Children with disorders of sex development: A qualitative study of early parental experience

Crissman, Halley P.; Warner, Lauren; Gardner, Melissa; Carr, Meagan M.; Schast, Aileen; Quittner, Alexandra L.; Kogan, Barry A.; Sandberg, David E.

doi:10.1186/1687-9856-2011-10

Cited by 132 publications

(119 citation statements)

References 50 publications

(58 reference statements)

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“…In some cohorts, adults' dissatisfaction with their early surgery is high [57], while others report more positive long-term outcomes [58,59]. Parental awareness of management options and consequences of decision making due to inadequate information are important topics [60]. …”

Section: Advancing and Evidencing Psychosocial And Psychosexual Well-mentioning

confidence: 99%

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

et al. 2016

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The goal of this update regarding the diagnosis and care of persons with disorders of sex development (DSDs) is to address changes in the clinical approach since the 2005 Consensus Conference, since knowledge and viewpoints change. An effort was made to include representatives from a broad perspective including support and advocacy groups. The goal of patient care is focused upon the best possible quality of life (QoL). The field of DSD is continuously developing. An update on the clinical evaluation of infants and older individuals with ambiguous genitalia including perceptions regarding male or female assignment is discussed. Topics include biochemical and genetic assessment, the risk of germ cell tumor development, approaches to psychosocial and psychosexual well-being and an update on support groups. Open and on-going communication with patients and parents must involve full disclosure, with the recognition that, while DSD conditions are life-long, enhancement of the best possible outcome improves QoL. The evolution of diagnosis and care continues, while it is still impossible to predict gender development in an individual case with certainty. Such decisions and decisions regarding surgery during infancy that alters external genital anatomy or removes germ cells continue to carry risk.

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Section: Advancing and Evidencing Psychosocial And Psychosexual Well-mentioning

confidence: 99%

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

et al. 2016

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“…'Coming to terms' may require sustained support for coping with losses and fears and for examining taken-forgranted beliefs about 'normal sexuality' and 'normal life' (Liao, 2003). Crissman et al (2011) interviewed 41 parents of children with mixed DSD diagnoses and identified a 'discordance between scientific and parental understandings of the determinants of "sex" and "gender"'. Continued exploration of these complex topics, if uncomfortable and uncertain, may require high level consultation skills and a robust therapeutic alliance.…”

Section: Engaging Parents In Dilemmatic Conversationsmentioning

confidence: 99%

A values-driven and evidence-based health care psychology for diverse sex development

Liao¹,

Simmonds²

2013

Psychology & Sexuality

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The integration of psychology into multidisciplinary care for people affected by 'disorders of sex development' is acknowledged in most recent care standard documents. However, psychological evidence that can inform service development is currently insubstantial for specific reasons, some of which are outlined in this article. We argue for psychological activities and their prioritisation to be equally driven by the professional values embedded in clinical psychology and to seek user input in key activities. These values include critical engagement with research literature, theoretically informed question and problem formulation, development of interventions to boost health and well-being, honouring of personal agency, equality and diversity, team development facilitation, psychological education and training for non-psychologists, audit and research that can benefit patients and contribution to social change. We outline target areas that reflect these values and, where possible, draw on empirical evidence developed in diverse sex development (DSD) and other clinical contexts to support our recommendations.

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“…Cinsiyeti ve cinsel kimliği belirleyecek, ancak çocuk üzerinde kalıcı değişikliklere neden olacak bu tür ameliyatlar için ailelerin onam vermesi, özellikle gelişmiş ülkelerde tartışma konusudur (14)(15)(16) . Günü-müzde, bu tür ameliyatlar için erken cerrahi yerine, çocuğun onam verebilecek yaşa kadar beklenmesini öneren görüşler giderek kabul görmektedir (17) .…”

Section: Cinsel Gelişim Sorunlarının Cerrahi Tedavisinde Etik Ve Yasaunclassified

Disorders of sexual development: Small patients, big decisions

Özbey¹

2016

TCCD

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ÖzTanım "Cinsiyet" çok yönlü bir tanımdır. Genetik yapı, iç ve dış cinsel organ yapısı ve psikososyal gelişim süreci ile belirlenen cinsiyeti (sex: biyolojik cinsiyet, gender: toplumsal/sosyal cinsiyet) yalnızca tek bir başlık altında incelemek yeterli değildir. Kişi-nin kendisini erkek ya da kadın olarak hissetmesi cinsel kimliği (gender identity), erkek ya da kadına özgü giysi, oyun, meslek tercihi kişinin cinsel rolü-nü (gender role/gender behavior), erkek ya da kadın olarak karşı cins tercihi ise kişinin cinsel tercihini (gender orientation) belirler. Cinsiyeti oluşturan bu üç özelliğin her birisi, oldukça karmaşık ve çok yön-lü (anatomik, psikolojik, sosyokültürel) faktörlerin rol oynadığı, kendi aralarında da etkileşim gösteren gelişim süreçleridir (1) .Cinsiyeti belirleyen başlıca faktörler: 1-genetik yapı özellikleri, 2-hormon ve reseptör fonksiyonları, 3-iç ve dış genital (cinsel organ) yapı özellikleri, ve 4-çevresel faktörlerdir. Dış genital yapının embriyolojik gelişiminin anlaşılması, cinsel gelişimde rol alan moleküler yolakların anlaşılması ile daha belirgin hâle gelmiştir . Genetik yapı özellikleri:Cinsiyetin belirlenmesindeki ilk aşama, 23,X kromozom yapısındaki bir ovumun, bir sperm (23,X ya da 23,Y kromozom yapısındaki) ile birleşmesidir. Bu birleşme sonucunda, erkeklerde 46,XY kromozom yapısı, kadınlarda ise 46,XX kromozom yapısı oluşur. Erkeklerde testisin oluşmasını sağlayan SRY geninin belirlenmesinden sonra, çeşitli gen ve transkripsiyon faktörlerinin de (DAX-1, SF-1, WT-1, SOX-9, DMRT1/DMRT2, SHH, ATF3) testis ya da over dokusunun oluşumunda rol aldığı belirlenmiştir (2) . Genom araştırmaları ile moleküler tanı yönünde çalışmalara ağırlık verilmektedir (3) . Hormon ve reseptör fonksiyonları:

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Children with disorders of sex development: A qualitative study of early parental experience

Cited by 132 publications

References 50 publications

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

A values-driven and evidence-based health care psychology for diverse sex development

Disorders of sexual development: Small patients, big decisions

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