Gramc Martin, Monro Surya, Stephenson John, Streuli Jürg
Institute of Biomedical Ethics and History of Medicine, University of Zurich, 8006 Zürich, Switzerland.
Centre for Gender and Africa Studies, Faculty of the Humanities, University of the Free State South Africa, Bloemfontein 9301, South Africa.
Behav Sci (Basel). 2024 Sep 17;14(9):832. doi: 10.3390/bs14090832.
Early psychosocial support for parents/legal guardians who have children with variations of sex characteristics (VSCs) is crucial in helping avoid potentially harmful medical procedures. Psychosocial support, including peer support, can help parents/legal guardians choose the best care path for their child, and it remains important throughout childhood. However, there is a lack of data on the provision of psychosocial support for families with a child who has VSCs. We sought knowledge about the timing and types of psychosocial support, and the level of implementation of psychosocial support amongst health and psychosocial care professionals and peer supporters. A survey was conducted using a purposive sample of healthcare professionals and members of peer support groups across Europe. A total of 301 responses were received and analysed using descriptive and inferential methods. The survey results showed that psychosocial support primarily addresses diagnostic procedures, medical treatment, and medical interventions. Whilst the majority of healthcare professionals aspired to have psychosocial support provided at the point where a diagnosis of VSCs was suspected, this was only reported as current practice by a minority of respondents. Overall, the survey indicates that there is a need for greater implementation of psychosocial support, and more collaboration between healthcare professionals and peer support groups in caring for children with VSCs and their families.
为有性特征变异(VSCs)儿童的父母/法定监护人提供早期心理社会支持,对于避免潜在有害的医疗程序至关重要。心理社会支持,包括同伴支持,可以帮助父母/法定监护人选择最适合其孩子的护理路径,并且在整个童年时期都很重要。然而,对于有VSCs儿童的家庭,缺乏关于提供心理社会支持的数据。我们寻求了解心理社会支持的时机和类型,以及健康和心理社会护理专业人员及同伴支持者之间心理社会支持的实施水平。通过对欧洲各地医疗保健专业人员和同伴支持团体成员进行有目的抽样调查。共收到301份回复,并使用描述性和推断性方法进行分析。调查结果表明,心理社会支持主要涉及诊断程序、医疗治疗和医疗干预。虽然大多数医疗保健专业人员希望在怀疑患有VSCs时就提供心理社会支持,但只有少数受访者报告这是目前的做法。总体而言,调查表明需要更多地实施心理社会支持,并且医疗保健专业人员和同伴支持团体之间需要在照顾有VSCs的儿童及其家庭方面加强合作。