A total of 40 individuals participated in the study (22 caregivers and 18 health providers) (Table 1 and 2). No participants approached during recruitment declined to participate and none dropped out at any stage of the study. Participating caregivers were an average of 62.9 years (SD = 9.7) and about two thirds (63.6%) were female. The mean length of time spent in a caregiving role was 30 months (SD = 14.0 months). The caregiver participants cared for a total of 21 stroke survivors (Table 3). The average age of the stroke survivors was 63.4 years (SD = 12.1), and 61.9% were male. Participating health providers practiced across a range of clinical settings (Table 4). Just over one half (55.5%) of the providers had been practicing in their respective professions for 16 or more years, and one-half had practiced in their current position for three years or less.
Through analysis we identified five major themes pertaining to factors that impacted caregivers’ access and use of formal health and social services: (a) finances and transportation, (b) challenged to take care of my own health, (c) trust, (d) limited information and lack of suitable services, and (e) social support networks (Table 5).
Finances and Transportation – “You have to pay, well we can’t afford $50 or $75 twice a week”
Finances were an important factor that had notable bearing on caregivers’ ability to access and use services. One caregiver who was asked if he paid out-of-pocket for any services for either himself or the stroke survivor, responded with:
Okay I take her to [a day program]. So, we pay for that. I take her to a group physiotherapy exercise program once a week, so we pay for that. I take her to a foot care specialist chiropodist, so I pay for that. (SCG 20)
The caregiver in this example had taken early retirement to care for his wife and was managing her care on a fixed income. Some services and programs were subsidized, but the cumulative nature of the costs quickly depleted their monthly budget. Other caregivers echoed these financial worries and constraints on their ability to use programs and services. One caregiver said, “you’re looking at $25 a day [to attend a day program], you know. I think how you are going to support it, wow.” (SCG 08) This caregiver was referring to the cumulative costs of attending day programs, which included transportation, program costs and lunch. In that situation, the stroke survivor, who was in her early fifties, was unable to work and her spouse, her primary caregiver, was also unable to work because of cancer and its associated treatment.
Reductions in income and employment were commonly discussed by many participants. One caregiver commented, “yeah and he made good money cause he's a truck driver, so I didn't have to work. Yeah [he had to leave his job].” (SCG 09) Providers also identified that out-of-pocket expenditures influenced service use. They noted that the costs associated with attending programs constrained service use and they commented on the paucity of available funding streams to support caregivers and stroke survivors. For example, one provider commented:
Well, so, those ones [caregivers], must be very careful about every penny they spend. Coming to our day program or aphasia program there is a cost. And some of them do limit it; limit their attendance because of the affordability. And we’re pretty cheap. We’re six bucks for a half day. But if you’re on Ontario Disability Support Program…It’s gone pretty fast. Six bucks a week, yeah and then on top of that it’s the transportation, is another six bucks each way. So that’s an $18 day for half a day. Half a day. So that’s a big deal. It’s a real big deal. (HP 04)
Health providers and caregivers alike identified significant challenges in navigating supportive financial assistance which included having to complete large amounts of paperwork to access funding for equipment or to be reimbursed by insurance companies for costs they had already incurred. One caregiver indicated that:
My finances, trying to negotiate the myriad of government agencies has been a challenge and I've learned who to contact about things like disability tax credit and stuff like that. (SCG 20)
A health provider’s summation of caregivers ability to manage over time was explained in this impactful quote: “You know I think there are two major determinants. There’s the health of the caregiver and how much money they have. I don’t think there’s ever enough money to provide all the support.” (HP 08) The health provider’s comments capture the importance of finances in enabling caregivers and their care recipients to assess health and social service that will support their caregiving role.
While subsidized transportation can help facilitate access to formal services, not all people have access to this benefit. For example, when talking about potential services to transport her husband, one caregiver responded, “ah, distance yes. I wish I could get a service, a drive to [husband]’s day program, but apparently we’re in a dead zone or something.” (SCG 06) She was referring to the fact that she lived in a rural area that fell on the border between two jurisdictions, which complicated gaining access to services such as DARTS (Accessible Transportation Service) or Wheel Trans to assist with transportation. Furthermore, using public transport or even subsidized transport was not an option for all stroke survivors. For example, another caregiver spoke about the challenges she faced in getting transportation services for her husband:
We got him into [program], and then [name] is going to help drive him, and stuff like that because he didn’t have transportation and I also had to be at work, here in [location], and he didn’t qualify for, what is it? Wheel Trans, or whatever….
Because he was ambulatory, and he could walk the 75 m or whatever the assessment is but cognitively, he’d walk out in front of a car. (SCG 10).
In that situation there were services available, but the stroke survivor’s circumstances of being physically able though having a cognitive handicap meant that they could not take advantage of them. In this instance, the caregiver was left struggling to find an alternative form of transportation, which often did not exist, or meeting the transportation requirements themselves. This caregiver’s experience was echoed by a provider:
So, I mean in terms of efficiency for the patient and family, not always ideal. And also, a patient has to be cognitively able to ride alone. Right. It’s very rare, there are I think exceptions where I think, like if a spouse or family can go with the patient, but there’s always a big question around can the patient ride alone. And again, a huge part of our population is not able to ride alone. (HP 03).
