v

Patient and Family Caregiver Engagement

The Change Foundation

Presented by:

Christa Haanstra

Stephanie Hylmar

Jeff Junke

Catherine Monk-Saigal

The Change Foundation

June 7, 2016

Presentation Overview

• Welcome and Introductions

• The Change Foundation: Background

• Our Patient Engagement Journey

• Rules of Engagement

• Should Money Come Into It?

• Bridging the gap: from patient engagement to family caregivers

• Who are Ontario’s family caregivers?

• The Caring Experience

• Caregiver engagement

• Provider engagement

• Questions and Discussion

3

4

2007: Redefined as a Think Tank

Ontario’s independent policy think tank –committed to changing the debate, practice and

experience in health care – with the intent of prompting system-wide improvements for

patients and caregivers.

5

Hearing the stories, changing the story

2010 – 2013 Strategic Plan

6

Significant

difficulty

transitioning

between health

care providers

and services

Lack of

consideration

for

accommodatin

g family

caregivers

A disconnect

between their

primary care

provider and the

rest of the

system

THEY TOLD

US

Lack of

communication

between

providers

7

8

1. Consider a range of engagement formats

2. Choose the best timeframe for meaningful

engagement

3. Consider partnering

4. Recruit wisely

5. Be clear about your purpose and objectives

6. Be clear about the organization’s scope of influence

7. Develop a code of conduct together

Tips and Considerations for Meaningful Engagement

www.changefoundation.com

8. Have an exit strategy

9. Give participants the tools they need

10. Expect the unexpected

11. Recognize participants

12. Report back

13. Prepare for lulls and how to navigate them

14. Be sensitive to people’s emotions

15. Carry it forward

www.changefoundation.com

Tips and Considerations for Meaningful Engagement

COMPENSATION- Background

• Healthcare organizations in Ontario are increasingly engaging, patients and family caregivers in planning and decision making activities

• The Foundation has received a lot of questions about how to appropriately recognize and/or compensate participants for the time spent engaging with providers or the system

COMPENSATION – Methods

• Literature Review• Reviewed common practices around payment and non-

payment of volunteer participants

• Key Informant Interviews• Interviewed four professional experts working in the field

of engagement

• PANORAMA Consultation• Consulted our 31 standing panelists of patients and

caregivers about the question of compensation and the criteria to judge whether to pay or not to pay

COMPENSATION - Results

CONTRIBUTING FACTORS MITIGATING FACTORS

TimeDurationIntensity

Positive ImpactBenefits

EquityOthers they are working alongside

DesirabilityAccess to HC Professionals

Vulnerable Population StatusRepresentation from all groups

Other Forms of RecognitionToken of AppreciationBranded SouvenirsThank You Gift(s)Challenges

Discomfort, embarrassment etc.

AccountabilityMode of engagement

Our focus: caregivers

www.changefoundation.com

From Patient Engagement to a focus on Family Caregivers

Marlyn's Story

A Family Caregivers story: Meet Marilyn

https://vimeo.com/122005112

METHODS

• The data comes from the General Social Survey (GSS), conducted by Statistics Canada in 2012

• 6,850 survey participants were from Ontario

2,213 identified themselves as family caregivers

• The data presented here is an extrapolation of these responses and represents the entire population of Ontario

• Weighted Population of Ontario 11.2 million people

3.3 million family caregivers

LIMITATIONS

• The data was collected by a secondary source

• The survey was conducted by telephone interview and used random digit dialing

• The survey was lengthy and required participation from multiple members of the same household

• There is a lack of qualitative explanation to complement the data (i.e. high non-response on some questions is not explained)

• The day/time that caregivers were interviewed could effect their responses (i.e. a high stress versus low stress day)

DEFINING FAMILY CAREGIVERS

• Family caregivers are people – family, friends, neighbours– who provide critical and often ongoing personal, social, psychological and physical support assistance and care, without pay, for family members and friends in need of support due to frailty, illness, degenerative disease, physical/cognitive/mental disability, or end of life circumstances.

