Wiegmann Sabine, Schilling Ralph, Winter Mirja, Ernst Martina, Wechsung Katja, Kalender Ute, Stöckigt Barbara, Richter-Unruh Annette, Hiort Olaf, Döhnert Ulla, Marshall Louise, Rohayem Julia, Liesenkötter Klaus-Peter, Wabitsch Martin, Herrmann Gloria, Ernst Gundula, Roll Stephanie, Keil Thomas, Neumann Uta
Center for Chronically Sick Children, Department for paediatric endocrinology and diabetology, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, Berlin, Germany.
Institute of Social Medicine, Epidemiology and Health Economics, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, Berlin, Germany.
PEC Innov. 2024 Jul 8;5:100321. doi: 10.1016/j.pecinn.2024.100321. eCollection 2024 Dec 15.
Evaluation of the participant satisfaction with a newly developed interdisciplinary, modular education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents.
The two-day program including tailored medical information, peer consultation and psychological support aimed to improve diagnosis-specific knowledge and empowerment. Post-training satisfaction was measured using an adapted ZUF-8 questionnaire, scoring from 5 (worst) to a maximum of 26 (best) for persons aged 6-17 and from 10 to 40 points for adults, including 2 open-ended questions.
The questionnaire, completed by 89 children (6-13 years), 92 adolescents (14-17 years), 47 young adults (18-24 years), and 345 parents, revealed consistent high satisfaction with the program regardless of age or diagnosis (children 24.4 ± 2.1, adolescents 23.5 ± 2.7; young adults 36.0 ± 4.0, parents 36.6 ± 3.4). Neither sociodemographic factors nor diagnosis burden, shame, or informedness showed relevant associations with satisfaction levels. Participants highlighted exchange and open atmosphere as key satisfaction elements.
Satisfaction with the new education program was high in all examined groups. Implementing it in routine care requires further analysis to determine the program's long-term effects on well-being and knowledge.
The first educational program for young people with DSD addressing their specific challenges through inclusive language, an open approach to sex and gender and the inclusion of self-help groups.
评估针对患有性发育差异（DSD）的儿童、青少年和青年及其父母新开发的跨学科模块化教育项目的参与者满意度。
为期两天的项目包括量身定制的医学信息、同伴咨询和心理支持，旨在提高特定诊断知识和增强能力。培训后满意度通过改编的ZUF - 8问卷进行测量，6 - 17岁人群的评分从5分（最差）到最高26分（最佳），成年人的评分从10分至40分，包括2个开放式问题。
89名儿童（6 - 13岁）、92名青少年（14 - 17岁）、47名青年（18 - 24岁）和345名父母完成了问卷，结果显示无论年龄或诊断情况如何，对该项目的满意度都很高（儿童24.4 ± 2.1，青少年23.5 ± 2.7；青年36.0 ± 4.0，父母36.6 ± 3.4）。社会人口统计学因素、诊断负担、羞耻感或了解情况与满意度水平均未显示出相关关联。参与者强调交流和开放的氛围是关键的满意度因素。
所有被调查群体对新教育项目的满意度都很高。在常规护理中实施该项目需要进一步分析，以确定该项目对幸福感和知识的长期影响。
首个针对患有DSD的年轻人的教育项目，通过包容性语言、对性和性别的开放态度以及纳入自助团体来应对他们的特定挑战。
