Applied Science, Faculty of
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Current Oncology 29 (11): 8180-8196 (2022)
BC Cancer Agency
Howard, A. Fuchsia
Lambert, Leah Kimberley
Beck, Scott M.
Torrejón, María-José
Kelly, Mary T.
McKenzie, Michael
Thorne, Sally E. (Sally Elizabeth), 1951-
Porcino, Antony Joseph
De Vera, Mary
Wolff, Angela C.
Hedges, Penelope
Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.
Citation: Howard, A.F.; Lynch, K.;Thorne, S.; Porcino, A.; Lambert, L.;De Vera, M.A.; Wolff, A.C.;Hedges, P.; Beck, S.M.;Torrejón, M.-J.; et al. Occupationaland Financial Setbacks in Caregiversof People with Colorectal Cancer:Considerations for Caregiver-Reported Outcomes. Curr. Oncol.2022, 29, 8180–8196. https://doi.org/10.3390/curroncol29110646Received: 14 October 2022Accepted: 28 October 2022Published: 29 October 2022Publisher’s Note: MDPI stays neutralwith regard to jurisdictional claims inpublished maps and institutional affil-iations.Copyright: © 2022 by the authors.Licensee MDPI, Basel, Switzerland.This article is an open access articledistributed under the terms andconditions of the Creative CommonsAttribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).ArticleOccupational and Financial Setbacks in Caregivers of People withColorectal Cancer: Considerations for Caregiver-Reported OutcomesA. Fuchsia Howard 1,* , Kelsey Lynch 1, Sally Thorne 1 , Antony Porcino 2, Leah Lambert 1,2, Mary A. De Vera 3,Angela C. Wolff 4, Penelope Hedges 2, Scott M. Beck 1,2 , María-José Torrejón 2, Mary T. Kelly 1and Michael McKenzie 2,51 School of Nursing, The University of British Columbia, Vancouver, BC V6T 2B5, Canada2 BC Cancer, Vancouver, BC V5Z 4C2 Canada3 Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, BC V6T 1Z3, Canada4 School of Nursing, Trinity Western University, Langley, BC V2Y 1Y1, Canada5 Faculty of Medicine, The University of British Columbia, Vancouver, BC V6T 1Z3, Canada* Correspondence: fuchsia.howard@ubc.caAbstract: Family caregivers of patients with cancer provide substantial physical, emotional, andfunctional care throughout the cancer trajectory. While caregiving can create employment andfinancial challenges, there is insufficient evidence to inform the development of caregiver-reportedoutcomes (CROs) that assess these experiences. The study purpose was to describe the occupationaland financial consequences that were important to family caregivers of a patient with colorectalcancer (CRC) in the context of public health care, which represent potential considerations for CROs.In this qualitative Interpretive Description study, we analyzed interview data from 78 participants(25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRCinvolved managing occupational implications, including (1) revamping employment arrangements,and (2) juggling work, family, and household demands. Caregiver financial struggles included(1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelongexpenses. Study findings offer novel insight into the cancer-related occupational and financialchallenges facing caregivers, despite government-funded universal health care. Further research iswarranted to develop CRO measures that assess the multifaceted nature of these challenges.Keywords: caregiver; family; supportive care needs; employment; occupation; financial costs;economic costs; qualitative research; caregiver reported outcomes; patient reported outcomes;colorectal cancer; oncology; psychosocial1. IntroductionThere is growing acknowledgment that, in addition to physical, emotional, and prac-tical consequences, cancer treatment and care impacts the finances of patients and theirfamily caregivers [1–3]. Financial hardship can arise from direct out-of-pocket costs fortreatment, which have escalated owing to high prices of newer classes of therapies andsupportive medications, and indirect costs such as transportation and employment oroccupation changes [4]. Financial consequences for patients can translate into emotionaldistress (anxiety and depression) [5], higher symptom burden [6], diminished quality oflife [6–8], and reduced adherence to treatments and limited access to care [2]. For example,multiple American studies have reported that about half of cancer survivors experiencesome form of financial distress, with a significant proportion being in debt because of theirtreatment [2]. Some studies also found significant numbers did not adhere to prescribedmedications because of costs [2]. There has been recognition that the financial burden is asimportant as physical toxicities, posing an often overlooked and serious consequence, withCurr. Oncol. 2022, 29, 8180–8196. https://doi.org/10.3390/curroncol29110646 https://www.mdpi.com/journal/curroncolCurr. Oncol. 2022, 29 8181the term financial toxicity emerging to describe the financial burden and distress that canarise for patients and their family members [9,10].Financial hardship is perhaps most acutely felt by patients and their families injurisdictions with primarily privately funded health care, such as the United States, dueto gaps in insurance coverage and higher costs of care. Yet, because financial hardship forpatients in countries with government-funded universal health care has also been observed,it is recognized as a global issue affecting countries across health system structures andincome levels [11–15]. While one might assume that publicly funded health care, suchas in Canada, ensures equal access to cancer treatment for all in need with minimal costsincurred by patients, substantial cancer-related economic burdens can arise because not allaspects of direct care are fully funded, such as ambulatory medications, medical supplies,and limits on homecare or allied health care [11]. Moreover, there are often many indirectcosts associated with such issues as occupational and employment disruptions for patientsand their family caregivers. Policies and programs exist in most Canadian provinces tomitigate medical costs not covered by public funding, such as income replacement, taxbreaks, and employer-provided health insurance. However, these policies and programscan be difficult to access because of complicated application processes and they are largelydesigned for patients and not caregivers. A 2021 Canadian study reported that 33%of 901 patients on active cancer treatment indicated a high burden of out-of-pockets-costs within the past 28 days and reported spending an average of 34% of their monthlyincome on cancer-related costs [11]. Further, 29% of patients took time off work, averaging18 days off, while 26% indicated their family caregiver took time off work, averaging11.5 days off over that same period. Qualitative analysis of patient comments on surveysdescribe financial burden stemming from costs incurred (associated with medications,food, transportation, and house-related costs particularly for those with functional decline)coupled with reduced income and financial reserves, contributing to financial difficultyand emotional distress [12].Family caregivers of patients with cancer provide a substantial amount of