This provider had extensive experience with stroke survivors and those who had experienced traumatic brain injuries. She pointed out how people with cognitive limitations can end up being marginalized by the constraints of the services available.
Challenged to take care of my own health – “How can I find the time?”
Caregivers and providers noted that limited time and coping ability hindered caregivers’ ability to use services to support their health. One health provider recounted a tragic situation where the caregiver was neglecting her health:
I was doing home visits with them because her health was really going downhill. She had terrible pain…Like she wasn’t moving off the sofa, and the guy was in a wheelchair and... I said, “Look you have got to go see the doctor and have them investigate this back pain” … She neglected herself. So, it ended up that she was full of cancer, and she died… then he went into a retirement home then he died. (HP 04)
Another contributing factor to the difficulty caregivers experienced in taking care of their own health was that there were few services available such as respite that would give caregivers the valuable time and space to engage in health supporting behaviours. In many instances respite was available once per week and that time was allocated to attend to tasks of daily living such as banking, groceries, and other household chores. One caregiver noted, “you know my three hours is spent going multiple places and shopping and doing other things like car appointments.” (SCG 20).
Constraints in the health system and limited system wide attention on the importance of caregiver health were integral in influencing caregivers’ ability to take care of their health and use supportive services. Health providers talked about the gradual decline in health that can affect caregivers over the long-term, “they get depressed. They get anxious. They’re worried all the time, about their loved one and their health suffers.” (HP 05) Providers clearly identified and understood the difficulties caregivers were facing but they acknowledged that the solutions such as increased respite, improved advocacy for caregivers and inclusion of the caregiver in the circle of care were difficult to achieve within the current health and social context. One provider remarked:
The take care of yourself is a, it's a superficial comment. On the other hand, it's difficult to learn enough about the caregiver sort of medications and whatnot to ...We can't be the caregiver's doctor. (HP 14)
These health providers could not supply the services that caregivers needed. But the caregivers also didn’t have the time or resources to access the services so often they went without.
Trust—“He’s breathing, but is that good enough?”
A common experience among caregivers was their difficulty trusting that if they left their loved one alone, they would still be all right when they returned home. In some instances, the caregiver had a negative experience that eroded their ability to trust, for example one caregiver recounted:
When he had his first stroke… I said to him “(husband) I’m just going to run to the store. I’ll be gone for just a few minutes.” I came home, like honest to God, fifteen minutes later, he’s in the kitchen, he’s got a tie kind of half on over his pyjamas… He thinks he’s getting ready to go to work, and he’s making breakfast… I said, “what are you doing?” And he said, “I’m making breakfast for us.” I said (Husband), “it’s 8 o’clock at night.” … and he said, “but don’t worry I’ve already taken my morning meds.” (SCG 04)
The caregiver’s ability to trust in safely leaving her loved one was challenged on many levels. Not only had the stroke survivor confused the time of day but he had also engaged in two potentially life-threatening activities: (a) taking his morning medications at night, and (b) his struggles in using an appliance that could potentially be a fire hazard.
Another caregiver described her concerns about trusting that she could safely leave her loved one alone, particularly at night:
But my fear as far as sleeping at night, it's a little bit better now. It's not as bad, but every once in a while you'll get this well, I wonder if he's okay. But you know you're watching and yeah, he's breathing but is that good enough? Because he isn't going by himself. Because that's just not the way it's going to be right? If he's going to die, I want to be there when he does. (SCG 14).
The caregiver in this instance had an extremely unsettling experience when her spouse first had his stroke. He had the stroke while sleeping such that the caregiver did not recognize the signs of stroke and her spouse went untreated for a long period of time. This experience was extremely traumatic for the caregiver and although her husband had recovered to a great extent, she still could not trust that he would be all right in her absence. Although the caregiver was determined that her life would return to normal, she was left with lingering trust issues about her husband’s safety. She did not confide this fear to a health provider and essentially suffered in silence.
Caregivers also struggled to trust in the providers who were caring for the stroke survivor. If the caregiver did not trust the service provider, they were less likely to use the services and were, therefore unable to benefit from the respite that these services could provide. Through one example it became clear that support groups designed to help caregivers, were more akin to a luxury not a priority, and frequently underutilized as one caregiver said, “[I’m] not able to go to the support group…Because of the fact I can't get support, trusted support for [Name] at the same time to do that.” (SCG 20).
One health provider indicated that respite is only effective if the caregiver trusts the quality of the service. For example, one provider described:
If you’ve got that personal support worker or whoever coming into their home and they’re still not 100% comfortable with that person, and they don’t take that time to build that rapport, that respite time isn’t… they’re going to spend it worrying. They [caregivers] are going to spend the whole time at the grocery store worrying, or they’re not going to be able to actually get something out of that. (HP 06)
In interpreting the above quote, it is possible that a caregiver’s lack of trust or comfort in using respite services could lead the caregiver to worry more rather than having the planned break that the service was intended to provide.
