Illness Uncertainty and Coping Strategies Among Families of Children with Cancer in China: A Family-Centered Qualitative Study.
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Background/Objectives: Illness uncertainty is a pervasive psychosocial experience in chronic conditions that is particularly prominent in pediatric oncology. While existing research has explored its psychological impact, a gap remains in understanding how this uncertainty evolves throughout the disease trajectory and how families collectively negotiate and manage this experience over the long term. Methods: This qualitative study was conducted in the hematology ward at a pediatric hospital in Shanghai, China. Using purposive sampling, semi-structured interviews were performed with 32 participants from 12 families of children currently undergoing cancer treatment. Data were collected through in-depth interviews and analyzed using reflexive thematic analysis. The sample was dominated by leukemia cases, with a small number of lymphoma cases; therefore, the findings are most directly transferable to families of children with hematological malignancies. Results: Illness uncertainty is a dynamic and persistent experience permeating the entire pediatric cancer trajectory. Key sources of uncertainty include diagnostic ambiguity and delays, barriers in physician-patient communication, and profound disruptions to family daily life. In response, families proactively develop multidimensional coping strategies: reframing meaning to accept uncertainty, reorganizing family roles and responsibilities, strengthening internal communication, and mobilizing external support networks. These strategies demonstrate both family resilience and inherent vulnerability under sustained pressure. Conclusions: Illness uncertainty in pediatric cancer transcends medical boundaries and is deeply embedded in family life. Healthcare systems should recognize uncertainty as a core experience throughout the disease process and provide family-centered psychosocial and structural support. Strengthening hospital social work services and fostering synergy between peer networks and community resources are essential to enhancing families' capacity to manage uncertainty and alleviating their long-term psychosocial burden.