Prader-Willi综合征患儿家庭管理方式现状及影响因素分析

Family management style in children with Prader-Willi syndrome and its influencing factors

目的调查Prader-Willi综合征患儿家庭管理现状并分析其影响因素,为采取针对性家庭干预方案提供参考。方法采用家庭管理量表、家庭坚韧性量表及领悟社会支持量表对172名Prader-Willi综合征患儿父母进行调查。结果患儿父母家庭管理量表中父母相互支持分量表得分(28.11±7.38)分,患儿日常生活(14.10±3.46)分,疾病管理能力(38.92±5.17)分,疾病相关担心(36.05±4.48)分,疾病管理困难(51.69±8.95)分,疾病精力消耗(16.63±2.69)分。回归分析结果显示,患儿年龄、疾病确诊时间、营养分期、异常行为、家庭人均月收入、家庭坚韧性及父母领悟社会支持是家庭管理方式的影响因素(均P<0.05)。结论Prader-Willi综合征患儿父母在患儿日常生活照护和疾病管理中存在较多困难。应重点关注年龄大、确诊时间晚、存在异常行为、收入低、父母家庭坚韧性和社会支持较差的患儿家庭。

Objective To investigate the level of family management in children with Prader-Willi syndrome(PWS)and analyze its influencing factors,aiming to provide reference for targeted family intervention.Methods A total of 172 parents of children with PWS were investigated with the Family Manageme Measure,the Family Hardiness Index and the Perceived Social Support Scale.Results In the Family Management Measure,the dimension scores of parental mutuality,child′s daily life,condition management ability,view of condition impact,family life difficulty,and condition management effort were(28.11±7.38),(14.10±3.46),(38.92±5.17),(36.05±4.48),(51.69±8.95),and(16.63±2.69),respectively.Regression analysis showed that,children′s age,time to diagnosis,nutritional stage,abnormal behavior,average per capita monthly income,family resilience and perceived social support were the influencing factors of family management(all P<0.05).Conclusion Parents of children with PWS encounter more difficulties in daily life care and disease management.Attention should be paid to those families of children with older age,late diagnosis,and abnormal behaviors,and those families with low income,poor resilience and social support.