Financial toxicity as logistical and relational burden across the lifespan during autologous transplant preparation

Financial toxicity, the material, psychological and social burden associated with the cost of cancer care, can meaningfully affect patients preparing for autologous stem cell transplant (ASCT) for multiple myeloma. This study examines how financial toxicity emerges within treatment preparation using a secondary qualitative analysis of data from the Ready for Transplant study. The dataset included approximately 150 hours of ethnographic observation of 70 nurse–patient education encounters and semistructured interviews with 35 patients. Transcripts and field memos were coded to identify how financial burden was expressed and negotiated. Financial toxicity rarely appeared as explicit cost talk; instead, it surfaced indirectly through work and income disruption, repeated travel and scheduling demands, and caregiver time burden including concerns about imposing financial or emotional burden on family members. These relational and logistical expressions of financial strain influenced treatment readiness and decision-making, underscoring the need for proactive financial navigation during ASCT preparation.

Financial toxicity refers to the material, psychological, and social burden associated with the cost of cancer care, including direct out-of-pocket expenses, loss of income, disruptions to employment, and the downstream consequences of financial strain on patients and families. Over the past decade, financial toxicity has emerged as a critical dimension of cancer survivorship, with accumulating evidence linking financial hardship to worse quality of life, increased symptom burden, treatment nonadherence, and adverse psychosocial outcomes (1–3). Although financial toxicity affects patients across cancer types, individuals with hematologic malignancies, such as multiple myeloma, are uniquely vulnerable due to prolonged treatment trajectories, complex care pathways, and the growing reliance on high-cost therapies delivered over many years (4–6).

Autologous stem cell transplant (ASCT) remains a cornerstone of treatment for eligible patients with multiple myeloma and is associated with improved survival and disease control. However, ASCT requires intensive preparation, prolonged engagement with the healthcare system, frequent travel, extended time away from work, and substantial reliance on informal caregivers. Even among insured patients, ASCT is associated with significant financial burden, including depletion of savings, loss of income, increased out-of-pocket expenses, and long-term financial insecurity (7, 8). Quantitative studies consistently document high prevalence of financial toxicity among patients undergoing transplant, with estimates suggesting that nearly half of patients experience meaningful financial hardship and that this burden is associated with worse health-related quality of life and mental health outcomes (9, 10).

Despite this growing body of evidence, much of the financial toxicity literature in multiple myeloma and transplant settings relies on cross-sectional surveys and standardized measures such as the Comprehensive Score for Financial Toxicity (COST). These approaches have been essential in establishing prevalence, identifying risk factors, and demonstrating associations between financial strain and clinical outcomes (6, 11, 12). However, they provide limited insight into how financial toxicity is experienced and negotiated in real time across patient populations, particularly during critical moments of treatment preparation. As a result, financial toxicity is often conceptualized narrowly as a function of affordability or out-of-pocket cost, rather than as a dynamic, relational, and contextually embedded phenomenon.

Qualitative studies of financial toxicity in hematologic malignancies remain relatively scarce; however, existing work suggests that financial strain is deeply intertwined with identity, moral responsibility, and caregiving relationships rather than expressed solely as concern about medical bills (3, 13). Patients often minimize or defer discussion of financial concerns, prioritize perceived medical necessity over cost, or frame financial hardship as an unavoidable consequence of pursuing life-prolonging treatment (1, 5, 7). Across both qualitative and mixed-methods studies, caregivers frequently absorb substantial unpaid labor, including care coordination, transportation, scheduling, and administrative work, which can exacerbate household financial strain while remaining largely invisible within clinical encounters (8, 10, 13). These findings underscore the value of qualitative approaches that move beyond explicit cost talk to examine how financial toxicity surfaces indirectly through everyday treatment-related decisions, time demands, and relational negotiations embedded within cancer care (2, 14).

