[The meeting between patients and professionals who treat them. Qualitative interview of patients with amyotrophic lateral sclerosis and their closest relatives].

The object of the present investigation was to know more about the experiences and the demands of patients with amyotrophic lateral sclerosis (ALS) and their closest relatives, and to relate these experiences and demands to the practice of the Danish health care system. Twelve patients and 11 relatives from two neurological wards were interviewed in the spring of 1993. The investigation shows that to patients and relatives the course of the illness and disease is a continuous one. Their experience of quality in treatment and care depends on whether the professional staff have knowledge of and see their own role in the entire course of the illness and disease. The conclusion of this investigation is that it is necessary to disseminate knowledge of amyotrophic lateral sclerosis and to strengthen a centralised professional competence in the treatment and support of patients with amyotrophic lateral sclerosis and their closest relatives.