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Hodiamont, Farina ORCID logoORCID: https://orcid.org/0000-0001-7351-7092; Hock, Helena; Ellis-Smith, Clare; Evans, Catherine; Wolf-Linder, Susanne de; Jünger, Saskia; Diehl-Schmid, Janine; Burner-Fritsch, Isabel und Bausewein, Claudia ORCID logoORCID: https://orcid.org/0000-0002-0958-3041 (2021): Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia. A cognitive interview study. In: Palliative medicine, Bd. 35, Nr. 5: S. 962-971 [PDF, 652kB]

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.

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