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The First Bipolar Youth Action Project Forum by Anna Graham, Youth Peer Researcher

After careful planning and organization, the day for the first Bipolar Youth Action Project finally arrived. We set out to make our mark in the world of bipolar disorder (BD) research and we were ready to make it happen. Our goal was to find out what helped youth with BD to live meaningful and healthy lives: what skills they employed, and what tools they used to keep themselves balanced and well while living with the disorder. After a day filled with fun, new insights, and a plethora of information, we have gathered invaluable data that will help shed light on our cause.

The day was ready to begin with all the food, tables, and chairs set up in our space. Our 21 forum participants, all youth who live with BD, came through the doors, registering and acquainting themselves with each other and with the members of the BYAP. As everyone got settled introductions were made and the tone was set for the day — we were in for a lot of fun and information gathering. Throughout the day we had Erin Stewart Elliott, our graphic facilitator, creating images to represent what we were accomplishing that day. Erin’s graphic record outlined our journey as it developed, creating a unique visual reminder of what we had done. She began her process at the beginning of the forum and we watched as her drawings and words captured the feel and energy of the information that was being presented that day.

The participants then formed into groups in order to prepare for the focus group portion of the forum. The participants were organized into 4 groups with a facilitator asking questions and managing the flow of the conversation and a co-facilitator supporting and taking notes. This was the crucial portion of the forum, the time to gather data that we will organize and then present during our next forum. In the focus groups, we discussed methods for wellness and achieving balance and stability. It was an honest and unique view of how youth stay well while living with BD. After the focus groups were finished we broke for lunch and enjoyed delicious sandwiches and salads!

Then to finish off the day we had our workshops. The workshops were run by the BYAP members and covered topics such as mindfulness and how to live successfully and happily while not letting your disorder define who you are. The workshops were great, with lots of participation and interest. Laura walked us through a mindfulness segment in which we used a piece of chocolate to find ourselves in a state of calm and mindfulness; it was very effective and well received by the participants! Michelle and Alan also did a mindfulness exercise that taught us how to live within the present moment.

Overall the day was fantastic, and was successful in achieving its goal of finding new information to help in understanding how youth live well with bipolar disorder. Now we prepare for Forum 2, where we’ll share the information we collected in Forum 1! It will be an amazing way for people to see what self-management strategies are employed by youth and how they manage living with BD and staying well. I feel so grateful for being able to participate in such a meaningful project and can't wait for the next installment to get underway! 

An Inspiring Journey Through the Bipolar Youth Action Project

I am excited as things progress with the Bipolar Youth Action Project (BYAP); you may wonder what is this project all about anyway? Well, CREST.BD, a research network situated out of the University of British Columbia and the Bipolar Disorder Society of BC (BDSBC) have teamed up to make innovative and unique magic! Erin Michalak is the co-lead researcher on the project and Sally McBride is the Knowledge Translation Manager.

We are hiring peer researchers to form two Youth Action Groups (YAGs) who are 19-25 years that have bipolar disorder to research self-management strategies on how to stay well living with bipolar disorder. They will use this data to not only help themselves, but spread the word into the larger bipolar youth community. We have two planned pods of researchers, six in Victoria, BC and the another six in the Comox/Campbell River, Courtenay areas. We also plan to create two research forums that will be designed by the youth themselves. For more information about the BYAP please visit the following link: http://bipolarbabe.com/bipolar-youth-action-project

I am writing this blog to express how I have been feeling about the project and to share progress on the BYAP. Subsequent to creating two monster databases for the project of medical professionals, I was eager to begin and now recruitment is in full swing. My newly found relationship with CREST.BD has been an exemplary example of how to build a foundation for a solid working relationship. Nusha Elliot and I have been recruiting in the two designated areas and working closely together to ensure we have the young adults we need to make the project a success. We have been contacting a great number of relevant community organizations to share the project and in Victoria we already have three super star submissions for the YAGs! They are all current or past participants of the Teens2Twenties peer support group created by the BDSBC. We have an additional four young adults that have committed to submitting applications by mid-August and they are amazing individuals.

