Keeping track of and recognizing the value of Public Involvement work in dementia research

Georges, Jean; Diaz-Ponce, Ana; Lamirel, Daphne; Moradi-Bachiller, Soraya; Gove, Dianne

doi:10.3389/fneur.2022.1031831

Cited by 3 publications

(3 citation statements)

References 9 publications

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“…Patient and public involvement and engagement with care home residents can enhance research design and delivery [ 10 , 11 ]. Without residents’ insights on the day-to-day experience of living in a care home, researchers’ assumptions and questions can go unchallenged.…”

Section: Introductionmentioning

confidence: 99%

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Activity provider-facilitated patient and public involvement with care home residents

Micklewright,

Killett,

Akdur

et al. 2024

Res Involv Engagem

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Background In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. Methods An exploratory design was used to see if it was possible to support “in-house” PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. Results APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents’ views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes’ practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents’ thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team’s assumptions. Conclusions PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research.

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Section: Introductionmentioning

confidence: 99%

“…Providing opportunities for residents to engage in meaningful and well-designed PPIE is essential to ensure that they can influence the generation of knowledge relating to crucial aspects of their lives. Often, their views are inferred via the voices of others [ 9 , 11 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

Activity provider-facilitated patient and public involvement with care home residents

Micklewright,

Killett,

Akdur

et al. 2024

Res Involv Engagem

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“…Translating public involvement from aspiration into practice is challenging. It is often underreported in publications (Georges et al , 2022), as are the voices of public contributors (Roberts et al , 2020). Centre for Ageing and Dementia Research (CADR) was a test site for the implementation of the UK draft standards in 2018 (Tarpey, 2019).…”

Section: Introductionmentioning

confidence: 99%

Involving older adults and unpaid carers in the research cycle: reflections on implementing the UK national standards for public involvement into practice

Jones,

Seddon,

Algar-Skaife

et al. 2023

QAOA

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Purpose This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities. Design/methodology/approach This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange. Findings This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone. Research limitations/implications Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process. Originality/value This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.

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Meaningful patient and public engagement in dissemination—embedding co-production in dementia research

de Wolf-Linder,

Kramer,

Hersperger

et al. 2024

Front. Dement.

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BackgroundPatient and Public Involvement and Engagement (PPIE) is still underutilised in both dementia research and corresponding dissemination activities.AimTo describe the methods, format, and lessons learned in co-creating and co-producing a dissemination strategy for a research project focused on establishing patient-centred outcome measures into routine palliative community care for persons living with dementia (PLWD) and their informal carers.Materials and methodsA participatory, hybrid-format workshop was conducted to co-create the dissemination strategy with a PPIE group. A video presentation of findings and a list of prompts shared prior to the workshop were used to elicit views on dissemination strategies and knowledge translation. The workshop was followed up with a survey to consolidate the dissemination strategy. Workshop minutes and survey responses were analysed using qualitative thematic analysis.Results22 participants from our diverse PPIE group attended the workshop. Two major themes emerged: (a) Knowledge translation: building bridges between research and practise, and (b) Collaboration and dissemination: everyone's voice is needed. Participants suggested critical changes to dissemination methods and materials. Successful knowledge translation depends on a strong evidence base. For this, materials need to be tailored to specific audiences. Everyone's voice needs to be integrated through co-production in dissemination activities by PPIE members to influence societal change. Tailored dissemination activities within a dissemination strategy were co-created spanning all phases of the research cycle.DiscussionInforming and educating the public and policymakers about the needs of PLWD relies on disseminating and fostering knowledge translation throughout all phases of the research cycle.

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Keeping track of and recognizing the value of Public Involvement work in dementia research

Cited by 3 publications

References 9 publications

Activity provider-facilitated patient and public involvement with care home residents

Activity provider-facilitated patient and public involvement with care home residents

Involving older adults and unpaid carers in the research cycle: reflections on implementing the UK national standards for public involvement into practice

Meaningful patient and public engagement in dissemination—embedding co-production in dementia research

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