Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study
| Autor: | I Burner-Fritsch, Saskia Jünger, Janine Diehl-Schmid, Helena Hock, Farina Hodiamont, Clare Ellis-Smith, Susanne de Wolf-Linder, Catherine J Evans, Claudia Bausewein |
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| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
Gerontology
Palliative care Psychometrics Survey methodology Organizational culture Outcome measurement 616.8: Neurologie und Krankheiten des Nervensystems Disease 03 medical and health sciences Cognition 0302 clinical medicine Surveys and Questionnaires Qualitative research Content validity medicine Humans Dementia 030212 general & internal medicine Cognitive interview business.industry Original Articles General Medicine medicine.disease 610.73: Pflege Anesthesiology and Pain Medicine 030220 oncology & carcinogenesis Scale (social sciences) business |
| Zdroj: | Palliative Medicine |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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