The most exciting part of the project has been connecting with the potential participants and sharing my excitement with them on a personal level. Many have expressed their desire to take on the project over a two-year term for their own reasons such as stomping out stigma, building their resume, helping other people stay well, express their creativity, and most of all be a part of something meaningful. The BYAP has captured my heart and I will do everything in my power to see it be successful by effectively working with CREST.BD and dedicating myself to the youth that have been chosen as the YAGs. It is my personal privilege to have them learn from us, but more importantly learn from them. As we move forward, I have nothing but great hope for all the hard work we have invested so far; the results will no doubt help many youth with bipolar disorder, which has always been my life’s vision and mission. This project is enriching my life and I am so grateful for all the people who are making this project happen. Thank you! heart

Please visit us on our Facebook page for updates on the Bipolar Youth Action Project.

CREST BD Inspires the Bipolar Babe at their Annual Network Meeting

I recently had the pleasure of attending CREST BD’s Annual Network Meeting. It was a thrill to be in Canmore, Alberta for three days, meeting the real live people that make up the CREST BD network. The Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST BD) is a multidisciplinary network of researchers, health care providers, and people living with the condition. They are dedicated to research, and knowledge exchange about psychological and social factors in bipolar disorder. Their aim is to enhance the health and wellness of people living with bipolar disorder.

CREST BD is unlike any other organization that I have come across for they undertake original and unique research into the psychological and social elements of bipolar disorder. They empower people to get involved in their research in a new and unique way.

Dr. Erin Michalak is the leader of CREST BD and created the network with a knowledgeable team because she saw a lack of research in the psychological and social factors that affect bipolar disorder. Treatment does not end with medication, and there is so much more that can be done to stay well; the work that CREST BD does is to research and explore exactly how people can and do manage their disorder. CREST BD performs important work for they assess important aspects of bipolar disorder such as the quality of life of people who live with bipolar disorder.

As I looked around the conference room in Canmore I saw many smiling faces and bright minds from across the globe. Network members from Canada, China, United States, Australia, England, and so many more places. There were people from the network from the areas of social work, psychology, psychiatry, nursing, etc. The network also had many people with lived experience at the conference as they see the value of bringing first-hand knowledge to the table.

Some of the work that CREST BD has done is extremely noteworthy, but for the purpose of this blog I will highlight a few areas that I personally admire.

The Delphi Consensus Consultation Study -Findings from this study found that some people who live with bipolar disorder in British Clumbia identify and employ strategies to live well with the condition and experience good health and quality of life as a result. 

Quality of Life BD Scale – People with bipolar disorder can learn to undertake a self-assessment of QoL: after completing the scale, the results will outline implications that an individual with bipolar disorder can draw from to address treatment and self-management goals.

-Network member, Victoria Maxwell explores the method of theatre and Knowledge Exchange (KE) through the arts. Having personally met Victoria a number of times I initially did not have the opportunity to see her live performance called ‘That’s Just Crazy Talk!’ However during my time in Alberta I did! This YouTube video will give you a short preview into her amazingly powerful world and presentation.

My brightest highlight from the conference was having the opportunity to share the Bipolar Youth Action Project in a presentation format called the PechaKucha in exactly 6 minutes and 40 seconds. I was nervous to say the least, but as soon as I looked around the room, I realized something important. These people are here to see me succeed and not have me fail. That is the CREST BD way – working together to be successful in our work together, and helping many others along the way.

Collaboration, connection, and cohesiveness are a few of the concepts that I left the conference with last week, and they are now what I bring forward in the work that I do with CREST BD.  

