[Congenital adrenal hyperplasia: a qualitative study on sex definition and redesignation dilation surgery and psychological support (part II)].
OBJECTIVE
To identify relevant questions related to sex definition and re-designation and reconstructive surgery in patients with congenital adrenal hyperplasia (CAH), and to understand the role of the psychologist in providing care for these patients.


METHODS
We selected 21 subjects: 7 pediatric endocrinologists from 5 Brazilian Public Health System institutions, 9 parents and 6 patients with CAH, according to a qualitative research model. In this paper, 3 of the studied categories are analyzed: 'sex definition and re-designation', 'reconstructive surgery/vaginal dilation', and 'psychology'.


RESULTS
Parents' main anguish relates to the situation of an unnamed sex at birth, whereas sex re-designation was distressful to physicians. A sense of loneliness when dealing with the disease and treatment was a common anguish among patients; dilation procedures were the major complaint. In general, physicians recommend that genital reconstructive surgery be performed early on to avoid future trauma.


CONCLUSIONS
In such a complex scenario, it is remarkable that not all the reference service staff have a psychologist on duty. Difficulties to deal with questions involving sexuality were evident and dilation procedures are an additional source of trauma for these patients.
Telles-Silveira
Mariana
M
Departamento de Medicina, Universidade Federal de São Paulo, São Paulo, SP, Brasil.
Tonetto-Fernandes
Vânia F
VF
Schiller
Paulo
P
Kater
Claudio E
CE
D000293:Adolescent; D000312:Adrenal Hyperplasia, Congenital / Q000523:psychology* / Q000601:surgery; D000328:Adult; D002648:Child; D002675:Child, Preschool; D004704:Endocrinology; D005260:Female; D005783:Gender Identity; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology; D011613:Psychotherapy; D036301:Qualitative Research; D019651:Plastic Surgery Procedures / Q000523:psychology*; D012727:Sex Characteristics; D012944:Social Support; D055815:Young Adult