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Partners in Health Care, Pillars of Hope: Why engaging family caregivers is essential in quality improvement Breakout session F3 Barb MacLean Executive Director exdir@fcns.ca www.familycaregiversnetwork.org
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Disclosure I work for the Family Caregivers’ Network Society of BC. We receive funding from the BC Ministry of Health, Patients as Partners Initiative. I am biased toward patient and family centered care. 2
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3 Themes: 1. Incredible yet invisible: the family caregiver role 2. Making the shift to patient and family centered care 3. How can we ACT to: include family/friends as partners in care engage in health planning and policy refer them for support & education family caregivers 3
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Family Caregivers’ Network of BC 4 Dedicated to family caregiver support, education and representation in health system improvement for 25 years. family caregivers
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A Family Caregiver is…. …anyone who provides care and support for an adult family member or friend who is in poor health, frail, elderly or disabled. The care recipient can live either in their own home, with the family caregiver or in a care facility.
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1,000,000 One in 3.6
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80% family caregivers 7
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70% family caregivers 8
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$25-26 billion 10
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Impact of Caregiving on Health Depression and anxiety High levels of stress Chronic health conditions twice the rate of general population Hypertension Compromised immune system Back injuries Insomnia And then there’s the financial impact $$$ 14 family caregivers
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Impact of Caregiving on Health Depression and anxiety High levels of stress Chronic health conditions twice the rate of general population Hypertension Compromised immune system Back injuries Insomnia And then there’s the financial impact $$$ 15 family caregivers X
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4 years I’m fine. I’m fine. I’m fine. 16 Crisis Accept help family caregivers
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Let’s tangle family caregivers 17
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Why are caregivers excluded? privacy legislation - professionals cautious about sharing with families Stigma or assumption that they will interfere or be trouble. Lack of understanding Indifference Staff Work load – too busy No simple established communication process 18 family caregivers Source: Wendy Sutton
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Individuals - us 50% resistant to change 8% innovators 19 Family caregivers
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The Global Challenge...... [Jennings, Miller, Materna 1997] after Tom Ferguson - Healthcare Forum Journal Jan/Feb 1995 pp28- 33 System is shifting to the least expensive and most available resources
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How do we shift to patient and family centered care? family caregivers 22
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Family caregivers Setting Priorities for the B.C. Health System PRIORITY1: Provide patient-centred care Shift the culture of health care from being disease-centred and provider-focused to being patient-centred. Feb. 2014 and family 23
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BC Ministry of Health Patients as Partners Patients and family caregivers are partners in health care when they are supported and encouraged to participate: in their own health care in decision making about that care at the level they choose in quality improvement and health care redesign 24 family caregivers
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Patient, Family, Public Engagement 25 Ministry of Health Patients as Partners
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Engagement Examples: 26
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Family Caregiver Week May 4-10 27
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Simple, free and easy: MAKE A REFERRAL BC Family Caregiver Program Caregiver Support Line 1-877-520-3267 Education & Resource Center: www.familycaregiversnetwork.org 29 family caregivers
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Inventory of resources in BC – living document 30
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31 family caregivers
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I have been impressed with the urgency of doing. Knowing is not enough; we must apply. Being willing is not enough; we must do. Leonardo da Vinci Family caregivers 33
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What will YOU DO? include = part of the care team Inquire, “How are you?” refer for support invite to the planning table ?? 34 Family caregivers
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Caregiver Support Line: 1-877-520-3267 Education & Resource Center: www.familycaregiversnetwork.org family caregivers 35
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