 

My Knowledge Translation Journey: Supporting the Promotion of Activated Research and Knowledge (SPARK) Training Workshop

The SPARK Training Workshop is an initiative created by the Mental Health Commission of Canada (MHCC) to help participants learn techniques for moving evidence-informed research and knowledge from the fields of mental health, substance use and addictions more quickly into practice. SPARK brings together dozens of participants within Canada for two and a half days of training with internationally respected knowledge translation professionals, followed by ongoing mentoring in groups. Ideally, participants come from diverse areas of mental health and different geographic locations within Canada.
 

The goal of the workshop is to learn and apply a concept called knowledge translation (KT). The complexities of the application of this concept heavily occupied my mind for the entirety of my 2 days spent at the conference in Winnipeg. Initially, I found it extremely difficult to define what KT actually is, and I came to the conclusion that bringing knowledge into action was a first assured step toward understanding a portion of the KT concept, and this was enough to move me forward.
 

The Knowledge Translation Plan and the 'A-Ha' Moment

On the second day, it really struck me once we learned about ‘methods’ in regards to KT, and all of what I had been learning seemed to begin to make a lot more sense. We approached and discussed the arts as a way of expressing findings in the context of our projects. Perhaps interpretative dance, singing, theatre, drama, video and/or poetry. It dawned on me that for a concept that I found so confusing; I actually have been applying knowledge translation in my work with Bipolar Babe for quite some time and did not even know it. For instance, I perform school classroom presentations and share my personal story of living with bipolar disorder, and this is the way in which I come from a place of knowledge, and express and communicate these findings through these presentations. This is actually KT translation through the arts and my ‘a-ha’ moment appeared later in the second day, which initially came from a place of discouragement to hopefulness that I could actually draft my own KT plan.  
 

The Bipolar Youth Action Project and the Knowledge Translation Plan

The Bipolar Youth Action Project (BYAP) has commenced in partnership with CREST BD, and we plan to explore and research wellness strategies for youth with youth who live with bipolar disorder. We also plan to work with the youth to design and launch two forums dedicated to youth and young adults that have bipolar disorder.
 
When I first approached the KT plan, I anticipated that I would have to do something that encapsulated the entire project, which perhaps included the uptake and execution of the youth researchers’ knowledge in regards to wellness strategies. Too big, too unmanageable, literally impossible, so I decided to scale it down significantly.
 
As I focused in on the BYAP, and viewed the entire 2 year-long project in pieces, I realized that the KT plan had to be simple and focused on one small area. As I searched for my greatest interest in one component of the project, my mind veered to the first forum. How would the youth be able to exchange their knowledge about the forum and promote it within the larger community to recruit others?
 

This Co-Lead Researcher’s Knowledge Translation Plan

 
My KT plan allows me to select a purpose, choose an audience to target, apply the methods necessary to execute the plan, and anticipate any possible barriers that may come our way.  
 
Purpose: Youth Action Groups Promote the Youth Forum in Victoria
 
Audience: The Youth Researchers and the Forum of 50 youth and young adults
 
Methods: Social Media is an effective medium applied by the youth to recruit other youth with bipolar disorder to the Forum in Victoria. My role is to be the mentor and coach who guides the youth in this process.
 
Barriers: How will we figure out getting the information out there effectively? Training the youth may also pose as a barrier and having to give up some of my control is something I will have to learn to do. However, in recognizing that there will be barriers assures me that they will be considered and dealt with before these barriers become an issue.
 

Next Steps for the Bipolar Babe and KT

 
As I sketch this KT plan it feels pretty ‘bare bones’ at the moment, but I trust that as times goes on, the plan will grow with feedback from others, and my own personal insight. To compliment this KT plan, I will make yet another KT plan to set out a path for me to contact the youth agencies in Victoria that will be key in moving the BYAP forward. Many of these organizations will have insight into youth engagement, and perhaps even recruitment for the Bipolar Youth Action Groups and forums. It is simple KT technique to design a way to communicate my knowledge of the project and move into action; the engagement of these vitally important agencies. Perhaps, I will draft a questionnaire or create another medium/method for information dissemination and communication purposes as I approach them.  I realize now that many of us are conducting KT in several aspects of our work, but the majority of the time we do not even know we are doing it.
 
