Beyond the diagnosis: exploring illness identity in HIV and its impact on health outcomes

Abstract

This study utilizes the illness identity framework to investigate the incorporation of HIV into a sense of self and how varying degrees of integration influence key patient-reported outcomes. Using baseline data from the SINAKO Cluster Randomised Controlled Trial, we analysed responses from 316 adults living with HIV (PLHIV) attending 12 healthcare facilities in the Cape metropole, South Africa. Respondents completed assessments on four illness identity dimensions (rejection, acceptance, engulfment, and enrichment) alongside measures for depression and anxiety symptoms, stigma, medication adherence, and self-management. Regression analyses with robust standard errors assessed associations between illness identity and patient-reported outcomes, controlling for gender, age, and illness duration. Longer illness duration was associated with acceptance and enrichment. There was no evidence of an association between gender or education level and illness identity, while age showed a weak positive association with acceptance. Higher engulfment scores correlated with greater depression and anxiety symptoms, increased stigma, and poorer treatment adherence and self-management. Higher enrichment scores were associated with better self-management and lower stigma. Higher rejection scores were associated with heightened negative self-image. Acceptance did not show unique associations with any outcome. This study highlights the vital role of illness integration in shaping health outcomes among PLHIV in resource-limited, high-prevalence settings. Strategies that rapidly identify those in an engulfment state early in the illness trajectory and foster adaptive illness integration, specifically enrichment, could improve outcomes for PLHIV.