Objective: To assess the understanding of congenital adrenal hyperplasia (CAH) among families of Caucasian White (W) and Asian (A) with CAH, and also to evaluate the need for interpreters for Asian families attending the North West Regional CAH clinic.
Design: A parent directed questionnaire was administered by two interviewers, one of whom spoke Urdu,Punjabi and Bengali to 18 A families ( M = 8 F=18) and 39 W families (M=20 F=22) with children with CAH, in total 68 children (1-19yrs)
Understanding: 12/18 (66%) A families and 37/39 (94%) W families were confident with their understanding of CAH. 14/18 (77%) A families were confident about the emergency management compared with 33/39 (84%) W families.
Language: In A families the first language was Punjabi 13/18 (72%) or Urdu 5/18 (27%). One parent spoke English in 8/18 (44%). However in 10/18 (55%) A families neither parent had any command of English at all.
Interpreters: 7/18 (38%) A families used their child or a relative as an interpreter and only 3/18 (16%) had used a hospital interpreter. 14/18 (77%) of A families expressed a wish for hospital interpreters to be routinely available.
Information: 7/18 (38%) A families had an information leaflet in their first language compared with 31/39 (79%) W families.
Comments: A mothers expressed severe anxieties about virilisation in their female infant and were reluctant to ask questions. Also A mothers expressed embarrassment in using their children or relatives as interpreters. All 39 W families felt able to ask any questions in the CAH clinic.
Conclusion: A families were less likely to have information leaflets in their first language. It is unlikely that A families have used a hospital interpreter in the CAH clinic, yet the significant majority wish this service to be routinely available. The use of hospital interpreters, educated about CAH, may overcome some linguistic barriers in the clinic and optimise the medical care and clinical outcomes for children with CAH
22 - 24 Mar 2004
British Endocrine Societies