Beyond statistics: the cumulative effect of vulnerability in management of HIV

Gugsa, Salem. Beyond statistics: the cumulative effect of vulnerability in management of HIV. Diss. U of Washington. 2019.

Background: Health outcomes of antiretroviral therapy (ART) are well studied, while the psychosocial processes of seeking clinical care and adhering to lifelong medications to achieve viral suppression are understudied. This study explores how vulnerability to HIV and in the context of HIV affect individuals’ decisions as they start self-management of HIV. Methods: This study utilized mixed methods to obtain information from persons newly diagnosed with HIV at an urban high-patient load facility in Lilongwe, Malawi. First, a one-time survey of 151 persons newly diagnosed with HIV was used to generate information on individual- and social-level factors of intent to start and follow antiretroviral treatment. As a follow-up, in-depth interviews were conducted with 26 of the survey participants to explore how cumulative vulnerability affected their intent and actual follow-up of clinical care during the initial 6-month period. Linear regression analysis was used to assess the effect of vulnerability on intent to follow clinical care, while multinomial regression analysis was used to assess effect of vulnerability on actual 6-month follow-up status. A grounded theory approach was used to organize and analyze qualitative data and prepare them to a synthesized narrative. Results: By the time HIV-related services were sought, newly diagnosed persons reported experiencing persistent sickness, disrupted relationships and behavior guided by societal gender norms. Given the demonstrated outcomes of initiating ART early, participants welcomed initiation of ART but were unsure how they could manage stigma. They feared experiencing changes in appearance, being labelled as someone who has had reckless sexual experience, having limited fertility options, including partner choices, and needing more than usual resources to care for their compromised health. Intent to follow clinical care was not associated with age and gender. It was, however, independently associated with education level, recent physical health conditions, reason for current HIV testing and anticipation of sustained support from core social network after disclosure. Whether individuals reported having current social support did not affect their intent to follow care. However, those who anticipated sustained social support were highly likely to intend to follow care. In the initial months of self-management of HIV, the need to attend to additional health conditions resulted in added pill burden and clinic visits. Once good health was regained, it enabled dignity and resumed social activities. Emotional, physical and financial support were sought and obtained from current marital and non-marital partners, kin (siblings, parents and children), and close friends. Facility- and community-based social groups provided financial and emotional support, while religious framework provided emotional support. Conclusions: Newly diagnosed individuals had existing vulnerabilities that led to their HIV infection and acquired new vulnerabilities once diagnosed with HIV. Consideration of continuing to take ART needed constant weighing of stigma. Anticipation of sustained social support facilitated clinical care follow-up. Those who have sustained social support demonstrated resilience, despite being vulnerable. Public health approaches should consider complementing clinical services with facilitation of social support for newly diagnosed individuals, in order to achieve positive health outcomes.

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