physical,emotional, and functional care and support throughout the cancer trajectory. The economiccosts of doing so are considerable because of the intensity of the care they provide andthe cost and complexity of cancer treatment [16]. A 2016 American study reported thattwo-thirds of cancer caregivers averaged 33 h a week providing care, with half of thoseproviding 41 or more hours of care per week [17]. In a review of 19 studies, care time,valued by measuring the time spent providing indirect care (i.e., time spent on activitiesof daily living, household activities or with the care recipient at the hospital or medicalappointments), was the largest source of cancer caregiver costs [18]. Employed caregiversface the challenge of providing this care while continuing to meet work demands andpursue professional goals. Caregiver income and employment is often essential to coverfamily expenses, particularly in situations where the patient cannot work, or where thecoverage of employment-based extended health insurance proves to be insufficient. Likepatients, it is highly likely that caregivers experience emotional distress and reducedquality of life associated with financial burden, though studies have been rather limited todate [19,20].Caregiver needs are often overlooked despite the considerable role that caregiversplay as members of the cancer care team, the extent of caregiver burden, and the increasedrisk of caregiver morbidity and mortality [21,22]. It is also increasingly apparent that, tosupport cancer patients effectively, the needs of caregivers must also be understood andsubsequently met [23]. Recognizing that the assessment of caregiver needs and outcomesis rarely a standard of care in oncology settings [12], our team sought to identify caregiver-reported outcomes (CROs) that reflect what is important to caregivers and to identify howthe importance of these outcomes changes across the cancer trajectory. Like patient-reportedoutcomes, we conceptualized CROs as a caregiver’s assessment of their own health statusand quality of life as a result of caring for a patient with cancer. We chose qualitativemethodology to identify the outcomes that would be important from the perspective ofCurr. Oncol. 2022, 29 8182caregivers and to ground the conceptualization and operationalization of CRO constructsand domains in caregivers’ experiences.We focused on caregivers of patients with colorectal cancer (CRC) because CRC is thethird most commonly diagnosed cancer in Canada and the 5-year net survival for CRC isonly 65% [24]. Patients often suffer a high physical symptom burden [25], multimodalitytherapy is required, prognosis is uncertain and poor particularly for metastatic disease [26],and family caregiver involvement is extensive. Further, the presence of a stoma for manypatients has been found to significantly alter not only patient quality of life, sexuality andbody image, and cause psychological morbidity but also to contribute dramatically to care-giver burden, including financial challenges [27,28]. While caregiver burden may dissipateover time and following completion of primary CRC treatment, considerable disruptionhas also been shown to persist for years owing to the ongoing nature of caregiving tasksand changes to a caregiver’s life [28].In this large qualtiative research, conducted in Canada where there is government-funded universal health care, it became apparent that caregivers experienced occupationaland financial consequences stemming from caring for a patient with CRC. Thus, thepurpose of the analysis we describe here is to describe the occupational and financialconsequences that stood out as important to caregivers throughout the cancer trajectory,and which represent potential considerations for the development and/or implementationof conceptually robust CRO measures.2. Materials and MethodsThis study was guided by Interpretive Description [29], an applied qualitative ap-proach used to construct experiential evidence that is relevant to practice disciplines andclinical application. This was conducted as patient-oriented research [30] wherein patient-and caregiver-partners (individuals with lived experience), clinicians, and multidisciplinarystakeholders were equal research team members through all phases. That is, all researchteam members provided input into study protocol development, recruitment, the carryingout of data collection and analysis, and the dissemination of results. These patient- andcaregiver-partners, clinicians, and multidisciplinary stakeholders were not study partici-pants and were not interviewed during data collection. The protocol was approved by theharmonized BC Cancer and University of British Columbia Research Ethics Board. Furtherdetails of study methods have been published elsewhere [31,32].2.1. Setting and Sample RecruitmentThis research was conducted in British Columbia, Canada, where the government-funded health care system serves a population exceeding 5 million. Included caregiverparticipants were ≥19 years of age, spoke English and were involved in providing careto a relative (a spouse, unmarried partner, parent, sibling, adult child), a neighbour, ora friend with CRC. We did not stipulate a minimum level of caregiver involvement northat the caregiver needed to be the primary family caregiver because we aimed to capturediversity of caregiver experiences and be inclusive of situations where caregiving wasshared. Included patient participants were diagnosed with CRC, ≥19 years of age andspoke English. Participant recruitment involved distributing study information throughthe online newsletters and social media pages of caregiver and oncology organizations, andan email listserv of individuals who had consented to be contacted for research purposes.To secure maximal variation in the convenience sample and because of robust interestfrom self-selecting participants, we included more caregiver and patient participants thaninitially planned.We also recruited healthcare providers as study participants considering their insightsas complementary to those of caregivers and patients and a source of triangulation. In-cluded healthcare providers were those in acute or community settings who providedcare to CRC patients. Healthcare providers were identified through the research team’sprofessional networks and emailed an invitation to participate.Curr. Oncol. 