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Arquivos Brasileiros de Endocrinologia & Metabologia

On-line version ISSN 1677-9487

Abstract

TELLES-SILVEIRA, Mariana; TONETTO-FERNANDES, Vânia F.; SCHILLER, Paulo  and  KATER, Claudio E.. Congenital adrenal hyperplasia: a qualitative study on sex definition and redesignation dilation surgery and psychological support (part II). Arq Bras Endocrinol Metab [online]. 2009, vol.53, n.9, pp.1125-1136. ISSN 1677-9487.  https://doi.org/10.1590/S0004-27302009000900009.

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.

Keywords : Congenital adrenal hyperplasia; anomalies of sex differentiation; sex definition; sex re-designation; reconstructive surgery; psychology; psychoanalysis.

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