Welcome

Welcome to the CAH Family Workshop website. This website contains a Psychosocial Education Program developed for families with a diagnosis of Congenital Adrenal Hyperplasia (CAH). This program has been developed to provide families with information to assist in understanding and managing the condition. The program is provided in a DVD format.

The site contains English, Vietnamese and Indonesian translations of the program, and includes a program evaluation, and relevant resources. The CAH Knowledge Assessment Questionnaire (CAHKAQ) is available to test your knowledge.

The program is presented in 5 chapters. Each chapter is 15-20 minutes; and the total program takes approximately 1½ hours to play. You may choose to view any one of the 5 chapters individually by clicking on the chapter from the main menu.

If you have any questions about the information in this program or on this website, please discuss this with your health professional.

The content is family focused, although it is also relevant to health professionals, medical and nursing students. The website contains links to family support groups and professional organisations.

If your CAH Community would like to have access to this comprehensive and validated Psychosocial Education Program (PEP), which has developed specifically for families with Congenital Adrenal Hyperplasia, contact details are available below. The PEP has been designed to be able to be facilitated by one health professional, and covers all aspects of care. The original transcripts of the PEP are available for translation. Assistance with the evaluation process is also available with this comprehensive PEP, which includes pre and post assessment of knowledge, evaluation of content and process, and the possible participation by Skype in offer of support.

This website will contains other resources such as links to family support groups, clinical management guidelines and management plans which are for reference use only. These are guides only, and should be discussed with your health professional.

For further information regarding the PEP, or the use of any part of this program, the CAHKAQ or the Evaluations for research purposes, requires permission from the author. Please contact email: irene.mitchelhill@health.nsw.gov.au

 

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