Gramc Martin
Institute of Bioethics and History of Medicine, University of Zürich, Zürich 8006, Switzerland.
Sex Med. 2024 Aug 13;12(4):qfae046. doi: 10.1093/sexmed/qfae046. eCollection 2024 Aug.
New guidelines in the by the Lawson Wilkins Pediatric Endocrine Society/European Society for Paediatric Endocrinology Consensus Group 2006 introduced multidisciplinary teams (MDTs) to provide care that involves collaboration between healthcare professionals, parents, and children with variations of sex characteristics (VSC).
The aim of this study was to examine a neglected but important field of collaboration among healthcare professionals and peer support groups who provide care for people with VSC.
The study outcome was the information obtained regarding the actual composition and collaboration of the multidisciplinary teams caring for children with VSC, including their collaboration with parents, peer support groups, and other care providers.
In this study we used an exploratory qualitative design based on mixed focus groups (in terms of professional background) and reflexive thematic analysis. Semi-structured focus group interview guides were used to obtain information about the participants' viewpoints on the composition and challenges of, and collaboration between, peer support groups and members of multidisciplinary teams working to care for children with VSC and their parents. Seven focus groups were conducted with healthcare professionals and peer support groups in care teams in Central, Northern, and Western Europe. The data from the focus groups were examined using reflexive thematic analysis.
The participants in the focus groups provided information regarding the use of multidisciplinary and interdisciplinary child- and family-oriented approaches and the strengths and challenges of collaboration and peer support groups. The results showed that the teams used a predominantly multidisciplinary approach and suffered from a lack of psychosocial providers, poor collaboration with peer support groups, and poor implementation of shared decision-making to address the clinical uncertainty of parents and people with VSC.
Clinicians should provide more psychosocial support and improve collaboration with peer support groups and nonmedical professionals.
This study is one of the first qualitative studies to provide information on the collaboration of multidisciplinary teams working to provide care for children with VSC and collaborate with their parents in the European context. However, due to language barriers, the dropout rate of participants, and the under-representation of peer support groups in the sample there was a lack of information on collaboration among healthcare professionals and peer support groups.
The collaboration between MDTs and parents does not involve adequate psychosocial and peer support or shared decision-making to address the uncertainty experienced by children and families when faced with information about variations of sex characteristics.
劳森·威尔金斯儿科内分泌学会/欧洲儿科内分泌学会共识小组2006年发布的新指南引入了多学科团队（MDT），以提供涉及医疗保健专业人员、家长以及具有性特征变异（VSC）的儿童之间合作的护理。
本研究的目的是探讨为VSC患者提供护理的医疗保健专业人员和同伴支持团体之间一个被忽视但重要的合作领域。
研究结果是获得的关于照顾VSC儿童的多学科团队的实际组成和合作的信息，包括他们与家长、同伴支持团体以及其他护理提供者的合作。
在本研究中，我们采用了基于混合焦点小组（根据专业背景）和反思性主题分析的探索性定性设计。使用半结构化焦点小组访谈指南来获取有关参与者对同伴支持团体以及为照顾VSC儿童及其家长而工作的多学科团队成员的组成、挑战和合作的观点的信息。在中欧、北欧和西欧的护理团队中，与医疗保健专业人员和同伴支持团体进行了七个焦点小组访谈。使用反思性主题分析对焦点小组的数据进行了研究。
焦点小组的参与者提供了有关使用多学科和跨学科的以儿童和家庭为导向的方法以及合作和同伴支持团体的优势与挑战的信息。结果表明，这些团队主要采用多学科方法，并且存在缺乏心理社会服务提供者、与同伴支持团体合作不佳以及在解决家长和VSC患者的临床不确定性方面共同决策实施不力的问题。
临床医生应提供更多心理社会支持，并改善与同伴支持团体和非医学专业人员的合作。
本研究是首批定性研究之一，旨在提供有关在欧洲背景下为VSC儿童提供护理并与他们的家长合作的多学科团队合作情况的信息。然而，由于语言障碍、参与者的退出率以及样本中同伴支持团体代表性不足，缺乏关于医疗保健专业人员和同伴支持团体之间合作的信息。
多学科团队与家长之间的合作在应对儿童和家庭面对性特征变异信息时所经历的不确定性方面，没有涉及足够的心理社会和同伴支持或共同决策。
