Participant Characteristics
A total of 24 individuals (n = 16 MM patients and n = 8 caregivers) participated in the study, at which point it was determined that thematic saturation had been reached [28, 29]. Participants varied according to gender, age, living arrangements, education, employment status, and geographic location, as well as years living (or caring for someone) with MM. All caregiver participants were spouses of MM patients, while patient participants described varying types of caregivers, including spouses, children and friends. While some patient and caregiver dyads were interviewed (interviews conducted separately), most patients and caregivers were non-dyadic. Demographic information for these participants is summarized in Table 1.
Table 1
Demographic Characteristics for MM Patients and Caregivers
|
Characteristic
|
Patient (n)
|
Caregiver (n)
|
|
Gender
Female
Male
|
10
6
|
7
1
|
|
Age (Range/mean)
|
57–70 (65 years of age)
|
41–68 (62 years of age)
|
|
Living Arrangements
Married
Alone
Divorced/separated
Single
|
10
1
3
2
|
8
-
-
-
|
|
Family Structure
No children household:
Household with children:
|
14
2
|
7
1
|
|
Education
High school
College
Undergraduate degree
Graduate degree(s)
|
6
1
7
2
|
-
4
3
1
|
|
Employment status
Employed full time
Part time
Retired
Sick leave
|
2
1
10
3
|
4
-
3
1
|
|
Private health Insurance
Yes
No
|
13
3
|
5
3
|
|
Province
BC
AB
ON
NL
MB
|
9
2
3
1
1
|
2
-
5
-
1
|
|
Distance to Cancer Centre
0–20 km
21–40 km
41–60 km
61–80 km
81–100 km
> 100 km
|
8
2
1
-
1
4
|
4
3
-
-
-
1
|
|
Years living with MM
> 5 years
5–10 years
10–15 years
|
5
8
3
|
6
2
0
|
The participants in this study described in detail the physical toll of treatment and treatment-related side-effects (including pain, sleep disturbances, fatigue, neuropathy, and gastrointestinal issues), stressed the psychological and emotional impact of living with a chronic and incurable illness, and highlighted the social, relational and practical disruptions experienced in everyday life. Participants did not endure these side effects passively, but rather worked hard to adjust to life with MM and repair the many aspects of their lives that changed upon diagnosis. The participants in this study explained that the work of managing MM was diverse, time consuming, specialized, and required ongoing reprioritization. Participants described needing to rearrage work schedules and domestic tasks, aquire and interpret medical information, attend frequent medical appointments, perform complex and technical medical procedures (usually in the home), and locate necessary psychosocial and rehabilitative care and support. Participants identified four key types of work, including the work of accruing and personalizing medical knowledge, illness-related work in the hospital, illness-related work in the home, and psychosocial and relational management. In the following sections we describe these types of work, explore the social and relational contexts in which these tasks take place, and illuminate pathways through which patient and caregiver work affect treatment-related decisions.
Accruing and personalizing medical knowledge
Participants explained that given the individualized nature of MM, the increasing amount of new and novel treatments available, and the lack of a ‘best’ medical therapy, they often found themselves in a position to select, along with their health care team, one or more treatments options. While these options provided comfort for many, particularly among those with many treatment options in the pipelines, it also necessitated intense periods of research to accrue needed knowledge as well as the skills necessary to interpret, assess, and apply mainstream medical knowledge to their particular circumstances. Below, a caregiver participant describes the work involved in becoming informed about MM, its trajectory, and the various treatment options available:
So, it was just trying to understand those [medical] terms and what they were trying to tell me was happening with them. I found that difficult. But again, I would just sit and research and figure it out. So, I was always doing seminars, like, you know, on Myeloma Canada, and the International Myeloma Foundation, they always have webinars. So I was signing up for every single one of those, (laugh) sitting there, at night, and trying to follow all those.
Participants emphasized the time invested into researching treatments and keeping up with new therapeutic developments, the assessment of which required a certain kind of expertise and skill. It was felt that not all MM patients and/or their caregivers had the time, energy, or possessed the savvy to negotiate this ever growing terrain of information, nor was it felt that all people had the capacity to translate this knowledge to their specific circumstances. As a patient participant explains:
It’s not easy trying to figure out all that stuff [different treatments]. I did a lot of reading, spoke to people from my support group to see if they had any experiences, talked to my doctors. And then you need to make the call, right. I mean I’ve got the time [retired] and my wife has a nursing background, so we could manage better than most people I think. So that is one potential gap, or crack maybe. Not everyone has those resources, I guess, to make informed decisions and advocate for what they want.
