Table 2 Themes and subthemes with illustrative quotes

Experiences in the healthcare system amid the pandemic

Lack of healthcare services access and increased hospital restrictions

“It’s quite hard in the hospital setting as well, you know, getting appointments, taking her alone. When she has an appointment, it’s really hard because they only allow one caregiver to go with her. This is the worst thing for me because I plan to manage 2-3 appointments in 1 day. There is an upcoming appointment next Tuesday, so 12 o’clock there is long-term ventilation clinic appointment, the second is at 2 o’clock and it is neurological, then VNS appointment. In between, they asked me to do the x-rays for her and bone density because she’s due for endocrinology because she has disuse osteoporosis, and they want to monitor her. So you can imagine and she’s big. I have to transfer her every time. I have to change her. I have to do everything. I’m thinking about next week like how am I going to manage it because I have to be doing everything all together in one appointment.”

“There needs to be a nurse, my husband, and myself, because there’s so much medical equipment, like we’re a mini crash team. So, for safety reasons, we have to be three. People aren’t understanding the magnitude of care that this child needs to keep her safe. I think more needs to be done to understand and support families. It’s a huge form of stress. Every time I come in, I have to advocate every single time for my kid. It’s exhausting.”

Benefits of virtual care use

“That gave me a sense of connection to the respiratory team. I knew we weren’t actually seeing them which was hard because we’re so secluded in our home. But, having that connection and easy access to them, and them to us, made a massive difference. I didn’t feel like I was all of a sudden by myself.”

Negative clinical interactions and communication breakdowns

“Also, they don’t treat her properly either. For example, one of our hospital experiences during the pandemic was that a nurse didn’t even acknowledge her, didn’t even talk to her, didn’t even warn her that she was going to stick a thermometer, like a rectal temperature. So she shoved it in there. X had tears coming down her eyes and the nurse was oblivious, had no idea she put my daughter into discomfort. Why wouldn’t you warn her? Why wouldn’t you say, X, I’m going to take your temperature, it might hurt a little bit. Just warn her and prepare her. You would with a typical child, you would definitely do that with a typical child. Why would you not do that for her? Does she not have value enough for you to do that?”

“If it was a regular child who could speak then you would treat her differently, but because she doesn’t speak, you’re assuming that she doesn’t understand. So you treat her differently. It’s not fair. It’s not okay. How would you feel if somebody is ignoring you and talking above you?”

Common challenges during the pandemic

Financial strain

Interviewer question: “Would you say there’s any changes in the last year with regards to your finances during the pandemic, has it increased?”

“For sure, because I’m off work. I’m only getting a certain percentage of my salary. I mean, at least my benefits are still there. So it’s covering some of the medical things, but even her medicine, some of it is covered some is not. So we’re paying out of pocket for so many different things. That’s the piece where nobody’s really looking at the big picture of like, what are the parents actually having to fork out? But we have, hundreds of dollars of medical expenses for prescriptions every month, it adds up. So it’d be great if it was covered.”

“So hydro is through the roof, we spend a lot of money on hydro, because all the medical equipment is running all the time. But we don’t get a rebate for it, we don’t fit the criteria because we’re not in the right bracket, financially… Again, like you’re maxing out your credit cards, you’re maxing out your lines of credit. So financially, you’re not in a good place because your expenses far exceed everything else because of all the medical needs. She’s so expensive because we’re paying for nursing, and yes, insurance will reimburse us, but we always have to have disposable income to pay large lump sums constantly where it’s tied up for months at a time. Eventually you get reimbursed but again, you always have money tied up. We’re lucky. We have lines of credit and credit cards, but other families don’t have that. They’re in even dire straits.”

“But the burden of finances isn’t just a burden of finance, the fights that my husband and I had was about, did we fill out the paperwork? Did you get the insurance money back? Did you make sure that you kept that receipt from that mundane supply that you bought at X, because the only way we’re going to get money back is if we have the receipt and filled out the paperwork. So, things other families would just, you know, like diapers, for example. There’s a diaper support, and there’s funding to support it, but you have to track every single box of diapers and wipes that you ever bought. The second that you don’t, they send you a document that says, we’re auditing you where are all your receipts for your diapers… You should see us filling out our paperwork to get money back, we have an entire kitchen table filled with papers and receipts and documents that we have to send to four different agencies, you know. We have to send it to the federal government, we have to send one to their insurance. It’s ridiculous.”

