Patients' perspectives of the role of care providers in amyotrophic lateral sclerosis
A. E. Beisecker, A. K. Cobb and D. K. Ziegler
Department of Allied Health Sciences, University of Kansas Medical Center, Kansas City 66103.
Interviews with 41 patients with amyotrophic lateral sclerosis regarding
their perspectives of the roles of doctor, nurse, and allied health
personnel showed that emotional support, information, and access to
assistive devices were the primary expectations that they held for each of
these professional roles. In addition, physicians were expected to evaluate
the progress of the disease, help with immediate problems, and continue
research to find a cure. Patients wanted to see a physician at each clinic
visit. In being given the diagnosis of amyotrophic lateral sclerosis,
patients expected the physician to be straightforward, honest but not
premature, sensitive to patients' readiness for information, and to convey
some degree of hope. Patients were accurate in their knowledge of the
disease, but came to the clinic expecting help in managing the illness.