WHO ARE ONTARIO’S FAMILY CAREGIVERS?Gender, Age and Marital Status

• In Ontario 3.3 million people provide some formof care or support to a family member or friend

• 53% Female - 47% Male

• 11% over age of 65

• 19% between 55-64

• 23% between 45-54

• 30% between 25-44

• 17% between 15-24

• 65% of caregivers are married or in a common-law relationship

• 27% are single, never having been married

WHO ARE ONTARIO’S FAMILY CAREGIVERS?Sandwich Generation, Location and Language

• 29% of caregivers have one or more children whoare under the age of 14 in the household

• 9% of caregivers are lone parent families

• 63% Female – 37% Male

• 86% – 14%

• 30% of caregivers live in the same household or building

• 50% of caregivers live under an hour away by car

• 20% of caregivers live an hour or more away by car

• 21% of caregivers’ primary language is not English or French

WHO ARE ONTARIO’S FAMILY CAREGIVERS?Paid Employment and Income

• 76% of caregivers juggle caregiving and paid employment

• Caregiver Annual Personal Income

8%

37%

17%

10%

7%

8%

13%No income or loss 8% (N= 268,000)

Less than $40,000 37% (N= 1,231,000)

$40,000 - 59,999 17% (N= 549,000)

$60,000 - $79,000 10% (N= 329,000)

$80,000 - $99,999 8% (N= 228,000)

$100,000 and up 7% (N= 265,000)

Not Reported 13% (N= 429,000)

WHO ARE CAREGIVERS CARING FOR?Relationship

• 84% of caregivers are providing care to a family member

• 13% are providing care to a close friend, neighbour or colleague

• Relationship to Care Receiver

47%1,556,000

24%772,000

13%420,000 7%

233,0006%

182,000 2%81,000

1%37,000

0

200,000

400,000

600,000

800,000

1,000,000

1,200,000

1,400,000

1,600,000

1,800,000

Parent or In-Law Other Family Member

Close friend, neighbour, or colleague Spouse

Child Other Relationship

Not Stated

WHO ARE CAREGIVERS CARING FOR?Type of Help Provided

• 28% (1 million) are caring for someone because of aging

• Types of help provided by caregivers

2,948,000

2,577,000

1,883,0001,729,000

1,219,0001,016,000 940,000

811,000

168,000

0

500,000

1,000,000

1,500,000

2,000,000

2,500,000

3,000,000

3,500,000

WHAT ARE THE IMPACTS OF CAREGIVING?Time Spent

• The average caregiver spends 11 hours a week on

caregiving duties

• Caregivers’ time spent caring as a function of gender

26%

46%

22%

6%

17%

48%

29%

6%

21%

47%

26%

6%

0 200 400 600 800 1,000 1,200 1,400 1,600 1,800

1 Hour (or less)

2 - 9 Hours

10 + Hours

Don't Know

Both Women Men

WHAT ARE THE IMPACTS OF CAREGIVING?Work – Life Balance

• 45% (1.5 million) of caregivers report struggling to fulfill caregiving duties because of work

• 41% (1.3 million) of caregivers experienced some degree of difficulty concentrating on work because of caregiving

• During the last 12 months the 76% (2.5 million) of caregivers balancing caregiving with paid employment said:

• 30% were late for work or had to leave early

• 30% on average missed a day of work per month

• 1% (35,000 people) terminated their employment

(either quit or were fired)

WHAT ARE THE IMPACTS OF CAREGIVING?Choice, Stress and Emotional Impact

• 31% (1 million) of caregivers felt they had “No Choice” in taking on their caregiving responsibilities

• Caregivers experience both rewards and stress as a result:

• 48% (1.6 million) say it is “rewarding” or “very rewarding”

• 47% (1.6 million) say is it “somewhat” or “highly stressful”

• Of the 2.3 million caregivers that described their emotions:

• 55% (1.3 million) were worried or anxious

• 52% (1.2 million) were tired

• 38% (900,000) were short tempered and irritable

• 36% (800,000) were overwhelmed by caregiving

• The 47% (1.6 million) of caregivers who found caregiving stressful said there were specific triggers, including:

• dealing with the care receiver’s decline

• making decisions for their care receiver

• finding services for the family member

• balancing caregiving with other responsibilities

• managing their own emotions

• experiencing a decline in their own health due to caregiving

WHAT ARE THE IMPACTS OF CAREGIVING?

Triggers of Caregiver Stress

• 79% (2.6 million) of caregivers receive 10 hours of help a week (1.4 hours per day) from a paid worker or government agency

• 93% (3.1 million) did not receive any financial support or Federal tax credits from the government

93%N= 3,051,000

7%N= 233,000

0

500,000

1,000,000

1,500,000

2,000,000

2,500,000

3,000,000

3,500,000

Did Not Receive Financial Support Received Financial Support

WHAT ARE THE IMPACTS OF CAREGIVING?

Are They Receiving any Support?

