Recommended
Recommended
More Related Content
What's hot
What's hot (15)
Viewers also liked
Viewers also liked (11)
Similar to Bipolar Youth Action Project Shares Strategies for Living Well
Similar to Bipolar Youth Action Project Shares Strategies for Living Well (20)
Recently uploaded
Recently uploaded (20)
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?
- 18. Healthy lifestyle Medication, diet, exercise, sleep, avoiding substances Support networks Positivity, respect of autonomy In-the- moment strategies Self-awareness, mood-state- specific strategies Qualitative themes
- 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
- Nusha