Qualitative study on the life dilemmas faced by long-term survivors of primary central nervous system germ cell tumors from a social ecological perspective

Purpose: This study aimed to examine the life dilemmas of long-term survivors of central nervous system germ cell tumors based on the Social Ecological Model and provide a reference for targeted interventions. Methods A semi-structured interview was conducted on 14 survivors of central nervous system germ cell tumors. The questions were based on the Social Ecological Model. Data were transcribed and analyzed using Colaizzi’s method. Results Three themes were identified in this study. In the macro system, the physical and mental state of long-term survivors is affected by the disease and treatment, and the quality of life was poor. In the mezzo system, friendly work and community environments were included, but resources were scarce. Moreover, the support system in macro system was weak. Conclusion The social ecological system for long-term survivors of central nervous system germ cell tumors was poor. The society should pay attention to the survivors’ physical and mental health to promote better integration into society.