农村地区先天性并指畸形患儿致家庭负担情况调查

The investigation and research about the burden to the family members of children with congenital syndactyly

目的了解农村地区先天性并指畸形患儿致家庭负担情况。方法以生活质量综合评定问卷(Generic Quality of Life Inventory-74,GQOLI-74)为测量工具,对167名出生缺陷患儿的504名亲属的生活质量进行调查,同时结合症状自评量表(Symptom Check List 90,SCL-90)对其心理健康状况进行研究。结果患儿家庭成员在GQOLI总分及4个维度方面得分均低于普通农村人口,但仅在总分及躯体健康维度、心理健康及社会功能维度3个维度方面得分差异有统计学意义(P<0.05);在性别方面,患儿女性家庭成员SCL-90的9个因子得分均高于男性家庭成员,但仅在抑郁因子得分差异有统计学意义(P<0.05);在年龄方面,发现患儿祖(外)父母SCL-90各因子得分普遍高于患儿父母,但仅在抑郁和精神病性两个因子得分差异有统计学意义(P<0.05)。结论先天性并指畸形患儿对于家庭成员造成的经济负担不大,但精神方面的负担不容忽视。

Objective To understand the congenital syndactyly to the burden of the family in rural area. Meth- ods 504 accompanying people of 167 patients were assessed with GQOLI to detect the quality of life and SCL-90 to relevant the mental healthy of accompanying people.Results The score of BSSI of accompanying people were ob- viously lower than the general population in total score, physical health, mental health and social function dimen- sions of GQOLI,and the difference has statistical significant（P〈0.05）. All factor scores of accompanying people of SCL-90 with congenital syndactyly children were higher than the normal group,but only the difference in interper- sonal relationship, depression, anxiety and psychosis-like symptoms had statistical significant （ P〈 0.05）. All factor scores of SCL-90 of female accompanying people were higher than the males,but only the difference in depression had statistical significant（P〈0.05）. The grandparents got higher scores in all factor scores of SCL-90 than the parents, but only the difference in depression and psychosis-like symptoms had statistical significant （ P 〈 0.05 ）. Conclusion The burden of mental healthy was more serious than the economic burden to the famliy members with the children of congenital syndactyly.