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

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1
Department of Psychiatry, Children's Hospital, Boston, MA 02115, USA. demaso@a1tch.harvard.edu

Abstract

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 families facing pediatric illnesses.

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