住院期白血病患儿的疾痛经验与应对策略

Illness Experience and Coping Strategies of Hospitalized Children with Leukemia

通过对武汉市Z医院12名住院期白血病患儿疾痛叙事的记录与分析,发现疾痛造成了他们日常生活中身体、时间、关系三个维度的破坏。然而,疾痛并非一成不变,其对日常生活造成的破坏可以通过个人的主体行动得以修补。住院期白血病患儿为重新达至自我的平衡与对生命的掌控,能动地采取了承认自身脆弱性、时间的意义重构、情感的内外支持等疾痛应对策略。上述疾痛应对策略不仅是住院期白血病患儿在特定医疗情境下进行的主体行动,也受到社会结构和文化环境的型塑作用。研究最后探讨了以意义为中心的医学解释模式在我国的必要性与可能性,提出了相应的思考与建议。

Through the recording and analysis of the pain and illness narratives of 12 hospitalized children with leukemia at Z hospital in Wuhan,it was found that pain and illness caused damage to their physical,temporal,and relational dimensions in daily life.However,illness and pain are not static,and the damage they cause to daily life can be repaired through individual actions.Hospitalized leukemia patients actively adopt pain coping strategies such as acknowledging their own vulnerability,reconstructing the meaning of time,and seeking emotional and internal support to regain self balance and control over life.The above-mentioned pain coping strategies are not only individual actions within specific medical contexts,but also shaped by social structure and cultural environment.The study concluded by discussing the necessity and possibility of a meaning-centered medical interpretation model in China,and put forward corresponding reflections and suggestions.