H58 Measuring the quality of care in nursing home residents with early-onset neurodegenerative diseases: a scoping review. (12th September 2022)

• Record Type: Journal Article
• Authors: Heffels, Joyce; Everink, Irma; Oosterloo, Mayke; Roos, Raymund; Schols, Jos
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 93(2022)Supplement 1
• Page Start: A83
• Page End: A83
• Publication Date: 2022-09-12
• Subjects: quality of care -- nursing home -- early-onset neurodegenerative diseases -- resident -- (in)formal caregiver; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2022-ehdn.222
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: Nursing home residents with early-onset neurodegenerative diseases, such as Huntington's Disease, have different care needs than 'regular' nursing home residents. In the Netherlands, these residents are often admitted to specialized nursing home wards where the care is tailored to these needs. Until now, little is known about their experienced quality of care. Aims: To explore which instruments are available for measuring quality of care offered to nursing home residents with early-onset neurodegenerative diseases, from the perspective of the residents and their (in)formal caregivers themselves. Methods: In a literature search studies were included if they focused on instruments and/or strategies to measure quality of care in nursing home residents with early-onset neurodegenerative diseases from the perspective of either the resident or (in)formal caregiver. Results: Five studies were included in this review; one study used an actual instrument to assess quality of care, the other four studies used topic lists and/or themes to measure quality of care. All five studies used different target groups. In total 60 items were found which were relevant to measure quality of care. These items were coded into eight overarching domains: 'emotional support', 'physical support', 'social support', 'care', 'care content', 'expertise', 'communication' and 'organization of care'. Conclusions: Currently, there are no methods for assessing quality of care specifically focusing on nursing home residents with early-onset neurodegenerative diseases. The items retrieved in this review give an overview of important topics and can be used when developing an instrument for assessing quality of care in this target population.