Partners in Health Care, Pillars of Hope: Why engaging family caregivers is essential in quality improvement Breakout session F3 Barb MacLean Executive Director

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

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

Family Caregivers’ Network of BC 4 Dedicated to family caregiver support, education and representation in health system improvement for 25 years. family caregivers

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.

1,000,000 One in 3.6

80% family caregivers 7

70% family caregivers 8

$25-26 billion 10

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12 Why are we caring?

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

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

4 years I’m fine. I’m fine. I’m fine. 16 Crisis Accept help family caregivers

Let’s tangle family caregivers 17

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

Individuals - us  50% resistant to change  8% innovators 19 Family caregivers

The Global Challenge [Jennings, Miller, Materna 1997] after Tom Ferguson - Healthcare Forum Journal Jan/Feb 1995 pp System is shifting to the least expensive and most available resources

How do we shift to patient and family centered care? family caregivers 22

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 and family 23

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

Patient, Family, Public Engagement 25 Ministry of Health Patients as Partners

Engagement Examples: 26

Family Caregiver Week May

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Simple, free and easy:  MAKE A REFERRAL BC Family Caregiver Program Caregiver Support Line Education & Resource Center: 29 family caregivers

Inventory of resources in BC – living document 30

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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

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

Caregiver Support Line: Education & Resource Center: family caregivers 35