scholarly journals Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research (Preprint)

2020 ◽  
Author(s):  
Laura Lapadat ◽  
Anusha Balram ◽  
Joanna Cheek ◽  
Eugenia Canas ◽  
Andrea Paquette ◽  
...  
Keyword(s):  
Bipolar Disorder ◽  
Data Analysis ◽  
Participatory Research ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Academic Community ◽  
Self Management ◽  
Community Based ◽  
Action Project ◽  
Peer Researchers

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

scholarly journals Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research

10.2196/19475 ◽  
2020 ◽  
Vol 12 (3) ◽  
pp. e19475
Author(s):  
Laura Lapadat ◽  
Anusha Balram ◽  
Joanna Cheek ◽  
Eugenia Canas ◽  
Andrea Paquette ◽  
...  
Keyword(s):  
Bipolar Disorder ◽  
Data Analysis ◽  
Participatory Research ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Academic Community ◽  
Self Management ◽  
Community Based ◽  
Action Project ◽  
Peer Researchers

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.

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

2019 ◽  
Vol 5 (1) ◽  
pp. 21-35
Author(s):  
Melinda J. Suto ◽  
Sara Lapsley ◽  
Anusha Balram ◽  
Steven J. Barnes ◽  
Sharon Hou ◽  
...  
Keyword(s):  
Bipolar Disorder ◽  
Participatory Research ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Self Management ◽  
Delphi Consensus ◽  
Community Members ◽  
Community Based ◽  
Personal Reflections ◽  
Five Phases

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. 

The “Sticky Notes” Method: Adapting Interpretive Description Methodology for Team-Based Qualitative Analysis in Community-Based Participatory Research

2021 ◽  
pp. 104973232110024
Author(s):  
Heather Burgess ◽  
Kate Jongbloed ◽  
Anna Vorobyova ◽  
Sean Grieve ◽  
Sharyle Lyndon ◽  
...  
Keyword(s):  
Data Analysis ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
Interpretive Description ◽  
Community Based ◽  
Step Process ◽  
Sorting Data ◽  
Data Fragmentation ◽  
Hiv Research ◽  
Mind Maps

Community-based participatory research (CBPR) has a long history within HIV research, yet little work has focused on facilitating team-based data analysis within CBPR. Our team adapted Thorne’s interpretive description (ID) for CBPR analysis, using a color-coded “sticky notes” system to conduct data fragmentation and synthesis. Sticky notes were used to record, visualize, and communicate emerging insights over the course of 11 in-person participatory sessions. Data fragmentation strategies were employed in an iterative four-step process that was reached by consensus. During synthesis, the team created and recreated mind maps of the 969 sticky notes, from which we developed categories and themes through discussion. Flexibility, trust, and discussion were key components that facilitated the evolution of the final process. An interactive, team-based approach was central to data co-creation and capacity building, whereas the “sticky notes” system provided a framework for identifying and sorting data.

Supporting Self-Management and Quality of Life in Bipolar Disorder with the Beta PolarUs App: Protocol for a Mixed-Methods Study (Preprint)

2022 ◽  
Author(s):  
Erin E Michalak ◽  
Steven J Barnes ◽  
Emma Morton ◽  
Heather O'Brien ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Self Management ◽  
Community Based ◽  
Self Monitoring ◽  
Web Based ◽  
Beta Version

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.

Emotional and Behavioral Aspects of Diabetes in American Indians/Alaska Natives

2016 ◽  
Vol 44 (1) ◽  
pp. 70-82 ◽  
Author(s):  
Lisa J. Scarton ◽  
Mary de Groot
Keyword(s):  
Type 2 Diabetes ◽  
Participatory Research ◽  
American Indians ◽  
Community Based Participatory Research ◽  
Alaska Natives ◽  
Self Management ◽  
Community Based ◽  
Behavioral Aspects

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.

scholarly journals Towards a Better Future for Canadians with Bipolar Disorder: Principles and Implementation of a Community-Based Participatory Research Model

2015 ◽  
Vol 1 (1) ◽  
Author(s):  
Erin E. Michalak ◽  
Kathleen Lane ◽  
Rachelle Hole ◽  
Steven J. Barnes ◽  
Nasreen Khatri ◽  
...  
Keyword(s):  
Bipolar Disorder ◽  
Participatory Research ◽  
Knowledge Exchange ◽  
Community Based Participatory Research ◽  
Psychosocial Interventions ◽  
Community Members ◽  
Community Based ◽  
Services And Supports ◽  
Health Field

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. 