2022, 29 8183Though we used convenience sampling, we were guided by Interpretive Description [29]to continue to recruit participants until we had representation across caregiver and patientdemographic (i.e., age, gender, relationship of caregiver to patient, living arrangements)and medical characteristics (i.e., patient cancer stage, patient with a colostomy or ileostomy).For healthcare providers we aimed for variation in type of provider. Furthermore, in linewith Interpretive Description, we continued recruitment until we had robust variation inthe information gleaned from participant interviews, a decision informed by the collectivewisdom of the research team. Interpretive Description positions this approach to varia-tion in sampling as an alternative to theoretical saturation sampling, which is continuedsampling and data collection until no new insights emerge from the data.2.2. Data CollectionIn-depth, semi-structured participant interviews were conducted virtually via ZoomVideo Communications, Inc. from April 2020 to November 2020 owing to restrictions onin-person research related to the COVID-19 pandemic. Caregiver and patient participantswere given the option of doing interviews separately or together as a dyad (caregiverand patient interviewed together). Caregiver, patient, and healthcare provider interviewguides included questions about priorities for CRO assessments, the communication ofthese assessments to healthcare providers and the patient, and recommendations for theimplementation of CRO measures into routine practice. Examples of the questions posedto caregivers included: Tell me about the main challenges you struggled with as a caregiverwhen your loved one was first diagnosed. How were those challenges different from thechallenges you faced during treatment? What about now (after treatment/near end-of-life)? How did the importance of those challenges change? What has helped you copewith the challenges you have faced? What factors (e.g., challenges and positive aspectsof caregiving) would you like healthcare providers to ask you about? When would thisbe helpful/unhelpful to you? What would you like healthcare providers to do with thisinformation? What type and when would support be helpful/unhelpful to you [31]?We asked patients similar questions in terms of what they perceived to be caregivers’experiences and needs. Examples of questions posed to healthcare providers included:When and how do you assess caregiver challenges and needs in your practice? Whatfactors do you think are most important to assess at the time of diagnosis, during treatment,and following treatment completion? How should these assessments be done? Whatwould be helpful to support you in assessing caregivers’ challenges and needs? Interviewslasted 30–90 min, were audio recorded (not video-recorded), transcribed verbatim, de-identified, and checked for accuracy. Consistent with Interpretive Description, we focusedon gathering interview data that was high in information power [33]. Information powerindicates that the more information the sample holds relevant to the study, the fewerparticipants needed [33], and was enhanced in this study by the wide variation of in-depth accounts provided by study participants. That is, there was wide variation inthe participants responses to questions posed in the interviews and in the nature of theexperiences they described.2.3. Data AnalysisA group of five team members involved in more in-depth analysis identified, dis-cussed, and inductively developed an initial coding frame that included the very broaddescriptive themes initially evident in the data, with occupational and financial challengesof caregiving being one. The application of the initial coding frame to the entire data setwas completed by three team members using the data management software NVivoTMVersion 12 (QSR International, Burlington, MA, USA). We then harvested all data that wehad broadly coded as occupational and financial challenges in the larger data set. Thoughthe larger data set included information about the communication of CRO assessmentsand recommendations for CRO implementation in general, this was not the focus of thepresent analysis. Using an Interpretive Description approach [29], two team members thenCurr. Oncol. 2022, 29 8184inductively identified patterns, diversities, and initial categories within the occupationaland financial challenges data, which informed our development and application of a codingframe to the data. Two team members then compared and contrasted pieces of data withinand across participants, a technique known as constant comparison [34]. The initial analysiswas of the caregiver and patient interview data together and then the developing findingswere compared to the healthcare provider interview data. The healthcare provider dataaligned with and complemented the caregiver and patient data and, therefore, the occu-pational and financial challenges coding frame was also applied to these data. Two teammembers then grouped and regrouped the analytic categories, proceeding until we wereconfident that our conceptualization of the findings depicted the occupational and financialconsequences that were experienced by, and important to, caregivers of a patient withCRC. During the process of writing the study findings and obtaining input from the largerresearch team, we were guided by Interpretive Description to intentionally aim for a higherlevel of conceptualization and to move from description to interpretation [29]. Notably,we centred the results on caregiver and patient accounts and included healthcare provideraccounts when this extended or offered additional insight.3. ResultsA total of 78 individuals (25 caregivers, 37 patients, and 16 healthcare providers) par-ticipated (see Table 1 for demographic details). We did not collect individual or householdincome data because this has been a sensitive question in our past qualitative researchand we elected not to try to identify a proxy measure for comparative status. We did,however, seek a diversity in caregivers and patients reflecting a range of those who wereemployed versus not employed and of those employed, were working full-time versuspart-time. Healthcare providers included 6 nurses, 1 nurse practitioner, 2 family physicians,1 medical oncologist, 1 radiation oncologist, 2 social workers, 2 registered dietitians, and1 genetic counsellor.Table 1. Caregiver and Patient Participant Characteristics.Caregiver(n = 25)Patient(n = 37)Characteristic Number NumberMean Age (years) 55 65GenderWoman 22 16Man 2 21Non-Binary 1 0Relationship to the patient (You are the patient’s . . . )Husband/Man Partner 1Wife/Woman Partner 15Non-binary Partner 1Daughter 6Son 1Friend (Woman) 1Relationship to Caregiver (You are your caregiver’s . . . )Husband/Man Partner 19Wife/Woman Partner 8Mother 1Father 1Sister 1Daughter 1Cousin (Man) 1Friend (Woman) 2Listed more than 1 caregiver role 3Curr. Oncol. 