The patient and caregiver participants in this study described being confronted with complex decisions at various points in the course of their illness. Nearly all of the participants described being actively involved in treatment-related decisions, highlighting the importance of self-advocacy where care and treatment plans were concerned. However, the extent to which participants were involved in treatment decision making and their capacity to make informed decisions rested largely on their capacity to perform this work and to do so well.
Illness-related work in the hospital
Diagnosis prompted immediate medical action, with participants describing an onslaught of medical tests, consults with specialists, and treatment appointments. Getting to treatment centres often required long travel and participants frequently described long waits for and during treatments. Attending these appointments was a time-consuming and demanding component of illness work that interrupted daily routines (e.g., employment, running errands, and household chores), thus competing with other important forms of work. It also interfered with activities they loved (e.g., reading a book, going for a walk or run, travel, gardening, playing with their grandchildren, and spending time with family and friends), with implications for overall well-being and quality of life. As the patient below explains:
So, it's hard, you know, when we're doing chemo every week, just the coming and going, it's about, it takes us about an hour and a half each way, to get to the hospital, because we have to take the ferry. There's a ferry line up. And, so you know, it pretty well kills the whole day… So, in a sense, you know, going for chemo, it really sort of interrupts a lot of our daily routine, you know, for a day or two there. And because, at the end of each cycle, we have to go in to see the chemo doctor. So we go in to see her the day before we do chemo, so that means two days in a row that we're off island. And you know, you don't get a lot done. So, and those days are tiring, and I end up sitting in the car a fair bit, and I don't get my walking done, which I try and do every day.
Living with an incurable illness and the looming threat of relapse was challenging for patients and caregivers alike. Indeed, participants spoke at length about the psychological and emotional impact of living with or caring for someone with MM as well as coping with the various effects of treatment. Managing physical symptoms and coping with the emotional challenges of living with MM, triggered what some referred to as a “patient identity”. This feeling of a lost self and the associated discomfort of living in a foreign or unrecognizable body were incredibly challenging for many of the participants. Indeed, many described active effort to return to a recognizable self, emphasizing their efforts in coping with these losses. As a patient participant explains:
I have to work at not getting down in the dumps. Cause I don't like that. Cause I'm normally a really happy person. So, I have to, I have to kind of work at, at not, um, obsessing about the multiple myeloma and reminding myself that I am so much more than my illness.
Frequent hospital visits tended to trigger this patient identity, a reminder of their illness and its terminality. This, even if temporarily, posed a symbolic threat to their efforts to live as normal a life as possible, with consequences for emotional well-being, amplifying the already challenging psychological toll of living with MM. Patients and caregivers described this as being emotionally difficult and emphasized efforts to cope with the anxiety and depression this posed in the days following hospital visits. As a caregiver participant explains:
Every time we went into the cancer clinic for when he was getting those shots once a week, it made him stressed out, because when you're at the cancer clinic, you're seeing all kinds of people with different kinds of cancer. But in his mind, they're just at different stages of death. So he was seeing all these people pretty darn sick.
The physical and emotional work associated with frequent hospital visits took a toll on both patients and their caregivers. While oral administration often meant additional work in the home (e.g. managing a pharmaceutical regimen), it was believed to be far less intensive and disruptive than that resulting from hospital visits. Participants described a preference for oral therapy because it permitted greater convenience and flexibility, reducing the need to rearrange work schedules and spend exhaustive amounts of time in hospital or travelling, as well as long waits for tests and treatments. Limiting exposure to the hospital and the patients therein also helped to limit reminders of their “patient identity” and the psychological toll associated with this position. In short, participants explained that oral administration minimized the overall burden of management work, and this route was often chosen when available. However, participants explained that they were happy to accept in-hospital treatments if they believed it to be more effective and/or have fewer side-effects than those delivered orally.
Illness-related work in the home
While work occurred within and between hospitals/clinics, it was most prevalent in the home. With the introduction of complex and demanding medical tasks in the home, such as providing injections, managing pain and other side-effects, constantly sterilizing the home environment, and adhering to pharmaceutical regimens, care work became all-consuming for patients and their caregivers. This was particularly true during intense treatment times, including Stem Cell Transplant (SCT), with most participants describing either mandatory or strongly recommended outpatient recovery. Caregivers were often expected to shoulder the brunt of illness-related work in the home, particularly during treatment times when patients themselves were limited by physical impairments. When asked what the outpatient SCT was like from a caregiver’s perspective, the participant below explained:
Horrible. That was scary too…I had to take his temperature every hour, and write it down in their [hospitals] little book. Every time he drank something, I had to write it down, so it was keeping track of everything that he had and then, he had extra medication during that time. So, and it would change [everyday]. So it was a lot more of a program…I did my best, but I'm not medically trained.
