Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study

Hodiamont, Farina; Hock, Helena; Ellis-Smith, Clare; Evans, Catherine; de Wolf-Linder, Susanne; Jünger, Saskia; Diehl-Schmid, Janine; Burner-Fritsch, Isabel; Bausewein, Claudia

doi:10.1177/02692163211004403

Please use this identifier to cite or link to this item: https://doi.org/10.21256/zhaw-22372

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 10.21256/zhaw-22372
Published in:	Palliative Medicine
Volume(Issue):	35
Issue:	5
Page(s):	962
Pages to:	971
Issue Date:	16-Apr-2021
Publisher / Ed. Institution:	Sage
ISSN:	0269-2163 1477-030X
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.
URI:	https://digitalcollection.zhaw.ch/handle/11475/22372
Fulltext version:	Published version
License (according to publishing contract):	CC BY-NC 4.0: Attribution - Non commercial 4.0 International
Departement:	School of Health Sciences
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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Hodiamont, F., Hock, H., Ellis-Smith, C., Evans, C., de Wolf-Linder, S., Jünger, S., Diehl-Schmid, J., Burner-Fritsch, I., & Bausewein, C. (2021). Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study. Palliative Medicine, 35(5), 962–971. https://doi.org/10.1177/02692163211004403

Hodiamont, F. et al. (2021) ‘Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study’, Palliative Medicine, 35(5), pp. 962–971. Available at: https://doi.org/10.1177/02692163211004403.

F. Hodiamont et al., “Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study,” Palliative Medicine, vol. 35, no. 5, pp. 962–971, Apr. 2021, doi: 10.1177/02692163211004403.

HODIAMONT, Farina, Helena HOCK, Clare ELLIS-SMITH, Catherine EVANS, Susanne DE WOLF-LINDER, Saskia JÜNGER, Janine DIEHL-SCHMID, Isabel BURNER-FRITSCH und Claudia BAUSEWEIN, 2021. Culture in the spotlight : cultural adaptation and content validity of the integrated palliative care outcome scale for dementia : a cognitive interview study. Palliative Medicine. 16 April 2021. Bd. 35, Nr. 5, S. 962–971. DOI 10.1177/02692163211004403

Hodiamont, Farina, Helena Hock, Clare Ellis-Smith, Catherine Evans, Susanne de Wolf-Linder, Saskia Jünger, Janine Diehl-Schmid, Isabel Burner-Fritsch, and Claudia Bausewein. 2021. “Culture in the Spotlight : Cultural Adaptation and Content Validity of the Integrated Palliative Care Outcome Scale for Dementia : A Cognitive Interview Study.” Palliative Medicine 35 (5): 962–71. https://doi.org/10.1177/02692163211004403.

Hodiamont, Farina, et al. “Culture in the Spotlight : Cultural Adaptation and Content Validity of the Integrated Palliative Care Outcome Scale for Dementia : A Cognitive Interview Study.” Palliative Medicine, vol. 35, no. 5, Apr. 2021, pp. 962–71, https://doi.org/10.1177/02692163211004403.