Older adults represent an important population in this context, although financial toxicity affects patients across the age spectrum. While older age is sometimes associated with lower measured financial toxicity in survey-based studies, often attributed to Medicare coverage or retirement status, this apparent protection may obscure other forms of financial and time-related burden, including fixed incomes, caregiving dependencies, and heightened concern about burdening family members (1, 10). For patients in midlife and older adulthood preparing for ASCT, financial considerations are often inseparable from questions of functional independence, caregiver availability, and the sustainability of prolonged treatment demands. Yet these dimensions are rarely captured in existing financial toxicity frameworks.

The current study addresses this gap by examining how financial toxicity emerges during ASCT preparation for patients with multiple myeloma using qualitative data from the Ready for Transplant (R4 T) formative evaluation. The R4 T evaluation was an ethnographic-based quality improvement initiative conducted over 18 months at a large U.S. academic cancer center, originally designed to understand and improve patient education for individuals preparing for ASCT. The evaluation included extensive observation of nurse–patient education encounters, semistructured interviews with patients, and detailed field notes documenting the logistical, relational, and emotional context of transplant preparation. While the original focus of R4 T was educational processes, these data provide a strong opportunity to examine how financial toxicity domains, such as work disruption, travel demands, and caregiver responsibilities, are expressed during treatment preparation and embedded in scheduling decisions, caregiver negotiations, and relational interactions rather than explicit discussion of cost or affordability.

Understanding how financial toxicity manifests during ASCT preparation has important implications for clinical practice and policy. Proactive financial navigation, caregiver support, and structural interventions must account for the ways financial strain is embedded in scheduling, travel, and caregiving demands, rather than relying solely on patient-initiated cost discussions. Addressing financial toxicity in this context requires attention to relational and logistical burdens that extend beyond traditional measures of affordability, particularly for patients in later midlife and older adulthood. By making these dynamics visible, this study aims to inform more responsive, equitable, and patient-centered approaches to financial toxicity in cancer care. Although the original R4 T evaluation was not designed to examine financial toxicity, repeated patterns across interviews, observations, and field memos revealed consistent ways in which financial strain was embedded in treatment preparation, prompting a focused secondary analysis of these dynamics.

This study reports a secondary qualitative analysis of data collected as part of the R4 T formative evaluation, an ethnographic-based quality improvement initiative examining patient education for individuals with multiple myeloma preparing for ASCT. The R4 T evaluation was reviewed by the Emory University Institutional Review Board, in conjunction with the University of Georgia Institutional Review Board and was determined to constitute quality improvement and program evaluation, not human subjects research. As such, formal informed consent was not required, consistent with prior publications from this dataset. The present analysis represents a distinct secondary analytic focus on financial toxicity that was not a primary aim of the original evaluation.

Data sources and sample

The current study draws on qualitative data collected over approximately 18 months as part of the R4 T formative evaluation conducted at a large U.S. academic cancer center offering ASCT for multiple myeloma. The evaluation was embedded within routine clinical care and focused on understanding patients' and caregivers' experiences as they prepared for transplant.

Ethnographic observations took place during the education portion of patients' ASCT “evaluation day.” Evaluation day includes a series of clinical and educational activities intended to determine whether patients can safely proceed with transplant and to prepare them for the upcoming treatment process. These activities typically included laboratory testing, imaging, cardiopulmonary assessments, meetings with clinical team members (e.g., social work), and a comprehensive education session led by a nurse navigator. During the education session, patients and accompanying caregivers were oriented to the transplant process, expected timelines, potential side effects, caregiving responsibilities, and logistical requirements. Over the course of the evaluation, approximately 150 hours of observation were conducted across 70 nurse–patient education encounters. Observations focused on the sequence of activities, roles of patients, caregivers, and clinicians, and verbal and nonverbal interaction during education. As the evaluation progressed, education sessions were audio-recorded and later transcribed to supplement detailed field notes and allow closer attention to language use and interaction.

Following observed education visits, informal ethnographic interviews were conducted with patients and caregivers, as well as separately with nurse navigators, to clarify observations and capture immediate reactions to the education. All written materials provided to patients during these visits were also reviewed, including informational folders and transplant guidebooks.

