‘Knocking at the door of humanity’: using co-creation and community-based participatory research to foster citizenship for individuals with lived experience of dementia

BackgroundEngaging people with lived experience of dementia (i.e., people living with dementia, family/friend care partners) in all phases of research contributes to more relevant and meaningful research findings. Mobilizing knowledge to diverse audiences is critical to getting scientific findings into the hands of knowledge users, including people with lived experience of dementia. To ensure the goals of patient engagement and knowledge mobilization (KM) were achieved, two cross‐cutting programs within the Canadian Consortium on Neurodegeneration in Aging (CCNA) were established: a KM program to support KM activities and a lived experience program, Engagement of People with Lived Experience of Dementia (EPLED). The EPLED Advisory Group consists of people with lived experience of dementia, to support the engagement of people with lived experience in research.MethodIn addition to their respective core activities, the KM and EPLED programs united to work collaboratively to achieve shared goals of increasing the involvement of people with lived experience throughout the CCNA network, including in KM. Together, the programs undertook activities to raise the profile of people with lived experience of dementia, involving EPLED in KM activities as well as planning and decision making. Over time, this led to a culture shift within CCNA where researchers increasingly sought out and involved the perspectives of people with lived experience in research and KM activities.ResultPeople with lived experience of dementia are now key collaborators at all stages of scientific research within CCNA, including in planning and executing KM activities. Evaluation data indicate these activities are valued by researcher, trainee and public audiences.ConclusionThe integration of people with lived experience of dementia within CCNA's research and KM projects has been a resounding success. EPLED and KM will continue to collaborate on integrating people with lived experience in CCNA's research activities, and support researchers in developing KM activities and skills.

To successfully complete a community-based participatory research (CBPR) project, different types of relationships and different degrees of stakeholder investment are required, depending on context. We propose a method that will help assess relational connectivity and investment in many types of CBPR structures. Using data from a CBPR project, a network method is examined to test its effectiveness in identifying the CBPR project's strengths and weaknesses. A social network method is proposed to increase CBPR effectiveness. This involves constructing various social networks related to the CBPR project: a current network, preferred networks for each collaborative stakeholder, and a projected network. These measure the state of the current network and provide a roadmap-via the stakeholder and projected networks-to what we believe may be an ideal CBPR network structure. Analyses indicated areas of the network where improvements could be made to expand collaboration. Network analysis revealed differing views of the preferred social network from various subgroups, indicating where modification of ties and perspectives of stakeholders could improve the collaboration. This social network method promotes analysis of CBPR factors and provides information for changes designed to improve CBPR collaborations and potentially lead to better outcomes.

There is limited literature describing the ethical dilemmas that arise when conducting community-based participatory research. The following provides a case example of ethical dilemmas that developed during a multi-method community-based participatory action research project with youth in Calgary, Alberta, Canada. Several ethical dilemmas emerged during the course of the study related to the community in which the research was being undertaken, the recruitment of participants, and the overall research process. As important are possible harm s that may arise when the researcher is no longer involved. These ethical dilemmas and potential solutions are discussed in relation to social work research and community-based practice to raise awareness about the essential role of community in informing ethical research practices.

We present the ethical challenges and lessons learned over the course of a four-year community-based participatory research (CBPR) project conducted on sexually transmitted infections (STIs) in Greenland. Specifically discussed is Inuulluataarneq-the "Having the Good Life" study. Inuulluataarneq is an interdisciplinary international, collaborative CBPR study involving the University of Toronto in Canada, the Greenlandic Medical Research Council, the Centre for Primary Care in Nuuk, the University of Greenland, local health partners and communities in Greenland, the Statens Serum Institut in Denmark, and Montana State University in the United States. Inuulluataarneq is the first CBPR project implemented in Greenland. Ethical issues discussed are: (1) the complexity of working with multiple institutional review boards on an international health research project using a CBPR framework; (2) unexpected influences on health policy; and (3) the dynamic of balancing community decision making and practices with academic research requirements and expectations. Inuulluataarneq's primary contribution to understanding ethical issues when conducting research in the Arctic involves an acceptance of the time, patience, and dedication of researchers and community partners it takes to discuss, understand, and process differing ethical viewpoints and procedures.

Background. A collaborative interprofessional research project that involved community members was beneficial to community development. Objective. To draw upon the experiences of academics relating to their involvement in an interprofessional community-based participatory research (CBPR) project. Methods. A Delphi study was applied as a self-reflective evaluation process to reach consensus on the lessons learnt from participation in a CBPR project. Round one of the Delphi employed closed-ended questions and the responses were analysed descriptively using Microsoft Excel (USA). The second round consisted mainly of open-ended questions and responses, and was analysed qualitatively. Ethical clearance was obtained from the University of the Western Cape research committee. Results. Based on round one of the Delphi study, it became evident that recognition of the community as a unit of identity, addressing health from physical, emotional and social perspectives and formation of long-term commitments were the CBPR principles most applied. Disseminating information to all partners and facilitation of the collaborative equitable involvement of all partners in all phases of the research were the principles least applied. Themes that emerged from the second round of the Delphi included the identification of clear objectives based on the needs of the community, a shift from identification of the needs of the community to the implementation of strategies, and the creation of capacity-building opportunities for all stakeholders. Conclusion. In a reflection on the research process, the interprofessional team of academics found that the basics of CBPR should be attended to first. A focus on clear objectives, implementation strategies and capacity building is important in CBPR.

