Ethical issues when involving people newly diagnosed with dementia in research

Holland, Suzanne; Kydd, Angela

doi:10.7748/nr.22.4.25.e1308

Cited by 18 publications

(14 citation statements)

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“…In her paper, 'Nobody's ever asked how I felt', Pratt (2002) applies the concept of safe practice to research involving people with dementia and argues that researchers should strive to create a safe research context. Other dementia scholars have also stressed the need to ensure safe research practices (Digby et al, 2016;Hellstrom et al, 2007;Wilkinson, 2002) and many have published work that reflects on their approaches to promoting safety and wellbeing, the challenges they have encountered, and possible solutions to these issues (Bartlett & Martin, 2002;Beuscher & Grando, 2009;Clarke & Keady, 2002;Dewing, 2002Dewing, , 2007Digby et al, 2016;Hellstrom et al, 2007;Holland & Kydd, 2015;Hubbard et al, 2003;McKeown et al, 2010;Murphy et al, 2015;Pesonen et al, 2011;Pratt, 2002;Wiersma, 2011). People with dementia have also written about their experiences of the research process (McKillop, 2002;McKillop & Wilkinson, 2004;Robinson, 2002) and developed guidelines for research involving people with dementia (Scottish Dementia Working Group Research Sub-Group, 2014).…”

Section: Take Down Policymentioning

confidence: 99%

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

Novek

Wilkinson

2017

Dementia

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Aim Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. Objectives This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. Methods Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. Findings Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. Conclusion By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.

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Section: Take Down Policymentioning

confidence: 99%

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

Novek

Wilkinson

2017

Dementia

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“…Meeting the gatekeeper in person can initiate a trusting relationship, setting the groundwork for a smooth experience for all parties (Dempsey et al 2016). Providing gatekeepers and participants with accessible information they can take home to read in advance can also encourage a positive relationship (Holland and Kydd 2015).…”

Section: Focus On Researcher-participant Relationshipsmentioning

confidence: 99%

“…This assumption can result in the rejection of these studies by RECs, further limiting the opportunities for discovery and participation in research (Pachana et al 2015). It also discourages researchers from engaging in studies involving this population because of the bureaucratic hassle (Holland and Kydd 2015). Despite there being a large population of older people and people with dementia who may wish to participate in research, they do not have the opportunity without accessible studies available (Murray 2013).…”

Section: Introductionmentioning

confidence: 99%

Person-Oriented Research Ethics and Dementia:The Lack of Consensus

Silva

Cascio

Racine

2020

A&A

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Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.

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“…As people with dementia are being ‘engaged’ more often by advocacy organisations and other businesses in the sector, as well as in research, creative copyright and the ownership of intellectual property appears to be an issue that I believe has been overlooked. We are considered a vulnerable group in research, and the ethical boundaries for including people with dementia in research are stringent (Cubit, 2010; Higgins, 2013; Holland & Kidd, 2015; Slaughter, Cole, Jennings, & Reimer, 2007) and often, it is difficult to get research proposals accepted if their care partners are not included, if at all.…”

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confidence: 99%

Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright

Swaffer

2016

Dementia

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owned the creative copyright. This Editorial is not considering the ethics of using people with dementia in research, as that is clear in the literature. It is important to note that this was not the case in the poetry pilot project, and the researchers treated all participants with the utmost respect and adhered to all ethical and other protocols. The way my poem appeared on Twitter, is what highlighted not that researchers are not following strict research ethic protocols, but rather, people who are engaging with people with dementia, outside of formal research may not be considering them. Specifically, it will consider the creative and intellectual copyright or ownership of people with dementia in general, and whether this issue has been neglected, or even considered as a valid concern. Almost all others providing intelligence or creative to a piece of work receive full credit, and most often also are paid for their contribution. This is not happening to people with dementia, and all too often, we are still listed on documents as 'People/person with dementia', just as we are too often still listed that way on a conference or event program. It is not only offensive it is disabling and stigmatising to be nameless and undervalued, and it is my hope this article opens the door to a more morally and ethically considered approach to how people with dementia are being 'engaged' beyond formal research. People with dementia are rarely funded to be the people standing on the podiums at conferences and events presenting the work, missing out on the full acknowledgement of their sometimes vast contributions given for free or almost no payment other than being

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Ethical issues when involving people newly diagnosed with dementia in research

Cited by 18 publications

References 0 publications

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

Person-Oriented Research Ethics and Dementia:The Lack of Consensus

Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright

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