The evaluation was later expanded to include semistructured interviews with patients and, when present, patient–caregiver dyads. These interviews typically took place during the patient's inpatient admission for ASCT, most often in the patient's hospital room within the first days of hospitalization. Interviews explored patients' experiences learning about their diagnosis, preparing for transplant, navigating treatment logistics, and managing the personal and relational impacts of ASCT preparation. In total, 35 semistructured interviews were completed. Additional brief ethnographic interviews were conducted near the end of the patient's approximately two-week hospitalization to capture evolving perspectives during transplant and early recovery.

Participants were approached by clinic staff, primarily nurse navigators, during routine care. All patients with multiple myeloma undergoing ASCT were eligible to participate in the evaluation, and no patients declined. Throughout data collection, detailed field notes and analytic memos were maintained to document contextual factors, logistical challenges, caregiving demands, and observations relevant to patients' preparation for transplant.

Patients included in this analysis were adults undergoing evaluation and preparation for ASCT; many were later midlife or older adults and were accompanied by spouses, adult children, or other unpaid caregivers. Additional details regarding recruitment procedures, study setting, and the broader formative evaluation design have been reported in prior publications from the R4 T study (15–19).

Analytic approach

Data were analyzed using conventional qualitative content analysis, an inductive approach appropriate for exploring under-examined phenomena without imposing a predetermined coding framework (20). Financial toxicity was treated as a sensitizing concept, guiding analytic attention while allowing categories and patterns to emerge through close engagement with the data rather than through a priori code definitions. Established frameworks of financial toxicity informed analytic sensitivity; however, the analysis was not structured to formally map data onto predefined domains, but to examine how these domains were expressed in the context of treatment preparation. For the purposes of this analysis, financial toxicity was applied in instances where experiences such as work disruption, travel demands, or caregiving responsibilities had clear implications for resource use, income, or reliance on unpaid labor. These experiences were distinguished from broader expressions of treatment burden, time demands, or emotional overwhelm when no clear financial or resource-related implications were evident. All coding and analysis were conducted by a single researcher with extensive familiarity with the dataset. This approach aligns with contemporary guidance emphasizing transparency, epistemological alignment, and reflexive analytic engagement as central indicators of rigor in qualitative research, rather than reliance on team-based consensus or reliability metrics (21, 22).

Analysis proceeded iteratively. Transcripts and field memos were read multiple times to achieve analytic immersion and to identify segments of data reflecting financial burden, including, but not limited to, cost concerns, work and income disruption, travel and scheduling demands, caregiver labor, and expressions of concern about burdening family members. Initial codes were generated inductively through line-by-line attention to data reflecting financial strain and were then compared across interviews, observations, and field memos (23). Codes that captured similar phenomena (e.g., scheduling disruptions, missed work) were iteratively grouped and refined into broader analytic categories, while distinctions between categories were clarified through repeated comparison across cases and data sources.

Rather than quantifying code frequency, analysis emphasized patterns of expression and contextualized meaning, with attention to how financial toxicity surfaced indirectly through logistical and relational decision-making during treatment preparation.

Analytic rigor was supported through sustained engagement with the full dataset, systematic memoing, and maintenance of an audit trail documenting analytic decisions over time (24). Reflexive notes were used to record analytic assumptions and evolving interpretations throughout the analytic process (25). This approach ensured transparency and consistency while remaining appropriate for a secondary qualitative analysis conducted within a quality improvement context. As a single researcher with prior experience in qualitative methods and familiarity with financial toxicity literature, reflexive attention was paid to how existing knowledge and assumptions could shape interpretation. Analytic memos were used to document evolving interpretations and to identify instances where initial assumptions were challenged or refined. Particular attention was given to distinguishing financial toxicity from broader treatment burden, and to examining instances in which financial considerations were not salient, in order to reduce the risk of confirmation bias and interpretive drift.

