Abstract
The purpose of this study was to clarify, with reference to Grounded Theory, the events and thoughts that affect adolescent Duchenne muscular dystrophy patientsliving at home in going outside, and the relationship between these events and thoughts.
Methods to support them in going out were then investigated. Participatory observationsand semi-structured interviews were conducted of three adolescents. The resultsindicated a process for regaining a real desire to go out, which started with the adolescents facing the reality of their poor prognosis. In this process, reacquiring the ability to go out from the desire to go out was achieved after they reached a state in which they recovered their motivation by accepting their disease. A sense of fulfillment was also obtained from their experience of going out when they actually did it.
However, by gradually accepting their disease, they adopted an attitude of living within their absolutely poor prognosis, and this affected all their behavior in going out. These results suggest the need to create opportunities for adolescent Duchenne muscular dystrophy patients to accept their disease and to go out, and to provide them with support for problems encountered in actually going out