2022, 29 8185Table 1. Cont.Caregiver(n = 25)Patient(n = 37)Characteristic Number NumberMarital StatusMarried/Common-law/Living together 20 27Divorced/Separated 1 4Single 4 5Widowed 0 1Living ArrangementLiving with the patient or their caregiver 16 29Living alone 5 7Other 4 1Employment StatusFull-time 8 6Part-time 5 6Not employed 11 23Other 1 2Cancer Stage of Patient1 3 22 1 103 6 164 8 4Unknown 7 5Patient Colostomy and/or IleostomyYes 11 18No 14 19Our findings point to temporary and long-term occupational and financial setbacksassociated with CRC management. Caring for a person with CRC involved managing occu-pational implications, including (1) revamping employment arrangements, and (2) jugglingwork, family, and household demands. Caregiver financial struggles included (1) respondingto financial demands at various stages of life, and (2) facing the spectre of lifelong expenses.3.1. Managing the Occupational Implications3.1.1. Revamping Employment ArrangementsThe caregivers, patients, and healthcare providers described a plethora of adjustmentscaregivers made in their work and career lives to fulfill the responsibilities of caring for apartner or family member with CRC. Initially, caregivers negotiated vacation days, sickdays, and then leaves of absence, but over time many caregivers realized that the strainof their responsibilities demanded they take extended time off work, forgo advancement,resign, or retire early. Many participants expressed the view it was impossible to workfull-time and meet the expectations of being a caregiver. Caregiving required a workplaceculture and direct manager that were flexible to deal with the many appointments andhospital trips. Many caregivers negotiated employment leaves, and some participants, suchas this daughter, did so repeatedly:I struggled with being away from my family as well, and then also missing work andtemporarily missing some income from work because I was taking leaves and things likethat to help care for my mom . . . (Participant 8)However, negotiating a leave was difficult for some. For example, after running out ofsick days and vacation time, an anxious wife resorted to declaring mental health issues toprocure more time off work saying, “there was no way I could be working and be worryingabout him in the hospital” (Participant 57).Curr. Oncol. 2022, 29 8186Working remotely made caregiving easier for some. Like other study participants,one caregiver reflected that she would not have been able to continue working and actas primary caregiver without the flexibility arising from the option of working remotely(Participant 60). Similarly, a woman whose mother had advanced CRC described howher remote working situation allowed greater involvement in care with a move to hermother’s city of residence (Participant 64). For others, being self-employed made it possibleto assume the caregiver role. However, this usually involved caregivers scaling back theirpaid work, as described by a self-employed daughter whose mother had CRC, but whoalso added that “if I were in a full-time job, it wouldn’t have been as easy to do that”(Participant 4).Even when caregivers successfully negotiated leaves or reduced their employment topart-time, the sole and prolonged focus on caregiving could be disruptive. For example,a woman who cared for her mother described that “a big part my identity is the work Ido. I love the work I do . . . and so having to step away from that into the caregiving piece,to not have that aspect of my identity any longer was really challenging” (Participant 64).As evident in this quote, caregivers were faced with making choices between continuingtheir meaningful and successful careers or carrying out caregiver duties. When caregivingcoincided with employment advancement, it was not always possible to request a leave,take vacation time or scale back their commitments. Thus, several participants describedcaregiver career advancement suffering and not recovering, as exemplified by a womancaring for a partner who finally gave up an opportunity after attempting to perform in anew position:I was writing for a [a publication] at the time and I was working from home. And I hadtaken on the role of editor-in-chief of [that publication]. So, I couldn’t take time off really.And I would work from the hospital and I would work at night . . . and that was tough. . . I quit my job in September of that year eventually, ‘cause I just couldn’t be therementally anymore. So, I never got back to, to writing after that. (Participant 50)The caregivers and patients commonly described caregivers’ attempts to reorganizeand revamp their work lives, but in some instances that ultimately resulted in job loss. Forsome, this was framed as a reasonable choice and one that they felt privileged to be ableto make within the circumstances of their lives. One man with CRC described his cousinthis way:She attended every appointment, big or small, she was there and she just, she juggled, tomake everything work . . . she just stopped [working in her profession] . . . (Participant 21)However, other participants described the decision to quit their employment or oc-cupation as extremely difficult, resulting in a sense of loss and grief. One wife sharedher story:I had to give up my work life. So, that was a challenge, because, you know, I didn’thave any other outlet and I think that made it hard. I think that you just sort of get intoroutines, gotta go, okay, we’re going to the hospital, we’re going to the doctor, we gotta dothis. You know, you get into that because I’m the driver . . . sometimes I go a little crazybecause I think: where’s my life? (Participant 58)In the case of several families, the loss of the caregiver’s employment was not a volun-tary choice, but rather a consequence of performing caregiving roles and responsibilities.A wife who cared for her husband described how the initial decision to take a leave ofabsence ended up in job loss:I’m on caregiver leave. So, technically my company can’t get rid of my job, but I was backto work for about three months and they let me go because they knew that my husbandwasn’t quite done . . . he would be having another surgery . . . . So, I would be prettyridiculous if I didn’t make that connection. (Participant 59)Curr. Oncol. 2022, 29 8187In the end, while some of the participants had the opportunity to completely revampor give up their employment situation, the demands of caregiving were exceptionallydifficult for employed family members and this constituted a significant concern to many.3.1.2. Juggling Work, Family, and Household DemandsThe caregivers, patients and healthcare providers described caregivers juggling manyresponsibilities while caring for a loved one with CRC. A woman caring for her partnersaid: “I don’t know how everybody lives this. I wasn’t working anymore at the time and Iwas basically living at the hospital” (Participant 50). The day-to-day responsibilities wereoverwhelming for many caregivers, especially those who were employed, as exemplifiedby this woman who cared for her mother with CRC:I was swept into the day-to-day management and just getting through it and putting onefoot in front of the other on what needs to be done next. I sort of went on to autopilot . . .I don’t feel that I was lacking in support, but it was just not something that crossed mymind because I was so absorbed in just the doing. (Participant 4)Working caregivers with children were put in a tricky position, working, parenting,and maintaining their own households in addition to tending to the family member’s illness.A daughter caring for her mother with CRC described the endless juggling over time:[It] felt like a never-ending series of events. It seemed like, okay, we’re out of the woodsand she was better. And then she got worse again. And, she needed another operation . . .and with the second operation they did the temporary ileostomy. She was in the hospitalfor a couple of weeks. Meanwhile, I was still working, taking time off work to help carefor her, but had a family at home . . . I had two young kids and a husband. So it was, itwas a lot. (Participant 8)Similarly, another “sandwich” caregiver detailed the planning she undertook to lookafter her own family and the patient with cancer:Obviously, I had to juggle the children. That was the main concern. Two were in middleschool and then two in elementary. So, it was a question of having to make sure thatthey were ready for school, and then someone picking them up at the end of the day . . .