Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

Wiersma, Elaine; O’Connor, Deborah L.; Loiselle, Lisa; Hickman, Kathy; Heibein, Bill; Hounam, Brenda; Mann, Jim

doi:10.1177/1471301216642339

Cited by 29 publications

(39 citation statements)

References 32 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%

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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%

“… 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%

Patient engagement in research related to dementia: A scoping review

et al. 2018

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“…These centred on the participation of the men throughout the research and included promoting their voices at all opportunities, situating them as 'experts' and providing a platform for mutual learning, as well as upholding their rights for autonomy and respect. This approach is widely advocated for enabling the inclusion of people with dementia throughout the entire research process (Dupuis et al, 2012(Dupuis et al, , 2016aWiersma et al, 2016) and ensured the initiative was fit for purpose.…”

Section: Research Approachmentioning

confidence: 99%

Exploring the ‘active mechanisms’ for engaging rural-dwelling older men with dementia in a community technological initiative

2019

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Research has suggested ecopsychosocial initiatives can promote a sense of wellbeing and inclusion in people with dementia. However, few studies have elucidated the ‘active mechanisms’ whereby such initiatives can achieve these outcomes, so hindering their generalisability. This is particularly pertinent when seeking to support community-dwelling older men with dementia who are reluctant to engage with traditional health and social care initiatives. This paper reports on a study that drew from the principles of Participatory Action Research to explore the ‘active mechanisms’ of a technological initiative for older men (65+ years) with dementia in rural England. An individually tailored, male-only initiative, using off-the-shelf computer game technology (e.g. iPad, Nintendo Wii and Microsoft Kinect) was delivered over a nine-week period. Multiple qualitative methods were employed, including: focus groups, open interviews and extensive reflective field notes, to gather data from the perspective of 22 men, 15 care partners and five community volunteers. The data were analysed thematically and interpreted using a masculinity lens. Three mechanisms contributed to the initiative's success: the use of the technology, the male-only environment and the empowering approach adopted. The paper argues that initiatives aimed at community-dwelling older men with dementia would be advised to consider these gendered experiences and ensure participants can maximise their masculine capital when participating in them, by providing enabling activities, non-threatening environments and empowering approaches of delivery.

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“…There are, however, challenges in seeking out the voice of dementia within such shared interviews. Others have noted the possibility of ‘self-silencing’ within interview settings when the conversation is shared in this way (Wiersma et al ., 2016). There is also the possibility that individual concerns of both remained unspoken.…”

Section: Discussionmentioning

confidence: 99%

Couples affected by dementia and their experiences of advance care planning: a grounded theory study

Ryan

McKeown

2018

Ageing and Society

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Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

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Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

Cited by 29 publications

References 32 publications

Patient engagement in research related to dementia: A scoping review

Patient engagement in research related to dementia: A scoping review

Exploring the ‘active mechanisms’ for engaging rural-dwelling older men with dementia in a community technological initiative

Couples affected by dementia and their experiences of advance care planning: a grounded theory study

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