Illness experience in a chronic disease--ALS.

The representative case study method was used in a 1-year longitudinal study of two individuals with a chronic, degenerative, terminal neurological disease, ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease). Participants were interviewed in their homes every 2 months to examine the effects of the illness on relationships with family, friends and the health care system. Changing ideas regarding causation, the use and evaluation of various therapies, use of illness role models, spiritual changes and symptom experience were also explored. Kleinman's concept of explanatory models guides the analysis of the data, although we argue for a greater emphasis on evaluation of therapies within this model.