探讨尿道下裂患儿家庭负担水平与社会支持水平，及二者的相关性。

采用偶遇抽样法，选择2014年1～12月，四川省医学科学院·四川省人民医院小儿外科收治的318例尿道下裂患儿及其父母为研究对象。采用自行设计的《尿道下裂患儿及家属的一般资料调查表》，以及调查疾病导致家庭负担水平与社会支持水平常用的《家庭负担量表》和《社会支持评定量表》，对患儿父母进行问卷调查，获得本组尿道下裂患儿家庭负担得分和社会支持得分，并统计学分析二者的相关性。本研究遵循的程序符合四川省医学科学院·四川省人民医院人体试验委员会制定的伦理学标准，得到该委员会批准，征得受试对象及其监护人知情同意，并与之签署临床研究知情同意书。

本研究共计发放调查问卷318套，回收有效问卷318套，本次调查问卷有效回收率为100%。《家庭负担量表》和《社会支持评定量表》调查结果显示，本组尿道下裂患儿家庭负担得分为(22.1±7.6)分，社会支持得分为(37.1±4.6)分。本调查有关患儿家庭负担与社会支持相关性的分析结果显示，二者呈负相关关系(r＝－0.419，P＝0.012)。其中，家庭负担与客观支持呈负相关关系(r＝－0.513，P＝0.004)，与主观支持呈负相关关系(r＝－0.498，P＝0.032)，与对社会支持的利用度呈负相关关系(r＝－0.632，P＝0.008)。

尿道下裂患儿家庭获得的社会支持越多，其家庭负担越低。医护人员应采取相应措施，提高尿道下裂患儿家庭的社会支持水平，减轻患儿的家庭负担。

To explore the level of family burden and social support of the families with hypospadias children, and the correlation between family burden and social support.

Investigation was conducted for the parents of 318 hypospadias children who were treated in department of Pediatric Surgery, Sichuan Academy of Medical Sciences & Sichuan Provincial People's Hospital, by accidental sampling method from January to December, 2014.Following questionnaires used for investigation were self-designed Basic Information Scale for Hypospadias Children and Their Parents, and Family Burden Scale and Social Support Rating Scale, which were normally used to investigate the family burden level and social support level caused by diseases.The score of family burden and social support were statistical analysed, also the correlation between them.The study protocol was approved by the Ethical Review Board of Investigation in Human Being of Sichuan Academy of Medical Sciences & Sichuan Provincial People's Hospital.Informed consent was obtained from the parents of each participant.

A total of 318 sets of questionnaires were handed out and 318 sets of valid questionnaires were collected, the feedback rate of the questionnaires were 100%. Family Burden Scale and Social Support Rating Scale showed, the total score of family burden was (22.1±7.6) scores and the total sore of social support was (37.1±4.6) scores, and they were negatively correlated(r=-0.419, P=0.012). Specifically, family burden was negatively correlated with objective support(r=-0.513, P=0.004), subjective support(r=-0.498, P=0.032) and support utilization(r=-0.632, P=0.008).

For families with hypospadias children, the more social support they get, the less the family burden is.Health care workers should take countermeasures to improve social support level of the families with hypospadias children, and decrease their family burden.