(Participant 38)For some participants, the juggling act turned into a treadmill workout as they con-stantly organized and managed their responsibilities and made contingency arrangements,all the while considering the trade-offs entailed in attending to one set of responsibilitiesover another. For example, one caregiver (Participant 10) described working 8, 10, and12-h days and then spending hours at the hospital before going home to look after herchildren’s meals.Many of the patient-participants acknowledged that their adult children had reorga-nized their employment and personal lives to care for them. A patient reflected on howher adult children provided generous care after her surgeries: “I would imagine they weretrying to figure out how they could restructure their own family lives so they could bethere when I need[ed] them, you know, take the time off [work] make sure I’ve got propergroceries” (Participant 7). Caregivers with ill spouses discovered that not only were theyjuggling employment and provision of care, but they were also managing all aspects of ahousehold that had previously been shared.Most caregivers commented on the challenges of constantly driving patients to ap-pointments, surgeries, and other procedures. For caregivers in large urban centres, thedriving task required scheduling time off work and devoting a large portion of the day topost-treatment care. Families outside urban centres faced the necessity of distance travel toreceive treatment. A woman who cared for her husband (Participant 57) described a 4-hround trip for him to get chemotherapy. Caregivers who lived in rural locations and drovelong distances to appointments, surgeries, and procedures often discovered there was noplace for family to stay overnight, and therefore chose to drive back and forth instead.Curr. Oncol. 2022, 29 8188Participants in smaller cities could sometimes be assigned treatment in a specific locationother than their home. A wife who drove a long distance to get her husband to treatmentsshared how driving in a large city was the most stressful task, second to worrying thather spouse’s cancer had metastasized (Participant 19). Travel was such an issue that somepatients moved into the home of other family members temporarily while they underwenttreatment, which could also put a strain on relationships.In their interview, one of the health professionals reflected on the challenge thesecaregivers faced in trying to find the optimal way to juggle these competing demands. “I feellike they’re working towards a finish line and then they’re not, and that’s disappointing”(Participant 68). Although the intensity of juggling employment and other responsibilitiesappeared to settle as patients completed treatment, due to recurrence, long-term effects ofsurgeries, and the emotional aftermath, the challenge seemed never completely finished foreither caregiver or patient.3.2. Struggling with the Financial ImpactThroughout the interviews it was apparent that the caregivers often struggled with thefinancial impact of caring for a person with CRC. Financial reversals occasioned by CRCcould last for years, and for some caregivers these constituted permanent changes, becausetreatment options and outcomes could extend over long periods of time. Because CRCmeant that the ill family member could no longer work in many instances, couples andfamilies previously accustomed to a dual income were forced to adjust to the constraints ofone income. A wife, like other caregivers in the study, explained:You may have made really good smart moves financially, but all of that gets on shakyground . . . it’s taking on all of the financial responsibility cause they’re no longer ableto work. At that point he [husband] didn’t have a pension of any kind at all . . . Lossof income, huge additional expenses, all of that piece . . . So, there’s all of the financialresponsibility. (Participant 5)Even participants with more resources were aware of the financial impact and com-mented on how families with lower incomes would be adversely affected:We were financially stable enough that I’ve been able to do this [care for her mother] thusfar. But I can imagine there are people that won’t be able to do this . . . . And, what doesthat look like trying to navigate? (Participant 64)When the person who became ill was the major earner in the family, the caregiversnot only struggled with the emotional and employment-related issues but also were facedwith a more challenging financial reality. As a wife whose high-earning husband became illsaid, “You really have to retool your life.” Compounding his reduced income was the factthat, in becoming her husband’s caregiver, she was forced to sacrifice her own financialand career advancements, and yet she and her husband also faced increased costs.You’re also living on one income. I have professional obligations. I mean, I can taketime off, but there’s a lot going on . . . It just appalled me. I don’t, I don’t think peopleunderstand the financial pressure cause handing me a photocopied list of resources, almostall of which are fee for service. It’s frankly not helpful. (Participant 5)The ongoing financial repercussions were especially daunting for the caregivers withchildren. A mother who lost her job while caregiving, and worried about her husband pos-sibly dying, talked about the difficulties of parenting children and maintaining a householdon her own:Now all of it’s on my plate. I’ve gone from being one of two people bringing in income tobeing the sole breadwinner. I’m also the person who takes care of the household chores.I’m the one who pays the bills. I’m talking care of the kids full-time . . . we couldn’t afforddaycare anymore . . . I’ve had to take out loans and borrow money from family members. . . so—the financial situation and dealing with having small kids, that was an ongoingthing. (Participant 59)Curr. Oncol. 