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Bipolar Youth Action Project Shares Strategies for Living Well
1. The Bipolar Youth Action Project
(BYAP)
Erin Michalak
Associate Professor
Department of Psychiatry
University of British Columbia
Network Lead, CREST.BD
erin.michalak@ubc.ca
@crest_bd
@erin_michalak
2. Objectives
1. Review QoL and self-
management in youth with
BD literature
2. Introduce the BYAP project
3. Share pilot data from the
BYAP study, and lessons
learned on effective youth
engagement
3. QoL in BD publications
Publications referencing QoL as a proportion of publications referencing BD
(Scopus database, terms in abstract, title or keywords), past 20 years
Source: Murray G, Michalak EE. Bipolar Disord. 2012;14(8):793-6.
Exponential growth
(F (1,18) = 136.76,
p < .001, Adj R2 = .88)
But...
Sheer numbers still small
N for QoL
publications = 140
Vs.
N for symptom measure
publications = 1576
4. Methods
STOP-EM project, UBC Hospital,
longitudinal naturalistic study of FEM
patients
- N=63, majority FEM, N=3 mixed
episodes
- Mean age 22.8 yrs (±4.3)
- N=30 (48%) male
- Duration of illness 3.0 yrs (±3.5)
- N=41 (65%) psychosis in index manic
episode
- Comorbid substance/alcohol
misuse⁄dependence, N=17 (27%)
Michalak et al., Bipolar Disorders, 2013: 15: 188–198.
QoL in first-episode mania
5. 0
10
20
30
40
50
60
70
80
90
100
0 Mths 6 Mths 12 Mths 18 Mths
Mean Q-LES-Q
Score
QoL (mean Q-LES-Q) and HRQOL (SF-36) baseline - 18 months in FEM patients (N=63)
**
Q-LES-Q at 12 and 18 mths
sig. improved over baseline
SF-36 PHC and MHC summary
scores sig. improved at 6, 12
and 18 mths
*
***
* *
Michalak E.E. et al., Bipolar Disord 2013: 15: 188–198.
6. QoL (mean Q-LES-Q) scores compared to STEP-BD sample and NMI controls
• STEP-BD range
47.7 (±3.0)
(depressed) to
61.5 (±4.3) (manic)
• Schechter study
81.8 (±13) no MI
normal controls
Zhang H. et al., Compr Psychiatry. 2006: 47(3):161-8.
Schechter D, et al., Psychiatry Res. 2007: 30;152(1):45-54.
Michalak E.E. et al., Bipolar Disord 2013: 15: 188-198.
7. Predictors of Q-LES-S scores in FEM sample
Michalak E.E. et al., Bipolar Disord 2013: 15: 188-198.
Baseline – illness duration and
depression severity predicted 50% of
variance in QoL
# of previous depressive episodes and
depression severity predicted QoL at
subsequent time points
8. Self-management in BD (in adults)
Study Aim –
To identify self-management strategies
used by people living well with BD
Methods -
Purposeful sampling used to identify:
~ People with BD Type I/II (N = 32)
~ Median Age: 41±13 yrs
~ 63% female ~ 78% BD I
~ Functioning well
Individual interviews or focus groups,
thematic analysis.
Suto et al. (2010) JAD, 124 (1-2):76-84; Murray et al (2011) Clinical Psychology and Psychotherapy, 18:95-109.
.
9. BD self-management strategies (in adults)
Delphi Project Results:
Maintaining balance:
1. Calming strategies
2. Medical management
3. Maintaining hope
4. Physical activity
Stopping progression:
1. Forward Planning
2. Early Intervention
3. Decreasing stimulants
In press, Journal of Affective Disorders
Sleep, rest, diet and
exercise
Regular monitoring and
adjustment
Reflective, meditative,
spiritual practices
Understanding BD,
educating others
Connecting with others
Enacting a plan
Suto et al. (2010) JAD, 124 (1-2):76-84;
Murray et al (2011) Clinical Psychology
and Psychotherapy, 18:95-109.
10. Gaps in the BD QoL/self-management fields
– Little to no research on self-
management in youth with BD
– Little to no evidence on how
youth can optimally access
evidence on self-management
once generated
11. BYAP Project Team
• Erin Michalak, CREST.BD & Andrea Paquette, BDSBC, co-leads
• Laura Lapadat & Anna Graham, Youth Action Group (YAG) co-
leads
• BYAP YAG members
• Eugenia Canas, MindYourMind, YAG Mentor, Don Kattler,
clinical support
• Drs. Joanna Cheek & Wei-Yi Song, co-investigators
12. Goals and Objectives
GOAL 1: Identify and share strategies youth
with BD living on Vancouver Island use to
stay well
Objective 1: Document specific strategies
youth with BD living on Vancouver Island
use to stay well
Objective 2: Identify optimal methods for
increasing the uptake/application of this
knowledge
13. Goals and Objectives
GOAL 2: Increase the Vancouver
Island youth BD community’s
capacity to engage in and
undertake mental health
research
Objective 1. To engage and train
a group of youth from
Vancouver Island in CBPR
methods
14. Methods and Milestones
• 2-year project blending Community-based Participatory Based
Research (CBPR), qualitative, arts-based and ‘integrated knowledge
translation’ (KT) methods
Aug. 2013 – Feb. 2016
• Research training days x2
• On-going research and KT training (e.g., 7 YAG
meetings in Year 1)
• Forum 1
• Focus group analysis
• Forum 2
• KT design
• KT implementation
15. Forum #1: Demographics
• N=21
• gender: 14 female, 6 male, 1 other
• ethnic background: N=14 (67%)
Caucasian
• age: mean 21 years (SD±3.1)
• diagnosis: N=5 (24%) BD type 1,
N=6 (29%) BD type II, remainder
NOS
• Geography: N=16 (77%) from
Victoria, N=5 (23%) from
North Island
16. Forum #1: Focus Group Methods
• 5 x60 minute focus
groups, adult facilitator
and youth co-facilitator
• Audio-recorded,
transcribed verbatim
• Thematic analysis
performed by youth-
adult dyad
17. Focus Group Questions
1. Are there self management
strategies that you have found
are helpful for living well with
BD?