Given the original data were not collected specifically to examine financial toxicity, care was taken to avoid over-interpretation. Analytic attention was limited to instances in which financial implications were evident in relation to work, travel, caregiving, or resource allocation, and these were distinguished from broader expressions of emotional distress or treatment burden. Instances in which participants described burden without clear financial or resource implications were examined as contrast cases to refine analytic boundaries. Analytic sufficiency was judged based on the recurrence of these patterns across interviews, observations, and field memos, and the point at which additional review of the dataset did not yield substantively new insights regarding how financial toxicity was expressed in this context.

The results are organized first by describing the sample, followed by themes of (1) financial toxicity rarely appeared as explicit cost talk; (2) work and income disruption; (3) Travel and Scheduling Demands as Financial Strain; and (4) Caregiver Time Burden and Labor including representative quotes throughout.

Sample characteristics

The findings draw on ethnographic observation of 70 nurse–patient education encounters conducted as part of the R4 T formative evaluation, alongside semistructured interviews with 35 patients preparing for autologous stem cell transplant (ASCT) for multiple myeloma. Education sessions were lengthy, lasting an average of 89 min, with individual visits ranging from 36 to 124 min. Interview participants overlapped with the observed sample, allowing for triangulation between observed interactions and retrospective accounts.

Patients observed during education encounters were evenly split by sex (50% male), predominantly White (56%), and most were married (67%). The average patient age was 64 years, with ages ranging from 29 to 77 years. Informal caregivers accompanying patients were, on average, 59 years old (range 43–73), evenly split by sex (50% male), and predominantly married (67%). In most cases, caregivers were spouses or adult children who attended education visits and participated actively in discussions.

Formal caregivers involved in the education process included nurse navigators (n = 5) and social workers (n = 2). These clinicians had an average age of 44 years, were primarily female (86%), and had worked in their respective roles for an average of four years. Together, these data reflect the relational context in which ASCT preparation occurred, involving patients, unpaid family caregivers, and clinical staff within extended, information-dense education encounters.

Financial toxicity rarely appeared as explicit cost talk

Across interviews and education encounters, and field memos, explicit discussion of out-of-pocket costs, insurance coverage, or affordability was uncommon. Rather than framing financial strain directly, patients and caregivers oriented to financial toxicity through how care was organized, evaluated, and justified, particularly in relation to scheduling intensity, travel demands, and decisions that carried clear time and cost consequences. In this sense, financial toxicity was enacted through patterns of accommodation and endurance rather than articulated as financial complaint. This pattern was identified through repeated review of the full dataset, in which references to financial strain were more often embedded in discussion of scheduling, work, caregiving, and travel than expressed as direct concerns about cost or affordability.

Participants frequently described treatment preparation as overwhelming, but this overwhelm was embedded within conditions that required repeated trips, prolonged days at the cancer center, and coordination across work and family responsibilities. During one education encounter, a patient reacted to the initiation of transplant preparation by stating, “They are throwing everything at me at once” (Participant 005). Although framed as cognitive or emotional overload, this reaction occurred in the context of same-day scheduling of multiple appointments, initiation of medications, and ongoing travel to the transplant center, conditions that entailed time away from work, transportation costs, and logistical strain for both patients and caregivers.

Similarly, when a nurse apologized for the number of appointments required, a caregiver responded humorously, “If it's a scavenger hunt then we need to get something fun in the end” (Participant 012). Humor functioned as a way to manage the strain of repeated visits and fragmented scheduling, while simultaneously normalizing the additional time and travel required. In these interactions, the financial dimensions of care, missed work, transportation, and incidental expenses, were present but rendered indirect through lighthearted or pragmatic framing.

Even when cost-related implications were more explicit, participants often deferred financial considerations in favor of perceived medical necessity and safety. In one education session, a nurse explained that medication could reduce the risk of severe mouth sores but would require additional days spent locally near the transplant center. Rather than questioning the implications of extended lodging or time away from home, the caregiver responded, “I prefer to be on the safe side” (Participant 041). The conversation centered around possible grant funding to cover the lodging costs, along with identification of less expensive alternatives near the medical center. This response illustrates how financial trade-offs were subsumed under moral commitments to safety and responsibility, effectively backgrounding cost while still absorbing its consequences.

