Work

Caregiver Version Shared Decision-Making Questionnaire for Adult Child and Parents with Dementia: A Delphi Study

Year: 2025

Type: article

Abstract: Adult children constitute the largest group of family caregivers globally and play a pivotal role as primary decision-makers and long-term caregivers for parents with dementia. While shared decision-making (SDM) traditionally involves patients and physicians in clinical settings, dementia care often extends beyond formal healthcare, with decisions about care arrangements, daily care, medication, and finances frequently made by people with dementia and adult child caregivers. Despite the importance of SDM in dementia care, existing research has primarily focused on physician-patient dynamics, leaving a significant gap in understanding patient-caregiver SDM. To address this gap, we adapted the Shared Decision-Making Questionnaire (SDM-Q) into an adult-child caregiver version and evaluated its content validity through a two-round online Delphi study. This adapted tool aims to assess caregivers’ perspectives on decision-making with their parents. After translation and a focus group with seven caregivers, nine experts (three researchers, four practitioners, and two caregivers) evaluated the scale’s importance, relevance, and clarity using a nine-point Likert scale. Changes, such as replacing “patient” with “my father/mother,” were made based on expert feedback to reduce stereotypes. In the first round, item-level content validity indices (I-CVI) ranged from 0.78 to 1 across domains, with Ave-CVI scores of 0.93 (importance), 0.94 (relevance), and 0.89 (clarity). All items achieved moderate to high consensus. In the second round, I-CVI and Ave-CVI improved to 1, indicating excellent content validity and high expert consensus. These results suggest the SDM-Q-Carer is a valid tool for exploring decision-making involvement among adult child caregivers, though further validation is recommended.

Source: Innovation in Aging

DOI: 10.1093/geroni/igaf122.2974

Authors: Liu Huanran, Vivian Lou

Institution: University of Hong Kong

Language: English

Topic: Palliative Care and End-of-Life Issues

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $3,977