Congenital adrenal hyperplasia: as viewed by parents of affected children in India--a pilot study.
A spectrum of myths and misconceptions about congenital adrenal hyperplasia (CAH) is prevalent among the parents of affected children in India. The perceptions of parents may affect several aspects of these children's management, and to explore these perceptions we carried out a cross-sectional questionnaire-based descriptive study during May 2010. Twenty-eight individuals (17 males and 11 females), parents of 22 affected children aged < 5 years, completed the questionnaire. Their responses showed the prevalence among the parents of misconceptions about CAH. These misconceptions were resulting in potentially harmful practices, and in addition there was immense societal pressure on the families as a result of ignorance and myths about the disorder. There is a need for regular CAH education and interaction programs to provide an acceptable platform for the parents and patients, where their concerns can be expressed and shared and their requirements addressed appropriately by a multidisciplinary team.
Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India. drbhanu04@yahoo.co.in
Bhanu Kiran
BK
Bhakhri
Vandana
V
Jain
D000312:Adrenal Hyperplasia, Congenital / Q000208:ethnology / Q000523:psychology* / Q000628:therapy*; D000328:Adult; D001294:Attitude to Health; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006266:Health Education / Q000706:statistics & numerical data; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007194:India / Q000453:epidemiology; D008297:Male; D010290:Parents / Q000523:psychology*; D010865:Pilot Projects; D015995:Prevalence; D012945:Social Values; D011795:Surveys and Questionnaires