Bipolar Youth Action Project
The Bipolar Youth Action Project (BYAP) is a youth-led action research project in response to a knowledge gap about effective self-management strategies for youth with bipolar disorder. BYAP is funded by the Vancouver Foundation, and carried out in partnership between CREST.BD and the Stigma-Free Society (formerly Bipolar Disorder Society of BC). To view or share our study outputs, please click here.
The project is designed to be empowering to youth. It works to build knowledge on how youth living with bipolar disorder live well with the condition, and to identify innovative ways for sharing this knowledge with peers, families and healthcare providers. Knowledge gained from this project is informing the development of appropriate resources to support youth self-management and enhanced capacity for self-care in this community.
Importantly, BYAP also builds capacity for youth to engage in mental health research. The project is proudly co-led by a team of 7 youth peer researchers (the Youth Action Group, or YAG) who all live with bipolar disorder. The YAG is based in Victoria, BC, and guides data collection, analysis, and dissemination, while gaining skills in research methods, writing and event planning. YAG training has been guided by Mind Your Mind, a fabulous organization specializing in youth engagement.
Engaging Youth with Bipolar Disorder
The core questions that BYAP addresses are:
- What self-management strategies are effective for young people with bipolar disorder?
- When we know what self-management strategies work for youth with bipolar disorder, what is the best method for sharing this information with other youth, their families and the community?
Youth who live with bipolar disorder are integral to each of BYAP’s four research phases.
PHASE 1 consisted of establishing the YAG and training the youth in research methods within a CBPR framework. The YAG are 7 young adults (19 to 25), living with BD, and residing in Victoria. Ongoing research training and support for the YAG members occur through all study phases.
PHASE 2 entailed the YAG designing and conducting, with support, the first of two Research Forums. The purpose of Forum 1 was to create a venue for mutual learning and knowledge exchange and consult, within a CBPR framework, with 20 youth with BD on their personal strategies for wellness. Methods for the forum were determined by the YAG members and included blended consultation, qualitative, quantitative and arts-based methods.
PHASE 3 entailed the YAG collating and interpreting the findings from Forum 1. Reports, as well as other outputs such as blogs, were produced to share the findings. Forum 2 was designed and implemented, similar in nature to Forum 1 but with the purpose of identifying the best methods for sharing the knowledge gathered in the Year 1 Forum.
PHASE 4 entailed the YAG developing a plan to share the knowledge gained. Participants focused their energies on developing youth appropriate outputs that could be shared peer-to-peer. We imagine, however, that parents, family and supports of youth will be interested in the study findings.
Delphi Consensus Consultation Study
Findings from CREST.BD research has shown that people with bipolar disorder can live well with the condition, experiencing good health and quality of life. Key to this is identifying and implementing effective self-management strategies. Self-management strategies are the things people do for themselves to cope with or improve a health condition. While there is a growing literature on effective self-management strategies for bipolar disorder, there was a gap in the science about self-management strategies that work for stopping progression into hypomania or mania. Further, little previous research has explored the impact of combining Delphi methods with Community-Based Participatory Research (CBPR) methods. The CREST.BD Delphi project was designed to fill these gaps.
This study investigated self-management strategies for:
- Maintaining balance in mood, and;
- Stopping progression into hypomania/mania.
Thinking Differently about Bipolar Disorder Expertise
The Delphi study invites us to think differently about bipolar expertise. Bipolar disorder research has mostly occurred in traditional research environments – ones where scientific and academic expertise are given more weight than lived experience of people living with the condition or clinical knowledge of healthcare providers who support people with bipolar disorder. Yet, that there are many ways of generating knowledge not captured by this approach. Delphi studies give equal consideration to scientific, clinical and lived experience expertise.
In ancient Greece, an oracle was an individual who gave wise counsel or predictions about the future. The oracle of Delphi was the most revered. Today, we recognize that wise counsel is more likely achieved when considering a collection of voices. Delphi Consultation methods do just that. Modern Delphi methods solicit input from multiple experts, contributing independent views and ratings in an iterative process aimed at achieving substantial consensus, often online.
The Approach We Took
In order to identify the common components of BD self-management, Delphi Consensus Consultation methods were used within a Community-Based Participatory Research framework across five study phases:
- Phase 1. Re-analysis of data from a previous CREST.BD study
- Phase 2. Academic and grey literature reviews
- Phase 3. Content analysis
- Phase 4. Two Delphi rounds
- Phase 5. Quantitative analysis and interpretation
Participants were people with bipolar disorder and expert bipolar disorder healthcare providers, who were recruited internationally from the CREST.BD network and beyond.
What were the results?
Amazingly, study phases 1 and 2 identified 4202 potential self-management strategies – 3709 of these were discarded because they were duplicates or unintelligible. The remaining 493 were assessed via Delphi Consensus Consultation in phase 4: 101 people with BD and 52 healthcare providers participated in Round 1; 83 of the BD panel (82%) and 43 of the healthcare provider panel (83%) participated in Round 2—exploratory factor analysis was conducted on Round 2 results. You can read the full results from the Delphi study in this paper (scroll to page 7 of the PDF for a full list of the strategies).
Our Delphi project was made possible via funding from the Coast Capital Depression Research Fund.