A total of 56 FCs expressed interest in the study but 6 declined the offer to participate after hearing more about what it entailed, and 22 were ineligible. Of the 23 eligible, consenting FCs, two became ineligible when their relative’s status changed, and 10 withdrew (most implicitly, by not responding to requests to schedule an interview). The final sample size was 16. All participants provided informed written consent.
Most FCs were women (n = 14; 87.5%) with an average age of 49 years (range 26–67). All self-identified as Caucasian. The majority were married or common law (n = 11; 68%). Most had a college diploma, apprenticeship or trades certificate (n = 10; 62.5%), were employed full-time (n = 10; 62.5%) and had an annual household income less than $70,000 before taxes (n = 9; 56.3%).
Most FCs were the primary caregiver of a parent (n = 9; 56.3%) and were living in the same home as their relative (n = 10; 62.5%) in a community with a median rurality index of 50 (range 41–89). Most FCs were the primary caregiver of a relative who had been hospitalized for a medical illness (n = 12; 63%) and was at high risk for hospital readmission, manifested by a mean LACE index of 10.9 (± 2.7).
Qualitative analysis revealed four themes: 1) FCs generally felt unprepared to support their relative’s physical activity, 2) FCs believed that rest was more important than physical activity to their relative’s recovery, 3) insufficient physical activity preparation led to FC-relative conflicts, 4) to defuse these conflicts, some FCs wanted healthcare providers to be responsible for promoting physical activity.
Theme 1: Family Caregivers Generally Felt Unprepared To Support Their Relative’s Physical Activity
FCs described receiving very limited preparation in hospital or at home on how to support physical activity; only FC5 reported having received sufficient preparation in the form of “very specific instructions about how much he [FC5’s father] should be doing, his leg flexes, and arm lifts.” Most expressed having received no information at all. For example, FC7 noted that she “never was spoken to at all about his [FC7’s father’s] condition by anybody”, and FC8 similarly recalled that “I've never talked to anybody. I've never had anybody talk to us [FC and his mother], it's, ‘Oh, you're good to go’ [to be discharged].”
Specifically, FCs emphasized that the preparation they and their relative received was inadequate in three ways. First, those FCs who did receive information from healthcare providers characterized it as vague and insufficiently detailed to guide FCs on how to support their relative’s physical activity. For example, some FCs explained that healthcare providers’ instructions included “get as much activity as you can”, “walk but don’t overdo it”, and “just take it easy.”
Second, FCs received insufficient guidance on what to expect in terms of their relative’s capacity for physical activity after discharge. In other words, FCs were unsure what their relative’s starting point for returning to their pre-hospitalization baseline would be. FF10, for instance, criticized that she did not even “know if he [her father] was going to be able to get in and out of bed by himself.”
Third, FCs received insufficient guidance on the progression of their relative’s recovery and how physical activity figured into it. They highlighted numerous ways in which they were uncertain about the trajectory it would take, and how they could support it. For example, FCs such as FC15 recounted not knowing what level of physical activity their relative should engage in at a given point in the recovery process:
I think what we [FC15 and his wife] were missing was a clear progression, path, what to expect, how many days in terms of mobility and getting around and when we need to start progressing it. Not having any clear, again plan of, you know, how much can she [FC15’s wife] move on the first day and how much can she move on the second and third day [after coming home from hospital]? [This] made it very difficult, and has still made it difficult, trying to figure out how much is too much and is this amount of pain just a normal part of recovery or has it now hit the point where we’re pushing too hard [physically] and going the opposite way from recovery by causing too much strain.
Consequently, FCs were unsure how to best support their relative’s physical activity after discharge; that is, they lacked information on the concrete steps and physical activities they needed to encourage their relative to engage in to facilitate recovery. FC7, for instance, recalled telling her father that “I don’t even really know what's best for you to get up the stairs at the front of the house. Should you be leading with your dominant foot? Or should you be leading with your injured foot?” FC7, similarly, recalled needing to know more about the “simple things, just day to day, you know, ‘how long he should be up walking for?” Typically, FCs were only confronted with the full ramifications of their lack of preparation when their relative returned home from hospital and realized that they did not know how to support their relatives’ physical activity. FCs acknowledged the importance of their relative’s return to physical activity, but conceded that, as FCs, they were unprepared for how to help their relative achieve that goal.