2022, 29 81893.2.1. Responding to Financial Demands at Various Stages of LifeTo cope financially, many participants commented on retirement as the preferred stageof life to deal with cancer. The participants commonly acknowledged that their life-stage(i.e., working-age versus retirement-age) was intimately related to the financial demands ofcaregiving. Like several participants, a woman whose husband was her caregiver duringtreatment talked about how she was fortunate he had retired:I think I was lucky that [husband] was retired. I don’t know what it would have been like ifhe did work because he was self-employed and he put in long hours and it was high, it washigh stress . . . A lot of times he was wound right up when he came home from work. So,I wouldn’t have fared as well I can assure you, if he’d had to be working. (Participant 26)Numerous participants framed retirement as enabling the caregiver to be constantlyavailable to the patient with CRC. There were caregivers who remarked on how fortunatethey were to have, for example, a disability plan or fewer financial concerns than otherfamilies. However, even for these participants, the uncertainty of CRC transformed theshape of their retirement, as described by a woman caring for her husband:Luckily, we were okay financially . . . he got disability and it was about the same, prettyclose to the same of what he made, without income tax taken off. So, when I retired, of coursemy income went down too and he wasn’t supposed to have cancer. You know, like it wassupposed to be normal, but he got the second bout of cancer after I retired. (Participant 57)If retirement with generous pensions was the ideal stage of life to deal with CRC, thenext best financial situation was having a caregiver with stable and flexible employment ornearing retirement with a kind employer. A woman in her thirties whose parents acted ascaregivers commented on how cancer affected her father’s well-established employment;however, she qualified her situation as well-resourced, aware other families may have fardifferent experiences:I know my dad certainly took way more time off, especially during periods where I washospitalized, than he would normally take in a year. And then we also just did a lot of likefinancial, like, stretch and strain, so things were definitely more strained, but ultimatelyremained pretty stable. I think at the end of the day, I’m a very privileged person. I’mwhite. My dad is a professional, [he] has a very stable income.(Participant 22)A husband who cared for his wife described how his employer made it possible forhim to attend appointments, chemotherapy treatments, and be with her “every step of theway.” The participant was approaching retirement and indicated that if his boss had notapproved alternate work assignments and arrangements, he would have retired to put hiswife’s care first (Participant 31).In stark contrast, the caregivers who were younger, employed, or without savings ora financial safety net, described that few financial options or sources of assistance wereavailable. One of the most poignant examples came from a young mother whose husbandwas receiving treatment, and who commented on her precarious finances in relation to herstage of life:It feels like when you’re older you’ve established, you’ve built a savings account andwhatever, that’s one thing. But when you’re young and you still have little kids, andyou’re still building your career, we didn’t have the safety net that somebody in theirsixties would have. (Participant 59)This participant further described worrying that she would be unable to pay theirmortgage and feared losing their home, and yet she was unaware of anyone with whomshe could discuss finances and of any sources of assistance.That was part of what really overwhelmed me okay, so my kids are dealing with theirdad going through cancer and then, what’s going to happen? We’re going to get ourhouse taken away. Well, that’s just an added stress. [It] would be really nice if there wasCurr. Oncol. 2022, 29 8190somebody to at least go, hey, if you need help or have questions about financial planning,this is a great place to call. (Participant 59)3.2.2. Facing the Spectre of Lifelong ExpensesFollowing primary CRC treatment, families were often shocked to learn expensescontinued to accrue. Even though many participants were fortunate to have good employer-provided health insurance plans, there were additional costs for equipment, diets, andmedications that fell outside public and private plans. As one woman who cared for herhusband explained:If you are of a low income, you possibly would get some things provided but to get thebest things, it’s really expensive . . . he’ll put in an order, it’ll be $600. We’re fortunatethat when he retired, we bought the best insurance . . . the means actually give you yourlife back. (Participant 28)In instances where the patient required an ostomy, all the patient and caregiverparticipants commented on the high out-of-pocket expenses of supplies. Several alsodescribed the prohibitively high costs of nutritional supplements or foods that helpedregulate ostomy output. Healthcare providers similarly described the significant cost ofspecialized ostomy supplies, especially if the patient had complications with their ostomyand/or hoped to return to work:When a person does get an ostomy, and they’re getting that first initial order of supplies,there can be some sticker shock when people see what that first bill may be. It can beanywhere from $150 to sometimes $500, depending on the type and the amount of ostomyproducts and supplies . . . And if a person is able to return to work shortly after havingthis type of surgery, there can be physical restrictions—especially for the first couple ofmonths—that may inhibit someone who has a more physical type of job from being able toreturn to work. (Participant 67)Other healthcare participants talked about incontinence and ileostomy supplies, andspecific devices such as transanal irrigation systems, which are “astronomically expensive”and often not covered by the government-funded health care system or private insuranceplans. Both the patients and the caregivers expressed frustration that they would bepaying these medical expenses indefinitely. It was the same for medication costs. Healthprofessionals often encountered families who said, “we cannot afford this and if I paid forthis [medication], then I don’t have enough money for food” (Participant 76).The caregivers and patients reported there were numerous forms required to accessfinancial assistance and government health and social benefits beyond what was covered bypublic health care. Several caregivers commented that social workers had been extremelyhelpful for guiding them through documents for employer health insurance claims, taxbreaks, and other government benefits. A social worker emphasized how a family’sresources always affect the quality of living and dying with cancer: “You’re not able toreally focus on meaningful moments when you’re not sure how you’re going to be payingthat month’s rent” (Participant 74).4. DiscussionThis study adds to the small but growing body of evidence describing cancer-relatedoccupational and financial challenges facing caregivers, even in a universal government-funded health care system. Our findings point to temporary and long-term occupationaland financial setbacks associated with CRC management and caregiving. Caring for aperson with CRC involves managing occupational implications, including revampingemployment arrangements, and juggling work, family, and household demands. Caregiverfinancial struggles include responding to financial demands at various stages of life andfacing the spectre of lifelong expenses.Much of the research highlights reduced work or loss of employment as an indirectcost contributing to caregiver financial burden [18,35]. While our study was no exception,Curr. Oncol. 