...
  • 主题
高级搜索  >
历史搜索 清空历史
首页> 外文期刊>Journal of Multidisciplinary Healthcare >Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease
【24h】

Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease

机译：父母对罕见疾病的需求量表的开发：一种用于衡量照顾患有罕见疾病的孩子的父母的支持性护理需求的工具

获取原文
           
页面导航
  • 摘要
  • 著录项
  • 相似文献
  • 相关主题

摘要

Background: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. Objective: To develop a scale for measuring the supportive care needs of parents of children with rare diseases. Method: A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Results: Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need. Conclusion: This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected children.
机译：背景：受到罕见疾病侵袭的儿童和家庭在医学，科学和政治领域受到的关注很少，尤其是父母的需求很少受到关注。患病的父母通常很难获得信息和支持以及适当的医疗保健服务。虽然已经开发出用于测量患有慢性疾病的儿童的父母需求的量表，但是以前没有尝试过开发用于评估患有罕见疾病的儿童的父母的需求量表。目的：建立一个量表，以测量罕见疾病患儿父母的支持性照护需求。方法：将301份对我们的家长需求调查的答复随机分为两半，一个用于探索性因素分析，另一个用于确认性因素分析（CFA）。删除不合适的项目后，进行探索性因素分析，以确定数据的因素结构。然后使用结构方程模型进行CFA确认因素结构。结果：72个项目被输入到CFA中，并用卵石图显示了可能的四因素解决方案。结果提供了四个独立的父母需求量表：了解疾病（四个项目）;与卫生专业人员合作（四个项目）;情绪问题（三项）;和财务需求（三项）。结构方程模型确定了四因素解决方案的适用性，并表明可以添加四个子量表来提供父母整体需求量表。结论：这是第一个用来衡量罕见病患儿父母支持性照护需求的量表。该量表适合用于调查中以制定政策，进行个别临床评估以及潜在地评估新计划。衡量父母照料患有罕见疾病的孩子的支持性护理需求，有望为父母及其受影响的孩子带来更好的身心健康结果。

著录项

相似文献

  • 外文文献
  • 中文文献
  • 专利
获取原文

客服邮箱：kefu@zhangqiaokeyan.com

京公网安备：11010802029741号 ICP备案号：京ICP备15016152号-6 六维联合信息科技 (北京) 有限公司©版权所有

  • 客服微信

  • 服务号