I feel grateful for having had the opportunity to learn about KT at the SPARK conference because it allows me to define a plan for the many activities that I will be performing during the Bipolar Youth Action Project, which will set us up for success along the journey that lies ahead.  

 

 

Simply the B.E.S.T.

I attended a Quality of Life Community Engagement Day in Vancouver a few weeks ago with CREST BD. We were discussing assessing wellbeing via the web.

They shared the most interesting ‘tool’ called the BiQoL scale which is an online questionnaire to empower people with bipolar disorder to manage and improve their health.

We assembled into focus groups and discussed the BiQoL scale and my first opinion was that the name needed to be changed to B.E.S.T – Bipolar Empowerment Survey Tool.  I thought this was the ‘best’ name as CREST BD even used the word ‘empower’ to describe the BiQoL scale and it got me thinking what it meant for younger people.  (I will call the BiQoL scale B.E.S.T for the purpose of my blog.)

Youth are tech savvy and ought to be contributing to the development of the B.E.S.T.  Youth know what appeals to the tech savvy population, what options to highlight and how best to design an online platform for other youth who are indeed the techy generation.  Youth are more inclined to sit down at the computer for a mere ten minutes and assess their well-being rather than sit in a doctor’s office with a pencil and paper for a half an hour.  Results are tabulated instantly and we all know how our Y generation love to have things fast! 

Bipolar disorder generally has an onset between the ages of 18-25 and the B.E.S.T may be useful in having youth who are not diagnosed think about their health and consider potential symptoms by taking the questionnaire.  The B.E.S.T is not necessarily a tool to diagnose mental illness but is definitely something that gets people thinking about and assessing their mental health and this is a positive and powerful component of the B.E.S.T.  Young people are curious and they are inclined to take a variety of tests or questionnaires when they are online, so what an amazing opportunity to be able to take the B.E.S.T and benefit them in their assessment of their mental health and have fun at the same time!  B.E.S.T could potentially have a very positive and significant impact on youth because it is assessing things such as sleep, nutrition, mood, and social interactions.  Even if youth do not have a mental illness it brings these important items to the forefront, questioning their relevance and the impact that they play in their lives.  We all know that these types of facets are important, but rarely are we reminded at the B.E.S.T of times.  Lastly, this tool reminds us that we not only need to take care of ourselves now but we need to pay attention to our mental health and monitor it while using the B.E.S.T and returning to it to evaluate how we are doing over a longer period of time.

The B.E.S.T is an innovative and amazing tool that is ground breaking for our youth and all alike and will no doubt make a difference for those wanting to be empowered in the journey of exploring, monitoring and managing their mental health.

The Bipolar Youth Action Project – Pilot Summary

Yesterday, five youth and I took to the XrayLima Co. boardroom in Victoria, BC, sat around a table and dialed in psychologist and researcher Erin Michalak from CREST.BD.  There were several questions that Erin and I had for the group and as we design  our ‘Bipolar Youth Action Project’. It proved invaluable to partake in conversations with youth with bipolar disorder.  We began with exploring how they stay well in the first place.  There were an array of strategies described – two big topics of discussion were exercise and meaningful engagement in activities.  A variety of kinds of exercise were described, from riding a bike through downtown Victoria or strolling around Thetis Lake.  The youth we spoke to also engaged in a diverse array of activities: work, challenging studies, or doing anything constructive to help maintain positivity  and balance. 

Laughs were shared and the creative juices started boiling when asked “how should we communicate all of this important information on staying well with other youth with bipolar disorder?”  The group had some great ideas around social media. Facebook of course is popular and powerful, and was seen as a great way to get out the word that ‘youth ought to be talking about their mental health.’  The group explored the possibility of communicating this same message through various channels, such as a school assembly presentation or YouTube Video.  Imagine being able to showcase bipolar disorder by getting a glimpse of the life of someone who actually lives and breathes the illness and envision sharing the thoughts and words of the people who know it well.