Work and income disruption

Disruptions to work and income emerged as a central, though often indirectly expressed, dimension of financial toxicity during preparation for autologous stem cell transplant. Rather than describing financial hardship explicitly, patients and caregivers oriented to work disruption through practical negotiations about schedules, leave, and role responsibilities. These discussions revealed how treatment preparation intersects with employment constraints and identities tied to productivity, independence, and reliability.

Several patients described the challenge of coordinating transplant-related care alongside ongoing employment. In one education encounter, a patient who remained actively employed attempted to align procedure dates with work obligations across his family network. When it became apparent that his son could not provide transportation on a scheduled treatment day due to his own job responsibilities, the patient and nurse navigator discussed whether care could be rescheduled. Although no explicit reference to income loss or affordability was made, the exchange illustrated how employment demands shaped the feasibility of treatment timelines. As the patient explained, transportation was “not the problem,” but rather “getting everybody lined up on the same day” (Participant 036), implicitly acknowledging the limits imposed by work schedules and availability.

Caregivers' employment constraints were even more visible. In one encounter, a caregiver asked directly when he should plan to take “three weeks of vacation” to support his spouse through transplant preparation and hospitalization (Participant 026). The phrasing assumed that caregiving would require extended time away from work and raised questions about the adequacy of paid leave, though these issues were not explicitly discussed. Other caregivers framed work disruption as something to be managed quietly. One caregiver noted that he would “just move some things around at work” to attend appointments (Participant 050), minimizing what likely represented significant occupational trade-offs.

Travel and scheduling demands as financial strain

Repeated travel and complex scheduling demands represented one of the most visible and persistent manifestations of financial toxicity. Many patients traveled long distances to the transplant center, requiring coordination of transportation, temporary housing, and extended stays away from home. These demands were a recurring feature of education encounters and frequently shaped treatment planning discussions. One patient lived nearly four hours from the cancer center and relied on multiple family members for transportation. During an education encounter, the nurse and caregivers negotiated procedure timing around work schedules, weekend staffing limitations, and the availability of drivers (Participant 043). These negotiations were explicitly shaped by efforts to avoid unplanned hospital admissions that would extend lodging needs and associated costs. Lodging expenses surfaced indirectly but repeatedly. When subsidized housing at the [location name redacted] was unavailable, one couple stayed at another nearby hotel costing over $200 per night. Field notes document that the caregiver was “concerned about the cost of lodging” and actively engaged in problem-solving to identify more affordable alternatives (Participant 060).

Scheduling inefficiencies further compounded financial strain. In one instance, a patient who forgot to fast for a scheduled scan was required to return the following day, necessitating an additional trip to the cancer center (Participant 011). The nurse apologized for what she described as a “scavenger hunt” of appointments, acknowledging the cumulative burden of fragmented scheduling. Together, these examples demonstrate how travel and scheduling demands functioned as a form of financial toxicity, imposing time, lodging, and transportation costs that were rarely framed as financial hardship but nonetheless shaped treatment readiness.

Caregiver time burden and labor

Caregiver labor constituted a substantial and often invisible component of financial toxicity during ASCT preparation. Caregivers coordinated appointments, administered injections, managed medications, and provided transportation, frequently without formal support. Although caregivers rarely articulated this work as financial burden, it required significant time investment and often substituted for paid clinical or navigation services. In several education encounters, caregivers assumed responsibility for clinical tasks such as administering subcutaneous injections and maintaining an external catheter. One caregiver stated, “I’ll do this. I have watched the videos,” when discussing dressing changes in order to help avoid infection (Participant 010). These moments illustrate how caregiving responsibilities expanded into quasi-clinical labor that was normalized within the education process and undertaken without compensation or formal recognition. Caregiver strain was also evident through behavioral cues captured in field notes. During lengthy education sessions, caregivers were observed becoming visibly uncomfortable, repeatedly leaving the room, or appearing agitated (Participant 043), reflecting the cumulative toll of time-intensive caregiving layered onto existing responsibilities.

