Patient and Family Caregiver Engagement The Change Foundation Presented by: Christa Haanstra Stephanie Hylmar Jeff Junke Catherine Monk-Saigal The Change Foundation v 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
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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. 4
Hearing the stories, changing the story 2010 2013 Strategic Plan 5
Significant difficulty transitioning between health care providers and services Lack of consideration for accommodatin g family caregivers THEY TOLD US A disconnect between their primary care provider and the rest of the system Lack of communication between providers 6
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Tips and Considerations for Meaningful Engagement 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 www.changefoundation.com
Tips and Considerations for Meaningful Engagement 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
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 nonpayment 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 Time Duration Intensity CONTRIBUTING FACTORS Equity Others they are working alongside Vulnerable Population Status Representation from all groups Challenges Discomfort, embarrassment etc. Accountability Mode of engagement Positive Impact Benefits MITIGATING FACTORS Desirability Access to HC Professionals Other Forms of Recognition Token of Appreciation Branded Souvenirs Thank You Gift(s)
From Patient Engagement to a focus on Family Caregivers Our focus: caregivers www.changefoundation.com
A Family Caregivers story: Meet Marilyn Marlyn's Story
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 form of 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 who are 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% 7% 10% 13% 17% 8% 37% 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 1,800,000 1,600,000 47% 1,556,000 1,400,000 1,200,000 1,000,000 800,000 600,000 400,000 200,000 0 24% 772,000 13% 420,000 7% 233,000 6% 182,000 2% 81,000 1% 37,000 Parent or In-Law Close friend, neighbour, or colleague Child Other Family Member Spouse 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 3,500,000 3,000,000 2,500,000 2,948,000 2,577,000 2,000,000 1,883,000 1,729,000 1,500,000 1,000,000 1,219,000 1,016,000 940,000 811,000 500,000 168,000 0
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 Both Women Men Don't Know 6% 6% 6% 10 + Hours 22% 29% 26% 2-9 Hours 46% 48% 47% 1 Hour (or less) 17% 26% 21% 0 200 400 600 800 1,000 1,200 1,400 1,600 1,800
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
WHAT ARE THE IMPACTS OF CAREGIVING? Triggers of Caregiver Stress 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? Are They Receiving any Support? 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 3,500,000 3,000,000 93% N= 3,051,000 2,500,000 2,000,000 1,500,000 1,000,000 500,000 7% N= 233,000 0 Did Not Receive Financial Support Received Financial Support
The Role of Family Caregivers in Home Care Home Care Journey
The Caring Experience Ontario Caregiver Coalition & The Change Foundation November 2015 February 2016 Province-Wide Town-Halls 2 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 Communication between services to improve Services to listen to me A coordinated system 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 needs of 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 30 How to Improve Negative Caregiving Experiences 25 Frequency (n=87) 20 15 10 5 0 Education Accessibility to care & Acknowledgement, Navigation, Communication, support services ( that works Understanding, & Inclusion of & Coordination with and for the caregiver) Role Other (including system changes & financial help)
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
Recognition of Role Emerging Themes Communication Between Providers & Caregivers Identification of Needs & Assessment of Caregivers Support for Caregivers
The Caring Experience: Provider Engagement March 2016 June 2016 BY THE NUMBERS 22-25 sessions across Ontario 13 sessions complete 137 participants 12 LHIN areas covered Professional Groups RN, RPN, PT, OT, PSW, SW, NP, Physicians, Administrators, Respite Advisors, Behavioural Therapists
The Caring Experience: Provider Engagement Themes: 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