Iterative refinement: Developing items to build an assessment of dementia caregivers’ caregiving style

Abstract

AbstractBackgroundPrior mixed‐methods research has classified 5 distinct dementia caregiving style profiles based on how caregivers vary across 5 domains: understanding of dementia, adaptability, orientation towards oneself vs. the care recipient, emotional expression, and behavioral management. Style profiles have been associated with important care outcomes, yet, for this construct to be useful, it must be measurable. Our study aims to develop the first comprehensive assessment of caregiver cognitive‐behavioral styles for clinical/service utility or self‐assessment.MethodA preliminary item pool of 188 items was developed based on prior research. A literacy review of item content was conducted. Items then went through iterative refinement including: 1) expert review (2 content experts and 1 measurement development expert, with 63 items modified and 66 deleted); 2) cognitive interviews with 7 caregivers (caregivers reviewed each domain’s item set and provided interview feedback on the items, with 4 items modified and 18 deleted); and 3) translatability review for Spanish (review of wording that could impede translation to other languages, with 28 modified and 4 deleted).ResultOur iterative item pool refinement process resulted in 99 items reflective of the 5 domains to be included in psychometric field testing: adaptability (32 items; e.g., I make adjustments to the way I provide care), behavioral management (20 items; e.g., I try to distract the person I care for when they are frustrated), emotional expression (25 items; e.g., I feel positive when it comes to handling caregiving difficulties), understanding (10 items; e.g., I recognize when I need to change how I communicate with the person I care for), and orientation to self or other (12 total; e.g., I do what is best for the person I care for, even at my own expense).ConclusionOur iterative item development process ensures that items developed for a future measure are person‐centered, clear, translatable, and relevant to empirical evidence. The developed items will be field tested among 200 caregivers. This measure is vital to the development of more effective and individualized treatment to enhance caregivers’ ability to support the PLwD, improve outcomes, and reduce the downstream burden of illness and healthcare costs.