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

Arianne Dessens; Guilherme Guaragna-Filho; Andreas Kyriakou; Jillian Bryce; Caroline Sanders; Agneta Nordenskjöld; Marta Rozas; Violeta Iotova; Annastasia Ediati; Anders Juul; Maciej Krawczynski; Olaf Hiort; S Faisal Ahmed

doi:10.1136/bmjpo-2017-000132

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

Arianne Dessens, Guilherme Guaragna-Filho, Andreas Kyriakou, Jillian Bryce, Caroline Sanders, Agneta Nordenskjöld, Marta Rozas, Violeta Iotova, Annastasia Ediati, Anders Juul, Maciej Krawczynski, Olaf Hiort, S Faisal Ahmed

Department of Clinical Medicine

6 Citations (Scopus)

38 Downloads (Pure)

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.

Original language	English
Article number	e000132
Journal	BMJ Paediatrics Open
Volume	1
Number of pages	6
ISSN	2399-9772
DOIs	https://doi.org/10.1136/bmjpo-2017-000132 https://doi.org/10.1136/bmjpo-2017-000132corr1
Publication status	Published - Dec 2017

Access to Document

10.1136/bmjpo-2017-000132Licence: CC BY-NC
10.1136/bmjpo-2017-000132corr1Licence: CC BY-NC

Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex developmentFinal published version, 712 KBLicence: CC BY-NC

Cite this

Dessens, A., Guaragna-Filho, G., Kyriakou, A., Bryce, J., Sanders, C., Nordenskjöld, A., Rozas, M., Iotova, V., Ediati, A., Juul, A., Krawczynski, M., Hiort, O., & Faisal Ahmed, S. (2017). Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development. BMJ Paediatrics Open, 1, [e000132]. https://doi.org/10.1136/bmjpo-2017-000132, https://doi.org/10.1136/bmjpo-2017-000132corr1

Dessens, A, Guaragna-Filho, G, Kyriakou, A, Bryce, J, Sanders, C, Nordenskjöld, A, Rozas, M, Iotova, V, Ediati, A, Juul, A, Krawczynski, M, Hiort, O & Faisal Ahmed, S 2017, 'Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development', BMJ Paediatrics Open, vol. 1, e000132. https://doi.org/10.1136/bmjpo-2017-000132, https://doi.org/10.1136/bmjpo-2017-000132corr1

@article{f3f6697d9dfd459f864bb1f9d2587281,

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

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.",

author = "Arianne Dessens and Guilherme Guaragna-Filho and Andreas Kyriakou and Jillian Bryce and Caroline Sanders and Agneta Nordenskj{\"o}ld and Marta Rozas and Violeta Iotova and Annastasia Ediati and Anders Juul and Maciej Krawczynski and Olaf Hiort and {Faisal Ahmed}, S",

year = "2017",

month = dec,

doi = "10.1136/bmjpo-2017-000132",

language = "English",

volume = "1",

journal = "BMJ Paediatrics Open",

issn = "2399-9772",

publisher = "BMJ Publishing Group",

}

TY - JOUR

T1 - Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development

AU - Dessens, Arianne

AU - Guaragna-Filho, Guilherme

AU - Kyriakou, Andreas

AU - Bryce, Jillian

AU - Sanders, Caroline

AU - Nordenskjöld, Agneta

AU - Rozas, Marta

AU - Iotova, Violeta

AU - Ediati, Annastasia

AU - Juul, Anders

AU - Krawczynski, Maciej

AU - Hiort, Olaf

AU - Faisal Ahmed, S

PY - 2017/12

Y1 - 2017/12

N2 - 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.

AB - 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.

U2 - 10.1136/bmjpo-2017-000132

DO - 10.1136/bmjpo-2017-000132

M3 - Journal article

C2 - 29637150

SN - 2399-9772

VL - 1

JO - BMJ Paediatrics Open

JF - BMJ Paediatrics Open

M1 - e000132

ER -

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

Abstract

Access to Document

Fingerprint

Cite this