The experience journal: A computer-based intervention for families facing congenital heart disease

David Ray DeMaso, Joseph Gonzalez-Heydrich, Julie Dahlmeier Erickson, Vellisse Pagan Grimes, Carol Strohecker

Research output: Contribution to journalArticlepeer-review

37 Scopus citations


Objective: To test the feasibility and safety of a computer-based application designed to facilitate the healthy coping of children and their families who must contend with significant congenital heart disease (CHD). The application, called the Experience Journal (EJ), is a psychoeducational intervention based on a narrative model involving the sharing of personal stories about an illness. Method: Testing was conducted in 2 phases In phase 1, 9 parents of children with CHD and 1 adult with CHD were asked to use the EJ. After utilization, semistructured interviews assessed EJ usability and safety in phase 2, 40 mothers of children with CHD used the EJ during a hospitalization. Assessment of feasibility and safety was measured through the use of semistructured interviews prior to EJ utilization and 2 to 4 weeks after hospital discharge. Results: Results revealed that the EJ was safe and useful for decreasing social isolation, increasing understanding of familial feelings about cardiac illness, and fostering positive reactions in mothers. Conclusions: Computer-based interventions that present psychoeducational and medical information closely connected to 'one's own story' may open up new possibilities for brailles facing pediatric illnesses.

Original languageEnglish (US)
Pages (from-to)727-734
Number of pages8
JournalJournal of the American Academy of Child and Adolescent Psychiatry
Issue number6
StatePublished - 2000

Bibliographical note

Funding Information:
This work is supported by grants from Fleet National Bank, Trustee of The Deborah Munroe Noonan Memorial Fund, and by Mitsubishi Electric Research Laboratory Inc. The authors thank Edith Ackermann, Dennis Bromley, Sarah Gibson, Joe Marks, Chia Shen, Diane Pickles, Margaret Wigglesworth, and Beth Donegan as well as all of the families who contributed to the Experience Journal.


  • Computer
  • Heart disease
  • Pediatric
  • Prevention
  • Safety


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