Experience journals: using computers to share personal stories about illness and medical intervention

Medical advances make it increasingly possible for children with previously fatal illness to live and thrive. However, a significant number still experience repeated operations, hospitalization, and invasive procedures, or need special care at home. Many do so with little or no intervention to help them and their families cope with the emotional stresses involved. One significant source of emotional and cognitive support is the community of patients and families who have experienced similar medical procedures. However, in spite of a general willingness to share experiences, communication among patients and families is usually limited. To facilitate this process, we are investigating the use of computer technology to record, organize, and display stories about the experiences of families with children who have been treated for cardiac and neurological illness at Children's Hospital, Boston. We are asking children and their families to record text and multimedia vignettes describing some aspect of their illness, coping strategies, or care that might be useful to others. These contributions will be available for browsing at a secure World-Wide-Web site. However, economic realities preclude reliance on a professional site administrator to organize and monitor what we hope to be a rapidly growing Web site with a large, distributed authorship. The need to make the Web site fully accessible to users who have varying familiarity with computers and Web browsing imposes further constraints. We are therefore developing software to automate the process of managing and organizing an easily accessed Web site that contains an "Experience Journal." We describe this software, the rationale for its development, and our plans for its use in the coming year.