Limited information about available services and lack of suitable services—“There’s a year-long wait list”
Most caregiver participants indicated that they had insufficient information about available services and how best to access them during their caregiving journey. One caregiver explained:
You know and these people are professionals it's like you know when you start a job at a factory nobody really wants to tell you [that you] have to learn that and that's what I found, I had to learn everything. And you know people oh my God they just tell you “oh well you can get disability.” No, you can’t. (SCG 09).
Not only did the caregivers experience challenges in accessing services that they knew about such as disability, they also struggled to find out what other services were available to support them. For example, “we didn’t know, we didn’t know if there was any help out there because nobody said there was any help out there.” (SCG 15) And, “I just want to back up and say that when I was at home looking for help, I was able to sit on the computer and try and find things. And that was the whole issue, trying to find things was very, very difficult.” (SCG 02) Providers interviewed were only familiar with stroke navigators in an inpatient setting, “the stroke navigators that I’ve known about they’re usually just for hospital [not community].” (HP 04) Another provider spoke about the value of having a resource person for caregivers to contact for information on availability and accessing services, “Some of it is also people don’t know what’s out there, and they don’t know what questions to ask. I think it would be really helpful if people had someone to call.” (HP 02).
Stroke caregivers expressed frustration about the lack of services available to meet their needs and the needs of the stroke survivor. Caregivers early in their caregiving journey were often looking for guidance on how to manage specific situations with the stroke survivor. As one caregiver said:
And I just kind of sat there and blubbered away and cried. “What do you guys do?” “Oh, well, I just you know…” No specific guidelines. I needed more yeah. And I don’t know whether I would have got it from a professional person. But if it was a professional person, if I ever had to go to a professional person again, I would love to speak to somebody who is familiar with the stroke situation. (SCG 04).
The caregiver was referring to her experience in consulting with a caregiver support group and a counsellor. In the case of the caregiver support group, she felt the group was more geared to socializing and less towards providing direct caregiver support, something she needed at that point in time. In the case of the counselling, she wanted concise, focused support to cope with the acute stress brought on by caregiving for a spouse who had significant cognitive deficits. The caregiver felt that her time and energy were wasted trying to explain her situation to the counsellor. She believed that someone more familiar with stroke would have understood her position at the outset thus enabling her to focus on her needs rather than requiring lengthy pre-emptive explanations.
Health providers discussed issues with the lack of follow-up with the caregiver in the community setting. For example, one health provider discussed a specific situation as follows:
So, the couple that I told you about that had the dynamic pre-existing to the stroke and that, were probably financially challenged and challenged in other ways, that particular caregiver really could have used some ongoing support…And that wasn’t there for her. (HP 02).
This health provider suggested that the caregiver would likely be struggling when the stroke survivor returned to the community but acknowledged that the system was unable to reach out to the caregiver.
Social support networks – “They deserted us; they just don’t come around”
The availability of informal support influenced caregivers’ access and use of formal health and social services. Caregivers described that their social networks were either avoidant or that their social networks rallied to support them. Several caregivers exhibited sadness and dismay as they explained how they felt they were abandoned or avoided by friends who had previously been central pillars in their lives after their loved one’s stroke. For example, one caregiver said, “they deserted us. They just don’t come and visit. And I just don’t know if they know how to deal with this or not, I don’t know. No, a lot of people they just don’t come around.” (SCG 08) Another caregiver said, “Friends were scared. They didn’t want to deal with it.” (SCG 04) The caregivers alluded to the difficulties that some people may have had in relating to the stroke survivor especially if they had aphasia or pronounced physical or cognitive deficits. This perspective was echoed by another caregiver who said, “it seems that most friends are fair-weather friends if you want to call it that. A lot of friends don't know what to do, don't know what to say, so they just don't.” (SCG 20).
A feeling of social isolation although common was not ubiquitous among all caregivers who participated in the study. Some caregivers described how their social networks rallied to support them in their caregiving role enabling them to take time to use formal health and social services that were focused on health promotion. For example, one caregiver said:
Oh yeah, we had a very supportive system with our closer friends they were calling all week, wanted to make sure how the progress was, and you know if there’s anything they could do for us and that type of thing. So yeah, that was good. (SCG 17)
It was not easy to discern why some caregivers were well-supported by their social networks while others were less supported. But those caregivers who had strong, close networks prior to the stroke appeared to fare better than those who were more insular or constrained by their life situation. Another caregiver said, “the social support from the community as a whole, was outstanding.” (SCG 07) Providers also alluded to the willingness and availability of family members to provide respite as a valuable part of supporting the caregiver. This respite gave the caregiver an opportunity for social engagement outside of their caregiving role. For example, one provider said, “where I see things more successfully done is, is there family around that can pitch in and give the caregiver some help and sometimes just respite a few days away is important.” (HP 14).