Theme 2: Most family caregivers believed that rest was more important than physical activity to their relative’s recovery
In the absence of direction explicitly outlining how to support their relative’s physical activity, FCs relied on their “common sense”, which was informed by the belief that rest promotes healing, and too much physical activity threatens recovery. In practice, that meant emphasizing rest over physical activity. FC11, for instance, explained that when she “didn't get anything [physical activity plan or instructions] from them [healthcare providers]”, she automatically assumed “he’s [FC11’s father] supposed to get lots of rest…just came from common sense, make sure he's getting enough rest.” She went on to describe how she saw her father’s eagerness to resume physical activity as something to be limited:
You need to ensure that your body has that time to heal. I know a lot of people go home after surgery and want to lay in bed. It was kind of the opposite for my dad. [He] wanted to get up and get moving and get back to his daily activities. And that's the goal, but, I think you can’t go at 100 percent all the time while you’re healing.
FCs’ entrenched views on the importance of rest were evidenced by their criticism of healthcare providers who, FCs believed, pushed their relative too hard after a period of prolonged inactivity during hospitalization. For some FCs, the belief that rest had to be promoted was so strong that they disputed healthcare providers’ instructions that heavily emphasized physical activity. FC7 noted with frustration that “they told him, ‘You can't walk enough.’ Well, I would argue that [it was too much] when he was out walking for five hours, up and down hills and trying to help with projects around the house. And then the next day, he felt like crap all day.”
FC2 also recounted resisting healthcare providers’ guidance to let her mother do as much for herself as possible. As FC2 put it: “She [FC2’s mother] can do it, but the thing is, if she’s coming home and she’s supposed to recover, she shouldn’t be doing those things. She will say that she can do all those things, you know, clean, cook, laundry, but the thing is she shouldn’t be [doing them]. And, I see that [she can do it herself], but then I do it for her, you know, just, to help out so that she can recover, you know, get some rest.”
Theme 3: Insufficient Physical Activity Preparation Led To Family Caregiver-relative Conflicts
For those FCs who attempted to support physical activity, unclear guidelines created space for their relative to challenge their attempts. These FCs explained how, when they encouraged their relative to be more physically active, they experienced pushback. Notably, gender appeared to figure prominently in these dynamics; all the FCs who flagged their relative’s resistance to physical activity as problematic were women (i.e., wives/partners or daughters) caring for a male relative.
Analysis identified that FCs perceived pushback from their relatives as taking two main forms. First, some FCs reported that their relative actively questioned their credibility when it came to promoting physical activity and strategies to support it. As FC13 explained, her father “thinks we [family] don’t know what we’re talking about.” Other FCs recounted how their interpretation of healthcare providers’ instructions was viewed as suspect by their relative, who was skeptical that their FC had fully understood the instructions.
Second, other FCs described their relative’s outright refusal to engage in physical activity. FC13 noted that it’s “always a challenge - to get him [her father] to move.” FC7 similarly explained:
When we try to get him out walking, he just is very stubborn and won’t go. Or he refuses to do it. We’ve tried since he’s been home to get him out walking, and he just refuses to go.
FC4 concurred that the greatest “difficulty I had was to get him [FC4’s father] to do it [walk]”, because he made clear that “I don't have to listen to you.” FC4 suggested that this friction was the result of the established power dynamics of their relationship being upset by her father’s illness. As FC4 explained, “it’s kind of like a child with their parent, you know? Just the whole resistance part.” She maintained that, because her father felt disempowered, he was using interactions surrounding physical activity as an opportunity to assert himself. She elaborated that “it’s a control thing, because he doesn't have a lot of control over some things in his life, but he can control whether or not I help him, control him. If he'll think I'm trying to control him he doesn't want that, he wants his own control, autonomy.” Other FCs were less empathetic, and when faced with resistance from their relative they responded by relentlessly policing their relative’s physical activity. These FCs insisted that promoting physical activity required taking on an authoritative, taskmaster role to ensure her father engaged in sufficient activity.
Theme 4: To defuse these conflicts, some FCs wanted healthcare providers to be responsible for promoting physical activity
With such conflict in mind, some FCs indicated that, ideally, it would be healthcare providers’ responsibility to support their relative’s physical activity because a healthcare provider’s credibility and authority were more likely to be accepted. FC6 noted that:
I want her [FC6’s mother] to do more but there's nothing more I can do for her here by myself. She sees physiotherapy with me as just a game. When she does it with the physiotherapist, she understands it's serious and she needs to do it.
Accordingly, some FCs believed a healthcare provider would help their relative be more physically active. When asked about strategies to help their relative participate in physical activity, FC4 explained that “outside motivation…is something that works better with him [FC4’s husband]. For his PSW [personal support worker], he will do things for her [that he won’t do for me].” As FC10 conveyed “it’s always different when somebody else says it, right? Like the ones closest to you are the ones you least listen to.” FC13 similarly noted that:
I think having somebody else involved in telling him to get up and move a little bit more, I think that would be very helpful…they could kind of reiterate that it’ll only get better if you keep moving…getting it from somebody else other than his kids. I think he’d listen to somebody else.