Although community-based participatory research (CBPR) projects continue to grow in popularity, their effectiveness in producing positive health outcomes is not well understood. Through the examination of the outcome data of such projects, the current study sought to (i) answer the research question, "what is the evidence that CBPR projects can generate intended health outcomes?" (ii) identify and assess attributes of CBPR initiatives which may be related to the production of positive health outcomes, and (iii) test the research hypothesis: the level of community participation in defining the research question combined with the level community participation in decision making positively predicts strength of intended health outcomes. A systematic assessment of the evidence of health outcomes in CBPR initiatives was completed, covering 1,019 CBPR publications. A descriptive analysis of the research literature was performed, and an inferential analysis was executed to test the research hypothesis. In terms of the research question, results indicated that little published evidence supports CBPR's effectiveness in changing health attitudes, knowledge, and behaviors. Outcomes may be influenced by duration of project and by selection of community of interest. Results from the inferential analysis did not support the research hypothesis. No relationship was found between level of community participation in defining the research question and decision making, and the strength of health outcomes. Findings from the statistical tests were limited by the small sample size. Implications for CBPR theory, research, and practice are discussed.

Regular physical activity has positive effects on both physical and mental health. Nevertheless, socially disadvantaged women are often insufficiently physically active. Through needs-based physical activity offers, community-based participatory research (CBPR) projects have the potential to reach these women and increase the effectiveness of physical activity interventions by supporting women's empowerment, health, and health behaviors. This study aimed to examine socially disadvantaged women's views on the effects of long-term participation in Bewegung als Investition in Gesundheit (BIG, i.e., movement as an investment in health), a long-standing German CBPR project, on their health and health behavior. Semi-structured qualitative interviews were conducted with 30 participating women at five BIG sites across Germany between April and August 2022. The interviews were recorded, transcribed verbatim, and analyzed using framework analysis. Women reported that participation in BIG classes contributed to their physical, mental, and social health. For many women, the positive effects on their mental and social wellbeing were most important. In addition to increased fitness and improved physical endurance, many participating women were able to expand their social networks, thus receiving further social support, and improve their self-esteem, self-confidence, and self-efficacy. Furthermore, participation in BIG physical activity classes positively influenced the health awareness of many women helping them to improve their activity level and diet over time. Our results suggest that CBPR projects, such as the BIG project, can increase physical activity among socially disadvantaged groups and contribute to their overall health and wellbeing. CBPR projects could thus be considered a key element of health promotion for this target group. Future interventional research is required to confirm and further explore the effects of CBPR interventions and to examine whether the effects can be replicated in other settings.

Influenced by Cooke and Kothari's (2001) suggestion that participation “remains a way of talking about rather than doing things” (p. 32), we question to what extent this is true in the public health funding process. Thus, the aim of this article was to investigate the ways in which recent National Institutes of Health (NIH)-funded community-based participatory research (CBPR) projects discursively positioned CBPR in their grant applications. We collected 17 NIH-funded CBPR proposals, analyzed them using a grounded theory approach, and subjected the findings to critical analysis focusing on the definition of community, the type of community “participation” promoted, and the nature of the research proposed. We conclude that certain types of CBPR projects are privileged in the funding review process and discuss the implications of these findings for future CBPR praxis.

There is a consensus about the benefits of community-based participatory research and the important role it can play in reducing cancer health disparities. Although every community-based participatory research project is unique in many ways, several fundamental issues deserve consideration. We discuss issues concerning community representation, possible tensions within community-based participatory research (CBPR) projects, and staffing CBPR projects. Flexibility, open-mindedness, transparency, and above all, caring, are characteristics that best ensure successful and rewarding outcomes.

This study describes findings from a qualitative, community-based participatory research project with rural communities. Using ethnographic techniques and a phenomenological approach, our aim was to collect and analyze data focused on the lived experience of dementia in rural communities to inform appropriate program development and interventions. Community-based researchers conducted 63 interviews with formal dementia care providers and community-dwelling older adults in northern rural Minnesota. Data were organized and analyzed using QSR NVivo. Findings identify the socio-cultural and environmental aspects of rural spaces, along with rural Alzheimer’s disease and related dementias (ADRD) care accessibility, as cross-cutting themes to guide a socio-ecological model of care. Results provide insight into needs, barriers and opportunities at the level of the home, clinic and community, that require policy intervention across those three levels. For example, technological solutions in the home, dementia education in the clinic, and addressing spatial isolation in the community. Centering community voices and perspectives revealed gaps in our understanding how rural contexts shape community experiences with ADRD, which can inform actionable strategies and interventions. Results from this study identify the need for educational interventions and clinical approaches to improve care, unique challenges and adaptations that could facilitate aging in place, and assets in rural communities that can support persons living with dementia and their caregivers. These results can be used to create highly tailored programming, interventions, and policies for rural populations that are impacted by ADRD.

