Managing uncertainty: A grounded theory study of restoring normality in young and middle-aged patients with lymphoma

Objectives

This study aimed to generate a theoretical framework based on empirical data to explain the behavioral patterns closely related to young and middle-aged patients with lymphoma throughout the disease.

Methods

This study followed the classic grounded theory methodology, involving procedures such as theoretical sampling, substantive coding, theoretical coding, constant comparison, and memo writing and sorting. Multiple data types were used based on the principle of “all is data,” including 34 participants providing interview data along with observation notes and 40 relevant secondary texts from the “Lymphoma House” network platform and the “Lymphoma House 086” public account. Two autobiographical books written by lymphoma patients were also selected as data resources. Data collection and analysis were conducted in an iterative process until theoretical saturation was reached. The COREQ checklist was followed to report this study.

Results

The main concern of middle-aged and young patients with lymphoma was identified as restoring normality, while managing uncertainty was the main behavioral pattern for restoring normality. Uncertainty consists of two interrelated types: inherent uncertainty of illness and perceived uncertainty of patients. Four strategies are used to manage uncertainty: reconstructing certainty, adaptive coping, defensive buffering, and compensatory changing. Managing uncertainty is influenced by disease characteristics and perceptions, social resources, and cultural concepts. The consequence of managing uncertainty is reaching a new normality.

Conclusions

Pervasive uncertainty significantly affects the daily lives of young and middle-aged patients with lymphoma. Consequently, strategies for managing disease-related uncertainty to sustain normality are commonly observed in this population. This theoretical framework for addressing uncertainty can serve as a foundation for understanding and developing tailored interventions to manage uncertainty. Future research should focus on managing uncertainty to help patients restore normality.