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


METHODS
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.
DeMaso
D R
DR
Department of Psychiatry, Children's Hospital, Boston, MA 02115, USA. demaso@a1tch.harvard.edu
Gonzalez-Heydrich
J
J
Erickson
J D
JD
Grimes
V P
VP
Strohecker
C
C
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease; D005240:Feasibility Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009034:Mother-Child Relations; D009035:Mothers / Q000193:education / Q000523:psychology*; D012944:Social Support; D012984:Software; D013813:Therapy, Computer-Assisted / Q000458:organization & administration*