Parents of JM Children Needed for Research Study

The Psychosocial Impact of Juvenile Dermatomyositis on Pediatric Patients and Parents

Researchers from Palo Alto University are seeking volunteers for a study designed to increase the understanding of the impact of JDM on parents of children with JDM. The project is being led by Samantha Kountz-Edwards, a doctoral student who lost a dear friend to JM.

Participation in the study will require approximately one to two hours of your time. The identity of both patients and family members will remain confidential. It is hoped that the results of this study will lead to a better understanding of family functioning, the child’s psychosocial functioning, and the parents’ psychological health as it relates to caring for a child with JDM. The results of the study will be presented at the American Psychological Association conference later this year.

Who can participate?

Parents of children aged 1 month-18 years old diagnosed with JDM.

What to expect:

  1. If you are interested in participating in this study, please send an email to or call 408-753-6096. A researcher will contact you via telephone or e-mail to discuss the study further.
  2. If you choose to participate, two copies of the informed consent and standardized measures will be mailed to you. These measures include questions regarding health-related quality of life, adaptive behavior, family functioning and psychosocial factors. You will be asked to complete a demographic questionnaire about the child, which will include information such as age at diagnosis, severity of illness, and how long the child has had JDM. It will take approximately 50 minutes to complete all of the measures. Once all of the measures are completed, a researcher will contact you to conduct a 30-45 minute interview (via telephone or Skype). The interview will include questions regarding your experience of caring for a child diagnosed with JDM. If you consent to it, the interview will be audio taped.
  3. A pre-stamped envelope will be provided so that you are easily able to return the materials.  

For more information, send an email to or call 408-753-6096. Participants must register by March 15, 2013.