A new CAH resource for Indonesia!

A new CAH resource for Indonesia!

A report by Melissa Morales, CLAN Intern, 2016

In a recent interview with Dr. Agustini Utari, a pediatric endocrinologist in Indonesia, she shared with me the success she and her partners have had with a new educational booklet for CAH patients and families. This booklet is being used in a “simple education approach” for the small groups that have been meeting in central Java.  “This group setting is different from the Jakarta setting; most patients are from a low education and low socioeconomic background. We tried to make a simple booklet with more pictures to make it easier to understand,” said Dr. Agustini. 

Starting in July of this year, the support group for CAH families in Central Java has started to meet in smaller, more personal groups of four to five families. In the larger groups, families were only able to receive brief education about their child’s condition and circumstances. Within this smaller group that has been meeting, families have had a better opportunity to share their experiences with other families and go over the new booklet together. Dr Agustini shared that before, many families felt as though they were experiencing the hardships and milestones of raising a child with CAH alone, but these small groups have given them the reassurance that they have the support of their local CAH community. As many families are from lower socioeconomic backgrounds, many parents are illiterate so this new booklet including pictures and easy to understand explanations for parents and children makes it easier comprehend the information being provided.

This booklet is now being shared with parents to better understand CAH. Dr. Agustini and her team are developing a one-year plan for small group meetings and other activities so families can provide support for each other and learn more about the different milestones of living and thriving with CAH.