2. Are there strategies that might
are especially useful for
younger people with BD?
3. How did you learn about these
strategies?
4. What suggestions for effective
self-management would you
give to a young person who has
just been diagnosed with BD? –
what would you want them to
know?
19. “I was so relieved when I was
diagnosed. Because I was, for the
longest time, just thinking, “what’s
wrong with me?”
“You’re not alone… there’s
many who suffer like you.”
“Just [like my] mom
always told me…
keep going.”
“Don’t be ashamed of… your illness
[or] of taking the steps necessary to
keep yourself better.”
In their words…
20. Lessons learned
• youth with BD have valuable
knowledge to share
• self-management of BD in
youth not dissimilar to that of
adults, but…
• preferred KT methods differ
• remarkable proactivity
required by youth to find
health information
• CBPR projects take
considerable effort…
• but the results are
worth it
Editor's Notes
Speak about the process that arrived at this knowledge
Nusha
From Erin:
Slide 17. it's jarring to introduce findings from another study at this point - suggest instead that this is move towards the end of talk, and used to frame the discussion, i.e. next steps - we have findings from our adult BD projects (you could mention Delphi here too, but only if you have time! don't try to fit too much in, less is better) - BYAP findings are an important compliment to that - show that many of the core approaches to SM overlap - what may be different is the tailored KT strategies needed to move them into action in youth populations. Reiterate that is what we're doing in Forum 2.
Nusha open
EQUITY. As a project, it works hard to give everyone what they need so they can participate as partners.
Nusha
-- Project has a CBPR orientation and as such as are supporting the youth’s learnings
-- Ran two full-day research trainings and 1 refresher webinar. This is Janai at the 2nd research day where we used graphic facilitation as a tool to create more active understandings of "what is research"?
-- graphic facilitation is a method whereby the words, in a discussion, presentation... are converted into pictures and key words to show a visual image of what was said. They youth got a chance to practice graphic facilitation and then try it out as we discussed our core questions (what is CBPR? What is qual. research? What is self-management?) and they created their own graphic facilitations. These images still inform our project
-- To knowledge gathering. We are mixing qualitative FGs with some light quantitative methods. Youth forum also two mental health scales.
-- Ongoing balance in our meetings of team building and meeting project research goals
-- Expected to have to recruit a new YAG halfway thru due to attrition, but have not had to although have had about 50% attrition. Balancing act in keeping YAG engaged, motivated and excited and supporting them to actively work to meet project goals.
-- meet about once/month; each YAG member receives a 50$ honorarium/meeting and co-leads receive more.
-- meet on their schedules as they have varied responsibilities; we have had to shift our work schedules significantly to accommodate theirs
-- Key learnings here are that youth perhaps aren't used to being consulted as equals -- they are excited but require a lot more project management than our usual network of peer researchers. Speaks to the merging of cultures.
Nusha explains the Forum(s)
-used as a way for youth to build community, share what they know, generate more knowledge
-meeting youth where they’re at: space, tone of event, activities
-talk about the knowledge gathered and the analysis used
21 participants from 16 to 26 from Vancouver Island, 14 F, 6 M, 1 other
2 identified as visible minorities – weakness of project, partly also geography
3 brought supporters, 2 comfortable enough to let their supporters leave
Nusha talks about the focus group questions.
Nusha talks about the focus group questions.
Nusha
Our co-lead Laura had a key role in helping distil the themes from the FG data, and it was interesting, but not entirely surprising, that from our FG data it looks as though youth themes do not differ highly from adult themes of SM. The key themes that Laura and Kathleen discerned were:
1) Healthy lifestyles help regular moods
Avoiding drugs and alcohol
Taking medication: “one of the best SM techniques that I never really considered an SM technique is taking my medication.”
Also accepting that there are other “pillars”: “it’s medication, not magic” “like a house, you need four pillars”: medication, sleep, diet, exercise.
Also included managing sleep, getting outside and exercising
2) In the moment strategies to manage depressive and manic mood states
Self-awareness and recognizing EWS, or asking for help from supports to recognize (some mentioned mood trackers and journals)
Social connection for managing depression
Distraction and “emotional dumping” thru creative pursuits – this related to self-harm “I thought [meditation] was bogus, but then I actually gave it a go and I was like “whooooaaaa”!
3) Support networks that understand BD and youth’s autonomy
The final question we asked our FG participants was “what would you want to tell somebody newly diagnosed with BD? What are the messages you would want them to know?”
Developing healthy attitudes towards illness is important for living well – esp. for doing well in school and issues of identify
You’re not the only one experiencing a mental illness
Words of reassurance