CAREGIVER VERSION SHARED DECISION-MAKING QUESTIONNAIRE FOR ADULT CHILD AND PARENTS WITH DEMENTIA - A DELPHI STUDY

Sep 28, 2026

Uploaded by Aditya

Adult children are the largest group of family caregivers globally and often serve as key long-term decision-makers for parents with dementia. Shared decision-making in dementia extends beyond clinical encounters, covering care arrangements, daily care, medication, and financial decisions made jointly by people with dementia and adult child caregivers. To address a research gap on patient-caregiver SDM, the Shared Decision-Making Questionnaire was adapted into an adult-child caregiver version and assessed for content validity via a two-round online Delphi study.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages2

Reading Time5 min

AccessFree to download

Abstract

Background and purpose

Adaptation method

Delphi evaluation results

Conclusion

Innovation in Aging, 2025, Vol. 9, No. S2 879 Abstract citation ID: igaf122.2974 CAREGIVER VERSION SHARED DECISION-MAKING QUESTIONNAIRE FOR ADULT CHILD AND PARENTS WITH DEMENTIA: A DELPHI STUDY Liu Huanran, and Vivian Lou, The University of Hong Kong, Hong Kong, China (People’s Republic) 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 880 Innovation in Aging, 2025, Vol. 9, No. S2 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 r ound, 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 andAve-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.

FAQs

Why adapt the Shared Decision-Making Questionnaire for adult-child caregivers?

Existing studies mainly examine physician-patient shared decision-making, leaving limited understanding of SDM between people with dementia and their adult child caregivers. The adaptation targets caregivers’ perspectives on decision-making with their parents.

How was the caregiver version developed and evaluated?

The tool was translated and refined through a focus group with seven caregivers, then reviewed by nine experts in a two-round online Delphi study assessing importance, relevance, and clarity on a nine-point Likert scale.

What content validity results were found across Delphi rounds?

In round one, item-level content validity indices ranged from 0.78 to 1, with Ave-CVI scores of 0.93 (importance), 0.94 (relevance), and 0.89 (clarity). In round two, I-CVI and Ave-CVI improved to 1, indicating excellent content validity and high consensus.

Sep 28, 2026

Uploaded by Aditya