Five primary themes faced by BMT caregivers emerged in our iterative cycles of data analyses: i) lifestyle restrictions due to the patient’s immunocompromised state; ii) unfamiliar medical tasks required on behalf of patients; iii) unmet needs of existing resources; iv) adopting strategies due to the new roles; and v) reformation of social relationships with close friends and family members.
Our interviews highlighted challenges that caregivers encountered throughout the transplant journey. Caregivers were responsible for many duties, including managing the patient’s health, performing medical tasks, arranging for transportation, scheduling and attending frequent clinic visits, and managing the patient’s activities of daily life (ADLs). The ADLs included meal preparation, tracking patient fluid intake, and taking care of patient physical health and mental wellness (27). The five primary themes described below are supported by participant quotes, which highlight caregiver challenges as well as potential strategies that could be developed (Table 2).
I. Lifestyle restrictions due to the patient’s immunocompromised state
Caregivers were required to adjust their routines after hospital discharge, which included new restrictions due to the patient’s underlying immunocompromised state. Even though patients were sent home, the first 6-12 months post-transplant were demanding due to numerous follow-up visits with BMT clinicians, other sub-specialists, multiple lab tests, imaging studies, treatments, and various infusions or transfusions. Some of the adjustments included administering numerous medications to the patient throughout the day, following defined nutrition requirements, arranging multiple transportations, and keeping the patient safe against infections (Figure 3). In particular, both caregiver and patient were restricted from crowded public places due to infection-risk, leading to limited contact with family and friends. Modified routines also impacted employment status, which led to financial stress. During interviews, caregivers reflected on all of the radical changes following hospital discharge. Participants expressed feelings of being trapped, cooped up, and were impatiently waiting for the doctor’s approval to leave the house:
We are basically trapped in our apartment. Now it’s a little better than the first two months because in the first two months she had to have someone with her 24/7, which makes sense to a certain degree but now they made the rules a little bit more relaxed for us so that I can leave for two hours, go grocery shopping or something. She still needs help. [CG5]
The impact of social isolation was even more difficult when there was only one designated primary caregiver. If primary caregivers could share duties with others, they were able to put caregiving aside and do personal work for small periods of time. However, if the caregiving responsibility fell solely on the primary caregiver, she/he was required to stay with the patient 24/7, and it was tough to maintain the balance between their own lives and the caregiving role:
Sundays are my biggest source of stress. The other thing is you just don’t realize when they want 24/7 care, it’s around the clock. When we had our daughter home visiting that was great because she could run to the store for things, things that you just don’t stop and think about you need. It’s like, “I can’t leave.” Hopefully, as we get further into this I have a little bit more freedom to leave him alone for little stretches of time. It can be stressful if there’s no one else in the household to help. [CG17]
In addition to the prolonged duration of time spent together, the home environment had to be as ‘germ-free’ as possible to mitigate infections in light of the patient’s immunocompromised state (Figures 4 and 5). Indeed, patients remained vulnerable to life-threatening infections for up to one-year post-transplant. A caregiver reflected on her experience of keeping the home clean, similar to an inpatient hepa-filtered room:
I prepared our house at an extremely clean level, because that’s what the social worker said, “Get your house as clean as you can get it.” I’ve done everything within my power to follow every direction, because I follow rules, which is the way I am. I think that you have to be very prepared and it’s very scary and it’s very overwhelming…It took probably a month for me to get into the groove, and now it’s just simple as pie. [CG4]
The imposed restrictions caused employment challenges for caregivers. Caregivers had to leave their jobs to take care of the patients 24/7, causing significant financial strain. Even after discharge from the hospital, patients and their caregivers were required to come in for frequent clinic visits. This obligation led to unstable employment with worsening financial burden. Similarly, caregivers needed to re-align work schedules and responsibilities due to frequent outpatient follow-ups:
It would be very difficult if my employer wouldn’t be that understanding that I’m able to work at night, then I can’t work right now, or try to work in parallel while I’m sitting here. If you have to go once or twice a week to the clinic because she can’t drive, then how do you do that? It’s difficult. [CG5]
Being a caregiver was an enormous responsibility – consistently providing safe physical, mental, and emotional support – at times, at the expense of their own personal health and well-being. Caregivers often put aside their own needs to focus on the patient’s health.
