An Investigation of Perspectives of Respite Admission Among People Living With Amyotrophic Lateral Sclerosis and the Hospitals That Support Them. (July 2017)

• Record Type: Journal Article
• Authors: Nakai, Michiko; Narita, Yugo; Tomimoto, Hidekazu
• Is Part Of: Journal of primary care & community health. Volume 8:Number 3(2017:Jul.)
• Page Start: 163
• Page End: 168
• Publication Date: 2017-07
• Subjects: amyotrophic lateral sclerosis (ALS) -- respite admission -- family caregiver -- ongoing home care -- service accessibility; Primary health care -- Periodicals; Primary health care -- United States -- Periodicals; Community health services -- Periodicals; Community health services -- United States -- Periodicals; 362.12
• DOI: 10.1177/2150131917696940
• Languages: English
• ISSNs: 2150-1319

Abstract

Background: Amyotrophic lateral sclerosis is a progressive disease with rapid degeneration. Respite care is an essential service for improving the well-being of both patients with this disease and their family caregivers, but accessibility of respite services is limited. This study investigates perspectives on respite admission among people living with amyotrophic lateral sclerosis and the hospitals supporting them.Method: We conducted semistructured interviews among 3 patients with amyotrophic lateral sclerosis and 12 family members, exploring demographic information and their awareness and experience of respite admission. We also interviewed 16 representatives from hospitals about awareness of and preparation for respite admission for patients with this disease, the role of regional networks for intractable diseases, and knowledge about communication support schemes.Results: We found significant differences in the revised Amyotrophic Lateral Sclerosis Functional Rating Scale between patients who had and had not received respite admission. Qualitative analysis of the data indicated that respite admission was a contributory factor in continuing and stabilizing home care. Limited provision of social services and hospital care quality were barriers to respite admission.Conclusion: Respite admission was essential to continued home care for patients with amyotrophic lateral sclerosis. Severe-stage patients were eligible for respite admission. Its accessibility, however, was limited, especially for patients living in rural areas. Supporting hospitals had limited capacity to respond to patients' needs. Individualized care and communication were internal barriers to respite admission.