scholarly journals Integrating Delphi Consensus Consultation and Community- Based Participatory Research

Author(s):  
Melinda J. Suto ◽  
Sara Lapsley ◽  
Anusha Balram ◽  
Steven J. Barnes ◽  
Sharon Hou ◽  
...  

Delphi consensus consultation methods and community-based participatory research (CBPR) are distinct approaches that have traditionally been employed separately. This paper explores the integration of Delphi methods with CBPR in a research project that sought to identify effective self-management strategies for bipolar disorder (BD). We introduce our Canadian-based network which specializes in CBPR in BD, and outline the key principles of CBPR approaches. Delphi consensus consultation methods are described and we present the five phases of our Delphi consensus consultation project, conducted within a CBPR framework. Examples of how each project phase incorporated the principles of CBPR are provided, as are personal reflections of community members involved in the project, and broader reflections on challenges commonly encountered in CBPR projects. 

2020 ◽  
Author(s):  
Laura Lapadat ◽  
Anusha Balram ◽  
Joanna Cheek ◽  
Eugenia Canas ◽  
Andrea Paquette ◽  
...  

BACKGROUND We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership—carried out by a team composed of academic, community, and youth partners—was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. OBJECTIVE The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. METHODS The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. RESULTS Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. CONCLUSIONS This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study. CLINICALTRIAL


10.2196/19475 ◽  
2020 ◽  
Vol 12 (3) ◽  
pp. e19475
Author(s):  
Laura Lapadat ◽  
Anusha Balram ◽  
Joanna Cheek ◽  
Eugenia Canas ◽  
Andrea Paquette ◽  
...  

Background We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership—carried out by a team composed of academic, community, and youth partners—was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. Objective The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. Methods The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. Results Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. Conclusions This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study.


Author(s):  
Erin E. Michalak ◽  
Kathleen Lane ◽  
Rachelle Hole ◽  
Steven J. Barnes ◽  
Nasreen Khatri ◽  
...  

The Collaborative RESearch Team to study psychosocial factors in bipolar disorder (CREST.BD) is a multidisciplinary network dedicated to advancing science and practice around psychosocial issues associated with bipolar disorder (BD), improving the care and wellness of people living with bipolar disorder, and strengthening services and supports for these individuals. CREST.BD specializes in community-based participatory research, in which research is conducted as a partnership between researchers and community members. This article describes the evolution of the CREST.BD network and CREST.BD’s commitment to community-based participatory research in bipolar disorder research. Examples of CREST.BD projects using community-based participatory research to study stigma, quality of life, psychosocial interventions, and creativity in bipolar disorder are highlighted, and opportunities and challenges of engaging in community-based participatory research in bipolar disorder specifically and the mental health field more broadly are discussed. This article demonstrates how CBPR can be used to enhance the relevance of research practices and products through community engagement, and how community-based participatory research can enrich knowledge exchange and mobilization. 


2022 ◽  
Author(s):  
Erin E Michalak ◽  
Steven J Barnes ◽  
Emma Morton ◽  
Heather O'Brien ◽  
Greg Murray ◽  
...  

BACKGROUND Quality of life (QoL) is increasingly recognised as a key outcome of self-management interventions for bipolar disorder (BD). Mobile phone applications (apps) can increase access to evidence-based self-management strategies and provide real-time support. However, while individuals with lived experience desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mHealth literature has shown that the desires and goals of end-users are not adequately taken into account during app development, and as a result engagement with mental health apps is suboptimal. To capitalise on the potential of apps to optimise wellness in BD, there is a need for interventions developed in consultation with real-world users that are designed to support QoL self-monitoring and self-management. Objective: This mixed methods pilot study is designed to evaluate the beta version of the newly developed PolarUs app, which aims to support QoL self-monitoring and self-management in people with BD. Developed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure, and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. OBJECTIVE The primary objectives of this project are to: (1) evaluate PolarUs app feasibility (via behavioral usage metrics); (2) evaluate PolarUs impact (via the Brief Quality of Life in Bipolar Disorders, QoL.BD scale, our primary outcomes measure); and (3) explore engagement with the PolarUs app (via both quantitative and qualitative methods). METHODS Study participants will be North American residents (N=150) aged 18-65 years with a DSM-5 diagnosis of BD-I, BD-II or BD not otherwise specified (NOS) as assessed by a structured diagnostic interview. An embedded mixed-methods research design will be adopted; qualitative interviews with a purposefully selected sub-sample (~n=30) of participants will be conducted to explore in more depth feasibility, impact and engagement with the PolarUs app over the 12-week study period. RESULTS At the time of publication of this protocol, the development of the beta version of the PolarUs app is complete. Participant enrollment is expected to begin in February 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS Beyond contributing knowledge on the feasibility and impacts of a novel app to support QoL and self-management in BD, this study is also expected to provide new knowledge on engagement with mHealth apps. Furthermore, it is expected to function as a case study of successful co-design between individuals living with BD, clinicians who specialise in the treatment of BD, and BD researchers, providing a template for future use of community-based participatory research frameworks in mHealth intervention development. Results will be used to further refine the PolarUs app and inform the design of a larger clinical trial.


