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Publication type: Article in scientific journal
Type of review: Peer review (publication)
Title: Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study
Authors: Hodiamont, Farina
Hock, Helena
Ellis-Smith, Clare
Evans, Catherine
de Wolf-Linder, Susanne
Jünger, Saskia
Diehl-Schmid, Janine
Burner-Fritsch, Isabel
Bausewein, Claudia
et. al: No
DOI: 10.1177/02692163211004403
Published in: Palliative Medicine
Volume(Issue): 35
Issue: 5
Pages: 962
Pages to: 971
Issue Date: 16-Apr-2021
Publisher / Ed. Institution: Sage
ISSN: 0269-2163
Language: English
Subjects: Palliative care; Organizational culture; Outcome measurement; Qualitative research; Survey methodology
Subject (DDC): 610.73: Nursing
616.8: Neurology, diseases of nervous system
Abstract: Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system. Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing. Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau’s model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response. Participants: Purposive sample with professionals (n = 29) and family carers (n = 6) of people with advanced dementia in seven nursing homes and person’s own home care in four interview rounds (n = 11; 10; 7; 7). Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of “being affected by” used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment. Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.
Fulltext version: Published version
License (according to publishing contract): CC BY-NC 4.0: Attribution - Non commercial 4.0 International
Departement: Health Professions
Organisational Unit: Institute of Nursing (IPF)
Published as part of the ZHAW project: Implementation von Patienten-zentrierten Outcome Messinstrumenten (PROMs) im Palliative Zentrum am Kantonsspital Winterthur
Appears in collections:Publikationen Gesundheit

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