Balancing multiple roles

“Usually, most days, I’m a respiratory therapist. I do homeschooling or virtual school. I’m her nurse, her caregiver, her mother, and her administrator. I’m her advocate… Then, I’m a mother, a wife. That’s over 10 hats that I have on every day. Plus, I used to work outside of the home. I shouldn’t have 10 hats, though. To ask me because I’m her mother to be supermom is not sustainable. I’m her mother, I shouldn’t be her nurse and all those other roles.”

“Keeping him safe, keeping ourselves safe, and not having people enter the home is really hard. I’m a very family-oriented person. I’m very close to my mother and father, but because of everything that is going on with the pandemic, I couldn’t have them come to the home. I couldn’t have my sister, brother, and uncles. I’m sure my older son probably had a hard time because he couldn’t have his friends come over either. I think that was the most difficult thing, keeping him safe during this pandemic, and not having nursing and me and my husband alternating a 24-h shift together.”

“My days are completely full. I don’t know from 1 day to the next whether a nurse will be present or not. Even if a nurse is present, we’ve lost a lot of experienced nurses. Now, we’ve onboarded a lot of newer people, we have a call bell that gets pressed daily. For emergencies, we’re like a mini crash team where we have to basically mobilize, come down, and help and support. During the day, I have zoom calls with the hospital, there’s multiple teams involved, lots of coordination of care, prescriptions to be ordered, medical supplies, equipment, and trying to order in repairs. There’s so many moving pieces. For paperwork, I have claims to fill out, apply for funding, schedule nurses, bill nurses, train nurses, like every day is a full day. So, by the time the day ends, I’m exhausted or I’m crashing. Every day is full like you can’t turn it off.”

“On top of all that, I’m doing advocacy. A group of us got together came up with nine recommendations to help with the homecare crisis, have been trying to get through the front door to the Ministry of Health since September. We’re not getting anywhere, that’s where it’s so frustrating. As parents, we have possible solutions to help with the major problems happening. But we can’t even be heard because we’re not in a position or authority… I’m a real person, I’m struggling, I’m calling out. It’s a lot for me to even ask for help or to come forward, because my life is so chaotic, to not be able to get through the front door is really frustrating for me.”

“… you’re always fighting and advocating for your child. It’s silly things like, the schools don’t always have working elevators. I work in a separate school, and we don’t have a working elevator, like basic human needs are not readily available for children like X. So those are things, like I shouldn’t have to go to weekly meetings, I shouldn’t have to fight to get the basic needs for my child. Those are the other things on top of being a mom, the working, the being a nurse, like other things you shouldn’t have to go through which exhausts a person.”

“Well, there’s no end in sight. For me, I know that there’s nothing in the pipeline, the nurses that I have are the nurses that I have. I called so many agencies to try to hire other nurses. I’ve got so many barriers around me. But I’m not giving up. It just takes so much out of me everyday to advocate for supports… It’s the same pool of people that all of us are competing for the same people. That’s where it gets frustrating because there’s nothing I can do to improve my situation or my lot. I’m not going to give up, which is why I’m advocating because if nothing changes, we’re going to be in worse shape down the road. I’ll be in worse shape down the road. So, while I have a little bit of energy, I feel like important to speak up right now.”

“So, all my attention is only on X. I do have a 19-year-old son. He has been through a lot, obviously, with X and then having a brother with this condition. He loves him to death, but we tend to just focus on him and not really focus on the 19-year-old even though sometimes he needs us. That’s a stress alone by itself because he’s dealing with his own things, and we don’t know how to meet his needs because we’re dealing with our own things.”

“Also, it was really hard on our daughter. She’s older, and we would go to the hospital and leave her at home and didn’t realize that she was not feeling a part of things and kind of left out. I learned that along the way, but I mean, she was always left behind. So, it was tough to be in two places at once. “

Inadequate homecare nursing

“I was in deep sleep… I’m hearing her alarms going off. … she was bawling her eyes out screaming for the nurse. I go downstairs, and she’s inconsolable. She’d been screaming for the nurse for about 45 min. I go to where we have a nursing station set up in our basement where my daughter’s room is. … the nurse is asleep on our couch which is around the corner. I literally just woke her up and said time for you to go home now because if that was an actual true emergency…”

“Well, and with COVID and now with what’s happening with the nursing system collapsing, all the resources were taken out of homecare to go into hospital and long-term care. But there hasn’t been any influx of new nurses coming into homecare. So, what is there is bare bones. It’s hard to retain staff, it’s hard to onboard staff. While we were in the hospital last time, we lost five nurses. So, it’s like having to onboard new people that don’t have the right skill set, and just plugging in holes. But, that takes a toll because you’re always on because they don’t have the skill sets to take care of her. So you need an ICU nurse, but you’re getting mental health nurses and nurses that are very inexperienced who can’t clear her airway and you do most of the tasks required for her daily care.”

