TY - JOUR
T1 - Applying person-centered research ethics in the design of dementia-specific measures
AU - Molony, Sheila L.
AU - Fazio, Sam
AU - Sanchez, Ricci
AU - Montminy, Joe
AU - Rulison, Maureen
AU - McGuire, Rev Dennis
AU - Feinn, Richard
AU - Jeon, Sangchoon
AU - Montesano, Rachel
AU - Prophater, Lorna
AU - VanHaitsma, Kimberly
AU - Zimmerman, Sheryl
N1 - Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2023/6
Y1 - 2023/6
N2 - There is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development. This paper describes a research process using Human Centered Design and highlights ethical principles considered during the translation of the design process to experiential world of Alzheimer's disease and related dementia. Including persons living with dementia and care partners as members of the design team offers new insights, while requiring focused attention on inclusivity, transparency, and person-centered ethics.
AB - There is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development. This paper describes a research process using Human Centered Design and highlights ethical principles considered during the translation of the design process to experiential world of Alzheimer's disease and related dementia. Including persons living with dementia and care partners as members of the design team offers new insights, while requiring focused attention on inclusivity, transparency, and person-centered ethics.
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U2 - 10.1016/j.jaging.2023.101139
DO - 10.1016/j.jaging.2023.101139
M3 - Article
C2 - 37268373
AN - SCOPUS:85159593587
SN - 0890-4065
VL - 65
JO - Journal of Aging Studies
JF - Journal of Aging Studies
M1 - 101139
ER -
