A SURVEY OF ADULTS WITH WILLIAMS SYNDROME AND IDIOPATHIC INFANTILE HYPERCALCAEMIA
A SURVEY OF ADULTS WITH WILLIAMS SYNDROME AND IDIOPATHIC INFANTILE HYPERCALCAEMIA
复制标题
患有威廉姆斯综合征和特发性婴儿高钙血症的成年人的调查
DOI：
10.1111/j.1469-8749.1990.tb16912.x
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发表时间：
1990
影响因子：
3.8
通讯作者：
O. Udwin
中科院分区：
文献类型：
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作者：
O. Udwin
由119名患有威廉姆斯综合征或特发性婴儿高钙血症的成人的照顾者完成的问卷提供了有关目前生活安排、日间职业和成就、自我照顾技能、社会关系、行为和适应困难以及威廉姆斯综合征和特发性婴儿高钙血症对照顾者及其家庭的影响的信息。据报道，许多人在成年后仍有明显的行为和社交困难，大多数人在穿衣、如厕和准备食物等日常活动中需要一些监督和支持。一些护理人员对受教育程度、目前的日间职业和从专业人员那里得到的支持不满意。超过一半的人担心未来的生活安排和白天的工作。两组问卷的比较显示，他们的能力或行为特征没有明显差异。
Questionnaires completed by the caregivers of 119 adults with Williams syndrome or idiopathic infantile hypercalcaemia gave information on current living arrangements, daytime occupations and attainments, self‐care skills, social relationships, behavioural and adjustment difficulties and the impact of Williams syndrome and idiopathic infantile hypercalcaemia on caregivers and their families. Many were reported to have marked behavioural and social difficulties persisting into adulthood, and most required some supervision and support in everyday activities such as dressing, toileting and preparing food. Some caregivers were dissatisfied with the level of educational attainment, current daytime occupations and support received from professionals. Over half were concerned about future living arrangements and daytime occupations. Comparisons between the questionnaires for the two groups revealed no phenotypical differences in their abilities or behavioural characteristics.