In discussing the round-the-clock provision of care paired with the complex care needs of their loved one, caregiver participants emphasized the medical skill (e.g. monitoring temperature and other vitals) required to perform this work. Few felt adequately prepared for the burden of work that fell on their shoulders. As a caregiver explains:
A lot of times, I kept saying out loud, 'I don't know what I'm doing. I'm not a nurse. And
so, the responsibility that would be put on you is sort of like, 'I shouldn't be doing this. I'm not trained to do this.' So, it was a lot of, just questioning yourself, and your ability to do things.
The provision of this care was not only symbolically valuable – providing comfort, support and practical assistance for patients – but was also necessary, with such care often being required for the provision of certain treatments and medical procedures to take place. As a patient participant explains:
If you don't have a caregiver, someone who can be with you twenty four hours a day, someone who is willing to take you to and from the hospital every day, for a month or five weeks, or six weeks, it'll, you know, then you don't get the stem cell [transplant].
A number of participants explained that the extent of medical-management work taken up by patients and their caregivers was somewhat invisible from a health systems perspective, and thus, insufficient care and supports required to cope with its impacts were provided. This was particularly true for caregivers, with participants emphasizing the lack of professional care and support available to this group.
Recognizing the largely unsupported burden of work taken up by caregivers in the home, some patient participants explained that despite a guiding preference for survival, that, in future, they would avoid treatments that required long-term and intensive caregiver support, such as a SCT, despite its promise for survival. In discussion of their experiences with an outpatient SCT, a caregiver participant explains that her husband, if confronted with the option of a second SCT, would either opt for an inpatient procedure or forego the transplant altogether:
For him, I know [he would choose inpatient] because it would take more stress off of me. Cause he was always worried about me. So I know for him, that would be [his choice], or he’d decide not do it.
This participant illuminates the ways in which the relegation of care to the home, and to the patient and caregiver therein, can render symptom management far more intensive and challenging, ultimately informing treatment decisions in ways that may conflict with patient preferences. .
Psychosocial and relational management
In describing the exhaustive and largely independent volume of work associated with medical-management, many patient and caregiver participants stressed the negative impact this work had on their psychosocial and relational well-being. For instance, as described above, caregivers assumed the bulk of illness-related work in the home, particularly during intense treatment times. The provision of this care in addition to their routine domestic and employment responsibilities often came at the expense of caregivers own health needs, with many emphasizing the ways in which the unconditionality of their care enhanced feelings of burnout and psychological distress. As a caregiver participant explains below:
I can't leave my job. I need a salary. I need the benefits for all these medications and whatnot. So, you just kind of 'do' and you just kind of go, and I probably, in hindsight, I probably should have sought a therapist for myself. And I didn't. I just, I relied on girlfriends to just, who were very supportive of me. You know, I probably should have done more for myself, but I didn't feel like I had the time, between work, kids and him [MM patient].
Patient participants spoke often about impact of caregiver workload on their loved one’s quality of life. They expressed a sense of guilt for burdening their loved ones with worry, interrupting their social lives, and ‘derailing’ plans they collectively made for the future (e.g. retirement plans, travel). As a patient participant explains below:
The things that we do together that we enjoy tend to be cut back a lot more, because we're spending more time doing the chores of life, the medical appointments, the resting, because I don't feel up to it.
Some treatments also made patients “edgier” and more “irritable”, causing tensions in the relationship. Despite working hard to manage the psychological and relational changes they endured as a result of MM treatment side-effects, participants often lacked the essential tools required to navigate these unfamiliar waters, rendering side-effects (including psychological impacts and disruptions to marital relationships) less manageable and more debilitating. As the caregiver below explains:
The dex really affected him [psychologically] and it affected our relationship, he was just so belligerent with me and he was never like that before, never. We wanted to get marriage counseling with someone who understands multiple myeloma and the drugs and the impact that those can have on someone, because I know that dex can make people really edgy, mean even. But we couldn’t find anything like that and the regular therapist we went to, she couldn’t handle us (laughs). His quality, both of our lives were really, the quality really went down and as hard as we tried to work through it, nothing was helping. So we decided to take dex out of the mix and were happy that our health care team listened…I had a few reservations that it would just take him longer to get better, if dex was taken out of the mix, because it is an effective drug...but he hated it. So it was a mutual decision to just come off of it.
Similar to the account above, many participants, particularly patients, described making treatment choices that would reduce their exposure to symptoms, minimize the impact of these symptoms on their or their loved ones, and/or minimize the burden of work involved in their management. This sometimes meant that the most effective treatment path was not always sought. While participants told accounts of health care providers who respected their wishes and altered therapy accordingly, these discussions rarely gave way to broader conversations with the health care team concerning why these decisions were being made. In turn, the work involved in managing side-effects remained invisible and opportunities to provide necessary supports were limited.