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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。
Objective To understand the status quo of social support for guardians with Phenylketonuria (PKU) and its related factors in Anhui Province, and to provide a reference for developing care support strategies for guardians of children with PKU. Methods A total of 175 PKU pediatric nurses diagnosed and treated in three major maternal and child health institutions in Anhui Province were selected as research objects. The social support rating scale was used to evaluate the status of social support and its related factors. Results Among 175 PKU pediatric guardians, 100 were male (57.1%) and 75 were female (42.9%). The total score of social support was (35.2 ± 7.7) and subjective support rating was (21.2 ± 4.6) The support score was (8.3 ± 3.1) points, and the supportability score was (5.7 ± 1.9) points. There was a significant difference (P <0.05) in the scores of social support scores and their scores in three fields in different urban and rural areas, educational level, occupation, household population, annual per capita income of the family and number of children in the family. Conclusion The social support for guardians of children with PKU in Anhui Province is relatively low. The guardianship of children with PKU should be further strengthened and measures should be taken to improve the level of their social support.