Impact of involving people with dementia and their care partners in research: a qualitative study

Abstract

ObjectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.DesignWe used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.SettingWe evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.ParticipantsWe purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.ResultsImpact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia.ConclusionsPPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

Patient and Public Involvement for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia

“…Although PPI in dementia research has progressed substantially, evidence supporting the impact of PPI is still developing and descriptions of impact are sparse and frequently lack consistency due to inadequate conceptualization, and inconsistent reporting ( 16 , 44 , 68 – 72 ), thus rendering the evaluation of impact difficult. Nonetheless, it is critical to develop a strong evidence base for PPI by demonstrating impact ( 17 , 73 ), as we have illustrated here ( Tables 1 , 2 , researcher survey, monitoring forms), and thus moving the PPI agenda forward in a significant and applicable way ( 17 , 22 , 73 , 74 ).…”

“…It recognizes the centrality of the patient and public's viewpoints and concerns, and the acknowledgment that their perspective may differ from those of researchers ( 15 – 17 ). In under-resourced LMIC settings, the theoretical underpinnings of PPI ( 18 – 21 ) take on greater significance including, the following, as conceptualized by Greenhalgh et al ( 22 ): (1) the “ emancipatory imperative ”, which suggests that involving people in research addresses power imbalances between participants, who may be vulnerable populations, and researchers, and encompasses the social justice principle of “inclusion”; (2) the “ efficiency imperative” , which addresses the need to reduce “research waste” ( 23 , 24 ) by addressing critical research questions pertinent to the population in question, and the need to accelerate the research trajectory from “proof-of-principle” to implementation ( 16 , 17 , 21 , 25 ); and (3) the “ political imperative” which holds that knowledge should be co-created by researchers and lay stakeholders ( 26 – 29 ). In addition, if the research involves international partners, particularly those from HIC, all three imperatives are important, particularly to safeguard against the risk of “research imperialism” ( 30 ).…”

Engagement with a Diverse Stakeholder Advisory Council for Research in Dementia Care

“…As such, the results reported here contribute to our understanding of possible outcomes for stakeholders from their engagement in research. [21] The ndings outlined in this paper are a resource for researchers seeking to collaborate with stakeholders in dementia care, to represent their voices and perspectives in research.…”

“…[19,25] Their participation in the development of meaningful research is critical, however, and efforts to encourage their engagement as collaborators are needed. [21,23] One approach to include persons living with dementia as collaborators in research is through a multiple stakeholder advisory council. The multiple stakeholder approach can enable persons living with dementia to participate in a supportive group culture with shared project goals where they are given agency to engage in research activities without overburdening them as the primary drivers of the research process.…”

“…[20] There are few studies that have examined the impact of participation of persons living with dementia and their care partners on the research process. [18,21] To address this gap, our purpose is to describe a diverse stakeholder advisory council (SAC), including persons living with dementia and care partners alongside health and social care professionals, that was established to build capacity for dementia care research and to evaluate engagement from the perspective of the SAC members.…”