The Role of Family Caregivers in Home Care

Home Care Journey

https://vimeo.com/162694105

The Caring Experience

Ontario Caregiver Coalition & The Change Foundation

November 2015 – February 2016

• Province-Wide Town-Halls2 telephone town-halls

100 caregivers from across Ontario

• Caregiver Workshops

• Online Mini-Surveys

• Journey Mapping

Caregiver Workshops

• 9 Workshops across the Province London, Hamilton, Sudbury, Thunder Bay, Kingston, Ottawa (French session), Lindsay , Toronto, Chiefs of Ontario Health Forum (Aboriginal Caregiver Engagement)

• 120 Caregivers with diverse caregiver experiences

• Empathy Mapping & Postcard Exercise

• Frequently heard challenges: Access to care & services, constantly having to advocate, consistent care & care providers, navigating the system

Lonely Isolated Unsure

Inadequate Wanting Recognition Unprepared

The Health System to Understand my role

as a caregiver

Services to listen to me A coordinated system

Communication between services

to improve

Care workers to meet my basic expectations

Online Mini-Surveys

Over 360 cumulative responses over 3 short surveys (~120

respondents per survey)

52 hours/week caregiving

88% felt (or sometimes felt) included as a member of the care team

75% have NOT had any training regarding the specific health needsof the person(s) that receives care

Only 37% have been offered education about the health issues of the person(s) that receives care

63% did not receive any help navigating the health and community care system

Online Mini-Surveys

Most significant challenges or barriers to caregiving: Navigation, Communication & Coordination; Accessibility to care & Support; Acknowledgement & Inclusion

0

5

10

15

20

25

30

Education Accessibility to care &support services ( that works

with and for the caregiver)

Acknowledgement,Understanding, & Inclusion of

Role

Navigation, Communication,& Coordination

Other (including systemchanges & financial help)

Freq

uen

cy (

n=

87

)

How to Improve Negative Caregiving Experiences

Journey Mapping

• 18 caregiver from across Ontario

• Diversity in age, gender, geography, health challenges, length of caregiver experience

• 5 day journey – deep dive into the day to day life and experience of a caregiver as they interact with the health and community care system in Ontario

• Choose their own method of sharing their day to day experiences (ex. drawing, writing, pictures)

I need…

• A break

• A life beyond caregiving

• To have hope

• Our situation to be approached with a sense of urgency

• This to be affordable or funded

• Support to keep my loved one at home

• To maintain a “normal” relationship with my loved one

• The health care professionals and the system to understand and respect their impact on my life

Additional Caregiver Engagement

• Caregiver Interviews 30 Caregivers across Ontario, in a variety of caregiving

situations: 8 Rural, 12 Suburban, 22 Urban

7 Dementia, 5 Cancer, 4 FAS, 3 Stroke, 3 Complex Children, 3 Alzheimer’s, 2 Parkinson’s, 2 Renal failure, 1 Ageing

• Powerhouse Project Young Carer’s Initiative

2 Engagement Sessions

"I wish…."

In their words“I felt very upset, shocked and angry to be forced to drive 9 hours for a 20- minute meeting [where] I was not listened to regarding my mom’s care.”

“I feel elated when we do have a PSW who is consistent and communicates with the rest of the team.”

“What I needed would have been one person coming to take care of my wife. It would have been somebody that came in every single day, knew her and did something for her. But that didn't happen instead there was a different person every time”

“I feel like I am always talking to the wrong person.”

“I'm very forceful about getting what I think is needed done, I try and do it in a very nice way. I've never had anybody get upset with me. But I think it's very important that you have to take charge of your own lives, and your loved ones treatments”

Emerging Themes

• Recognition of Role

• Communication Between Providers & Caregivers

• Identification of Needs & Assessment of Caregivers

• Support for Caregivers

March 2016 – June 2016

BY THE NUMBERS

22-25 sessions across Ontario13 sessions complete

137 participants

12 LHIN areas covered

Professional GroupsRN, RPN, PT, OT, PSW, SW, NP, Physicians,

Administrators, Respite Advisors, Behavioural Therapists

The Caring Experience: Provider Engagement

The Caring Experience: Provider EngagementThemes:

• Challenges and opportunities to work with family caregivers vary greatly by health care setting

• Disconnects between patients and caregivers creates significant challenges

• Virtually no formal processes for family caregivers assessments

• Role of family caregivers is recognized by the majority of providers

• Providers rarely feel equip to support family caregivers

• System and funding barriers get in the way of providing support

• Transitions between care settings aren’t formalized causing problems and frustrations

Stay Tuned

• The Caring Experience: provider engagement (ongoing)

• Caregiver Innovations in Ontario

• Funding opportunities for program innovations (Fall 2016)

• Upcoming Reports and Resources:

• Experiencing Aging video series

• The Caring Experience report: caregiver and provider engagement

• Join the conversation:• @TheChangeFdn

• #caringEXP

• www.changefoundation.ca