Addressing CLAN’s 2nd Pillar: Report following CLAN Club meetings in Indonesian and Vietnam 2012.

Irene Mitchelhill, RN, RMN, BHSc Nursing, MN Hons. Clinical Nurse Consultant, Sydney Children’s Hospital, Randwick NSW Australia,

In 2012 CLAN was able to meet the educational requirements of families with CAH in both Vietnam and Indonesia, by providing an educational resource in DVD format. Health education is an integral part of the health professional role, and critical to the needs of families with chronic conditions. Patient knowledge, understanding and comprehension, is essential in achieving positive outcomes for the child and family.

With the increased incidence of CAH in Vietnam, the remote location of many families in rural areas, well away from medical expertise in the main cities, improving access to educational resources was considered a priority.

In November 2011, a translated version of an educational resource developed for families with CAH in Australia in DVD format, was launched to health professionals, at the APPES CME meeting in Hanoi, Vietnam. This comprehensive educational program titled “Psychosocial Education Program (PEP) for Families with CAH” was launched to families at the CLAN CAH Club meetings in Hanoi in July, 2012 and in Jakarta, Indonesia, in November, 2012. Included with the PEP, is the CAH Knowledge Assessment Questionnaire (CAHKAQ), which provides a means of evaluation of patient/family knowledge and the PEP. Each family attending the club meetings, were provided with a copy of the DVD for their personal use, with duplication of the DVD gratefully sponsored by CLAN. In addition, medical professionals have been able to also use the DVD for medical and nursing training of their staff.

The opportunity to translate this educational resource into other languages came about through the voluntary efforts of four doctors, working in Vietnam and Indonesia, who undertook the task of translating the verbal transcripts and powerpoint slides for the DVD. A health services interpreter then narrated the transcript, with completion of the DVD, edited by a media production company, in line with the original filmed speaker presentations.

The program includes the following five chapters, which can be individually selected from the main menu: What is CAH, Adolescent and Adult Issues, Psychological Issues, Sick Day Management, Emergency Injection of Hydrocortisone. Each presentation has been carefully developed to address the essential information, which is required to understand and manage CAH.

This innovative move to providing education using multimedia methods, has the ability to revolutionise the education process. It is cost effective, can be revised by individuals as required, and be updated when needed. Such learning methods, which are patient specific, structured and culturally sensitive are appealing to all, but particularly to those with both literacy and language issues. Audio & video formats (CD or DVD) which provide descriptive diagrams, illustrations and demonstrations, appeal to all learning situations, but should also be combined with written information to provide a comprehensive approach. Production of written support materials to the DVD is in progress, with consideration of minimizing cost and ease of reproducibility.

I would like to sincerely thank CLAN for the opportunity to be involved in such a fantastic project, their sponsorship of the DVD production & duplication, and for being able to share my expertise in providing education and support for the families & health professionals of Vietnam and Indonesia. The experiences have been amazing and humbling and set me on a “journey” that I was looking for.