安徽省苯丙酮尿症患儿监护人的社会支持状况调查分析

目的 了解安徽省苯丙酮尿症（Phenylketonuria,PKU）患儿监护人社会支持现况及其相关因素,为制定对PKU患儿监护人的关怀支持策略提供参考依据。方法 以安徽省3家主要妇幼保健机构诊治的175例PKU患儿监护人为研究对象,采用社会支持评定量表评价社会支持现况及其相关因素。结果 在175名PKU患儿监护人中,男性100人（57.1%）,女性75人（42.9%）;社会支持总分为(35.2±7.7)分,主观支持评分为(21.2±4.6)分,客观支持评分为(8.3±3.1)分,对支持的利用度评分为(5.7±1.9)分。社会支持总分及其3个领域得分在不同城乡、文化程度、职业、家庭人口数、家庭人均年收入及家庭儿童数量间的差异有统计学差异（P<0.05）。结论 安徽省PKU患儿监护人社会支持水平较低,应进一步加强对PKU患儿的监护人的关注,采取措施提高他们的社会支持水平。

Social support of parents with a PKU child in Anhui Province,China

Objective To describe the social support and related factors among parents with a Phenylketonuria (PKU) child in Anhui Province,and provide the basic information for establishing social support strategy for parents with a PKU child. Methods A total of 175 parents with a PKU child treated at three major Women and Children′s Health institutions in Anhui Province were selected.Their social support was evaluated by Social Support Rating Scale (SSRS). Results Among 175 parents with a PKU child,100 were male (57.1%) and 75 were female (42.9%).The total scores of social support were 35.2±7.7,subjective support was 21.2±4.6,objective support was 8.3±3.1 and support availability was 5.7±1.9.The total scores of social support,subjective support,and objective support were significantly different between subgroups classified by area,education,occupation,family size,family annual income and number of children (P<0.05). Conclusion The level of social support among parents with a PKU child was lower in Anhui province,so the parents with a PKU child need more attention and measures should be taken to raise social support for them.