Digital echoes of death and dying distress among family members of intensive care unit patients: A qualitative study

Abstract

Objectives To explore how ICU family members experience and articulate death and dying distress through social media narratives. Methods This study employed a qualitative design informed by the socioecological model and a constructivist epistemological perspective. Data were drawn from publicly available posts on REDnote (also known as Xiaohongshu), a popular Chinese social media platform, using a keyword-based search targeting ICU-related experiences. After screening for relevance, 317 posts comprising 124,906 Chinese characters were retained for analysis. Reflexive thematic analysis was conducted following Braun and Clarke's six-phase approach, emphasizing researchers' active role in co-constructing themes through iterative engagement with the data. Results Eight themes were identified across three socioecological levels: at the microsystem, emotional volatility and multi-dimensional distress reflected intense emotional experiences and endurance; at the mesosystem, shared burdens, concentrated family responsibilities, and support beyond blood ties captured family dynamics under strain; at the macrosystem, digital spaces, institutional barriers, and financial pressures shaped broader sociocultural experiences of death and dying distress. Conclusion This study provides new insights into the distress of ICU family members facing death and dying. It highlights that such distress is not solely an individual psychological reaction, but an experience of endurance shaped by family relationships and broader social and institutional contexts. Implications for clinical practice These findings suggest that nursing interventions could adopt a systems-oriented approach to support family functioning, address relational and institutional challenges, and extend support beyond the bedside to include digital spaces.

The authors' abstract, as published at the source. Intensive and Critical Care Nursing, 2026 · DOI ↗