Aligning definitions with realities: a qualitative study on the complexities of measuring retention in HIV care in...

Retention in HIV care is associated with higher rates of antiretroviral treatment adherence and viral suppression, as well as lower risk of AIDS-related morbidity and mortality. However, the multidimensional nature of retention complicates measurement standardisation, limiting comparability and global evaluation.

This study explored how HIV stakeholders define and assess retention, aiming to develop a patient-centred and conceptually robust understanding to inform research and practice.

We conducted a qualitative study using interpretive description methodology, an applied qualitative approach designed to generate practice-relevant knowledge in health research. We purposively sampled 20 stakeholders representing diverse areas of expertise and geographic regions across World Bank country income classifications. We conducted and video-recorded in-depth semistructured interviews and subsequently transcribed them. Using constant comparative analysis, we identified recurring, convergent and contradictory patterns.

The analysis identified five overarching themes. The first two, exploratory themes, included Patient-Centred Understanding of Retention in HIV Care, which captured how stakeholders conceptualised retention in their respective contexts and Operationalisation of Retention Measures, which explored the key components used to measure retention. The next two explanatory themes, included Purpose-Driven Definitions of Retention, which described how retention measures were selected based on their intended use, and Building Capacity through Shared Understanding and Integrated Action, which emphasised retention as a cyclical, interconnected process dependent on collaboration between patients and health systems. The final, prescriptive theme, Advancements Shaping Retention, reflected stakeholders' shared vision of improving retention through innovations in HIV treatment and technology.

The findings suggest that stakeholders operationalise retention measures in line with specific objectives and individual health goals, while remaining attentive to contextual realities. Retention measures should remain flexible and patient-centred, rather than relying on a single rigid standard.