Culturally Competent Care
from the
Perspective of the
Consumer:
What Matters Most
October, 2007
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 patientfriendly language
We’ve been there, we can help
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
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
I want the health care
system to (13 choices)
consumer
family member
Give me hope/seem hopeful
about my future
Act in a way that shows
they believe that my
family member can
recover
1
2
Let me make decisions / have Focus on my family
some input into my
member's wellness
treatment & care
not their illness
3
Focus on my wellness not
my illness
Treat my loved one and
me with respect
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
Listen to what I need instead
of telling me what I need
Be more accessible
4
5
DBSA Care Survey
Communication is the key to
Hope
Empowerment
Wellness vs. illness
Your Belief in Me
Listening
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
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
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
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?
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
The Two Wonderful Words
1. ETHNIC
2. LEARN
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)
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)
DBSA Provider Competency Survey
1.
2.
3.
3.
4.
5.
6.
7.
8.
9.
10.
Listen
Communicate
Compassion (tied)
Knowledge (tied)
Interpersonal Skills
Attitude of Respect
Skill
Allow enough time
Work in partnership with us
Don’t just medicate
Look at the whole person
Don’t just
medicate
Whole person
care
Knowledge
Partner
Listening
Partner
Compassion
Listening
Skill
Faith in ability
Communication
Faith in ability
Attitude
Interpersonal
skills
Interpersonal skills
Attitude
Educate Us
Time
Communication
Compassion
Time
Educate Us
Skill
Knowledge
Whole person care
Don’t just medicate
What do you want from
the health care system?
(18 choices)
consumer
family member
To be treated with respect
Doctor nurse or therapist who
listens to my family member (tie)
Thorough explanations of what is
going on
Doctor nurse or therapist who
listens to me
2
Treatment that looks at my family
member's whole life not just
medication
Treatment that looks at my whole
life not just medication
3
Treatment that builds on my family
member's strengths instead of just
focusing on the illness (tie) Care
that provides hope
Thorough explanations of what is
going on
Options other than hospitals when
my family member feels bad
1
4
Treatment that builds on my
strengths instead of just focusing
on the illness (tie) Care that
provides hope
5
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)
People Seeking
Wellness
Wellness to us means the
presence of a full, wellrounded life where we no
longer feel our depression or
bipolar disorder is robbing our
life of things that are
important to us
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.
Thank You
www.DBSAlliance.org
800-826-3632
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Insights from a patient perspective