Interviews with Patients, Family, and Caregivers in Amyotrophic Lateral Sclerosis: Comparing Needs

Abstract

The emphasis of palliative care has been to support both patients and their family caregivers, and to maintain the caregivers’ involvement through the patient's illness and death. This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a similar view the disease, and experience the problems and needs in the same way as professionals. By interviewing ALS patients and close relatives of ALS patients, and by comparing the quotes from the interviews, some differences between these two groups are revealed. The results of the present study show that ALS patients and close relatives of ALS patients differ in at least five respects: they perceive their needs, and they view, judge, and evaluate the disease, as well as the the process of the disease, in different ways. Furthermore, the study suggests that the patients and their close relatives should be viewed as individuals with their own preferences. Moreover, close relatives need someone in whom to confide, and caregivers have specific needs for support and information.