“During the pandemic, not only did we have nurses call in sick at the last minute, because they might not have passed the screening or they had a sniffle, but we also had nurses leaving us. It’s much better to do day shift or doing tests at a testing… We had nurses that had to isolate because they were caring for their elderly parents so they left work because they couldn’t be exposed. But it was learning about that at the last minute. So like, if a nurse was on shift, and then they quit, there was no two weeks notice during the pandemic. There’s no two weeks notice on being sick or having symptoms. So, we were finding this out constantly, shift after shift, week after week, after working a full day caring for my child on my own.”

“You just barreled through, there was no preparation, there was no result. During the pandemic, there wasn’t even a thought process. Pre-pandemic, if a nurse called in sick on a Friday night, I would say, can we get a nurse in during the day on the Saturday, which we normally wouldn’t have, but it would give us some time to sleep, right? Or, can we get a nurse to stay an extra two h in the morning just so I can sleep the next night. But that didn’t exist in the pandemic because we just wanted a nurse. So, I wouldn’t even rock the boat by asking for anything because I didn’t want to potentially ruin the ability to get a nurse.”

“Then, the real frustration is that you’re not really dealing with the person that’s in charge of it. So because of that, you have no way to hold people accountable. Like if I go to the hospital and my doctor misdiagnoses me, I can hold that doctor accountable by complaining and speaking to them about that mistake. With nursing, if somebody doesn’t show up or quits and doesn’t give notice, I can’t call like there’s nothing we can do. Such an important part of managing complex care is having people that you can trust, that are consistent with the way in which you sort of do things. As parents, we must lower our standards just to keep people here, so that we can sleep and be productive human beings. I was at the ministry when talking about some other aspects of my daughter’s care and the cost of treatment and so on. I know that in the calculus, they really don’t put a high enough cost on the lost productivity of the caregivers when care is offloaded onto the caregiver. So when care is offloaded onto me, the amount of lost productivity is incredibly high. Earning potentially drops, there’s a bunch of things that drop, and then there’s a bunch of other knock-on effects that impact.”

Pandemic’s impact on FC well-being

Physical toll

“I have to wake up around 7:00-7:30 to give her the medication before starting her feed. I have to start at 8 so it can finish at 12. I have to change her, dress her up, put her on the wheelchair, everything. Before starting the feed, I do the mouth care. We have to give her the Ventolin puffs, and then start her feeds. Then, around 12:00 pm, when she finished her feed I bring her out and I have to change the diaper again. I cook that time… Meanwhile, I have other daughter also. So, leaving her at daycare and everything. Then, before 2:00, I have to give her the medication again. So, 2:00 we start her feeds to roughly around 5:30-6:00. We have to finish her feed so we can give her 8:00 medications, again, in between we have a couple of medications. Then, 8:00, we start her feeds and close it around 11:00. Then half an hour gap we give her for water because she’s not catching up the water. We have to start at 11:30 after changing the diaper. So, around 12 am my routine is finished with her.”

“Well, thank god that my husband wakes up early. He would get up early and give him his medication at 8:30. Then, he would do cough assist at 10:00 and he would have to give back meds at 12:00. By 1:00, I’m usually up because I sleep late in the night. So, I wake up at one, and I will do his meds at 3:00. I will do cough assist at 4 and I will give him his meds at 6:00… So then my husband will have him at 7:00, at 8:00 give him his back meds and do another cough assist. Then, he would say, okay, M, it’s your turn. You’re going to sleep with him tonight. He will watch him from 6:00-11:00. Then, at 11:00, I will take over, go in the room with him and just be with him.”

“One thing, and I know that it’s for our safety that the hospital did the caregiver thing, but people like X need to have exceptions. To have more than one caregiver to come for appointments, because lifting X and even sometimes it’s hard for me to change her diaper. Now, we have to do the bone scan and x-rays, I’m the one who’s doing most of the things and it’s hard myself.”

“So in terms of the burden of care, there were tons of things to learn, things to constantly watch out for, and things to be on top of so that you were prepared in case of an emergency. So, we call it a go bag. That’s his bag with all of his care equipment, his suction machine, spare trache kits, all that sort of stuff. So his bag is constantly checked and rechecked to make sure if an emergency did happen, everything was on hand, you know.”

