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Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development
  1. Arianne Dessens1,
  2. Guilherme Guaragna-Filho2,
  3. Andreas Kyriakou3,
  4. Jillian Bryce3,
  5. Caroline Sanders4,
  6. Agneta Nordenskjöld5,
  7. Marta Rozas6,
  8. Violeta Iotova7,
  9. Annastasia Ediati8,
  10. Anders Juul9,
  11. Maciej Krawczynski10,
  12. Olaf Hiort11,
  13. S Faisal Ahmed3
  1. 1 Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center Rotterdam – Sophia, Rotterdam, The Netherlands
  2. 2 Interdisciplinary Group of Study of Sex Determination and Differentiation (GIEDDS), School of Medicine (FCM), State University of Campinas (UNICAMP), Campinas, Brazil
  3. 3 Developmental Endocrinology Research Group, School of Medicine, University of Glasgow, Glasgow, UK
  4. 4 University of Northern British Columbia, Canada & Adjunct Alder Hey Children Hospital, NHS Trust UK, Prince George, Canada
  5. 5 Paediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm, Sweden
  6. 6 GrApSIA (Grupo de Apoyo al Síndrome de Insensibilidad a los Andrógenos), Barcelona, Spain
  7. 7 Department of Paediatrics, Medical University of Varna, Varna, Bulgaria
  8. 8 Department of Clinical Psychology, Diponegoro University, Semarang, Indonesia
  9. 9 Department of Growth and Reproduction, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
  10. 10 Department of Medical Genetics, Poznan University of Medical Science, Poznań, Poland
  11. 11 Division of Paediatric Endocrinology and Diabetes, University of Lübeck, Lübeck, Germany
  1. Correspondence to Dr. Arianne Dessens; a.b.dessens{at}erasmusmc.nl

Abstract

Objective Disorders in sex development (DSD) can be treated well medically, but families will encounter many psychosocial challenges. Promoting counselling to facilitate acceptance and coping is important yet equality of access is unknown. This study investigated the modalities of psychosocial care provided in centres of DSD care.

Methods An international survey conducted among 93 providers of psychosocial care, identified through clinical networks, registries and professional forums.

Results Forty-six respondents from 22 different countries filled out the survey (49%). Most respondents (78%) were based in hospital-based expert teams. Referrals came from paediatric endocrinologists (76%), gynaecologists (39%) and paediatric urologists (37%). Psychological counselling was most frequently given to parents (74%), followed by children (39%), adolescents (37%) and adults (11%) and was most frequently focused on coping and acceptance of DSD (54%), education (52%), the atypical body (39%) and genital (41%), decisions on genital surgery (33%), complications with sexual intercourse (29%), disclosure (28%) and acceptance of infertility (11%). Respondents most frequently observed DSD related confusion about gender (54%), acceptance of cross gender behaviour (50%), anxiety (43%) and sadness and depression (38%).

Conclusions Most psychosocial care is provided to parents. It is assumed that parental support is important as acceptance is conditional to become affectionate caretakers. Although it may be more difficult for youngsters to communicate about their condition and treatment, providing opportunity to bring up issues that are important for them, is imperative. Clinicians and parents should be aware that parental and patients’ interests may not correspond completely. Psychosocial management should also include transition and adult care.

  • Clinical networks
  • Disorders of sex development
  • Multidisciplinary team
  • Rare diseases
  • Psychosocial care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors AD designed the study, including development of the first draft of the questionnaire; distributed the questionnaire to the surveyed clinicians; and received and collected the responses; analysed and interpreted the data; drafted the initial manuscript; and approved the final manuscript as submitted. GGF, AK, JB, CS, MR and VI reviewed and revised the first draft of the questionnaire. GGF compiled the survey into a web-based tool (Google forms). GGF and AK reviewed and revised the first draft of the initial manuscript. GGF, AK, JB, CS, AN, MR, VI, AE, AJ, MK and OH reviewed and approved the final manuscript as submitted. SFA initiated the project and provided overall supervision of the study from conception to completion; reviewed and revised the initial questionnaire and manuscript; approved the final manuscript as submitted; and acts as the guarantor.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement We do not wish to share data originating from our database in order to protect the anonymity of subjects included in this survey. Permission has not been obtained to share data widely with other investigators and would require individual content/assent.

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