2022, 29 8191practical and emotional challenges among caregivers also arose from the complex andongoing process of negotiating alternate work assignments and arrangements, taking paidsick or vacation days, or taking unpaid time off. The caregivers described feelings of lossand grief when they did not meet professional goals, they were no longer engaging in mean-ingful work, and their professional identity waned. Some described cancer caregiving as aturning point with long-term occupational, employment, and professional consequences,wherein caregivers had not been able to return to their rewarding careers. This alignswith previous research demonstrating that caring for a husband with an advanced illnesspresented challenges to a caregiver’s occupational life including diminished productivity,decreased quality of work, and missed opportunities for promotion [36]. The stresses ofrevamping employment arrangements, feelings of loss and grief, and inability to engage inmeaningful employment perhaps contributes to emotional distress, caregiver burden, andpoorer quality of life beyond these financial implications. These findings suggest that theimpact of caregiving on occupational life can be significant and therefore provide potentialtargets to consider as CRO measures continue to be conceptualized and operationalized inthe context of CRC.There were also numerous caregivers in our study who were not in a position toreduce or make the kinds of changes to their employment that would have enabled themto fulfill caregiver roles and responsibilities. There appeared to be a compounding effectover time such that the more responsibilities a caregiver juggled, the greater the pressureto make trade-offs among equally important responsibilities, and the higher the risk foremotional distress that might build and persist. Further, not being able to take time offwork in fact generated additional costs at times, such as to pay for childcare. Our findingssuggest that assessment of caregiver challenges ought to include questions about balancingoccupation and employment along with other responsibilities and finance-related emotionaldistress and exhaustion throughout the cancer trajectory. These findings provide evidenceto support the content validity of including occupational and financial items on CROmeasures for cancer. However, efforts are needed to determine how to feasibly embedsuch CRO measures into care processes in a manner that enables healthcare providers torespond to identified caregiver needs and link caregivers to appropriate resources.In our research, it appeared that some caregivers of patients with CRC were perhapsat high risk of financial hardship and its associated distress and reduction of quality of life.Serious financial implications appeared to be greater in instances where the caregiver wasyounger, and faced also with juggling employment, looking after children, and assumingfamily financial responsibilities. This heightened risk has been suggested in prior studieswhere younger caregiver age, combined with greater patient symptom severity, was asso-ciated with higher financial burden [37–39]. In line with research on CRC survivors [40]and people with an ostomy [41], caregivers of a person with an ostomy in our researchalso described significant, often unexpected, and ongoing expenses associated with stomamanagement (e.g., ostomy supplies, nutritional supplements), placing them at higher riskof ongoing financial burden. Patients with metastatic or advanced cancer require resource-intensive therapy and care that contribute to financial hardship [35]. Further, individualswho are uninsured and low income, and from racialized or ethnic minority groups are morelikely to have metastatic disease and to be more susceptible to financial burdens [35]. Ourstudy included caregivers of patients with metastatic or advanced CRC, although we didnot separate out their accounts during analysis given the smaller numbers in our sample.This therefore remains an area worthy of further study in the context of Canadian familieswith CRC [40].The caregiver accounts in our study, including comments from those who were strug-gling financially and those who had access to adequate resources, clearly confirmed thatthere were financial challenges across contexts. This observation adds to the growing evi-dence of cancer-related financial hardship shouldered by cancer patients and their familiesin countries with government-funded or mixed government and privately funded healthcare [11–15]. Specific to CRC, in an Irish study, where there is a mixed public-private healthCurr. Oncol. 2022, 29 8192care system, financial burden was ranked as highly as health burden among caregivers [28].Indirect costs of caregiving appeared to drive the financial challenges in our study, pointingto the need for further investigation into the role of caregiver employment, includingconsideration of social support services and ways in which practice and policy interven-tions might temper caregiver burden. Notably, due to the nature of the sample we wereable to recruit, our findings do not represent the more severe implications for those withserious employment or financial precarity. Research is urgently needed to understand thechallenges, financial and other, of caregivers of people with cancer who experience serioussocioeconomic disadvantage and structural vulnerability (e.g., poverty, unemployment,homelessness, racism, criminalization due to illicit substance use, or mental health stigma).In a 2020 Canadian study investigating family caregivers’ experiences caring for structurallyvulnerable populations at end-of-life, caregivers themselves were found to be living withinthe constraints of structural vulnerability, with caregiving shaped by contexts of povertyand substance abuse, housing instability, and emotionally challenging relationships [42].The authors of that study contend that the relatively minimal, one-size-fits-all caregiversupports that exist in Canada hold little relevance for vulnerable populations. Achievinghealth and health care equity in cancer care will require heightened consideration of theintersecting ways in which social and structural forces constrain caregiver agency andopportunities, and amplify vulnerabilities for poor health and social outcomes [43,44].While several study participants commented on the important role healthcare providersplayed in facilitating efforts to obtain financial assistance, of concern were the reports ofcaregivers who felt utterly alone in navigating their financial reality and did not receiveany guidance or resources from healthcare providers. Currently, there are no consistentapproaches across Canadian cancer centres and elsewhere to determine financial challengesor related distress among patients and/or their