Androgen insensitivity syndrome (AIS): emotional reactions of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis.
Horm Res
; 53(1): 9-15, 2000.
Article
en En
| MEDLINE
| ID: mdl-10965214
ABSTRACT
The emotional reactions of parents and adult patients on disclosure of the clinical diagnosis of androgen insensitivity syndrome (AIS) and its later confirmation by gene mutation analysis were assessed. A semistructured interview and three questionnaires were used. Parents came from 18 different families with a total of 20 children (15 complete AIS, 5 partial AIS), 19 raised as girls, 1 as a boy. Ten adult women with complete AIS came from six families. The short-term reaction upon the clinical diagnosis was in the majority of both parents and adult patients associated with shock, grief, anger, and shame and in the mothers and adult patients with guilt. Emotional reactions were more long-lasting in mothers and adult patients than in fathers. The confirmation by DNA analysis did not alter the actual feelings of both parents. Adolescents with AIS should be informed completely - but in a step-by-step way - about their condition, since adult patients indicated that they had suffered from being not at all or misinformed about AIS in their adolescence.
Buscar en Google
Banco de datos:
MEDLINE
Asunto principal:
Síndrome de Resistencia Androgénica
/
Receptores Androgénicos
/
Mutación
Tipo de estudio:
Diagnostic_studies
/
Qualitative_research
Límite:
Adult
/
Child
/
Female
/
Humans
/
Male
País/Región como asunto:
Europa
Idioma:
En
Revista:
Horm Res
Año:
2000
Tipo del documento:
Article
País de afiliación:
Países Bajos