2. Culturally Competent Care from the Perspective of the Consumer: What Matters Most October, 2007

3. DBSA, The Depression and Bipolar Support Alliance Consumer-led national organization Peer Support: 1,000+ groups Up-to-date and scientifically based recovery tools and information written in patient- friendly language We’ve been there, we can help

4. DBSA 100,000+ brochures are downloaded/month Over 1,000,000+ brochures mailed out / year 1.2 billion+ media impressions World renown SAB Currently three NIMH funded research studies 5,000,000+ people request and receive help

6. So What Do We Want ? DBSA Care Survey N= 914 patients, 324 family members Over 2,000 respondents, only included those who finished the survey

7. I want the health care system to (13 choices) consumerfamily member 1 Give me hope/seem hopeful about my future Act in a way that shows they believe that my family member can recover 2 Let me make decisions / have some input into my treatment & care Focus on my family member's wellness not their illness 3 Focus on my wellness not my illness Treat my loved one and me with respect 4 Act in a way that shows they believe that I can recover Listen to what my family member needs instead of telling him/her what they need 5 Listen to what I need instead of telling me what I need Be more accessible

8. DBSA Care Survey Communication is the key to Hope Empowerment Wellness vs. illness Your Belief in Me Listening

9. What matters most Ask and Listen Cultural Affiliations What The Illness Means To Me/Us Spiritual Healing Practices Role Of Family What will help and what will hurt

10. Tell me you will perhaps do things that offend or seem strange because you do not know my culture, but that you will not make mistakes with medication and treatment. Enlist me as a partner with both of us knowing some things that can help the other

11. What matters most Examine your own beliefs How emotions are communicated What treatment means The role of family members The role of community The role of religion How outcomes are defined

12. What do you call your problem? What name does it have? What do you think caused it? Why do you think it started when it did? What does your it do to you? How does it work? How severe is it? Do you think it will last a short or long time? What do you fear most about it? What are the chief problems that it has caused for you? What kind of treatment do you think you should receive? What are the most important results you hope to receive from the treatment?

14. The Seven Dirty Words 1.Compliance 2.The Bipolar in Room Three 3.Resistant to Treatment 4.The Treatment Team 5.Patient Failed the Treatment 6.Frontline staff in the trenches

16. The Two Wonderful Words 1.ETHNIC 2.LEARN

17. ETHNIC: A Framework for Culturally Competent Clinical Practice E: Explanation T: Treatment H: Healers N: Negotiate I: Intervention C: Collaboration (Levin et. al. 2000, 189)

18. LEARN: Guidelines for Health Practitioners L: Listen with sympathy and understanding to the patient’s perception of the problem. E: Explain your perceptions of the problem. A: Acknowledge and discuss the differences and similarities. R: Recommend treatment. N: Negotiate agreement. (Berlin and Fowkes 1983, 934-938)

20. DBSA Provider Competency Survey 1.Listen 2.Communicate 3.Compassion (tied) 3. Knowledge (tied) 4.Interpersonal Skills 5.Attitude of Respect 6. Skill 7. Allow enough time 8.Work in partnership with us 9. Don’t just medicate 10. Look at the whole person

24. What do you want from the health care system? (18 choices)

25. consumerfamily member 1 To be treated with respect Doctor nurse or therapist who listens to my family member (tie) Thorough explanations of what is going on 2 Doctor nurse or therapist who listens to me Treatment that looks at my family member's whole life not just medication 3 Treatment that looks at my whole life not just medication Treatment that builds on my family member's strengths instead of just focusing on the illness (tie) Care that provides hope 4 Thorough explanations of what is going on Options other than hospitals when my family member feels bad 5 Treatment that builds on my strengths instead of just focusing on the illness (tie) Care that provides hope Easier access to the medications my family member's doctor prescribed (insurance won’t pay or wants my family member to take something else first or I can’t afford the medication)

26. People Seeking Wellness Wellness to us means the presence of a full, well- rounded life where we no longer feel our depression or bipolar disorder is robbing our life of things that are important to us

27. People Seeking Recovery The processes by which people are able to live work, learn, and participate fully in their communities. The ability to live a fulfilling and productive life despite a disability.

28. Thank You www.DBSAlliance.org 800-826-3632