The illness experience of adult persons with muscular dystrophy

Abstract

Purpose: The purpose of the present study is to describe the illness experience 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 interviews with 15 subjects (five for each type of muscular dystrophy; proximal muscular dystrophy, myotonic muscular dystrophy, myopathia distalis tarda hereditaria) were subjected to inductive content analysis. The interviews were about experiences of the first symptoms, learning of the diagnosis, life in general from then to the present, managing daily living and thoughts about the future.

Results: After a deductive validation procedure the results were presented as three core narratives', one for each type of muscular dystrophy. The illness experience was mainly similar irrespective of type of muscular dystrophy. Learning of the incurable, progressive, hereditary disease was traumatic and the subjects hoped the diagnosis was wrong. They felt uncertain about the future, and were sad and worried about the consequences of a hereditary disease for their children.

Conclusion: The results will enable rehabilitation staff to better understand the patient's need for psychosocial support.