Improving Care Together
Learn how the Improving Care Together project approached improving the family caregiver experience at St. Joseph's where a co-design event attended by over 70 family caregivers, patients and healthcare providers identified three themes. From that, a new tool was developed and piloted in the geriatric inpatient and outpatient programs.
The binder actually originated from a co-design event. We had over 70 family caregivers, patients and health care providers and really we were trying to look at ways to improve family caregiver experience and engagement. So they chose and prioritized three themes that they wanted to improve. They were family caregiver involvement, family caregiver education and care transitions. The family caregivers, patients and health care providers felt that the binder could be used as a tool that would help improve all three of those themes. We trialed the binders on a small number of patients and families at Parkwood Institute in the geriatric inpatient and outpatient settings. The binder acts as a place where the staff, no matter what discipline they are from can put the information together in an organized manner. What I had been hearing for quite a long time from our teams was that there was no place to put this information and that it was often scattered at the bedside or patients had some information or educational material stuffed in their bag with their clothing and belongings. All of the papers they receive for education or their schedules is put into this binder so they know its one place to look if they needed any information. So it has helped in that organization, kept them on track, scheduling. We don’t find it has added much to anybody’s workload. We were documenting that same information anyway and so it didn’t take on anything more time wise and it’s actually saved time because it’s there for the patient and we can refer back to it. The tools vary depending on the care area that the binder is being implemented in. But the care areas that we piloted and we trialed on we had for example a roles list. We heard from family caregivers that they were often confused when there were a lot of different people coming into the room and they didn’t know who they were or what they did and so they wanted something they could refer to that had very general terms as to who this person is and what their job description is. The binder has improved the involvement with myself and family caregivers by allowing them to know who I am and how to contact me. A lot of times we want to reach out and we play telephone tag but now it gives them a place to find my name, my phone number and easily contact me at their convenience. One of the tools I really like in the binder is the discharge checklist. I think it’s a wonderful way to capitalize on easy to read, easy to review information that just allows people to put it up on their fridge at a glance, keep it in the binder, wherever they feel helpful. But I think it shows that these are the types of things we are going to address, these are the things you might want us to be addressing. It engages people like if you didn’t see us recording something you could ask that question, like, how come this isn’t indicated on my checklist and it allows us again to have good conversation about what is or maybe isn’t relevant to a patients care. The binder is really helpful in the transition to home because often in the hospital people are at a really vulnerable time in their life and people will often comment that they feel overwhelmed and there is a lot of information provided during that stay. And families are in and out, caregivers are in and out and I think when people get home they really start to process everything that’s happened to them. And most patients are going onward to some sort of outpatient follow-up be it with therapy, their family physicians, a specialist and so I think the binder allows them the opportunity to sort of reflect on that information bring it to those appointments review things and keep planning forward. Through the work of this project, the teams have become more aware and more alert to how much the family caregivers appreciate and acknowledge the information when they are provided it. For them to be as well informed as the patient is certainly paramount to their success. Organizationally I think it’s essential that we are all moving in the same direction. By listening to our patients and family caregivers we can implement very simple strategies that improve the overall quality of care and certainly the patient and family caregiver experience.
What an Initiative like time to talk can mean for caregivers?
No one ever said how are you doing today. They would smile, they would greet, they’d know my name, they would include me in the discussion. I felt not only did I have a voice but was respected as somebody who would be there for Paul as a support. I don’t honestly remember anyone saying I wonder if this is overwhelming for you. I don’t know whether if they did say that they might be concerned that now you were becoming the patient, so there would be a fine line. I think that people who ask that recognize that outwardly we look really strong and capable and inwardly we’re overwhelmed, we’re extremely tired, often our sleep is broken up we have so many things to take care of, so many balls in the air. And it was not an opportunity to go into a long discussion, but it was a chance to be acknowledged, so it gave me a chance to put my two cents worth in that maybe would give them an idea of where to go with that session. If someone asked how I was and I said overwhelmed it would be a natural question perhaps to say, what do you need. I don’t know what services we have, but can you get a sense if there is anything you need that we may be able to provide. It may even help me think walk away from that conversation saying what do I need? And that I think would be the beginning of a conversation that didn’t even have to happen with that health care provider. So if I need to talk to someone, gee do I have a friend who I can talk to? There may be people offering to help and I haven’t taken them up on it. So that one question of what do you need what would help you, I don’t know what we can provide here we might be able to but are there other resources in your life. And if they had the time to ask that, that would be a major step going forward.
My husband had surgery to do a bone graft for a transplant six years ago and they cut into a nerve and that’s when all of the pain started and that’s when all of the drugs, medications started. It really changed our lives because he really couldn’t function the way he did before that and I ended up taking a great deal of responsibility. We had a business and within a couple of years decided that we would close the business and he could retire. He had a triple bypass unexpectedly and he went back to the hospital two weeks later with a septic gallbladder. After his stay at UH we arrived at Parkwood at the Day Hospital. And he had amazing care. What I found as a caregiver at Parkwood was that the inclusion as a partner in care was there right from the first day. I was so impressed that the staff really meant inclusive, part of the circle of care, it wasn’t just come to the meetings because we are going to look after the patient. That so often happens. We are often invisible as caregivers and yet if this was theatre, the patients the star and we’re the supportive role. Sometimes people don’t realize the incredible fatigue and how overwhelmed it can feel. When you are a support person you need support. If you’re going to shine your light in the world you have to fill up your lamp. And the only way to really do that is to have the support of others and the encouragement of others. For me the support came in everybody’s greeting. Including me in the how are you today. A hello can bring a smile as quickly as anything else. And when you get a smile too with an energetic staff person you just feel as if you’ve walked into a hug. I think people go into the health care profession because they have incredible compassion, they want to help. And the most important message is use that smile, use the hello, use the names for the care partner as well, so they get their lamp filled up, so they get energy to be able to do what they need to do.