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

Abstract

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. Conclusion: 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.

Development of a Quantitative Preference Instrument for Person-Centered Dementia Care—Stage 2: Insights from a Formative Qualitative Study to Design and Pretest a Dementia-Friendly Analytic Hierarchy Process Survey

“…During the previous qualitative interviews [ 31 ], we experienced some PlwD to be nervous, as some expected a test and wanted to “perform well”, cf. Supplementary Materials File S1 , row 1, which was confirmed by EP1.…”

“…The overarching AHP study ‘PreDemCare’ [ 37 , 38 ] adopts a sequential mixed-methods design [ 39 ] for final instrument development. Details about the PreDemCare study can be found in [ 37 , 38 ], and a process outline is provided by Mohr et al [ 31 ]. Based on findings from a previous systematic review [ 40 ], stage 1 of the pre-study, including a small expert panel and qualitative interviews [ 31 ], was conducted to identify relevant (sub)criteria of PCC to develop an AHP hierarchy of relevance to (future) decision makers.…”

“…Details about the PreDemCare study can be found in [ 37 , 38 ], and a process outline is provided by Mohr et al [ 31 ]. Based on findings from a previous systematic review [ 40 ], stage 1 of the pre-study, including a small expert panel and qualitative interviews [ 31 ], was conducted to identify relevant (sub)criteria of PCC to develop an AHP hierarchy of relevance to (future) decision makers. Six criteria with two sub-criteria emerged from analyses: social relationships (indirect contact and direct contact), cognitive training (passive or active), organization of care (decentralized structures and no shared decision making vs. centralized structures and shared decision making), assistance with daily activities (professional or family member), characteristics of care professionals (empathy, education and work experience) and physical activities (alone or group) .…”

“…Individual patient interviews were conducted with PlwD and informal CGs in their homes or in day clinics from July to August 2021. Based on our experiences with previous interviews in pre-study stage 1 [ 31 ], we chose an individual interview format with a single interviewer (WM), settings known to the patients and the possibility of inviting an informal CG as a silent supporter to create a comfortable interview situation [ 54 ]. Participation in the interview required prior provided informed written consent, which could be provided by the PlwD or a legal guardian.…”

“…Particularly in research with PlwD, consideration of these issues is important to ensure a dementia-friendly design of the quantitative preference instrument [ 30 ]. Furthermore, the appropriateness of previously defined (sub)criteria [ 31 ] and local translations, as well as the comprehensibility of (sub)criteria within the choice sets have to undergo final pretesting.…”