We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- 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
- 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.
- Subjects
EXPERIMENTAL design; RESEARCH evaluation; RESEARCH methodology; INTERVIEWING; PSYCHOMETRICS; DEMENTIA; DESCRIPTIVE statistics; JUDGMENT sampling; THEMATIC analysis
- Publication
Palliative Medicine, 2021, Vol 35, Issue 5, p962
- ISSN
0269-2163
- Publication type
Article
- DOI
10.1177/02692163211004403