PMID: 20126869Feb 4, 2010Paper

Congenital adrenal hyperplasia: a qualitative study on disease and treatment, doubts, anguishes and relationships (part I)

Arquivos brasileiros de endocrinologia e metabologia
Mariana Telles-SilveiraClaudio E Kater

Abstract

To understand the meanings/thoughts of a group of parents, patients and physicians regarding congenital adrenal hyperplasia (CAH), and to evaluate their anguishes, doubts and anxieties. We selected 21 subjects: 7 pediatric endocrinologists from five Brazilian Public Health System institutions, 9 parents and 6 patients with CAH, according to the qualitative research model. Three of the studied categories are presented: 'disease and treatment', 'doubts and anguishes' and 'relationships.' Parents' main anguishes relate to the situation of an unnamed sex at birth. A sense of loneliness when dealing with the disease is the major anguish among patients, whereas physicians show hopelessness with the passivity parents and patients. The apparent submissiveness of patients/parents during consultations must be evaluated cautiously. University Hospitals outpatient clinic dynamics have a direct effect on this behavior: physicians do not talk openly with parents who in turn do not talk with their children, whereas patients chose to protect their parents from additional suffering. Thus, some miscommunication is noticeable among these subjects. These observations suggest that a special mindful measure should be built for these patients.

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Citations

Jan 29, 2019·Frontiers in Pediatrics·Tatiana Prade HemesathEduardo Corrêa Costa
Sep 4, 2015·Archives of Endocrinology and Metabolism·Mariana Telles-SilveiraClaudio E Kater
Feb 4, 2010·Arquivos brasileiros de endocrinologia e metabologia·Mariana Telles-SilveiraClaudio E Kater
Jun 9, 2016·Archives of Sexual Behavior·Mariana Telles SilveiraClaudio E Kater
Feb 9, 2012·Journal of Pediatric Endocrinology & Metabolism : JPEM·Bhanu Kiran Bhakhri, Vandana Jain

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