Choice, struggle, and resilience: the experience of pre-loss grief among Chinese family caregivers of cancer patients.

BACKGROUND

Pre-loss grief (PLG) is a critical challenge for cancer caregivers. In China, where family-centered care is profoundly shaped by cultural scripts like filial piety, understanding the digital expression of this experience is crucial for developing effective support. This study aimed to investigate the digitally expressed experience of PLG among Chinese caregivers.

METHODS

A computationally assisted qualitative analysis was performed on 63,775 user-generated texts from the social media platform Xiaohongshu. We used topic modeling and keyword co-occurrence network analysis to identify initial semantic patterns, which were then developed into final themes through a reflexive thematic analysis guided by a constructivist epistemology.

RESULTS

Four core themes were identified: (1) Deep Involvement in Medical Decision-Making; (2) Caregiving Burden and Psycho-Physical Suffering; (3) Adaptive Shift in Family Communication Strategies; and (4) Narratives of Resilience and Meaning-Making. These themes reveal that the PLG experience is a dynamic process of navigating multiple tensions, including cultural responsibilities, personal suffering, relational adjustments, and seeking meaning.

CONCLUSIONS

The PLG experience of Chinese caregivers is a dynamic process defined by profound tensions. These findings underscore grief's culturally constructed nature, highlighting the need for proactive and culturally sensitive support systems that acknowledge both the inherent burdens and the potential for growth during caregiving.