The group had some very strong opinions on the importance of doing such a project, which they thought could be empowering and helpful to their own wellness, while at the same time providing education to others.  Getting together on a Sunday afternoon a few days before school starts really made this group’s dedication apparent and the session proved to be fruitful and rewarding.  The youth even recognized that while such work could prove stressful, with the right supports (including our great research team), they were confident they would be successful in their endeavours.  I have never been touched by such enthusiasm and passion; we hope that others will also see the potential this research has for making an immense and long-lasting impact.  

Comments from Youth:

"The first meeting of the project made me feel quite optimistic about what us, as youth with bipolar disorder are able to accomplish in reaching out to our peers and furthering the elimination of mental health stigma in our society." Lara 21. 

"I feel that the session held the other day was a prime example of how youth of a very diverse group can come together. We talked about how we could get such an important subject of our lives into the hearts of others. I'm very proud to be one if the leaders of this research team."  Steven, 22.

"I learned a lot about how other people deal with bipolar and it made me feel less alone, I really liked exploring the idea of using social media as a way of raising awareness." Christine, 16.

 "Yesterday's research group was an eye opener to the fact that we are not alone. We brainstormed ideas on how to keep happy, and safe and it brought us all together with the common desire of wanting to live a long happy life, regardless of our mental illness."  Sascha, 16.

"Although I was quieter than the rest of the group I felt excited about the possibilities that this project could offer.  I could help myself tremendously and most of all enrich the lives of others." Jennifer, 20.

 

For a more in-depth summary of findings visit the following link

Pictures used with permission of participants.  Real names of participants were not used for this blog.

Bipolar Youth Action Project

We all say how important youth are, how vital their participation is, and see value in their contribution.  In light of this, the Bipolar Disorder Society of BCs (BDSBC) – Bipolar Babe project (www.bipolarbabe.com) recognizes that we all need to be paying more attention to younger generations affected by bipolar disorder. 

The research team at CREST.BD (crestbd.ca) and BDSBC have joined forces to develop a grant proposal called the BIPOLAR YOUTH ACTION PROJECT submitted to the Vancouver Foundation.  The project will engage youth who live with bipolar in order to develop research skills and study alongside their peers.

What does this mean?  We plan to first launch a pilot project for the grant and we have invited six bright youth with bipolar disorder to participate in a 1.5 hour session to brainstorm ideas on how they and others can stay well while living with bipolar disorder. 

They may pose questions such as:

 – what techniques do you use to stay well with BD?

– do you think any of these techniques are particularly useful for people in your age range?

– do youth face particular problems in terms of staying well with BD compared to adults?

– what's the best way to share information about how to stay well with BD with other youth with BD?

As someone who has struggled with bipolar, I realize how important such a project is.  I have experienced serious bouts of psychosis, mania and depression and my hope in life is not to have others suffer as I have. We all need to find ways to stay well, especially our youth that live with bipolar disorder.    

There are additional benefits to creating a youth based project such as the Bipolar Youth Action Project: not only do youth gain the opportunity to become researchers themselves, but relationships will be formed and peer support circles created along the way, up and down Vancouver Island.  The youth, while brainstorming answers regarding wellness from their own research, will also be working in a supportive and motivating environment.

The space that CREST BD and BDSBC are planning to create will allow youth to express their research findings and have them apply their knowledge through multiple avenues, according to their needs and the needs of their peers.  The goal for our two organizations is to create a unique and valuable experience and encourage the wellness of youth living with bipolar disorder. 

It’s a significant win for everyone and thank you to the wonderful youth who have agreed to participate in our pilot project component of the project this August 2013, you are making bipolar youth history!

www.bipolarbabe.com and www.crestbd.ca