Patients were acutely aware of this burden and frequently oriented to its moral dimensions. One patient described reliance on his husband to recall treatment details, noting that “he is the one who remembers things about my treatment” (Participant 005), signaling dependence that carried emotional weight. Others expressed concern about missing family events due to hospitalization, including birthdays and holidays (Participant 014), or minimized their own hardship by reminding themselves that “other people are worse off than me” (Participant 016). One participant joked about contributing to the study in any way possible, stating, “Really, even stuffing envelopes is not beneath me” (Participant 056), reflecting a desire to remain useful rather than solely a recipient of care. Together, these data show how financial toxicity was deeply relational, experienced through concern about burdening family members and the redistribution of labor within households.

The current manuscript highlights how financial toxicity emerged during preparation for ASCT among adults with multiple myeloma, many of whom were in later midlife or older adulthood navigating treatment alongside spouses or other unpaid caregivers. Although the concept of financial toxicity is often operationalized through measures of out-of-pocket costs, debt, or insurance-related hardship, the present findings suggest that financial burden during ASCT preparation was rarely articulated in such explicit terms. Instead, financial toxicity surfaced indirectly through disruptions to work and income, repeated travel and scheduling demands, the labor of unpaid caregivers, and persistent concern about burdening family members. These findings extend existing research by illustrating how financial toxicity is embedded in the everyday organization of care and relational decision-making rather than expressed as discrete economic distress.

A substantial body of literature has documented the prevalence and consequences of financial toxicity in multiple myeloma and transplant populations, including associations with symptom burden, psychological distress, and quality of life (2, 5, 7, 8, 26). More recent work has emphasized that financial toxicity is dynamic, cumulative, and often intertwined with time demands and treatment intensity (6, 10). The current study aligns with this work while offering a complementary perspective on how financial toxicity becomes visible, or remains obscured, during the preparatory phase of intensive cancer treatment. Rather than describing cost as an isolated problem, participants framed their experiences through narratives of overwhelm, logistical complexity, and moral responsibility, suggesting that financial toxicity may be normalized as an expected feature of care rather than recognized as a modifiable burden.

One notable finding was the near absence of explicit cost talk during education encounters and interviews, even in situations where financial strain was clearly present. Patients and caregivers rarely questioned affordability directly, instead orienting to safety, treatment success, or adherence to clinical recommendations. Humor, reframing, and minimization functioned as interactional strategies that allowed participants to manage uncertainty and anxiety while deflecting attention away from the financial implications of treatment preparation. Similar patterns have been observed in qualitative studies of cancer care, where patients may avoid raising financial concerns out of fear of appearing noncompliant, ungrateful, or overly focused on money in the context of serious illness (1, 13). In the present study, however, these patterns were not simply individual coping strategies; they were shaped by the structure of ASCT preparation itself, which distributed burden across time, space, and family networks in ways that made financial strain difficult to isolate or name.

Work and income disruption emerged as a central dimension of financial toxicity, even when not framed explicitly as such. Patients' efforts to coordinate treatment schedules with employment responsibilities, both their own and those of family members, highlighted how financial toxicity intersects with identity, independence, and expectations about productivity, particularly for patients in later midlife or older adulthood. Prior research has shown that employment disruption is a key driver of financial hardship in cancer populations, including those with multiple myeloma (4, 7). The current findings extend this work by showing how work-related concerns are embedded in moment-to-moment decisions about feasibility and readiness for transplant. Questions about when to take leave, who could provide transportation, or whether valued activities could be maintained were not ancillary to treatment preparation; they were integral to how patients and caregivers evaluated whether ASCT was manageable within the context of their lives.