family caregivers, including through theuse of CRO measures [12]. Although some contend that discussions at the beginning of thecancer journey are most common [12], this timing would not take into account the financialpicture that unfolds over time in the trajectory of CRC. Our research signals the importanceof healthcare providers assessing not only patient but also caregiver financial challengesacross the cancer trajectory.Routine assessments that include the use of CRO measures are perhaps one importantstrategy given evidence of the benefits of patient-reported outcome use in oncology. Evi-dence suggests that patent-reported outcomes influence patient-clinician communicationby increasing symptom awareness, prompting discussions, streamlining consultations, andfacilitating interprofessional communication [45]. Further, incorporating patient-reportedoutcomes into routine oncology care improves patient outcomes, quality of life, survival,and health system outcomes [46–51]. Though assessment alone will not ameliorate issuesfor caregivers, CRO implementation, including those that pertain to occupational andfinancial challenges, represents one aspect worthy of further investigation. Perhaps of evengreater importance is referral to those who can offer relevant information, supports, andresources. However, information, supports, and resources specific to occupational, employ-ment, and financial challenges are likely inadequate in many oncology contexts, signalingthe need to develop accessible supports. Much work is needed to build the capacity ofcancer organizations to make such CRO assessments and plans part of standard care, toenable healthcare providers to engage in discussion of issues related to finances, and toensure robust supports and resources are available for patients and families. Clinicallyembedded research will be key to understanding how best to implement CRO in oncologycare that link to necessary supports.LimitationsStrengths of this qualitative research included the large sample size and the diversityin participant experiences that enabled us to look for variation in our data as well asthe inclusion of caregivers (spousal and non-spousal), patients, and healthcare providers.Unfortunately, we did not collect individual or household income data for caregiver orCurr. Oncol. 2022, 29 8193patient participants, making it difficult to characterize the sample across income quartiles.However, it was clear from participant accounts that individuals who were strugglingfinancially as well as those with greater resources were represented in this study, andthat they were all mindful of the financial implications that CRC occasioned. Limitationsof this research also included our reliance on online recruitment methods that requiredparticipants to initiate contact with the study team. We intended to purposefully recruitcaregiver and patient participants through oncology and community health care settingsto obtain a sample of individuals who represented diversity in participant characteristicsand experiences. However, the full diversity of sampling originally intended was notpossible owing to the COVID-19-related restrictions and our reliance on online recruitment;therefore, the final sample was one of convenience. Our findings cannot represent thefull diversity of caregiver and patient experiences, particularly those who experiencegreater socioeconomic disadvantage and structural vulnerability, who could not have beenreached via online recruitment. Moreover, while we attempted to recruit male-identifyingand gender-diverse caregivers, these individuals did not contact our research team asreadily as female-identifying caregivers, and so a gender-based analysis of occupational-and financial-based sequelae was not conducted. Further research focusing on genderis warranted considering evidence that participation in the labour force is affected bycaregiving to a greater extent among women than men [52]. Because interviews wereconducted virtually, in the first 8 months of the COVID-19 pandemic, it is also possible thatparticipant recollections were reflective of and shaped by pandemic-related public-healthmeasures and stresses, particularly as they related to occupational and financial concerns.5. ConclusionsThere have been calls for the routine collection of patient-reported finance-relatedoutcome measures [53]. Given that caregivers of a patient with CRC face substantialoccupational and financial challenges that last throughout the cancer trajectory, assessmentof related CROs should also be considered. Further research is necessary to developappropriate CROs to measure the multifaceted nature of the challenges CRC caregiversface and to determine how such assessments might best be integrated into oncology caredelivery processes. Another important step will include initiatives that build capacitywithin cancer care organizations to embed occupational and financial assessments into careand to respond to caregiver needs via the offering of appropriate information, supports,and resources.Author Contributions: Conceptualization, A.F.H., M.M. and A.P.; methodology, S.T. and A.F.H.;formal analysis, A.F.H., K.L., M.-J.T., P.H., S.M.B., S.T. and M.M.; Writing—original draft preparation,A.F.H. and M.T.K.; writing—review and editing, A.F.H., K.L., S.T., A.C.W., L.L., M.M., A.P., P.H.,S.M.B., M.-J.T., M.A.D.V. and M.M; project administration, K.L.; funding acquisition, A.F.H., A.P. andM.M. All authors have read and agreed to the published version of the manuscript.Funding: This research was funded by the BC SUPPORT Unit, Patient-Centred Measurement Cluster,grant number PCM-006. A.F.H. holds a Michael Smith Health Research BC Scholar Award.Institutional Review Board Statement: The study was conducted according to the guidelines of theDeclaration of Helsinki and approved by the Ethics Committee of BC Cancer (H19-03562 approvedon 14 April 2020).Informed Consent Statement: Informed consent was obtained from all subjects involved in the study.Data Availability Statement: The data that support the findings of this study are not availableon request from the corresponding author nor are they publicly available because they containinformation that could compromise the privacy of research participants.Acknowledgments: We would like to thank our patient and caregiver partners, our other multidisci-plinary research team members, and our participants for their support on this project.Conflicts of Interest: The authors declare no conflict of interest.Curr. Oncol. 2022, 29 8194AbbreviationsCRC: colorectal cancer; CRO: caregiver-reported outcome.References1. 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Faculty
Researcher
caregiver
family
supportive care needs
employment
occupation
financial costs
economic costs
qualitative research
caregiver reported outcomes
patient reported outcomes
colorectal cancer
oncology
psychosocial
Occupational and Financial Setbacks in Caregivers of People with Colorectal Cancer: Considerations for Caregiver-Reported Outcomes
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