Operationalising ethical challenges in dementia research—a systematic review of current evidence

West, Emily; Stückelberger, Astrid; Pautex, Sophie; Staaks, Janneke; Gysels, Marjolein

doi:10.1093/ageing/afw250

Cited by 41 publications

(44 citation statements)

References 23 publications

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“…Distress cues can have a subtle or sudden onset, so being attentive to the participant may aid in addressing the participant's distress (Novek and Wilkinson 2017). Being reflexive during the study and adjusting the research protocol to the participant's needs may help mitigate distress (West et al 2017). This can include taking breaks as needed and potentially ending the interview prematurely for the day if the participant wishes (Novek and Wilkinson 2017).…”

Section: Focus On Researcher-participant Relationshipsmentioning

confidence: 99%

“…As several researchers have noted, participating in both social and medical dementia research could impose a significant social risk (West et al 2017). Society stigmatizes dementia, so those who begin to openly identify (or are identified by others) as having dementia may experience changes in how others treat them (Novek and Wilkinson 2017;Witham, Beddow, and Haigh 2015).…”

Section: Acknowledgment Of Lived Worldmentioning

confidence: 99%

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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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Section: Focus On Researcher-participant Relationshipsmentioning

confidence: 99%

Section: Acknowledgment Of Lived Worldmentioning

confidence: 99%

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

Silva

Cascio

Racine

2020

A&A

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“…However, despite recommendations about the inclusion in research of people living with dementia at all stages of the condition (National Institute for Health and Care Excellence, 2018a), people with cognitive impairment are still frequently excluded from research (Taylor, DeMers, Vig, & Borson, 2012). This is due in part to the ethical concerns surrounding the inclusion of adults who lack capacity in research (West, Stuckelberger, Pautex, Staaks, & Gysels, 2017) ho are o sidered to e ul era le groups, and a lack of knowledge and understanding about the legal provisions for proxy decision-making for research participation (Shepherd, Griffith, Sheehan, Wood, & Hood, 2018).…”

Section: Advance Planning and Appointing A Lasting Power Of Attorneymentioning

confidence: 99%

‘There’s more to life than money and health’: Family caregivers’ views on the role of Power of Attorney in proxy decisions about research participation for people living with dementia

et al. 2019

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People living with dementia may experience difficulties when making decisions for themselves in the later stages of the condition. Whilst there are mechanisms in England and Wales for appointing an attorney to make decisions about welfare and finances on their behalf, there are no provisions for appointing an attorney to make future decisions about research participation. This is despite a growing focus on Advanced Care Planning and other processes that provide opportunities to discuss future preferences and ensure that decisions are made in line with those preferences. This qualitative study with 15 family caregivers who had acted as research proxies explored the role of Power of Attorney in their decisions about research, and their views about extending current legal arrangements to include research. Five themes were identified: the holistic nature of decision-making; the power of attorney; making decisions by putting yourself in their shoes; support for bringing research under the umbrella of attorney arrangements; and a unifying theme of trusting relationships. Legal provisions for prospectively appointing a research proxy may encourage discussion about future wishes and so e a le de isio s a out resear h to e ade that are i a orda e ith the perso s prefere es a d wishes. However, further consultation with the public including people living with dementia and their families, and a range of stakeholders is needed. Providing guidance to families, people living with dementia, and the wider research community may provide greater clarity and improve decisionmaking in the meantime.

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“…The effect of this was a number of potential patient participants were discouraged from engaging in the study. Whilst research has focused on the ethical requirements of dementia-related research, where important lessons can be learned (60), little guidance currently exists for developing study documentation for end-of-life care studies that are adequately detailed to satisfy potential participants and research ethics committees alike (61). Organization it is permissible for researchers and research ethics committees to consider modifying consent procedures as long as they preserve as much of the informed consent process as possible to enable participants to understand the general nature of a study, and make a meaningfully informed decision whether or not to participate (62).…”

Section: Study Involvement Proceduresmentioning

confidence: 99%

Managing uncertain recovery for patients nearing the end of life in hospital; a mixed-method, feasibility cluster randomised controlled trial of the AMBER care bundle

Koffman

Yorganci

et al. 2019

Preprint

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Background: The AMBER (Assessment; Management; Best practice; Engagement; Recovery uncertain) care bundle is a complex intervention used in UK hospitals to support patients with uncertain recovery. However, it has yet to be evaluated in a randomised controlled trial (RCT) to identify potential benefits or harms. Aim: To investigate the feasibility of a cluster RCT of the AMBER care bundle. Methods: Mixed-method, feasibility cluster RCT. Prospective, quantitative data collected from patients (or proxies lacking capacity) to (i) examine recruitment, retention and follow-up rates; (ii) test trial data collection tools and determine their optimum timing; (iii) test methods to identify use of financial resources; (iv) explore the acceptability of study procedures for health professionals and patients. Descriptive statistical analyses and thematic analysis using the Framework approach.Results: 894 patients were screened, of whom, 220 were eligible and 19 (8.6%) declined to participate. Recruitment to the control arm was challenging; of the 728 patients screened, 647 (88.9%) were excluded. 65 (81.3% of the recruitment target) patients were recruited. Many were elderly (≥80 years 46.2%, n=30, mean-77.8 years SD=12.3 years). Over half (53.8%) had a noncancer diagnosis, with a mean of 2.3 co-morbidities. 24.6% patients (n=16) died during their hospital stay and 35.4%, (n=23) within 100 days of discharge. In both trial arms, baseline IPOS subscale scores identified 'moderate' patient anxiety (mean 13.3 (SD 4.8) control, 13.3 (SD 5.1) intervention), and howRwe identified a 'good' care experience (mean 13.1 (SD 2.5) control, 11.5 (SD 2.1) intervention). Collection of quantitative service use/quality of life data was feasible. No patient participants regarded study involvement negatively. Focus groups with health professionals identified concerns regarding (i) subjectivity of the intervention eligibility criteria; (ii) the need to prognosticate to identify potential patients; (iii) consent procedures and questionnaire length. Conclusions: A full trial of the AMBER care bundle is technically feasible but impractical due to fundamental issues in operationalising the intervention's eligibility criteria preventing optimal recruitment. Since this complex intervention continues to be used in clinical care and advocated in policy, alternative research approaches must be considered and tested. Trial registration: International Standard Randomised Controlled Trial Number (ISRCTN) Register, ISRCTN36040085 4 Background Clinical uncertainty in hospital settingsClinical uncertainty has been defined as the inability to determine the meaning and significance of illness-related events (1). It occurs in situations where health professionals are unable to accurately predict outcomes due to insufficient information. Evidence suggests that in the last 30 days of life, a combination of deteriorating health and clinical uncertainty are highly distressing for patients in hospital, and their families (2, 3). This is amplified when discussions about t...

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Operationalising ethical challenges in dementia research—a systematic review of current evidence

Abstract: this review has highlighted a lack of consensus in current research and guidelines addressing these concerns; a clear stance on ethical governance of studies is important for future research and best evidence-based practice in dementia.

Cited by 41 publications

References 23 publications

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

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

‘There’s more to life than money and health’: Family caregivers’ views on the role of Power of Attorney in proxy decisions about research participation for people living with dementia

Managing uncertain recovery for patients nearing the end of life in hospital; a mixed-method, feasibility cluster randomised controlled trial of the AMBER care bundle

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