Travel and scheduling demands represented another prominent pathway through which financial toxicity manifested. Repeated trips to the transplant center, temporary housing, and extended stays away from home imposed substantial time and financial costs, particularly for patients living at a distance. These findings echo prior work documenting the “hidden costs” of cancer care, including transportation and lodging expenses that are often inadequately addressed by insurance coverage or institutional support (9, 14). What the present study adds is insight into how these burdens are negotiated in real time during education encounters, where missed appointments, fragmented scheduling, and contingency planning translated directly into additional travel and expense. Even when clinicians acknowledged the inconvenience of these demands, they were typically treated as unavoidable features of care rather than as targets for intervention. These findings also align with emerging work on time toxicity in cancer care, which highlights the substantial time demands associated with treatment, including travel, scheduling, and coordination, as a distinct and meaningful burden for patients and families (10).

Caregiver labor emerged as a particularly salient, yet underrecognized, component of financial toxicity. Caregivers in this study coordinated appointments, managed medications, administered clinical tasks, and served as informal financial navigators, often without formal training or compensation. Although caregivers rarely framed this labor as financial burden, it required significant time investment and frequently displaced paid services or employment opportunities. In the United States, where access to paid leave for caregivers remains limited and uneven, such demands may require caregivers to use unpaid leave, reduce work hours, or exit the workforce entirely, thereby amplifying financial strain at the household level (27, 28). Prior qualitative research has documented caregiver strain in hematologic malignancies, including emotional distress and role overload (8, 13). The present findings suggest that caregiver labor should also be understood as an economic contribution that absorbs and redistributes financial toxicity within households. While participants described caregiving in terms of time, responsibility, and coordination, its characterization as a form of financial toxicity reflects an analytic interpretation based on how this labor substituted for paid services, displaced employment or required allocation of household resources. By normalizing caregiver competence and responsibility, the treatment preparation process effectively shifted financial and logistical work onto families, rendering this labor invisible within clinical decision-making.

A consistent thread across the data was participants' concern about burdening family members. Rather than centering their own hardship, patients often oriented to the impact of treatment on spouses, children, or extended family, downplaying personal distress through moral comparison or humor. This finding resonates with prior work on illness, aging, and relational responsibility, which shows that older adults may prioritize not imposing on others even when facing significant need (18). In the context of financial toxicity, such moral orientations may further suppress explicit expressions of distress, complicating efforts to identify patients and families in need of support.

These findings have important implications for how financial toxicity is conceptualized, identified, and addressed in cancer care. Screening approaches that rely primarily on direct questions about affordability or out-of-pocket costs may fail to capture meaningful burden, particularly during treatment preparation. Instead, financial toxicity may be more readily identified through attention to logistical strain, caregiver labor, and repeated negotiations around time, travel, and work. Integrating financial navigation earlier in the care trajectory, during treatment planning and prior to transplant initiation rather than after treatment initiation, may help mitigate cumulative burden and reduce reliance on informal caregiver labor.

This study has limitations. The analysis is based on secondary qualitative data collected as part of a formative evaluation at a single academic transplant center, which may limit transferability. Nonetheless, the longitudinal, ethnographic nature of the data provides rich insight into processes that are difficult to capture through survey-based approaches alone. By focusing on how financial toxicity is expressed indirectly and relationally, this study contributes to a more nuanced understanding of financial burden in cancer care, including many in later midlife or older adulthood preparing for intensive treatment. This study was conducted by a single researcher, which may raise concerns regarding interpretive bias. However, this approach is consistent with qualitative methodologies that prioritize depth of engagement and analytic coherence over team-based consensus. Steps were taken to support rigor, including sustained engagement with the dataset, systematic memoing, and attention to contrast cases, though alternative interpretations may be possible.

In conclusion, financial toxicity during ASCT preparation for multiple myeloma was not primarily articulated as concern about cost. Instead, it emerged through disruptions to work and time, the logistical demands of travel and scheduling, the expansion of unpaid caregiver labor, and persistent moral concern about burdening others. Recognizing these indirect expressions is critical for developing interventions and policies that address the full scope of financial toxicity in cancer care and for supporting patients and their families as they navigate complex treatment pathways.