Involving individuals with disorders of sex development and their parents in exploring new models of shared learning: Proceedings from a DSDnet COST Action workshop

Sanders, C. et al. (2018) Involving individuals with disorders of sex development and their parents in exploring new models of shared learning: Proceedings from a DSDnet COST Action workshop. Sexual Development, 12(5), pp. 225-231. (doi: 10.1159/000490081) (PMID:29936513)

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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.

Item Type:Articles
Additional Information:The authors performed this work as part of the COST Action BM1303 DSDnet, supported by COST (European Cooperation in Science and Technology; www.cost.eu/COST_Actions/bmbs/ BM1303). S.F.A. and J.B. were supported by a MRC UK grant G1100236.
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Bryce, Dr Jillian and Kyriakou, Dr Andreas and Kourime, Ms Mariam and Ahmed, Professor Syed Faisal
Authors: Sanders, C., Hall, J., Sanders, C., Dessens, A., Bryce, J., Callens, N., Cools, M., Kourime, M., Kyriakou, A., Springer, A., Audi, L., Balsamo, A., Iotova, V., Mladenov, V., Krawczynski, M., Nordenskjöld, A., Rozas, M., Claahsen-van der Grinten, H., Hiort, O., Riedl, S., and Ahmed, S. F.
College/School:College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
Journal Name:Sexual Development
Publisher:Karger
ISSN:1661-5425
ISSN (Online):1661-5433
Published Online:23 June 2018
Copyright Holders:Copyright © 2018 S. Karger AG, Basel
First Published:First published in Sexual Development 12(5):225-231
Publisher Policy:Reproduced in accordance with the copyright policy of the publisher

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
190419The International DSD Network (I-DSD)Syed Faisal AhmedMedical Research Council (MRC)G1100236/1Med - Child Health