Open AccessCulture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study
Author(s) -
Farina Hodiamont,
Helena Hock,
Clare EllisSmith,
Catherine Evans,
Susanne de Wolf-Linder,
Saskia Jünger,
Janine DiehlSchmid,
Isabel Burner-Fritsch,
Claudia Bausewein
Publication year - 2021
Publication title -
palliative medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.989
H-Index - 106
eISSN - 1477-030X
pISSN - 0269-2163
DOI - 10.1177/02692163211004403
Subject(s) - palliative care , dementia , content validity , thematic analysis , comprehension , psychology , cognition , nursing , content analysis , family caregivers , scale (ratio) , medicine , qualitative research , gerontology , psychometrics , clinical psychology , psychiatry , disease , social science , linguistics , philosophy , physics , pathology , quantum mechanics , sociology
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.