Patient and Family Engagement

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Patient and Family Engagement
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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 dont
  understand their illness or the treatment plan

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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

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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

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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

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• 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.

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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

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• 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.

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• 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,

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Recognize the Importance of Families Friends

• Family is not an important thing,
• Its everything
• - Michael J. Fox

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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,

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What Families Provide

• Advice, knowledge and encouragement
• Recognition of early warning signs
• Record keepers
• Understand persons strengths, talents and
  preferences
• Advocacy for person in the hospital and with
  the insurance company, county, etc.

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What Families Need

• Encouragement to maintain hope
• Validation of worries/difficulties
• Respect and empathy
• Honest and caring communication

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What Families Need

• Resources and information
• To learn and ask questions
• Access to education and support
• Information about the mental health system

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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

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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

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True Family Engagement

• Include families in discharge and treatment
  planning
• Seek information from families about the history,
  background of their relatives illness
• Inform families of shifts in treatment strategies
  and changes in medications

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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

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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

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HIPAA v. Families

• Families perceived as overprotective or unengaged
• Families dont 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

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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

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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

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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

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Patient Engagement

• Identify support network
• Teach them about their illness
• Teach them about the treatment plan
• Involve them in changes in medication

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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

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Focus on Recovery

• Focus on eight dimensions of recovery

• Social
• Physical
• Emotional
• Spiritual

• Occupational
• Intellectual
• Environmental
• Financial

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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

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Community Resources

• Family psycho-education classes
• Support groups for the person with a mental
  illness and family members
• Written resources
• Advocates

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Patient Family Engagement

• If everyone is on the same page,
• its easier to move forward.

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• NAMI Minnesota
• 800 Transfer Road, Suite 31
• St. Paul, MN 55114
• 651-645-2948
• 1-888-NAMI-HELPS
• www.namihelps.org