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Connecting the Dots for Caregivers NEWSLETTER ISSUE 6 | AUGUST 2018

A Year In Review It’s been almost a year since Connecting the Dots for Caregivers first set out to talk to caregivers across Huron Perth. Our goal was to better understand the experience of caregivers and how we can ensure they feel supported and valued in their important role. We’ve come so far since those first meetings. The stories we heard from caregivers and healthcare providers drove home the urgent need to do things differently. It was these stories that became the foundation for our work. Caregivers told us that they are honoured to care for their loved one or friend, but they are struggling to cope. They told us they feel isolated, anxious and often depressed. They spend too much time trying to find the information they need and they have a hard time asking for help. From the many stories heard, it was clear that Connecting the Dots for Caregivers needed to focus on three themes: awareness 1 CONNECTING THE DOTS

and recognition of the role of a caregiver, supporting effective communication and information sharing between caregivers and healthcare providers, as well as exploring improvements to education, training and supports. To ensure we are making meaningful change, we are approaching each of these themes using a co-design process. This means we’re bringing caregivers and healthcare providers together to identify improvement opportunities and create meaningful solutions. To truly inspire change, we know we first need to build greater understanding of the role of the caregiver and the challenges of being a caregiver. We need to encourage caregivers to identify themselves in the role and healthcare providers to recognize caregivers as part of the healthcare team. To truly inspire change, we know it’s Time to Talk.

NEWSLETTER ISSUE 6. AUGUST 2018


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The Time to Talk toolkit was created through a co-design process with our first co-design team and input from our partner organizations. The toolkit aims to raise awareness of the caregiving role and to support healthcare and service providers in their conversations with caregivers. It includes posters and a pamphlet with valuable information about the impacts of being a caregiver, signs of caregiver burn-out and a list of local resources. The toolkit also includes an online training module for providers to reinforce our message of awareness and recognition, and a tip sheet that outlines meaningful ways healthcare providers can support caregivers. Our toolkit is starting to be used in each of our partner organizations and our goal is to share this toolkit with other organizations in the future. If you are a caregiver in Huron Perth, you may receive a Time to Talk pamphlet from your healthcare or service provider. We hope you find the information valuable.

Co-Designing Improvements to Communication The second co-design team is well underway and working on tools to support better communication and information sharing between caregivers and healthcare providers. This work is taking place at Seaforth Community Hospital. Our second co-design team includes the following members: Maribeth Boshart, Executive Assistant, North Perth Family Health Team Jill Carter, SW, Crisis Program, HPHA Sandra DeCorte, Hospital Care Coordinator, Seaforth Site, SWLHIN Heidi Di Diomete, Caregiver Barb Fewster, Caregiver Ray Harsant, Caregiver Dr. Erin Heisz, STAR Family Health Team Josie Kinsman, RN, Seaforth Site, Inpatient Unit, HPHA Pat Langlois, Caregiver Pauline Linton, RN, Seaforth Site, HPHA Samantha McRae, Co-design Lead/Educator Anna Michener, RPN, Telemetry/Day Surgery, Stratford Site, HPHA Charlene O’Reilly, Caregiver Deb Osborne, Caregiver Dr. Heather Percival, Site Chief, Seaforth Site, HPHA Karen Regier, Caregiver Rosemarie Richards, Caregiver Darlene Robertson, Caregiver Michelle Vandergaag, Supervisor Care Planning, ONE CARE Home & Community Support Services Catherine Walsh, Co-design Lead/Educator Deb Ward, Caregiver

The third co-design team is scheduled to begin their work in the fall and will look at the theme of education, training and supports. This work will take place with the help of our partners in home and community care; the South West Local Health Integration Network and One Care Home and Community Support Services. We look forward to sharing an update on this work in upcoming newsletters.

Lessons from Changing CARE Connecting the Dots for Caregivers is one of The Change Foundation’s four Changing CARE projects across Ontario. With all four projects at the oneyear mark, The Change Foundation has published Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design – a reflection on the collective path taken so far, and key learnings from the engagement phase of co-design. The report features 40 practical tips that can be used by organizations looking to co-design solutions in their own setting.

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NEWSLETTER ISSUE 6. AUGUST 2018


Reflections from A Provider At the conclusion of our first co-design team, we asked members how this experience has changed how they interact with caregivers. This is just one of the comments received that shows we are already making a difference. As it turns out, I guess you can teach an old dog new tricks. As a Registered Nurse, who has been actively working as a bedside nurse for 33+ years on various inpatient units and in the emergency department, and most recently as Team Leader of both of these units at the Seaforth Community Hospital, I have been both proud and humbled by participating in the Connecting the Dots for Caregivers Co-Design Team 1. With shock and disbelief, I have heard from caregivers, details of their journeys, each one individual, yet with similar threads of loneliness, exhaustion, grieving, feeling unheard and unrecognized, woven together in the blanket of their lives. Perhaps it is even a new life for them. One they did not ask for, nor did they see it coming. Perhaps it has been many years, and this is the first time they have spoken of these feelings. I can honestly say that what has changed in my practice is how I see caregivers. They may not see it, but I see capes, shields and swords. These people are warriors! Perhaps their hearts are bursting with love or aching with grief, or both. They may be scared or frustrated. Likely both. Caregivers deserve to be recognized and included with respect and dignity.

clarity, it is much more apparent to me why a caregiver is behaving the way they are. I am finding myself forming much better relationships with caregivers and that’s a win/ win situation for everyone! I like to think I have a better understanding (as much as someone can understand from the “outside” looking in) of the caregiver’s journey. While we are the medical professionals, they have vast knowledge to share with us about their loved one’s habits, baseline abilities and preferences. My vision going forward is to continue “tweaking” my lens to be sure I have a clear picture of both the patient and their caregiver. I don’t for one second believe that this small adjustment won’t make a big, big difference. It will ripple out for a much larger effect than this “old nurse” could ever imagine! Sincerely, Pauline Linton, RN Team Leader, Huron Perth Healthcare Alliance

I actually see this as more of a “tweak” than a change. I would compare it to adjusting the lens on a camera, ever so slightly, and the image becomes crystal clear. With this 3 CONNECTING THE DOTS

NEWSLETTER ISSUE 6. AUGUST 2018


About Connecting the Dots for Caregivers Connecting the Dots for Caregivers is one of The Change Foundation’s four Changing CARE projects across Ontario and is a partnership between six health care organizations in Huron Perth. Together, with family caregivers, we
are looking at ways to improve the caregiver experience by co-designing solutions, programs and resources that will ensure family caregivers feel valued, respected, engaged and supported in their important role. The three-year initiative includes four phases:

a a a Phase 1 - Planning and Engaging Family Caregivers – Fall 2016 to Summer 2017)

Phase 2 – Defining Areas of Focus and Co-Designing Solutions with Family Caregivers and Healthcare Providers - 2017 to 2018

Phase 3 – Pilot Services and/or Improvements with Partner Organizations – 2017 to 2018

Phase 4 – Further rollout of services and improvements - 2019

PROJECT PARTNERS Family Caregivers in Huron Perth Huron Perth Healthcare Alliance Alzheimer Society of Perth County
 North Perth Family Health Team
 One Care Home and Community Support Services South West Local Health Integration Network STAR Family Health Team

For More Information To learn more about Connecting the Dots for Caregivers visit www.hpha.ca Follow the project on twitter @CC_Connecting

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NEWSLETTER ISSUE 6. AUGUST 2018

Connecting the Dots for Caregivers August Newsletter  
Connecting the Dots for Caregivers August Newsletter