The illness experience of adult persons with muscular dystrophy

Purpose: The purpose of the present study is to describe the illness experi ence of persons with muscular dystrophy, their experience of activities of daily living, and whether there are any differences in how different types of muscular dystrophy affect people's lives. Method: Fifty-eight subjects were interviewed on two occasions. The intervi ews with 15 subjects (five for each type of muscular dystrophy; proximal mu scular dystrophy, myotonic muscular dystrophy, myopathia distalis tarda her editaria) were subjected to inductive content analysis. The interviews were about experiences of the first symptoms, learning of the diagnosis, life i n general from then to the present, managing daily living and thoughts abou t the future. Results: After a deductive validation procedure the results were presented as three 'core narratives', one for each type of muscular dystrophy. The il lness experience was mainly similar irrespective of type of muscular dystro phy. Learning of the incurable, progressive, hereditary disease was traumat ic and the subjects hoped the diagnosis was wrong. They felt uncertain abou t the future, and were sad and worried about the consequences of a heredita ry disease for their children. Conclusion: The results will enable rehabilitation staff to better understa nd the patient's need for psychosocial support.