MINNESOTA
National Alliance on Mental Illness
Patient and Family
Engagement
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Why is it Important?
• No one gets through a serious illness by
themselves
• No one should be discharged from the
hospital without someone with them to
hear the directions and ask questions
• No one manages their illness well if they
don’t understand their illness or the
treatment plan
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
NAMI Survey of People who had
been Hospitalized
• Get well cards – 25%
• Visits from family – 86%
• Visits from friends – 45%
• Have an easy time staying connected –
34%
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
NAMI Survey
• Involve family and friends in recovery –
35%
• Involve in treatment plan – 25%
• Have someone with me at discharge –
27%
• Encouraged to sign a privacy release –
27%
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
NAMI Survey
• Provided me with info about my illness –
39%
• Provided me with info about my meds
and side effects – 43%
• Had input into my treatment plan – 41%
• Was listened to – 45%
• Offered hopeful words about recovery–
40%
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
• I would have liked to have more
information on my new medication when
I first started on it, instead of getting it
from Target Pharmacy after I got out.
• Treat me like a patient with an illness, not
like I am incapable of making good
decisions.
• Due to my mental illness, physical
symptoms were disregarded as figments
of my imagination.
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
NAMI Survey Families
• Sign a privacy release – 38%
• Provided information on illness – 27%
• Info on meds and side effects –26%
• Taught me what to do to help –11%
• Had input into treatment plan – 31%
• Showed empathy – 40%
• Hopeful words – 34%
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
• We had to ask if they had a video or
something to read to help us when our
18yr old son was hospitalized while he
had been in college -there was no support
for us as parents. We had to find that on
our own and in our own community
• They could have included me, consulted
with me, and not dismissed me.
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
• Parents who are obviously the ONLY other
contact of patient should be included in
treatment/care/discharge.
• More descriptions of the unit, rules,
population, etc. It was my son's first time
in an adult unit.
• Staff could have treated me like a caring
parent - just like they would for a child
with cancer,
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Recognize the Importance of
Families & Friends
Family is not an important thing,
It’s everything
- Michael J. Fox
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
What Families Provide
• Social support - improves physical health,
helps with resilience and better quality of
life
• Practical help - transportation, housing,
food, finding and keeping jobs, money,
make appointments, fill medications,
monitor stress,
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
What Families Provide
• Advice, knowledge and encouragement
• Recognition of early warning signs
• Record keepers
• Understand person’s strengths, talents
and preferences
• Advocacy for person – in the hospital and
with the insurance company, county, etc.
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
What Families Need
• Encouragement to maintain hope
• Validation of worries/difficulties
• Respect and empathy
• Honest and caring communication
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
What Families Need
• Resources and information
• To learn and ask questions
• Access to education and support
• Information about the mental health
system
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Why Families Want Information
• Reduce anxiety and confusion
• Determine appropriate expectation for
their loved one
• Learn how to motivate their relative
• Find out about mental illnesses
• Assure accessibility to a professional
during a crisis
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Why Families Want Information
• Understand the diagnosis and prognosis
• Understand symptoms, medications and
side effects
• Get specific suggestions for coping with
symptoms
• Deal with practical issues
• Make contact with peer support groups
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
True Family Engagement
• Include families in discharge and
treatment planning
• Seek information from families about the
history, background of their relative’s
illness
• Inform families of shifts in treatment
strategies and changes in medications
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
True Family Engagement
• Give timely reports on how things are
going
• Consult with and inform families about
possibilities for improving their relatives
condition
• Establish clear open channels for family
complaints and grievances
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
True Family Engagement
• Listen to their concerns
• Assess the strengths & limitations of the
family
• Address feelings of loss
• Help improve communication among
family members
• Encourage expanded support networks
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
HIPAA v. Families
• Families perceived as overprotective or
unengaged
• Families don’t want access to medical
records but to information
• They want to provide information to you
and obtain information to help their loved
one in the community
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
HIPAA v. Families
• Family Involvement Law
• HIPAA allows professional judgment
• Ask questions and involve families in the
beginning – ED evaluation
• Ask questions and involve families at the
end – discharge planning
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
HIPAA v. Families
• Proactively ask for privacy releases
• Ask more than once
• Ask if you can share certain information
• Provide general information
• Can assume consent if patient in room
and allows you to discuss situation
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Understanding Discharge Plans
• Are they realistic? Understandable?
• Who can do what in terms of
transportation, in-home services,
checking medicine cabinet, obtaining new
prescriptions, etc.
• Teach Back – include family if possible
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Patient Engagement
• Identify support network
• Teach them about their illness
• Teach them about the treatment plan
• Involve them in changes in medication
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Patient Engagement
• Partnering and decision making
• Reflecting on pros and cons
• Need enough information in order to
made decisions
• How do they want others involved in the
decision making
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Focus on Recovery
• Focus on eight dimensions of recovery
–
–
–
–
Social
Physical
Emotional
Spiritual
–
–
–
–
Occupational
Intellectual
Environmental
Financial
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Patient Engagement
• TRIP MAP
•
•
•
•
•
•
•
Think about problems, pressures, people & priorities
Research facts and possible solutions
Identify options
Weigh the pluses and
Minuses for each option
Action planning
Ponder the results of the decisions
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Community Resources
• Family psycho-education classes
• Support groups for the person with a
mental illness and family members
• Written resources
• Advocates
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
Patient & Family Engagement
If everyone is on the same page,
it’s easier to move forward.
National Alliance on Mental Illness
MINNESOTA
National Alliance on Mental Illness
NAMI Minnesota
800 Transfer Road, Suite 31
St. Paul, MN 55114
651-645-2948
1-888-NAMI-HELPS
www.namihelps.org
National Alliance on Mental Illness