Literature DB >> 17901172

Ethical and methodological issues in interviewing persons with dementia.

Ingrid Hellström1, Mike Nolan, Lennart Nordenfelt, Ulla Lundh.   

Abstract

People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

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Year:  2007        PMID: 17901172     DOI: 10.1177/0969733007080206

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


  46 in total

1.  [Pain assessment in elderly nursing home residents: methods paper for the S3-guideline development].

Authors:  E Sirsch; M Schuler; T Fischer; I Gnass; M A Laekeman; C Leonhardt; E Berkemer; C Drebenstedt; E Löseke; G Schwarzmann; K Kopke; A Lukas
Journal:  Schmerz       Date:  2012-08       Impact factor: 1.107

Review 2.  Conceptualisation of self-management intervention for people with early stage dementia.

Authors:  Faith Martin; Andrew Turner; Louise M Wallace; Nicola Bradbury
Journal:  Eur J Ageing       Date:  2012-11-07

3.  [Research on humans suffering from dementia].

Authors:  H Helmchen
Journal:  Nervenarzt       Date:  2015-09       Impact factor: 1.214

4.  Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team.

Authors:  Christi J Nierse; Karen Schipper; Ezra van Zadelhoff; Joos van de Griendt; Tineke A Abma
Journal:  Health Expect       Date:  2011-02-17       Impact factor: 3.377

Review 5.  [Ethical questions in clinical research with the mentally ill].

Authors:  H Helmchen
Journal:  Nervenarzt       Date:  2008-09       Impact factor: 1.214

6.  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

7.  Exergaming Platform for Older Adults Residing in Long-Term Care Homes: User-Centered Design, Development, and Usability Study.

Authors:  Charlene H Chu; Renée K Biss; Amanda My Linh Quan; Henrique Matulis; Lara Cooper
Journal:  JMIR Serious Games       Date:  2021-03-09       Impact factor: 4.143

8.  Engaging multi-stakeholder perspectives to identify dementia care research priorities.

Authors:  Neela K Patel; Sara S Masoud; Kylie Meyer; Angelica V Davila; Sheran Rivette; Ashlie A Glassner; Deborah James; Carole L White
Journal:  J Patient Rep Outcomes       Date:  2021-06-22

Review 9.  Neurofeedback and the Aging Brain: A Systematic Review of Training Protocols for Dementia and Mild Cognitive Impairment.

Authors:  Lucas R Trambaiolli; Raymundo Cassani; David M A Mehler; Tiago H Falk
Journal:  Front Aging Neurosci       Date:  2021-06-09       Impact factor: 5.750

10.  A passive positioning alarm used by persons with dementia and their spouses--a qualitative intervention study.

Authors:  Annakarin Olsson; Maria Engström; Claudia Lampic; Kirsti Skovdahl
Journal:  BMC Geriatr       Date:  2013-02-05       Impact factor: 3.921

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