Several methods were implemented to support the project trustworthiness (20). To ensure credibility and confirmability, before the analysis began each investigator engaged in a reflexivity activity to examine assumptions, beliefs, and judgments about caregivers and home programs. We also triangulated by analyst through individual coding followed by group consensus aimed to minimize the bias of any single analyst but also allow for a diversity of perspectives. Additionally, for confirmability, we completed member checking. A summary of the results was shared with four of the eight participants and they were asked for feedback. If something was reported to be missing, the analysis was checked to see if it was included in the larger picture. No revisions were made based on member checking. We have also provided information on the sample and the selection criteria used to allow others to consider the transferability of findings. Last, utilizing the MAXQDA© software allowed for an audit trail to be kept through the different file iterations as well as the merging of codes during abstraction supporting the study's dependability.

Multiple participants indicated that their roles and responsibilities as a caregiver increased upon discharge home to maintain care, home maintenance, and finances. Carol said, “There's just so much more I do for him now that he used to do himself…around the house or whatever”. Kim similarly reported, “He wouldn't be able to be home if I wasn't here.” Deb noted finance needs, “It was thrust upon me to figure out all the finances.” Thomas spoke to the sudden nature of this responsibility, “This was like a curveball that came out of nowhere.” Collectively these comments illustrate how caregivers experienced increased responsibilities that, at times, felt overwhelming after a family member's brain injury. Caregiver perceptions were also influenced by the caregiver and care receiver's previous roles prior to the injury, the caregiver's availability, and previous experience with health care. Seven of the eight caregivers spoke to the significant role change because their care receiver was independent with all daily activities and/or working before the recently acquired brain injury. Only Jeff stated that his role did not change too much because his care receiver had medical concerns prior to the recent ABI.

Caregivers described multiple ways that they were supported by the current or previous medical team. Kim stated, “The in-home [therapists] were all extremely helpful…sometimes saying okay so you’re having trouble getting out of bed lets walk back to bed or find a better way to do this.” Deb stated, “I'm very grateful that we have… this physical therapist as well as speech coming here to you know give these tips and pointers and make sure he's doing what he's supposed to be doing”. Caregivers also indicated systemic barriers compound the burden of new roles and responsibilities they were navigating. Thomas stated, “I tried to get more [therapy] in home, but the system doesn't want to pay for the services.” Jeff stated, “I think if they would have looked at her whole situation and there were decisions that were made that could have been made differently that would have made her safer in the environment that she was going into.” Deb also revealed difficulties with system navigation, “I never knew about private insurance. And then on top of the bills, it's like the short-term disability, the long-term disability, and the stuff insurances need.”

In addition to more responsibilities, prior experiences, systematic supports, and barriers caregivers reported on their perception of their care receiver's impairments and overall recovery. Five out of the eight participants noted impairments in more than one area that remained post-discharge from the hospital (See Table 2). During interview one, three participants expressed mixed opinions of recovery often with recognition that there was room for improvement. Deb stated, “He's come such a long way. but he has a ways to go.” Two participants expressed negative perceptions of recovery. For example, Carol stated, “To be honest, I'm not seeing any big improvement”. However, Kim was optimistic about recovery during the first interview stating, “He's been good and it's getting better each day.” During the second interview, the outlook had improved for most of the participants (n = 5) reporting improvement. Sue stated, “I was pleasantly surprised at how his cognition has now come back, not 100% but 85%.” However, some participants continued to have a mixed or negative outlook during the second interview Carol stated, “There hasn't been much improvement”. Similarly, Jeff noted in the second interview, “I'm going to have to take her to the doctors because she's having some like memory lapses … I think she really needs to be reevaluated in some capacity.”

When describing their experience with home programs, caregivers were asked to begin by describing their experience with training on the home programs. Caregivers could often describe elements of training that occurred at the hospital that were non-specific to home programs. For example, Sue noted, “Yeah they also showed me you know like how he should get up and down from the bed, off the bed, into the car, how he should do that.” When redirected to discuss the home programs, many caregivers reported limited training. Cynthia reported that the amount of training was not adequate to ensure understanding. Amy noted, “I didn't really get much training at [hospital] it was kind of, I don't know, seemed a bit hurried when he was getting out of there.” It was also reported that what occurred was not perceived as training. Deb states “Um, I didn't really, she didn't really train me. I would not call it training.” Despite the limited nature of the training provided, participants reported satisfaction with the training. Thomas said, “Yeah, it was one day, but that was quite sufficient.” Some participants noted elements like handouts were supportive. See Table 3 for more reported training from each participant.

When asked about the home program's content, some participants noted that there was not much to them or their difficulty level was low and repetitive. For example, Carol reported, “He really wasn't given much of anything when he left there.” Cynthia noted her care receiver had been given “.. leg lifts and stuff like that, like moves, you know, side to side.. walking.” Caregivers in this sample did not report any difficulties with finding space, equipment, or working the home program into the daily routine. All of the caregivers indicated that they felt the home program had a feasible number of exercises and enough time to complete them. Some did qualify saying that they had enough time because they were retired. Most caregivers reported that equipment was provided to them by the healthcare system, however, one did mention that they had to personally pay for home equipment.

The most frequently reported method of support for home programs was through verbal encouragement. Verbal encouragement included caregivers providing reminders to complete the home programs and encouragement to complete the program. Cynthia stated “Oh, I always encouraged him. Tell him that you know it is for his own benefit.” Others reported providing more direct setup or supervision. Amy reported, “..I liked to make sure he sits for two hours a day and works in that book.” A few participants reported needing to be there to physically support the home program recommendations. Carol reported, “But now he needs me more and more because when he gets up to walk, I sort of have to go with him.” Three participants acknowledged a change in their role in home program support between the two interview time points. See Table 4 for examples.

In addition to the way they participated in the home program, caregivers also offered insight into the perceived facilitators and barriers around home program engagement by their care receivers. Caregivers perceived the independent motivation of the care receiver as a primary facilitator of home program success. Participants Amy, Deb, Kim, and Sue all indicated that they thought their care receiver was motivated and that helped with the follow-up of their home programs (Table 4). Perceived home program barriers reported by caregivers were diverse. For example, some participants noted emotional reactions of frustration or boredom. Carol stated, “He just gives up because he's so frustrated.” Other caregivers mentioned physiological barriers limiting home program engagement. Jeff said, “She really doesn't have as much stamina as she used to.”

Caregivers were also asked about their outlook on the home programs moving forward at the end of each interview. At the end of the first interview, participants reported feeling capable of completing the home program and they would continue using it. During the second interview, more participants reported a shift in what was being done around home programs. For example, Carol reported a focus on activities from a specific discipline, “It's basically speech..like grade schoolbooks to help his phonics.. it's good practice for him.” Others reported a shift to engaging in activities in their daily lives more than the prescribed home program. Kim noted, “it's become a more natural part of life rather than let's stop and exercise.” See Table 4 for additional examples from the first and second interviews.

Last, caregivers reported on the value of home programs and offered specific advice to other caregivers about home programs. All participants found value in the use of the home programs. Kim reported “[Home programs] were really important even mentally for him to just have something to do.” When asked to provide advice to others who might be a caregiver for someone after a stroke and the use of home programs, participants focused on working to engage the clients in the programs immediately upon return home and providing encouragement. Sue said, “Do it the minute you get home, don't, don't let, don't let them get complacent by not doing them.” Other pieces of advice focused on the use of novel treatments like a hyperbaric chamber (Deb), the importance of a power of attorney (Deb), and supervision and safety (Thomas).