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Identifying the Resource Needs of Young People with Differences of Sex Development

Adolescents with differences of sex development (DSD) often have complex medical, surgical, and psychological care needs and require age-appropriate resources. This cross-sectional study describes the past and current experiences of adolescents and young adults with DSD and their need for informatio...

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Autores principales: Tonkin-Hill, Gina, Hanna, Chloe, Bonelli, Roberto, Mortimer, Rowena, O’Connell, Michele A., Grover, Sonia R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9369005/
https://www.ncbi.nlm.nih.gov/pubmed/35955990
http://dx.doi.org/10.3390/jcm11154372
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author Tonkin-Hill, Gina
Hanna, Chloe
Bonelli, Roberto
Mortimer, Rowena
O’Connell, Michele A.
Grover, Sonia R.
author_facet Tonkin-Hill, Gina
Hanna, Chloe
Bonelli, Roberto
Mortimer, Rowena
O’Connell, Michele A.
Grover, Sonia R.
author_sort Tonkin-Hill, Gina
collection PubMed
description Adolescents with differences of sex development (DSD) often have complex medical, surgical, and psychological care needs and require age-appropriate resources. This cross-sectional study describes the past and current experiences of adolescents and young adults with DSD and their need for information and support. Participants aged 14–30 years with DSD diagnoses were identified, either from departmental records at the Royal Children’s Hospital (RCH), Melbourne, Australia, or from the private practice of a gynecologist linked to RCH. Anonymized data were collected from a specifically designed online survey. Of the 314 successfully traced patients, 91 (28.9%) completed the survey. Amongst respondents, older age was strongly correlated with higher levels of distress at the time of disclosure (b = 0.67, p < 0.001). People who reported greater understanding of their condition (b = −0.45, p = 0.010) and higher levels of support (b = −0.40, p = 0.003) identified lower levels of current distress. Respondents preferred to receive information from a specialist doctor, GP, or websites and reported information needs being highest during adolescence. Only one in four respondents recalled ever being offered psychological support. A number of perceived barriers to accessing support were identified. Our findings indicate that young people’s information and support needs may be best met by improving online resources, as well as increasing introductions to knowledgeable and appropriate primary care physicians, psychological services, and peer support groups. Further work to promote and increase engagement with psychological and peer support for those with DSD will be important.
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spelling pubmed-93690052022-08-12 Identifying the Resource Needs of Young People with Differences of Sex Development Tonkin-Hill, Gina Hanna, Chloe Bonelli, Roberto Mortimer, Rowena O’Connell, Michele A. Grover, Sonia R. J Clin Med Article Adolescents with differences of sex development (DSD) often have complex medical, surgical, and psychological care needs and require age-appropriate resources. This cross-sectional study describes the past and current experiences of adolescents and young adults with DSD and their need for information and support. Participants aged 14–30 years with DSD diagnoses were identified, either from departmental records at the Royal Children’s Hospital (RCH), Melbourne, Australia, or from the private practice of a gynecologist linked to RCH. Anonymized data were collected from a specifically designed online survey. Of the 314 successfully traced patients, 91 (28.9%) completed the survey. Amongst respondents, older age was strongly correlated with higher levels of distress at the time of disclosure (b = 0.67, p < 0.001). People who reported greater understanding of their condition (b = −0.45, p = 0.010) and higher levels of support (b = −0.40, p = 0.003) identified lower levels of current distress. Respondents preferred to receive information from a specialist doctor, GP, or websites and reported information needs being highest during adolescence. Only one in four respondents recalled ever being offered psychological support. A number of perceived barriers to accessing support were identified. Our findings indicate that young people’s information and support needs may be best met by improving online resources, as well as increasing introductions to knowledgeable and appropriate primary care physicians, psychological services, and peer support groups. Further work to promote and increase engagement with psychological and peer support for those with DSD will be important. MDPI 2022-07-27 /pmc/articles/PMC9369005/ /pubmed/35955990 http://dx.doi.org/10.3390/jcm11154372 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Tonkin-Hill, Gina
Hanna, Chloe
Bonelli, Roberto
Mortimer, Rowena
O’Connell, Michele A.
Grover, Sonia R.
Identifying the Resource Needs of Young People with Differences of Sex Development
title Identifying the Resource Needs of Young People with Differences of Sex Development
title_full Identifying the Resource Needs of Young People with Differences of Sex Development
title_fullStr Identifying the Resource Needs of Young People with Differences of Sex Development
title_full_unstemmed Identifying the Resource Needs of Young People with Differences of Sex Development
title_short Identifying the Resource Needs of Young People with Differences of Sex Development
title_sort identifying the resource needs of young people with differences of sex development
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9369005/
https://www.ncbi.nlm.nih.gov/pubmed/35955990
http://dx.doi.org/10.3390/jcm11154372
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