2016 ◽  
Vol 44 (1) ◽  
pp. 70-82 ◽  
Author(s):  
Lisa J. Scarton ◽  
Mary de Groot

American Indians and Alaska Natives (AI/ANs) bear a disproportionate burden of diabetes and associated long-term complications. Behavioral interventions play a vital role in promoting diabetes medical and psychological outcomes, yet the development of interventions for AI/AN communities has been limited. A systematic review was conducted of studies focused on the psychosocial and behavioral aspects of diagnosed diabetes among AI/ANs. Ovid and PubMed databases and published reference lists were searched for articles published between 1987 and 2014 that related to the psychosocial and behavioral aspects of type 1 or type 2 diabetes in the AI/AN population. Twenty studies were identified that met the inclusion criteria. Nineteen studies were observational and one study was intervention based. Two of the studies used community-based participatory research methodology. Of the 20 studies, 2 discussed cultural influences associated with diabetes self-management and 10 identified the specific tribes that participated in the study. Tribal affiliations among the studies were broad with the number of AI/AN participants in each study ranging from 30 to 23,529 participants. Emotional and behavioral topics found in the literature were adherence ( n = 2), depression ( n = 9), physical activity ( n = 3), psychosocial barriers ( n = 1), social support ( n = 3), and stress ( n = 2). Relatively few studies were identified using AI/AN populations over a 27-year period. This is in stark contrast to what is known about the prevalence and burden that type 1 and type 2 diabetes mellitus place on AI/AN communities. Future research should promote community engagement through the use of community-based participatory research methodologies, seek to further understand and describe the emotional and behavioral context for diabetes self-management in this population, and develop and test innovative interventions to promote the best possible diabetes outcomes.


Author(s):  
Tracey Marie Barnett

Community-based participatory research (CBPR) embraces a partnership approach to research that equitably involves community members, organizational representatives, social workers, and researchers in all aspects of the research process. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change. It is community based in the sense that community members become part of the research team and researchers become engaged in the activities of the community. Community–researcher partnerships allow for a blending of values and expertise, promoting co-learning and capacity building among all partners, and integrating and achieving a balance between research and action for the mutual benefit of all partners. Various terms have been used to describe this research, including participatory action research (PAR), action research (AR), community based research (CBR), collaborative action research (CAR), anti-oppressive research, and feminist research.


2007 ◽  
Vol 29 (3) ◽  
pp. 22-26
Author(s):  
Sara Curtin-Mosher ◽  
Elizabeth Leo

This paper speaks to a potential dilemma between the R and the CBP of Community Based Participatory Research (CBPR) within the context of a partnership called the Asociación de Reforestación de Ambos Nogales (ARAN). We focus on the relationship between students and educators from the University of Arizona (UA) and two high schools from Nogales, Sonora, Mexico that constitute part of this organization. ARAN has been influenced by but not restricted to a framework of CBPR where community members and academics engage in all aspects of research.


Author(s):  
Tarun Reddy Katapally ◽  
Sylvia Abonyi ◽  
Jo-Ann Episkenew ◽  
Vivian Ramsden ◽  
Chandima Karunanayake ◽  
...  

 Assess, Redress, Re-assess: Addressing Disparities in Respiratory Health Among First Nations is an ongoing community-based participatory research initiative involving two First Nations communities in Saskatchewan. The initiative’s rationale is grounded in the ethos of transformative community-based participatory research and facilitated through integrated knowledge translation with the aim of building community capacity. The initiative’s goal was to engage community members to actively participate in all research phases, from the development of the research questions to dissemination of results and evaluation of community-chosen interventions that evolved from the results. After baseline assessment of predictors and indicators of respiratory health, a program of integrated knowledge translation was adopted. As part of this program, a community-researcher collaboration was put in place that produced two knowledge translation symposia. The two symposia have brought together First Nations community members, interdisciplinary researchers, federal and provincial policy makers, and multiple Aboriginal organizational stakeholders. The symposia provided a pathway for knowledge synthesis and sharing to ultimately integrate knowledge into practice and enable First Nations’ community capacity building in addressing and redressing critical respiratory health issues. This article delineates the processes involved in developing this model of integrated knowledge translation and highlights the continuing engagement with the participating communities supported by Knowledge Translation (KT) Symposia.


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