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2018-04-12

Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development

Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development

Arianne Dessens1, Guilherme Guaragna-Filho2, Andreas Kyriakou3, Jillian Bryce3, Caroline Sanders4, Agneta Nordenskjöld5, Marta Rozas6, Violeta Iotova7, Annastasia Ediati8, Anders Juul9, Maciej Krawczynski10, Olaf Hiort11, S Faisal Ahmed3

Author affiliations

  1. Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center Rotterdam – Sophia, Rotterdam, The Netherlands
  2. Interdisciplinary Group of Study of Sex Determination and Differentiation (GIEDDS), School of Medicine (FCM), State University of Campinas (UNICAMP), Campinas, Brazil
  3. Developmental Endocrinology Research Group, School of Medicine, University of Glasgow, Glasgow, UK
  4. University of Northern British Columbia, Canada & Adjunct Alder Hey Children Hospital, NHS Trust UK, Prince George, Canada
  5. Paediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm, Sweden
  6. GrApSIA (Grupo de Apoyo al Síndrome de Insensibilidad a los Andrógenos), Barcelona, Spain
  7. Department of Paediatrics, Medical University of Varna, Varna, Bulgaria
  8. Department of Clinical Psychology, Diponegoro University, Semarang, Indonesia
  9. Department of Growth and Reproduction, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
  10. Department of Medical Genetics, Poznan University of Medical Science, Poznań, Poland
  11. Division of Paediatric Endocrinology and Diabetes, University of Lübeck, Lübeck, Germany

Correspondence to Dr. Arianne Dessens; a.b.dessens@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.