Advice for professionals and society
For the most part, the caregivers we interviewed spoke very highly of the healthcare professionals they interacted with. Still, they had both good and bad experiences. A few had very upsetting experiences that left them with feelings of frustration and anger, and sometimes led them to file a formal complaint. Some felt that particular healthcare professionals had made a wonderful difference in their lives and those of their loved ones. We asked caregivers what advice they would give to healthcare professionals—such as doctors, nurses, managers, and policy makers—based on their experiences. Many of those interviewed suggested that healthcare professionals in general could improve their service by involving the caregiver more and by providing timely information about available resources. Another major piece of advice was to also care for caregivers and make sure that they are well and can continue in their role as caregivers.
Information for caregivers
Caregivers are not always aware that they are actually caregiving and thus do not attend to the consequences in terms of their own healthcare needs. It isn’t always easy for them to find information and support on their own. Medical professionals may often be in the best position to help the caregiver find the relevant tools and resources.
Barbara thinks that physicians can help people identify themselves as caregivers and help them find support.
Transcript
I would love it if healthcare professionals had at their fingertips almost a package of “Okay here, you are a caregiver. Here are options for you of places to go and places to ask for help; some of them are online, some of them are support groups in town, […] […]
Christine hopes that ensuring support for caregivers soon becomes part of the routine process when patients and their caregivers seek help from the healthcare system.
Transcript
So I think it should be once someone has a chronic illness or is in need of the caregiver—has a caregiver—I think that not only should the person who is ill get the help and the doctors involved and nurses and social support—the social services—but I think when they realize […]
There were simple and practical suggestions about providing information to caregivers, such as placing posters for caregivers in physicians’ offices, having a list of support organizations available for caregivers, but also to take time to help caregivers navigate the medical system or direct them to support groups for caregivers.
Barbara would like doctors to recognize that caregivers are an important part of a patient’s circle of care. If caregivers are engaged, then doctors' jobs are easier.
Transcript
Generally I’ve had respect from the doctors that I deal with, but I think I earn it. With all dad’s hospital visits, I would be there in emergency, sitting beside his bed with my recipe cards of every medication he took, every visit he went to the hospital, every diagnosis […]
Richard feels that when one is sick, two need help. Richard’s physician recognized that he, as a caregiver, needed support and care as well. Similarly, Shayna explains that for every ill person, there is a family member who’s drowning. Ideally, caregivers should be supported too.
Healthcare professionals should talk to caregivers and remind them that they need to take breaks. Anne ended up in the hospital after breaking down due to stress.
Transcript
And talk to the caretakers about finding time, or help them find time, that they can get away and get a break so they don’t have a breakdown. And the thing is, I realize too because my mother-in-law—oh no, my dad’s second wife, yeah—she had the exact same thing happen […]
Others suggested that health care professionals should provide moral support for caregivers as well and be pro-active with assistance.
Claire suggests that health professionals ask for the caregivers’ perspective. Some care decisions may impact their lives in ways you may not realize.
Transcript
I think it’s just that thing, I think which is probably relatively common, is that I think anyone with a disability—well any of us, in general have really unique needs when it comes to our healthcare, right. And Luke in particular has very unique needs because he’s a pioneer. So, […]
Medical approach
Several caregivers felt it was important that medical professionals realize what effect their attitude or approach can have on the people receiving care. Anna’s husband was told continuously in the rehabilitation centre that she would likely leave him now that he was sick, and she found it horrible that people would say this.
Lillian suggests that professionals try to have realistic expectations about the caregivers’ ability to change the care recipient’s state.
Transcript
Lillian: Yeah I think that’s a really, another really good point. I found that period very trying when he was… and I don’t think people intended that, but it’s something that I would definitely… a message to the healthcare system in general or the care system in general is that be […]
Having a single professional follow a patient and family over time is important; the Smiths had a good experience in Holland.
Written testimony
And there’s nonsense of reassessing and assessing and assessing, that should be done with. It should be one assessment and that’s it. And somebody should follow that, and then they can see the difference. See, if somebody drops somebody on you, you don’t know how she was before and after because you never seen her before. And that’s why they fouled up in the hospital, because an old bitty in a wheelchair was rolled in there. “Well yeah, she’s very old and she doesn’t talk much English.” Well, most of them, you don’t speak English, right? […]
But when my mother-in-law got into the hospital for a stroke, we could see the difference of course, right? But they can’t. So, they didn’t catch on that fast, and it was a light stroke so you don’t see it. And, if a single person was a case manager there, they could have seen the difference from now, before, and after, and she could say, “Okay, something is happening, and something needs to happen.” And that person should be able to direct the care and make it happen. And that more or less happened with my mom in Holland, and I thought it was actually really… that was actually quite smart how that went there.
