Development of a Quantitative Instrument to Elicit Patient Preferences for Person-Centered Dementia Care Stage 1: A Formative Qualitative Study to Identify Patient Relevant Criteria for Experimental Design of an Analytic Hierarchy Process

Wiebke Mohr, Anika Rädke, Adel Afi, Franka Mühlichen, Moritz Platen, Bernhard Michalowsky and Wolfgang Hoffmann
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Wiebke Mohr: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany
Anika Rädke: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany
Adel Afi: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany
Franka Mühlichen: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany
Moritz Platen: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany
Bernhard Michalowsky: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany
Wolfgang Hoffmann: German Center for Neurodegenerative Diseases e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstrasse 1-2, D-17487 Greifswald, Germany

IJERPH, 2022, vol. 19, issue 13, 1-27

Abstract: Background: Person-centered care (PCC) requires knowledge about patient preferences. This formative qualitative study aimed to identify (sub)criteria of PCC for the design of a quantitative, choice-based instrument to elicit patient preferences for person-centered dementia care. Method: Interviews were conducted with n = 2 dementia care managers, n = 10 People living with Dementia (PlwD), and n = 3 caregivers (CGs), which followed a semi-structured interview guide including a card game with PCC criteria identified from the literature. Criteria cards were shown to explore the PlwD’s conception. PlwD were asked to rank the cards to identify patient-relevant criteria of PCC. Audios were verbatim-transcribed and analyzed with qualitative content analysis. Card game results were coded on a 10-point-scale, and sums and means for criteria were calculated. Results: Six criteria with two sub-criteria emerged from the analysis; social relationships (indirect contact, direct contact), cognitive training (passive, active), organization of care (decentralized structures and no shared decision making, centralized structures and shared decision making), assistance with daily activities (professional, family member), characteristics of care professionals (empathy, education and work experience) and physical activities (alone, group). Dementia-sensitive wording and balance between comprehensibility vs. completeness of the (sub)criteria emerged as additional themes. Conclusions: Our formative study provides initial data about patient-relevant criteria of PCC to design a quantitative patient preference instrument. Future research may want to consider the balance between (sub)criteria comprehensibility vs. completeness.

Keywords: patient-centered care; dementia; mild cognitive impairment; patient preferences; patient participation; qualitative research; attributes (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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