Community-based participatory research (CBPR) is an approach that involves community members in research, not as research participants, but as partners. However, few studies have examined CBPR projects conducted among African Americans with serious and persistent mental illness (SPMI). This article focuses specifically on the Inspiring Change (IC) model, which includes a leadership trio comprised of an academic researcher, health service provider and an African American with lived experience of SPMI. Our purpose is to investigate how the IC model shapes not only how research is conducted but how research is understood and experienced by the community. We achieve this purpose by (1) describing an innovative CBPR model and pilot projects that involved African Americans with SPMI in all stages of the research project; and (2) presenting findings from qualitative interviews conducted with CBPR team members about strengths, challenges and leadership particular to this model of CBPR, an area rarely explored in CBPR literature. With the guidance of an advisory board and the manualised IC curriculum, two CBPR teams initiated and conducted nine-month long research projects focusing on health disparities for African Americans with SPMI. Members of the two CBPR teams (n = 13), which included individuals with lived experience, service providers and researchers, completed qualitative interviews. Benefits of CBPR projects included opportunities to learn, a sense of purpose in helping others and increased trust of research participants. Challenges pertained to disorganisation of leadership, lack of transparency with compensation, time pressures and interpersonal conflicts. These challenges highlight the importance of preparing and supporting those from both academic and lived experience backgrounds in skills necessary to thrive in leadership roles for CBPR projects.

BackgroundPatient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.Research Design and ObjectiveAn interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.FindingsThirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.Discussion and ImplicationsInternational projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.Patient or Public ContributionPPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Acceptability and feasibility of a community based participatory research project comparing cytology and urine HPV DNA testing for cervical cancer screening in Yap, Federated States of Micronesia

BackgroundPatient and public involvement/engagement in research on dementia is not new, but it is becoming increasingly common. The objective of this study was to describe researchers’ knowledge, attitudes, and activities related to engaging people with lived experience of dementia in research, and how these differ by research theme.MethodsData were from an online, anonymous survey of researchers within the Canadian Consortium on Neurodegeneration in Aging.ResultsOf the 84 researchers who completed the survey (response rate: 27%), 89% agreed they understood the meaning of engaging people with lived experience in research, although this was lower among biomedical researchers. Almost all (93%) agreed that people with lived experience could contribute meaningfully to research, and nearly two-thirds were already incorporating engagement in their research. Some engagement practices reported differed by research theme. Irrespective of the type of research they conduct, researchers were most often motivated by improving the relevance and quality of their research.ConclusionsThese findings support an optimistic outlook for engaging people with lived experience of dementia in research, but identify differences across research themes. Understanding approaches to incorporate, evaluate, and adapt engagement activities across research disciplines are needed to enable researchers, as well as others involved in research, to develop and target strategies for patient and public involvement/engagement in research on dementia.

BackgroundPatient ‘engagement’ or ‘involvement’ in health research refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers) in the research process – not as study subjects, but as collaborators in planning, conducting and communicating research. Patient engagement is being advanced by researchers, funding organisations, advocacy groups and others on both moral and methodological grounds. Although patient engagement in research on dementia is not new, it is becoming more common. Still, there are unresolved questions of how to incorporate, evaluate and adapt engagement activities for different types of research.MethodWe are reporting results of a survey of researchers who are members of the Canadian Consortium on Neurodegeneration in Aging (CCNA), conducted to understand their perceptions of engaging people with lived experience of dementia in research.ResultThere were 84 responses (27% response rate). Respondents included biomedical (n=10; 12%), clinical (n=35; 42%), health services (n=27; 32%) and social/cultural/environmental/population health (n=12; 14%) researchers. Overall, almost all (n=78; 93%) agreed that people with lived experience of dementia can contribute meaningfully to the research process. Nearly two thirds of respondents (n=54; 64%) indicated their research already included engagement activities and the most frequently reported motivations were to increase the quality and relevance of the research and empower people who have lived experience of dementia. They reported engagement activities took place most often in the context of knowledge translation, priority setting and study recruitment. Of those who indicated no current engagement activities (n=30; 36%), most were interested in opportunities for engagement and, for those who were not interested, the most common reason reported was that it was not relevant to their area of research. Limitations to these results include the low response rate that likely introduced some selection bias; researchers with an interest in engagement may have been more likely to respond.ConclusionMany CCNA researchers working in the area of dementia are engaging people with lived experience in their research. These data will be used to describe how researcher knowledge, attitudes and activities differ according to type of research.