II. Unfamiliar medical tasks required on behalf of patients
Caregivers reported having to perform multiple medical tasks on the patient’s behalf. Most of the caregivers expressed confusion and difficulties, particularly as a non-medical professional, to learn and perform the tasks. Complex medical tasks often included medication administration, central line care, and dressing changes (Figure 6). Moreover, they also monitored patient symptoms, physical activity, nutrition, and sleep, based on recommendations provided by the clinicians. In order to be discharged from the hospital, caregivers had to demonstrate their competency in performing all of the required medical tasks, including symptom management, to the healthcare team:
The first day that we were discharged to come home, I forgot everything. Everything went out the window and I panicked. So, I had to call the 1-800 number that they gave and the doctor's number and they pretty much walked me through. They assigned us a nurse, she came out to help assist, so that was perfect. Then as she did that, then I remembered everything. From that point she came, maybe, I want to say three weeks until I got really comfortable. I was able to go from there. [CG2]
Caregivers often expressed fear and discomfort due to uncertainty of performing medical tasks and the potential for negative consequences:
Probably just changing the dressing has been a source of angst for me. That’s really difficult. I keep laughing saying, “Nurses go to school for four plus years to learn how to do all this stuff, and they’re giving us a crash course in a half hour and say, ‘Here, go do it,” You can’t leave him high and dry. That’s been very stressful from that standpoint. [CG17]
As described above, despite the caregiver’s unfamiliarity and lack of confidence in performing medical tasks, they expressed a lack of support to assist in these activities. They relied on basic skills they learned prior to discharge, or home healthcare nurses who visited to guide them through the medical tasks. Participants uniformly felt ill-prepared for the post-discharge stage, suggesting the need for more intense instruction to better prepare caregivers with medical task-related training in the home environment.
III. Unmet needs of existing peer support resources
During interviews, caregivers stated that they did not actively engage or utilize existing resources. Even though the hospital provided accessible information and support services, including an information packet, face-to-face mental wellness sessions, or peer support groups, or were not sure how to access available resources. One of the biggest reasons they were unable to engage in such services was the limited time they had coupled with the patient’s unpredictable medical course. Further, if caregivers lived far away from the healthcare system, they were unable to attend in-person sessions. Many participants also expressed time constraints in utilizing the current services:
I have not followed up on any of it [support group]. Part of it is we don't live close here. We're in a small city. It's usually an hour and 15 away so it's not something I would do outside of the visits. We come, and then once we're here by the time you do what you need to do you're ready to get out of here. And he needs to get home to get his magnesium IV going, so we don't usually have time to do too much else. [CG16]
IV. Caregiver’s own adaptation strategies in living with the new roles
Caregivers expressed undesirable emotions accompanied with caregiving tasks, such as frustration, anger, uncertainty, and depression. To reduce these negative emotions, some caregivers sought out more patient-related health information, while others identified interpersonal support or engaged in religious or spiritual activities. Surprisingly, many caregivers found the most effective way to cope with their circumstances was to take each day one-at-a-time:
I think the first thing that I noticed is that it is a very long, slow journey and progress is in very small increments. Sometimes it’s hard to see day-to-day progress, ups or down. You have to really take the long view of things to see that. On the other hand, we move through each day a step at a time, just not focus too much on the long term. [CG7]
Some caregivers developed a positive mindset through keeping a journal or mental notes, crafting, or engaging in small daily routines, like exercise:
Stress relief. I work out. We have a treadmill and a bike, so I’ve been working on that about every other day. I love to read and watch movies. Things like that help. [CG17]
Other caregivers expressed that even though such activities were not time-intensive, having small activities made them feel refreshed and enabled them to focus on positive feelings rather than any negative emotions. Accordingly, under the available resources, caregivers acquired, developed, and adopted their own strategies over time.
V. Reformation of social relationships with their family and friends
Caregivers indicated that their experience with chronic illness also had positive benefits in their life. These included strong bonds with significant others, benefit finding after they went through and overcame the adversity of the BMT process and gratitude for large and small things in their daily lives. For example, caregivers and patients were required to spend a long time together, which allowed them to develop stronger relationships. During interviews, many caregivers described their illness experience as a traumatic life-event, but they also reflected that everyone pulled together to get through it. Because it was a long-term journey involving life-threatening complications, people relied on their personal connections around them to navigate the caregiving experience. These close connections included relationships with their family and friends, and social connection with their community, such as religious organizations:
The doctors have tried everything they could try, and finally the one option available left was bone marrow transplant, which was a huge step to take and that’s life changing for him, for me, for the whole family. But everyone has pulled together and been very helpful. We have good friends support and it’s all working out fine. You need a lot of family support and friends support to be able to have this be successful. [CG4]
On the other hand, some caregivers reported that their situation led them to become isolated and lose close relationships with friends or family. For example, when parent caregivers of pediatric patients stayed in the hospital for the transplant, young siblings had to live with other family members. One of the participants described that she lost a close mother-child relationship with the other two children at home after her first hospital stay with the patient. Two of her children expressed that they were feeling like their parents abandoned them. She regretted that she did not maintain close connections with other family members while she was staying in the hospital with the patient.
From our interviews, it was apparent that the illness experiences impacted caregivers’ relationships with close others. The new relationships had both positive and negative impacts on caregivers’ emotional status. These findings collectively gave rise to considerations of caregiver support interventions that could foster meaningful relationship bonds with significant others: i) connecting caregivers with other caregivers through Chat Forums; ii) enabling video conferencing with healthcare providers; and iii) using readily accessible activities (e.g., journaling) to help express emotions.