Congenital adrenal hyperplasia: a qualitative study on sex definition and redesignation dilation surgery and psychological support (part II)

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. We selected 21 subjects: 7 pediatric endocrinologists fro...

Full description

Saved in:
Bibliographic Details
Published in:Arquivos brasileiros de endocrinologia e metabologia 2009-12, Vol.53 (9), p.1125-1136
Main Authors: Telles-Silveira, Mariana, Tonetto-Fernandes, Vânia F, Schiller, Paulo, Kater, Claudio E
Format: Article
Language:Portuguese
Subjects:
Adolescent
Adrenal Hyperplasia, Congenital - psychology
Adrenal Hyperplasia, Congenital - surgery
Adult
Child
Child, Preschool
Endocrinology
Female
Gender Identity
Humans
Infant
Male
Parents - psychology
Psychotherapy
Qualitative Research
Reconstructive Surgical Procedures - psychology
Sex Characteristics
Social Support
Young Adult
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary: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. 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'. 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. 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.
ISSN:1677-9487
DOI:10.1590/S0004-27302009000900009