Involving Individuals with Disorders of Sex Development and Their Parents in Exploring New Models of Shared Learning: Proceedings from a DSDnet COST Action Workshop
Year: 2018
Type: article
Abstract: The level of connection between health care professionals and people who experience a condition that affects sex development is variable. These people and associated support groups need to be included in discussions about research and healthcare delivery. The aim of this study was to understand the experiences of individuals with disorders of sexual development (DSD), their parents, health care providers, and support groups. Workshop planning, preparation, delivery, and evaluation involved members of working groups from the COST Action DSDnet. A coordinator, in collaboration with a support group representative, led the workshop design and delivery. Our successful, facilitated workshop involved 33 attendees from 8 EU countries. The workshop provided individuals with DSD, parents, advisory groups, and professionals with an opportunity for shared learning. Outputs focused on 7 key areas, including diagnosis, childhood, and transition to adult care as well as fostering discussion around registries, future research topics, consent processes, and information needs across the life course. The importance of trustworthy and knowledgeable providers, time to understand such rare conditions, and the place support groups have in a life course approach were valuable learning points for all attendees. In conclusion, workshops can be designed and delivered in meaningful ways for all those involved in care of individuals with rare conditions.
Source: Sexual Development
DOI: 10.1159/000490081
Authors: Caroline Sanders, Joanne Hall, Caroline Sanders, Arianne Dessens, Jillian Bryce, Nina Callens, Martine Cools, Mariam Kourime, Andreas Kyriakou, Alexander Springer, Laura Audi, Antonio Balsamo, Violeta Iotova, Vilhelm Mladenov, Maciej Krawczynski, Agneta Nordenskjöld, Marta Rozas, Hedi Claahsen-van der Grinten, Olaf Hiort, Stefan Riedl, S. Faisal Ahmed
Institutions: University of Manchester, Erasmus MC, University of Glasgow, Ghent University, Ghent University Hospital, Universitat Autònoma de Barcelona, Vall d'Hebron Institut de Recerca, Centre for Biomedical Network Research on Rare Diseases, IRCCS Azienda Ospedliero-Universitaria di Bologna Policlinico di Sant'Orsola, University of Bologna, Medical University of Varna, Poznan University of Medical Sciences, Karolinska University Hospital, Radboud University Medical Center, Amalia Kinderziekenhuis, University of Lübeck, Medical University of Vienna
Language: English
Subfield: Endocrinology, Diabetes and Metabolism
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
Funder: Medical Research Council
OpenAlex ID: W2809042830