Psychological Aspects of the Treatment of Patients with Disorders of Sex Development

Sandberg, David E.; Gardner, Melissa; Cohen‐Kettenis, Peggy T.

doi:10.1055/s-0032-1324729

Cited by 80 publications

(24 citation statements)

References 70 publications

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“…Patient education in a developmentally sensitive manner is essential to facilitate an optimal medical and psychological follow-up [93]. Although adolescents may be reticent regarding their contact with patient support organizations, the potential benefits of speaking with others who have shared experiences should be reintroduced if initially rejected [16].…”

Section: Information and Decision Making Regarding Male Or Female Assmentioning

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: Information and Decision Making Regarding Male Or Female Assmentioning

confidence: 99%

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

et al. 2016

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“…. Nurses need to assist patients to overcome the effects of DSD and improve their quality of life (Sandberg, Asciutto, & Haddad, 2011;Sandberg, Gardner, & Cohen-Kettenis, 2012;Zabidi, Zainuddin, & Schmidt, 2016). Nurses may utilize the bio-psycho-social-spiritual model of care to provide holistic care to patients with DSD to help them deal with the physical, psychological, social, and spiritual stressors associated with their condition (Dossey & Keegan, 2015;Rothkopf & John, 2014).…”

Section: Coping Strategiesmentioning

confidence: 99%

Experiences of people living with disorders of sex development and sex reassignment: Meta‐ethnography of qualitative studies

Sani

Soh

Ismail

et al. 2018

Journal of Advanced Nursing

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“…However, one study reported that 10 out of 217 females, diagnosed with CAH and reared as women, showed some form of gender dissonance or identity confusion. [45] The difficulty in assigning gender particularly arises if the genitalia of the new-born patient is highly virilized. A literature review assessed studies on gender dysphoria and gender confusion in patients with 46 XX CAH reared as females.…”

Section: Introductionmentioning

confidence: 99%

Gender of rearing and psychosocial aspect in 46 XX congenital adrenal hyperplasia

Gangaher

Jyotsna

Chauhan

et al. 2016

Indian J Endocr Metab

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Background:In congenital adrenal hyperplasia (CAH) with ambiguous genitalia, assigning gender of rearing can be complex, especially If genitalia is highly virilized. Apart from karyotype, prenatal androgen exposure, patient's gender orientation, sociocultural, and parental influences play a role. The aim of this study was to assess gender dysphoria and psychosocial issues in patients of CAH raised as males and females.Materials and Methods:This is a cross-sectional study that includes patients (old and new) with CAH who were treated by us in the last 6 months. A semi-structured interview proforma was used to elicit history and psychosocial background of the patients. The clinical and biochemical details were noted. For psychological analysis, patients were screened for gender dysphoria using Parent Report Gender Identity Questionnaire for children <12 years and Gender Identity/Gender Dysphoria Questionnaire for Adolescents and Adults.Results:We analyzed 22 46 XX CAH patients among which, 3 were reared as males and 19 as females. Among the 19 patients reared as females, 17 patients showed no gender dysphoria. Two patients revealed gender dysphoria as indicated by their marginally low scores on the gender dysphoria assessment. However, in view of current literature and the age groups of the patients, behavior of the 6-year-old patient can be best understood as being tomboyish. Gender dysphoria in the 22-year-old can be explained by the dominance of psychosocial factors and not hormones alone. Among the three patients reared as males, two prepubertal were satisfied with their male gender identity. The third patient, aged 32 years, had gender dysphoria when reared as a male that resolved when gender was reassigned as female and feminizing surgery was done.Conclusion:Gender assignment in 46 XX CAH is guided by factors such as degree of virilization of genitalia, gender orientation, patient involvement, sociocultural, and parental influences.

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Psychological Aspects of the Treatment of Patients with Disorders of Sex Development

Cited by 80 publications

References 70 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

Experiences of people living with disorders of sex development and sex reassignment: Meta‐ethnography of qualitative studies

Gender of rearing and psychosocial aspect in 46 XX congenital adrenal hyperplasia

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