIV-related stigma, family conflicts, and mental health risks stemming from this complex and heavily stigmatized chronic condition. Furthermore, mothers of adolescents with PHIV also live with HIV. Therefore, maternal caregiving within adolescent–mother dyads living with HIV represents a unique familial context in which the shared serostatus may influence adolescent–mother interactions and HIV adjustment outcomes of adolescents with PHIV.

Previous studies have primarily focused on adolescents with PHIV individually, documenting their challenges in treatment adherence, psychological adjustment, social relationships, and overall quality of life. However, systematic investigations incorporating adolescents with PHIV and their mothers living with HIV as a dyadic unit remain remarkably underrepresented in existing literature. Moreover, additional knowledge gaps persist: (a) The mediating mechanism that HIV-related stigma—an inevitable challenge perceived by both adolescents with PHIV and their mothers living with HIV—impacts adolescents’ adjustment outcomes have yet to be systematically investigated and (b) existing studies lack comprehensive investigations into the specific processes through which mothers living with HIV assist their children with PHIV in adjusting to HIV and have overlooked the influence patterns and caregiving practices given the inherent biological and dependency ties in the adolescent–mother dyads living with HIV.

Guided by the HIV stigma framework, systemic models of family functioning (e.g., the family systems theory, the resiliency model of family stress, adjustment, and adaptation, and the family stress model), and the framework of common dyadic coping, this thesis employed a mixed-method approach, incorporating both qualitative and quantitative data, to examine (a) the impact of HIV-related stigma encountered by adolescents with PHIV and their mothers living with HIV on adolescent adjustment outcomes and the mediation effect of family-level factors (i.e., adolescent–mother relationship satisfaction and family harmony) in the association between stigma and adolescent outcomes; and (b) the maternal caregiving patterns within the adolescent–mother dyads and their effect on adolescent HIV adjustment.

Study 1, based on the HIV stigma framework and systemic models of family functioning, investigated the effects of HIV-related stigma perceived by adolescents with PHIV and their mothers living with HIV on adolescents’ quality of life. Additionally, it examined the potential mediation role of adolescent–mother relationship satisfaction and family harmony in the association between stigma and quality of life. A total of 123 Chinese adolescent–mother dyads living with HIV completed a cross-sectional survey. The adolescents self-reported HIV-related stigma, adolescent–mother relationship satisfaction, family harmony, and quality of life, while the mothers self-reported HIV-related stigma. The results showed the indirect effects of stigma on quality of life among the adolescents, whereby higher adolescents’ and their mothers’ HIV-related stigma predicted adolescents’ poorer adolescent–mother relationship satisfaction, and then predicted lower family harmony, and, in turn predicted lower adolescents’ quality of life. These findings indicate that compromised family-level factors account for the effect of HIV-related stigma perceived by adolescents and their mothers on the poor quality of life of adolescents, highlighting the importance of stigma reduction interventions in maintaining adolescent–mother relationships and family harmony to enhance adjustment outcomes of adolescents with PHIV.

Study 1 identified the mediating mechanisms through which HIV-related stigma affects adolescents’ quality of life via family-level factors; however, it remained unclear how mothers living with HIV get engaged in the HIV management process of their children with PHIV and how different patterns of maternal caregiving influence adolescents’ adjustment outcomes. Therefore, based on the family systems theory and the framework of common dyadic coping, Study 2 used a person-centered approach to explore adolescent–mother interaction patterns during HIV coping and management of adolescents. I used a two-phase, sequential exploratory mixed-methods design, combining qualitative interviews to identify dyadic profiles of maternal caregiving in adolescent HIV management, followed by a survey to validate the profiles and examine variations in adolescent adjustment outcomes across these identified profiles. In Study 2a, I interviewed 20 adolescent–mother dyads living with HIV regarding the perspectives of both adolescents and mothers on maternal caregiving in adolescent HIV management and adjustment outcomes. Based on a dual-dimension model of the degree of maternal involvement in adolescent HIV management and the intimacy of the adolescent–mother relationship, four categories of maternal caring were identified from the interviews: Supportiveness (n = 4, 20.00%), Independence (n = 9, 45.00%), Contradiction (n = 4, 20.00%), and Alienation (n = 3, 15.00%). These four categories showed certain variations in adolescents’ HIV adjustment indicators, including disclosure of HIV status, HIV-related communication, antiretroviral therapy adherence, emotion management, and stigma coping. In Study 2b, I conducted a cross-sectional survey among 123 adolescents with PHIV and their mothers living with HIV. The adolescents completed measures on common dyadic coping, adolescent–mother closeness, and adjustment indicators (i.e., HIV-related stigma, depressive symptoms, well-being, and quality of life), and mothers completed measures on HIV-related stigma. I used a two-phased cluster analysis (i.e., hierarchical and nonhierarchical k-means) to derive four clusters of maternal caregiving profiles, which were consistent with the qualitative findings: Supportiveness (n = 32, 26.02%), Independence (n = 48, 40.02%), Contradiction (n = 21, 17.07%), and Alienation (n = 22, 17.89%). These four clusters showed significant differences in adolescents’ HIV-related stigma, depressive symptoms, well-being, and quality of life, and marginally significant differences in mothers’ HIV-related stigma. Compared with those in the Supportiveness and Independence clusters, adolescents in the Contradiction and Alienation clusters reported higher levels of HIV-related stigma and depression symptoms, and poorer well-being and quality of life perceived by adolescents, as well as a higher level of HIV-related stigma perceived by mothers.

These studies provided a comprehensive analysis of both quantitative and qualitative evidence regarding the generalized and specific processes of Chinese adolescents with PHIV in managing and adjusting to HIV from the dyadic perspective of adolescent–mother collaboration. Theoretically, the findings enhanced the HIV stigma framework by identifying distinct pathways through which adolescents’ and mothers’ HIV-related stigma affects adolescents’ quality of life via family-level factors. The studies further advanced the application of systemic models of family functioning, such as family systems theory, within the HIV context, emphasizing the role of adolescent–mother interactions in health outcomes among adolescents with PHIV. Moreover, this research work extended existing research evidence on maternal caregiving in child chronic illness management by developing an integrated dual-dimension model of maternal caregiving in the HIV context, capturing the unique dynamics between adolescents with PHIV and their mothers living with HIV. Practically, the findings herein inform the development of interventions for adolescents with PHIV and their caregivers living with HIV—particularly mothers—by adopting a dyad-oriented approach. Future intervention programs should be structured according to the four maternal caregiving patterns identified in the integrated model, allowing for more targeted interventions that address the specific challenges faced by adolescents and their mothers in the HIV adjustment process.

Date of Award	13 Aug 2025
Original language	English
Awarding Institution	City University of Hong Kong
Supervisor	Xiaonan Nancy YU (Supervisor)