PDF(Pubmed)
Abstract：
Individuals living with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) have reported feeling discredited and unsupported by healthcare professionals. However, the level of knowledge about hEDS/HSD among maternity staff remains unknown. Informed by patient and public involvement, this research aimed to investigate maternity staff\'s knowledge and confidence in supporting people with hEDS/HSD, examine people with hEDS/HSD\'s experiences of perinatal care, and co-create tools to help maternity staff support people childbearing with hEDS/HSD. Two online mixed-methods international surveys were completed by childbearing people with hEDS/HSD (N = 955) and maternity staff (N = 307). This was followed by the co-creation of three tools with 17 co-creators and a design team. Two main qualitative themes were identified through thematic analysis: (1) a need for recognition of hEDS/HSD in perinatal care and (2) the delivery of appropriate individualised perinatal care. Quantitatively, people with hEDS/HSD perceived maternity professionals to have a low level of knowledge about the conditions. Respectively, maternity staff reported low levels of confidence in supporting people with hEDS/HSD. The co-created tools provide applicable outputs for both education and practice and include an i-learn module hosted by the Royal College of Midwives, a tool for perinatal records, and infomercials.
摘要：
患有超移动Ehlers-Danlos综合征（hEDS）和高移动性频谱障碍（HSD）的人报告说，他们感到信誉不佳，得不到医疗保健专业人员的支持。然而,产科工作人员对hEDS/HSD的了解程度尚不清楚.在病人和公众参与的情况下，这项研究旨在调查产科工作人员在支持hEDS/HSD患者方面的知识和信心，检查有hEDS/HSD围产期护理经验的人，并共同创建工具，以帮助产妇工作人员支持使用hEDS/HSD生育的人。有hEDS/HSD的育龄患者（N=955）和产科工作人员（N=307）完成了两项在线混合方法国际调查。随后是由17位共同创作者和一个设计团队共同创建的三个工具。通过主题分析确定了两个主要的定性主题：（1）在围产期护理中需要认识hEDS/HSD；（2）提供适当的个性化围产期护理。定量地,患有hEDS/HSD的人认为产妇专业人员对这种疾病的知识水平较低。分别,产科人员报告说，对hEDS/HSD患者的支持信心水平较低。共同创建的工具为教育和实践提供适用的产出，并包括由皇家助产士学院主办的i-learn模块，围产期记录的工具,和商业广告。
