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白血病是一种治疗周期长且费用高的严重疾病,患儿家庭的社会支持系统的构建状况对其能否顺利进行治疗起着至关重要的作用。笔者运用观察法和访谈法在北京某医院对非京籍白血病患儿家庭开展调查,运用定性方法对患儿家庭社会支持系统现状进行研究。本研究发现:白血病患儿家庭的微观支持系统中,亲属以经济支持和照料支持为主,支持的力度较强。朋辈的经济和心理支持的程度较弱。病友间的相互沟通成为患儿家庭心理支持的重要力量。宏观支持系统主要通过医疗保险报销、公益基金救助、单位募集捐款、志愿服务等形式为患儿家庭提供经济和心理层面的支持。
Leukemia is a serious disease with long treatment cycle and high cost. The construction of social support system in pediatric families plays a crucial role in its successful treatment. The author uses the observation method and the interview method to investigate the families of children with non-Beijing nationality leukemia in a hospital in Beijing and uses the qualitative method to study the current situation of the family social support system in children. The study found that: families of micro-support system for children with leukemia, relatives to economic support and care support, strong support. Peer economic and psychological support to a lesser extent. Mutual communication between patients become an important force in children’s family psychological support. The macro support system mainly provides economic and psychological support for children with families through such forms as medical insurance reimbursement, public welfare fund relief, donations from donations and volunteer services.