The temporal nature of social context: Insights from the daily lives of patients with HIV

Abstract

Background Patients’ life contexts are increasingly recognized as important, as evidenced by growing attention to the Social Determinants of Health (SDoH). This attention may be particularly valuable for patients with complex needs, like those with HIV, who are more likely to experience age-related comorbidities, mental health or substance use issues. Understanding patient perceptions of their life context can advance SDoH approaches. Objectives We sought to understand how aging patients with HIV think about their life context and explored if and how their reported context was documented in their electronic medical records (EMRs). Design We combined life story interviews and EMR data to understand the health-related daily life experiences of patients with HIV. Patients over 50 were recruited from two US Department of Veterans Affairs HIV clinics. Narrative analysis was used to organize data by life events and health-related metrics. Key results EMRs of 15 participants documented an average of 19 diagnoses and 10 medications but generally failed to include social contexts salient to patients. In interviews, HIV was discussed primarily in response to direct interviewer questions. Instead, participants raised past trauma, current social engagement, and concern about future health with varying salience. This led us to organize the narratives temporally according to past-, present-, or future-orientation. “Past-focused” narratives dwelled on unresolved experiences with social institutions like the school system, military or marriage. “Present-focused” narratives emphasized daily life challenges, like social isolation. “Future-focused” narratives were dominated by concerns that aging would limit activities. Conclusions A temporally informed understanding of patients’ life circumstances that are the foundation of their individualized SDoH could better focus care plans by addressing contextual concerns salient to patients. Trust-building may be a critical first step in caring for past-focused patients. Present-focused patients may benefit from support groups. Future-focused patients may desire discussing long term care options.