Institute for Sex Research, Sexual Medicine and Forensic Psychiatry, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Psychology, Medical School Hamburg, Hamburg, Germany.
Int J Impot Res. 2021 Mar;33(2):228-242. doi: 10.1038/s41443-021-00422-x. Epub 2021 Mar 16.
From different sides, there is a call for better psychosocial care and counselling in the field of diverse sex development (dsd). However, studies on the specific demands, deficits and needed improvements regarding those services are rare. This exploratory online study aimed at investigating counselling experiences and the ideas that different groups of participants have concerning the localisation of counselling structures and improving care. Quantitative and qualitative data (N = 630) were analysed within a mixed methods framework. The participants included experts of experience resp. patients with different intersex/dsd conditions (n = 40), parents of children with dsd (n = 27), professional psychosocial counsellors (n = 321) and experts in the field including medical practitioners, psychologists, natural and social scientists as well as others involved, e.g., students or relatives (n = 56). The results show a gap between receiving psychosocial and medical care in the group of adult lived-experience experts, who had received less psychosocial care than medical interventions. The findings also reveal important tasks of psychosocial care. A focus was set on parental experiences. Helpful aspects reported were talking with other parents of children with intersex/dsd, aspects missed were assistance in supporting the individual development of their children. The majority of all participants (58%) held the view that, apart from multidisciplinary competence centres, there also have to be easily accessible counselling services which offer support in everyday life. The participants named increasing quality and quantity as necessary improvements in counselling structures for children and adults with intersex/dsd and their families. Implications are drawn for the specific tasks and target groups of psychosocial care and needed research in intersex healthcare over life span.
从不同角度来看，在多样化性别发展（dsd）领域需要更好的心理社会关怀和咨询。然而，关于这些服务的具体需求、缺陷和需要改进的研究很少。这项探索性的在线研究旨在调查咨询经验，以及不同群体的参与者对咨询结构本地化和改善护理的想法。在混合方法框架内分析了定量和定性数据（N=630）。参与者包括经验丰富的专家或患有不同间性/DSD 疾病的患者（n=40）、DSD 儿童的父母（n=27）、专业心理社会辅导员（n=321）以及包括医学从业者、心理学家、自然和社会科学家在内的领域专家，以及其他相关人员，例如学生或亲属（n=56）。结果显示，在成年生活经验专家组中，心理社会护理和医疗护理之间存在差距，他们接受的心理社会护理比医疗干预少。研究结果还揭示了心理社会护理的重要任务。重点放在父母的经验上。报告的有益方面是与其他患有间性/DSD 的儿童的父母交谈，错过的方面是帮助支持他们孩子的个人发展。所有参与者中有 58%的人认为，除了多学科能力中心之外，还必须有易于获得的咨询服务，为日常生活提供支持。参与者表示，提高儿童和成人间性/DSD 及其家庭的咨询结构的质量和数量是必要的改进。这对跨生命周期的间性医疗保健中的心理社会关怀的具体任务和目标群体以及所需的研究提出了启示。
