Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study
2. Materials and Methods
- What do family caregivers think could have been done to support them during the COVID-19 pandemic?
- What do family caregivers think they need to assist them to care for others and to maintain their own wellbeing as the risk of COVID-19 decreases?
2.2. Sample Selection
2.3. Data Collection
2.4. Data Analysis
3.1. Family Caregivers’ Situations and Their Main Concerns
3.2. What Could Have Been Done to Support Family Caregivers during the Pandemic?
3.2.1. Increase Resources to the Continuing Care System
3.2.2. Develop a Timelier Pandemic Plan
3.2.3. Reduce Silos in Healthcare
3.3. What Supports do Family Caregivers Think They Need in the Future Based on What They Learned in the COVID-19 Pandemic?
3.3.1. Recognition of the Family Caregiver Role
3.3.2. Partnering with Communication between Healthcare Providers and Family Caregivers
3.3.3. Access to Resources: Navigation Support to Access Resources
Strengths and Limitations
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Lives With||Lives Separately||Supportive Living||Long-Term Care|
|Family Caregivers’ Situations and Their Main Concerns|
|Balance the Risk of COVID-19 With the Quality of Life.|
|We had to weigh our chances of transmission of COVID or our mental health. So, a balance. During the day while my husband was at work, and I got respite so I could go grocery shopping or whatever. But now we’ve transferred that respite to us spending time because if we’re not solid as a couple then well, his care goes out the window. (Caregiver to immunocompromised child)||I’m not too worried, I think part of it was following the guidelines and I was still going in. But between my mom and I, we thought, if we do get it and if she dies or I die, it’s better to be together and have this a meaningful time together than to not see her and not know what’s going on behind the door. So, I’m feeling comfortable with that decision. (Caregiver to mother)||I think the biggest challenge is just the lack of social interaction, lack of family interaction. My mom has not been able to see her family in any real substantial way for a year. That’s my biggest concern. I was less concerned about COVID itself considering the level of screening and care that was being provided. That that was my biggest concern as well as the virus itself. (Caregiver to mother)||I have to say that [LTC] has had an amazing record of keeping cases to a minimum. So, they have done their job, certainly in terms of medical care and keeping residents safe. But I think the other aspects of the mental, social, and emotional support have suffered. Above all, they kept them safe, but they missed out on social relationships and real quality of life. (Caregiver to mother)|
|What Could Have Been Done to Support Family Caregivers During the Pandemic?|
|Increase Resources to the Continuing Care System.|
|They’re looking to cut as many costs as they can, but it doesn’t paint a very nice picture of what you get for care. The entire system is under-resourced. As we saw with the COVID, one of the big problems was the healthcare aides, who do a hell of a good job, had to cross over between private residences to acute care, designated supportive living residences, all of those because they couldn’t get a full-time job. (Caregiver to father)||Yes, the biggest problem with homecare is the constant changes of new people coming in and not feeling confident that they might bring COVID-19 in with them. And if they’re working at long term care facilities and then going to a personal home. That is not a new issue in home care. (Caregiver to mother)||With the two it is a heavy load. And I’m finding that my daughter’s group home has been fine, but where my husband is in supportive living, I need to spend more time there. Generally, like in all facilities, they’re short staffed, and so the three healthcare aides out of the five that do come in, and they’re run off their feet, especially seven to three shifts. (Caregiver to husband and daughter)||Yes, I personally think they’re underfunded from what I’ve seen. I used to go at least five days a week and spend from two to three hours a day with her. The more time I spent there, the less time staff felt that they had to spend with her. They’re so understaffed that when you can’t go visit now, all of a sudden, that resource is gone and now they’re hooped. (Caregiver to aunt)|
|Develop a Timelier Pandemic Plan.|
|Another thing the [Gym] started to do, they were offering some online exercise classes, very similar to what we were getting off of the PBS channel on TV. But because it looked like they were going to open again in a month they kept waffling on opening and closing and they never really put the resources and time into it. The restrictions were going to lift or partially lift. So, you didn’t get the place open, and you didn’t get the proper online support. (Caregiver to wife)||Well, certainly the home care should have had some directives or some protocols back in March when the whole thing hit. Because they didn’t have anything at that time, I will say that a couple of months, maybe three or four months after I had taken over everything, that I did get a call from one of the Supervisors. But really, they should have been able to get their ducks in a row long before that. (Caregiver to mother)||I don’t understand it. We were locked out from March until July and they should have planned what to do. But they are still short staffed. And since COVID, it’s amazing how I can see deterioration in quite a few of the residents. (Caregiver to husband)||Well, I think that the facility itself should have looked at the people like my mom and what damage is done. There’s a distinct difference between somebody who’s visiting and somebody who’s actually a care provider. And was there a way to mitigate the risk of us continuing to do what we were doing to my mom’s benefit? Now, she’s at the stage of Alzheimer’s disease where there’s very little can be done with her other than that one-to-one personal contact. Person-centered was gone. (Caregiver to mother)|
|Reduce Silos in Healthcare.|
