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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...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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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. |
format | Online Article Text |
id | pubmed-9369005 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
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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