“It was like reading a detective novel”: Using PAR to work together for culture change

Fortune, Darla; McKeown, Janet K. L.; Dupuis, Sherry L.; Witt, Lorna de

doi:10.1016/j.jaging.2015.04.002

Cited by 20 publications

(25 citation statements)

References 33 publications

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“… a de Witt & Fortune (2017) originates from the same participatory action research as Dupuis, McAiney, Fortune, Ploeg, & de Witt (2016), Fortune, McKeown, Dupuis, & de Witt (2015), and McKeown, Fortune, & Dupuis (2016), but is presented separately as it describes different methods in the sub-study. b O’Connor, Mann, & Wiersma (2018) and Wiersma et al. (2016) originate from same participatory action research, but are presented separately as they describe different methods in the sub-study.…”

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…Some studies that aimed to engage persons with dementia reported difficulty in doing so. Two studies reported that, despite intentions to engage persons with dementia and their best efforts to do so, they engaged only care partners (Dodd et al., 2014; Moriarty et al., 2007) and others noted difficulty maintaining ongoing commitment (Fortune, McKeown, Dupuis, & de Witt, 2015; McKeown, Fortune, & Dupuis, 2016). These reports support others’ findings that persons with dementia may face barriers to engaging in research (Backhouse et al., 2016; Puts et al., 2017; Schilling & Gerhardus, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…For many, the prospect of engaging in research is daunting and, among persons with dementia, this perception may have been partly shaped by societal views that they are not fully capable of participating in the research process (Fortune et al., 2015); stigma about dementia and assumptions about lack of capacity may be a barrier to engagement in research. However, Dupuis, McAiney, Fortune, Ploeg, and Witt (2016) note that a benefit of engagement in research is that it allows participants to ‘demonstrate their capabilities and dispel myths and misunderstandings related to their perceived helplessness’ (Dupuis et al., 2016).…”

Section: Discussionmentioning

confidence: 99%

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Patient engagement in research related to dementia: A scoping review

et al. 2018

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Patient ‘engagement’ or ‘involvement’ in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact – on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society – is still needed.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Patient engagement in research related to dementia: A scoping review

et al. 2018

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“…The overarching goal of the PiDC Alliance is to improve the dementia care experience for persons living with dementia, their family partners in care, volunteers, and staff working in health care settings by embarking on a culture change process. While members of the PiDC Alliance strive to ensure all persons involved in care contexts play a meaningful role in the culture change process, we experienced some challenges to having persons with dementia and their family partners in care participate in the process with the same intensity and regularity as other partners (see Fortune, McKeown, Dupuis, & de Witt, 2015). Upon recognizing the need to hear directly from persons living with dementia and their family members in a way that would meaningfully inform the larger research process, we invited persons with dementia and family members to come together and provide insight and feedback.…”

Section: How We Discovered the Memory Boosters Social Clubmentioning

confidence: 99%