|I couldn’t get rehab therapy because it’s out of the hospital. And they didn’t want people coming in that had already been discharged. Everything was just cut off that normally you could have gotten. And yet that’s so silly because at home, it’s just the two of you, it’s not as if you are going to have COVID-19. You’d be more likely to get it in the hospital from them. There’s been such protection around acute care and nothing for people at home. (Caregiver to husband)||It boggles my mind that, like all these programs that we’ve tried, I mean, we’ve really tried to get my aunt on some caregiving funded programs. It has been beyond a nightmare trying to help her in these situations because although the money may be there and in theory a program exists, that does not mean that a program is accessible and that the average person who is maybe not that skilled with these types of applications can actually access the funds. (Caregiver to grandmother)||Okay, my biggest challenge is there’s this huge discord in communication between the lodge and our home care and the doctors. And that communication is frustrating. Now, we have more home care coming into the lodge and doing more things, but in order for anything to happen with my mom, the Doctor has to do it through home care. He can’t do it directly to the lodge manager because she’s employed by home care. (Caregiver to mother)||Every time he has been moved, I have to learn the ropes all over again. We can’t keep our family doctor; they gave us a new one in [Facility 1] and then when they transferred him to [Facility 2] we were assigned another family doctor. He didn’t know the last family doctor; he doesn’t know the new family doctor and I don’t either. We don’t know the staff or how the system works. Some things are better though. I had to pay for his medications and incontinence supplies when he was in supportive living, but that is covered in long-term care. (Caregiver to husband)|
|What Supports do Family Caregivers Think They Need in the Future Based on What They Learned in the COVID-19 Pandemic?|
|Recognition of the Family Caregiver Role.|
|I agree that respect and support for the caregiver is underestimated part. When our case manager first met us and started to think she couldn’t believe that we were doing this 24 hours a day, 365 days a year, she immediately put in for the respite. But we never asked for it. I wish I’d known about that years earlier. (Caregiver to child)||I think there should be more recognition for the family caregivers and the value that they bring. I don’t think that caregiving is valued as much as it should be, and the current system is not working. I mean, there’s people that are in positions to help their family with caregiving, but we need a better partner. (Caregiver to mother)||And I think for caregivers all the responsibility for things the lodge can’t do now becomes yours. One person is the essential caregiver. So, whether it’s just visiting socially, her washing, taking her to appointments or picking up her grocery list, everything becomes your responsibility at some level. But no one says thanks. (Caregiver to mother)||Yeah. I mean, knowing that your concerns are heard is great. They need to recognize the caregivers. You want to know that you’re not being ignored. (Caregiver to mother)|
|Partnering with Communication Between Healthcare Providers and Family Caregivers.|
|There needs to be better communication about what the home care staff can and need to do. Well, even the respite care, you have to show them the suction machine, some of them been trained but not all. Some wanted to call the office and have somebody come out and train them. And that stuff was in the folder when they came in the door, and they had to read what they’re here for. And once again, many overemployed so, undertrained for what they had to do. (Caregiver to wife)||Well, the communication needs to be improved. In business you can’t have people in top management positions coming up with all the ideas and making all the decisions. You need the front-line workers to be trained in communication. They need to tell management where the challenges are. You need to know from the families what we need, what could be better. And then you put a plan together. Everybody in this together. You really need it from a personal perspective, from front line care workers, families, clients. (Caregiver to mother)||There are certainly newsletters that come out very frequently in beautiful large type and well presented once or twice a week. So, they communicate well in a written perspective, but not in terms of direct one-on-one. Really there was no kind of conversation from the staff about my mother. (Caregiver to mother)No, communication is very poor. If we have concerns, we are to contact the LPN. And so, on several occasions, when that happens messages don’t get through. (Caregiver to father)||I find that there’s lots of information coming out of the facility in the form of emails and that sort of keeps you up to date. The one thing I do find is that the meetings are less of a discussion and more about here’s what we’re doing and if you have any concerns. Well, a lot of people who don’t have my background don’t know what to be concerned about. So, there’s not a lot of concern expressed because families don’t even know what questions to ask. (Caregiver to mother)|
|Access to resources: Navigation support to access resources.|
|And I certainly hope that those people that need the help get it, and the one thing I guess that really irks me is the fact it’s so difficult to find out about these programs. It takes years to know about them. You know, even Caregivers Alberta, I only just found out about this past year, and I’ve been a caregiver for my mom since 2007. Here’s the rub. I can find out more about my car on the web than I could ever find out about what I needed as a caregiver. (Caregiver to father)||If I had half an hour extra day, I would go online and research what potential things I could use. But I don’t have time. By the time I make it home at night, I have dealt with crises all day. I’ve got nothing left, just nothing. And I’m a researcher. I’ve developed programs. By the end of the day, I can barely move. So, who has time to get on the computer? (Caregiver to mother and father)||I don’t think those finer grained, how things work is explained. From my experience, it is better to work from the bottom up to get what [name] wants, then it is to work from the top down. I talk to his immediate caregivers. They look after the things that [name] and I want looked after. But no, what families can do and can’t do is not clear. You have to learn it bit by bit. (Caregiver to husband)||Does anyone really understand appropriate programs and services across Alberta’s continuing care levels? A key system gap is ensuring engagement of caregivers given the level of the care continuum. They come into the system not knowing what services are provided at that level, what they need to do, or must arrange to have done. Really families need a LTC receptionist that will bridge the information sharing gap. Someone to explain the system and how to navigate it. (Caregiver to mother)|
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Parmar, J.; Anderson, S.; Dobbs, B.; Tian, P.G.J.; Charles, L.; Triscott, J.; Stickney-Lee, J.; Brémault-Phillips, S.; Sereda, S.; Poole, L. Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study. Diseases 2021, 9, 70. https://doi.org/10.3390/diseases9040070
Parmar J, Anderson S, Dobbs B, Tian PGJ, Charles L, Triscott J, Stickney-Lee J, Brémault-Phillips S, Sereda S, Poole L. Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study. Diseases. 2021; 9(4):70. https://doi.org/10.3390/diseases9040070Chicago/Turabian Style
Parmar, Jasneet, Sharon Anderson, Bonnie Dobbs, Peter George J. Tian, Lesley Charles, Jean Triscott, Jennifer Stickney-Lee, Suzette Brémault-Phillips, Sandy Sereda, and Lisa Poole. 2021. "Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study" Diseases 9, no. 4: 70. https://doi.org/10.3390/diseases9040070