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


METHODS
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.'


RESULTS
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.


CONCLUSIONS
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.
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*; D000328:Adult; D001007:Anxiety / Q000523:psychology; D003142:Communication; D004704:Endocrinology; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010817:Physician-Patient Relations; D036301:Qualitative Research; D012727:Sex Characteristics; D013315:Stress, Psychological / Q000523:psychology; D055815:Young Adult