【摘要】 目的 探讨等待移植患者疾病家庭负担和患者生命质量的关系，分析社会支持和心理弹性因素在疾病家庭负担和生命质量之间的中介效应。方法 以2019年6月-2021年12月在新疆维吾尔自治区人民医院移植中心住院的190例等待移植的患者为研究对象，采用一般资料调查、心理弹性量表(CD-RISC)、MOS社会支持量表(MOS-SSS)、疾病家庭负担量表(FBS)、生命质量量表(GQOLI-74)对患者进行问卷调查，而后采用结构方程模型分析患者的心理弹性和社会支持在疾病家庭负担和生命质量间的中介效应。结果 FBS评分方面，生命质量好组经济负担、家庭日常活动、娱乐活动、家庭成员躯体健康、家庭关系及心理健康6个维度得分及总得分均低于生命质量差组(均P<0.05);生命质量好组心理弹性量表各维度及总得分、社会支持问卷中讯息与情绪性支持、情感性支持及总得分高于生命质量差组(均P<0.05);中介效应模型的总效应为0.91,直接效应为0.22,中介效应为-0.69(均P<0.05),直接效应占24.18%,中介效应占总效应的75.82%,其中，心理弹性占50.55%(0.46),社会支持占25.27%(0.23)。结论 等待移植患者疾病家庭负担和患者生命质量之间存在一定关系，患者的心理弹性和社会支持在等待移植患者疾病家庭负担与生命质量间的中介效应明显。更多还原

【Abstract】 Objective To explore the relationship between disease family burden and patients’ quality of life(QOL)in patients waiting for transplantation, and the mediating effects of social support and psychological resilience factors between di-sease family burden and QOL.Methods From June 2019 to December 2021,190 patients waiting for transplantation who were hospitalized in the transplantation center of the People’s Hospital of Xinjiang Uygur Autonomous Region were used as study subjects, and the general information survey, psychological resilience scale(CD-RISC),MOS social support scale(MOS-SSS),family burden of illness scale(FBS),and quality of life scale(GQOLI-74)questionnaires were administered to patients, while structural equation modeling was later used to analyze the mediating effects of patients’ psychological resi-lience and social support between family burden of illness and QOL.Results In terms of FBS scores, the good QOL group had lower scores and total scores on six dimensions of financial burden, family daily activities, recreational activities, physical health of family members, family relationships and psychological health than the poor QOL group(all P<0.05);the good QOL group had higher scores on all dimensions of the psychological resilience scale and total scores, message and emotional support, emotional support and total scores on the social support questionnaire than the poor QOL group(all P<0.05).The total effect of the mediated effect model was 0.91,the direct effect was 0.22,and the mediated effect was-0.69(all P<0.05).The direct effect accounted for 24.18% and the mediated effect accounted for 75.82% of the total effect, of which 50.55% was psychological resilience(0.46)and 25.27% was social support(0.23).Conclusion There is a relationship between family burden of disease and QOL of patients waiting for transplantation, and the mediating effect of patients’ psychological resilience and social support between family burden of disease and QOL of patients waiting for transplantation is significant.更多还原