Application of Community-Based Participatory Research Methods to a Study of Complementary Medicine Interventions at End of Life

2005 ◽  
Vol 10 (2) ◽  
pp. 91-104 ◽  
Author(s):  
Anna-leila Williams ◽  
Peter A. Selwyn ◽  
Ruth McCorkle ◽  
Susan Molde ◽  
Lauren Liberti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Complementary Medicine ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
Academic Community ◽  
Open Communication ◽  
Community Based ◽  
End Stage

Community-based participatory research (CBPR) principles can be successfully applied to the design and implementation of a complementary medicine study for adults with end-stage AIDS. The Yale Prevention Research Center partnered with Leeway, Inc., an AIDS-dedicated nursing facility, and other academic and clinical entities to conduct a randomized, controlled pilot trial of meditation and massage on quality of life at the end of life. Using CBPR principles, a methodology was developed that was scientifically rigorous, highly respectful, and acceptable to the 91% minority study population. Using continuous, open communication among all involved parties, challenges were satisfactorily addressed in a timely manner. Fifty-eight residents (97% of those eligible) with end-stage AIDS participated from November 2001 to September 2003. Subjects received 1-month interventions of meditation, massage, combined meditation and massage, or standard care. The study of quality-of-life in end-stage AIDS poses unique challenges well met by applying CBPR principles to an academic-community research partnership.

scholarly journals Examining Neighborhood Social Cohesion in the Context of Community-based Participatory Research: Descriptive Findings from an Academic-Community Partnership

2017 ◽  
Vol 27 (Suppl 1) ◽  
pp. 329 ◽  
Author(s):  
Lori Brand Bateman ◽  
Mona N. Fouad ◽  
Bianca Hawk ◽  
Tiffany Osborne ◽  
Sejong Bae ◽  
...  
Keyword(s):  
Participatory Research ◽  
Social Cohesion ◽  
Community Based Participatory Research ◽  
Academic Community ◽  
Cross Sectional Survey ◽  
Community Based ◽  
Cross Sectional ◽  
Neighborhood Problems ◽  
Academic Center ◽  
Health Initiatives

<p class="Pa7"> <strong>Objective: </strong>The purpose of this article is to describe the process of conducting an assessment of neighborhood perceptions and cohesion by a community coalition-academic team created in the context of community-based participatory research (CBPR), to guide the design of locally rel­evant health initiatives.</p><p class="Pa7"><strong>Methods: </strong>Guided by CBPR principles, a collaborative partnership was established between an academic center and a lo­cal, urban, underserved neighborhood in Birmingham, Alabama to identify and address community concerns and priorities. A cross-sectional survey was conducted in September 2016 among community residents (N=90) to examine perceptions of neighborhood characteristics, including so­cial cohesion and neighborhood problems.</p><p class="Pa7"><strong>Results: </strong>The major concerns voiced by the coalition were violence and lack of neigh­borhood cohesion and safety. The com­munity survey verified the concerns of the coalition, with the majority of participants mentioning increasing safety and stopping the violence as the things to change about the community and the greatest hope for the community. Furthermore, results indicated residents had a moderate level of perceived social cohesion (mean = 2.87 [.67]).</p><p class="Pa7"><strong>Conclusions: </strong>The Mid-South TCC Aca­demic and Community Engagement (ACE) Core successfully partnered with community members and stakeholders to establish a coalition whose concerns and vision for the community matched the concerns of residents of the community. Collecting data from different groups strengthened the interpretation of the findings and allowed for a rich understanding of neighborhood concerns. <em></em></p><p class="Pa7"><em>Ethn Dis.</em> 2017;27(Suppl 1):329-336; doi:10.18865/ed.27.S1.329.</p><br /><p> </p>

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