Applying person-centered research ethics in the design of dementia-specific measures

被引：0

作者：

Molony, Sheila L. ^{[1
]}

Fazio, Sam ^{[2
]}

Sanchez, Ricci ^{[3
]}

Montminy, Joe ^{[3
]}

Rulison, Maureen ^{[4
]}

McGuire, Rev. Dennis ^{[5
]}

Feinn, Richard ^{[6
]}

Jeon, Sangchoon ^{[7
]}

Montesano, Rachel ^{[8
]}

Prophater, Lorna ^{[9
]}

VanHaitsma, Kimberly ^{[10
]}

Zimmerman, Sheryl ^{[11
,12
]}

机构：

[1] Quinnipiac Univ, Sch Nursing, 275 Mt Carmel Ave, Hamden, CT 06518 USA

[2] Alzheimers Assoc, Qual Care & Psychosocial Res, Chicago, IL USA

[3] Alzheimers Assoc, Chicago, IL USA

[4] Certified Montessori Dementia Care Profess, Caregiver Support & Resources, Dunedin, FL USA

[5] First Congregat Church Waterbury, Waterbury, CT USA

[6] Quinnipiac Univ, Med Sci, Hamden, CT USA

[7] Yale Sch Nursing, Nursing, Orange, CT USA

[8] Yale New Haven Hlth, New Haven, CT USA

[9] Alzheimers Assoc, Qual Care & Psychosocial Res, Chicago, IL USA

[10] Penn State Univ, Ross & Carol Nese Coll Nursing, Program Person Ctr Living Syst Care, State Coll, PA USA

[11] Univ North Carolina Chapel Hill, Cecil G Sheps Ctr Hlth Serv Res, Chapel Hill, NC USA

[12] Univ North Carolina Chapel Hill, Sch Social Work, Chapel Hill, NC USA

来源：

JOURNAL OF AGING STUDIES | 2023年 / 65卷

基金：

美国国家卫生研究院;

关键词：

Alzheimer's disease; Dementia; Ethics; Human centered design; Person centered research; ORIENTED RESEARCH; CARE;

D O I：

10.1016/j.jaging.2023.101139

中图分类号：

R4 [临床医学]; R592 [老年病学];

学科分类号：

1002 ; 100203 ; 100602 ;

摘要：

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 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.

引用

页数：7

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