DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey
Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “approp...
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| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2012-01-01
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| Series: | Advances in Urology |
| Online Access: | http://dx.doi.org/10.1155/2012/185787 |
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| author | Jürg C. Streuli Birgit Köhler Knut Werner-Rosen Christine Mitchell |
| author_facet | Jürg C. Streuli Birgit Köhler Knut Werner-Rosen Christine Mitchell |
| author_sort | Jürg C. Streuli |
| collection | DOAJ |
| description | Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies. |
| format | Article |
| id | doaj-art-100389700cdd408783615a6265181e41 |
| institution | Kabale University |
| issn | 1687-6369 1687-6377 |
| language | English |
| publishDate | 2012-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Advances in Urology |
| spelling | doaj-art-100389700cdd408783615a6265181e412025-02-03T05:54:20ZengWileyAdvances in Urology1687-63691687-63772012-01-01201210.1155/2012/185787185787DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative SurveyJürg C. Streuli0Birgit Köhler1Knut Werner-Rosen2Christine Mitchell3Institute of Biomedical Ethics, University of Zurich, Pestalozzistraße 24, 8032 Zurich, SwitzerlandDepartment of Pediatric Endocrinology, University Children's Hospital, Charité, Humboldt University, 13353 Berlin, GermanyDepartment of Pediatric Endocrinology, University Children's Hospital, Charité, Humboldt University, 13353 Berlin, GermanyOffice of Ethics, Children's Hospital Boston Division of Medical Ethics, and Harvard Medical School, Boston, MA 02115, USATreatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.http://dx.doi.org/10.1155/2012/185787 |
| spellingShingle | Jürg C. Streuli Birgit Köhler Knut Werner-Rosen Christine Mitchell DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey Advances in Urology |
| title | DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey |
| title_full | DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey |
| title_fullStr | DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey |
| title_full_unstemmed | DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey |
| title_short | DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey |
| title_sort | dsd and professionalism from a multilateral view supplementing the consensus statement on the basis of a qualitative survey |
| url | http://dx.doi.org/10.1155/2012/185787 |
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