Dessens Arianne, Guaragna-Filho Guilherme, Kyriakou Andreas, Bryce Jillian, Sanders Caroline, Nordenskjöld Agneta, Rozas Marta, Iotova Violeta, Ediati Annastasia, Juul Anders, Krawczynski Maciej, Hiort Olaf, Faisal Ahmed S
Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center Rotterdam - Sophia, Rotterdam, The Netherlands.
Interdisciplinary Group of Study of Sex Determination and Differentiation (GIEDDS), School of Medicine (FCM), State University of Campinas (UNICAMP), Campinas, Brazil.
BMJ Paediatr Open. 2017 Aug 31;1(1):e000132. doi: 10.1136/bmjpo-2017-000132. eCollection 2017.
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.
An international survey conducted among 93 providers of psychosocial care, identified through clinical networks, registries and professional forums.
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%).
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.
性发育障碍（DSD）在医学上能够得到良好治疗，但家庭会面临诸多心理社会挑战。促进咨询以帮助接受和应对这些挑战很重要，但获得咨询服务的平等性尚不清楚。本研究调查了DSD治疗中心提供心理社会护理的方式。
通过临床网络、登记处和专业论坛确定了93名心理社会护理提供者，并对其进行了一项国际调查。
来自22个不同国家的46名受访者填写了调查问卷（回复率49%）。大多数受访者（78%）来自医院的专家团队。转诊来自儿科内分泌科医生（76%）、妇科医生（39%）和儿科泌尿科医生（37%）。心理咨询最常提供给父母（74%），其次是儿童（39%）、青少年（37%）和成年人（11%），咨询内容最常集中在应对和接受DSD（54%）、教育（52%）、身体异常（39%）和生殖器方面（41%）、生殖器手术决策（33%）、性交并发症（29%）、信息披露（28%）和接受不孕不育（11%）。受访者最常观察到与DSD相关的性别困惑（54%）、对跨性别行为的接受（50%）、焦虑（43%）以及悲伤和抑郁（38%）。
大多数心理社会护理是提供给父母的。假定父母的支持很重要，因为接受是成为关爱照顾者的条件。尽管年轻人可能更难就自身病情和治疗进行沟通，但为他们提供提出对其重要问题的机会至关重要。临床医生和父母应意识到父母和患者的利益可能并不完全一致。心理社会管理还应包括过渡护理和成人护理。