Well, it would take off a ton of our stress. Now we were able to deal with it, but I’m sure a lot of people won’t be able to look after this like we did, right. And well, good luck them. If you sit in a wheelchair, good luck to you. You are going to suffer.
Healthcare professionals should talk to caregivers and remind them that they need to take breaks. Anne ended up in the hospital after breaking down due to stress.
Transcript
Oh there’s many ways I think they can improve service. Like these agencies that provide people to come into the home and help, if they’d stop trying to pull the hours away and try to make people feel like they don’t deserve those hours. Like that’s really wrong. I mean, […]
Many caregivers suggested that healthcare professionals should remember that patients are still people. Val suggests that homecare attendants should treat patients more like family members. Other suggestions for professionals were to listen carefully to what the patient and caregiver have to say, to be honest, and practice empathy. And as Madhu and Shayna explain, the approach to individual situations should not be ‘one size fits all’; different people and families each have their own special needs. Factors such as people’s religious and cultural backgrounds may bring different needs and expectations into discussions about care and treatment.
You can read more about caregivers’ experiences with the healthcare care system in the Resources section.
Societal recognition
Several caregivers stressed the importance of broader recognition for caregiving within our society. They would also like to see more policies in place to support caregivers in their tasks.
The Smiths never expected to become caregivers: they say caregiving should receive more attention in today’s society.
Written testimony
Mr. Smith: Yeah, I think it’s extremely important that this whole issue of caregiving is put more into the publicity—on TV, on the radio, whatever kind of programs. Make movies about it. Doesn’t matter what. People need to be aware that this can happen to you. This whole caregiving business, it was a complete surprise to me really. I’d never thought about getting stuck in this kind of stuff. I mean you never think of it.
Mrs. Smith: Like getting old, you never prepare for it either.
Mr. Smith: You’re not prepared.
Mrs. Smith: What happens when you age, that’s another element which nobody’s ever prepared for. Especially this baby boomer generation is never prepared for getting old.
Mr. Smith: Yeah, you see the commercials on the insurance companies, all the people in their little shirt or in the shorts. Old fogies in their shorts, on the beach and all this stuff. Happy after 11. There are reverse mortgages; you can live happy. No, you need to do caregiving. The chances are much greater that you do that. So, we’re living a bit of a lie as far as that goes. So, that’s why I think it’s extremely important that this is be put very more in the open. The plight of the caregiver should really be published really where ever we can, so people learn about this stuff; this happens. So people can prepare. And I think somehow it should be taught somewhere… somewhere, I don’t know where you can teach this. Nowadays, school has to do everything for teaching, but maybe it has to be… somewhere it has to be pushed into people that this is an issue. I don’t know what you can do about that. At least if you start putting it on the radio, maybe make a nice couple of good movies of it, and TV programs for it, maybe it starts, right? And then of course, when we come along then, well, either it started or it didn’t.
Hélène suggested that caregiving be included in educational programs for children so they are more aware and can learn basic caregiving skills.
All of the continuum of care, there are caregivers involved. And I think that caregiving is noticeably absent from policy in all the sectors. So, I would hope that there would be influence from researchers. And once again, we’re very fortunate in this province because we do have people who […]
Susan stresses the importance of adequate policies among employers.
Transcript
Kai is a former youth caregiver. He says youth caregivers need support and recognition.
Transcript
Well, like I said, like if they could give us some support in terms of respite care, financial support, academic… advocacy—because I know if I didn’t have my mom, I wouldn’t have a clue what questions to ask at the doctor’s, what I need to know in terms of caregiving. […]
Michael says we need to change the way we think about caregiving and welfare.
Transcript
Michael: So you asked the question “What would you want to say to policymakers?” I guess another thing that I find really maddening is that, as an adult now, Oliver receives around about $930 a month for disability. That’s for food, shelter, clothing, entertainment and all of his other. Lillian: Accommodation. Michael: Well, […]
Claire believes that policies and practice regarding financial and other support for caregivers must be flexible from person to person.
Transcript
Yeah, the financing of support, and being able to have outside caregivers in the home when they’re needed. And everyone needs such a different level of support, or wants such a different level of support, but there should be some flexibility in that. And some choice around whether caregivers are […]
Review date: 2019-09