Literature DB >> 17334168

Consent and assent to participate in research from people with dementia.

Susan Slaughter1, Dixie Cole, Eileen Jennings, Marlene A Reimer.   

Abstract

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.

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Year:  2007        PMID: 17334168     DOI: 10.1177/0969733007071355

Source DB:  PubMed          Journal:  Nurs Ethics        ISSN: 0969-7330            Impact factor:   2.874


  28 in total

1.  Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform.

Authors:  Nola M Ries; Katie A Thompson; Michael Lowe
Journal:  J Bioeth Inq       Date:  2017-06-20       Impact factor: 1.352

2.  Presence redefined: The reciprocal nature of engagement between elder-clowns and persons with dementia.

Authors:  Pia Kontos; Karen-Lee Miller; Gail Joyce Mitchell; Jan Stirling-Twist
Journal:  Dementia (London)       Date:  2016-07-27

3.  How Swallow Pressures and Dysphagia Affect Malnutrition and Mealtime Outcomes in Long-Term Care.

Authors:  Ashwini M Namasivayam-MacDonald; Jill M Morrison; Catriona M Steele; Heather Keller
Journal:  Dysphagia       Date:  2017-07-21       Impact factor: 3.438

Review 4.  Informed Consent to Research with Cognitively Impaired Adults: Transdisciplinary Challenges and Opportunities.

Authors:  Beth Prusaczyk; Steven M Cherney; Christopher R Carpenter; James M DuBois
Journal:  Clin Gerontol       Date:  2016-06-20       Impact factor: 2.619

5.  Feasibility of a web-based dementia feeding skills training program for nursing home staff.

Authors:  Melissa Batchelor-Murphy; Elaine J Amella; Jane Zapka; Martina Mueller; Cornelia Beck
Journal:  Geriatr Nurs       Date:  2015-03-11       Impact factor: 2.361

6.  Informed consent to research in long-term care settings.

Authors:  Jennifer Hagerty Lingler; Rita A Jablonski; Meg Bourbonniere; Ann Kolanowski
Journal:  Res Gerontol Nurs       Date:  2009-05-29       Impact factor: 1.571

7.  Procedural Framework to Facilitate Hospital-Based Informed Consent for Dementia Research.

Authors:  Timothy R Holden; Sarah Keller; Alice Kim; Michael Gehring; Emily Schmitz; Carol Hermann; Andrea Gilmore-Bykovskyi; Amy J H Kind
Journal:  J Am Geriatr Soc       Date:  2018-09-24       Impact factor: 5.562

Review 8.  The U-ARE Protocol: A Pragmatic Approach to Decisional Capacity Assessment for Clinical Research.

Authors:  Rachel K B Hamilton; Cynthia H Phelan; Nathaniel A Chin; Mary F Wyman; Nickolas Lambrou; Nichelle Cobb; Amy J H Kind; Hanna Blazel; Sanjay Asthana; Carey E Gleason
Journal:  J Alzheimers Dis       Date:  2020       Impact factor: 4.472

9.  Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.

Authors:  Clark Benson; Amanda Friz; Shannon Mullen; Laura Block; Andrea Gilmore-Bykovskyi
Journal:  J Empir Res Hum Res Ethics       Date:  2020-11-26       Impact factor: 1.742

10.  Procedure versus process: ethical paradigms and the conduct of qualitative research.

Authors:  Kristian Pollock
Journal:  BMC Med Ethics       Date:  2012-09-27       Impact factor: 2.652

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