“Then, getting ready for bed is a whole other set of routine. So making sure, he has a feed made, hooking up his feed, making sure his ventilation is hooked, all that sort of stuff. Every story that I tell in a practical day, I’m not including and maybe I should is the lifting and carrying the vent, bringing the vent, you know, can I carry the vent? Have I packed everything in enough bags that I’m not carrying loose items everywhere, but how can I plan to carry all this luggage or all this stuff that as one person, I could manage that all by myself, right? How was I going to carry it? So we would take a stroller so I could push everything, but I had to make sure everything fit on a stroller. So all that planning, lifting, carrying is kind of embedded in the story without being explicit.”

“You got to capture us in the hospital with bracelets to see how much sleep we’re actually getting, how much rest we’re getting, for taking on the role like we are in the hospital, but I’ve never felt so alone. And so, so unsupported, as it has been since COVID. With the hospital. Yeah, I’m surrounded by medical staff. But I’m still expected to do everything. And it’s like, but how is that sustainable? Like I’m more exhausted going in hospital than and being at home with less supports at home. And I decide that that’s a sad situation. So I dread going in, because I know that I’m going to be ill for a week afterwards and have physical manifestations because my body shuts down because I’m that exhausted from the hospitalization. Because I can’t sleep, when am I going to sleep if nobody’s there to watch over her?”

“When the pandemic first hit, our nursing went to hell. So essentially, we couldn’t have the nurses in the home. We were having like 4 days on and 4 days off. So one of us would stay up all night with her, then work, and then sleep. Then, we would switch back and forth. So we did that for almost the whole first year of COVID… But, you know, I can flex my schedule. So it was a little bit easier because of that, it would have been impossible otherwise. Then, of course, all of that tension and stress just makes everything more difficult, right? Everybody’s on edge all the time, but everybody’s bored. It’s been incredibly difficult.”

Mental toll

“I can’t even grieve and process the fact that my daughter’s dying. I can’t even wrap my head around it. I can’t even think about it because I don’t have time. It’s that piece that people forget, like when do I have time to really process and think about it? I don’t, I’m always in survival mode. I’m jumping in doing whatever needs to be done. So it takes its toll.”

“I’m in a tailspin mentally, right? COVID made things worse, I’ve got more roles to take on. I have no supports, and I was crashing.”

“So, the 30,000-ft view is that prior to the pandemic, we were still doing a pretty good job of separating our parental roles from the medical needs of X. We could go from one mode to the other, and those things could be separated so that we could have our normal interactions, and also do the medical stuff. I think one of the things that COVID ended up doing because we were 24-h a day, seven days a week locked down, it sort of collapsed those things together. So, we were working and we were nurses all day, right? We prepared all the food, prepared the medicines, did all the medical checks, kept all the charting, did the overnights, and so on. That was difficult and caused a tremendous amount of stress.”

“Well, we had to be isolated. So we didn’t have anybody coming in. That’s the whole thing. Whatever supports we had before everything is gone. So even family that used to come sometimes. My mother-in-law would come for a week and help out, cook and clean and help out with the house stuff. She wouldn’t help out with my daughter, but she would help with the daily stuff. That’s one less thing I had to do because I’m still a housewife. I got to do laundry, dishes, all the regular stuff everybody does on top of everything else, right? So, it helps to have at least one less thing to do. She’ll make dinner so that’s one less thing I have to worry about. But they didn’t come because of COVID, everything was locked down. Everybody was not allowed to travel. So, we were on our own the whole time. So that’s why we were even more tired because we really didn’t have any of those supports. Then, as nursing supports dwindled, we were taking on more and more of a caregiver role, well, the nursing role. I shouldn’t say caregiver, it’s actually the nursing role.”

“I was a nervous wreck in the beginning. I just thought everything, and everyone had COVID. We locked ourselves in our houses for the first three months. I made my husband do ridiculous things, like as soon as he got in the house, take all your clothes off and throw them in the laundry. It was just ridiculous, terrified in the beginning… So, there was a lot of things combined, but COVID was a baseline. It just tore me apart in the beginning. It’s taken a lot of time and patience for all of us to adjust to this new normal, and eventually, we’ll get there. It took a huge toll on us. Isolation was really tough. It was really hard trusting that people were being considerate enough to let us know, if they were in contact with somebody else. We’ve had a few like, oh my gosh, you know, after the fact and not people being malicious, just not thinking and realizing that that’s what we really need. We need to be that much more careful.”

“We would be prepared and when the medication got to a certain level, we would tell the nurses to inform us so that we could go reorder medication, and that was always our way of making sure that we weren’t running out of medication. During the pandemic, even that lead time wasn’t enough because some medications were out of stock, or some nurses were working from home some weren’t. How do I get a prescription renewal when I’m doing a virtual meeting or appointment with my doctor. All those things were not simple but they were organized and we knew how to do them all, but that went up in the air in the pandemic.”