Financial hardship in cancer family caregivers: a scoping review

Abstract

Background

Family caregivers of adults diagnosed with cancer usually face significant financial hardship due to employment disruptions and the cost of cancer-related expenses. This leads to physical, emotional, and psychological burden on them. However, despite this important contribution, family caregivers are rarely recognized as major stakeholders in palliative and supportive care during the caregiving trajectory.

Purpose

To address these gaps and inform palliative care practice, policy, and future research, we conducted a scoping review to synthesize and critically evaluate the current state of the science on how financial hardship influences decision-making regarding coping strategies and sources of support among family caregivers.

Methods

Guided by the Arksey and O’Malley scoping review framework, EMBASE, CINAHL, and PubMed were searched for English language articles published between January 2015 and May 2025 using the keywords: “financial distress,” AND “family caregiver,” AND “cancer.”

Results

Of 816 articles screened, 28 met the eligibility criteria. Caregivers reported financial hardships due to cancer-related income loss, employment disruptions, and out-of-pocket costs, which contributed to psychosocial and emotional burden. Across the studies, most financial, psychosocial, and emotional outcomes were self-reported. Contributions from family and friends, community organizations, and insurance systems were the sources of support for family caregivers. Caregivers employed a range of coping strategies (e.g., borrowing from family/friends, forgoing leisure and medical treatments, and sale of possessions) to manage financial hardships. Most U.S. participants (>50%) were White/Caucasian, with minimal representation of caregivers identifying with racial/ethnic minority groups.

Conclusion

Financial hardships were common among family caregivers, which were linked to worse psychosocial and physical health outcomes. Findings highlight the prevalence of financial hardships among cancer caregivers. In clinical practice, clinicians may consider comprehensive screening for financial hardships and the timely introduction of cost conversations for patients. However, few articles focused on the experiences of caregivers from racial and ethnic minority groups, highlighting a critical gap and need for more inclusive research.

Introduction

A cancer diagnosis permeates every aspect of patients' and their families’ lives, spanning financial, physical, psychosocial, and spiritual domains, which are core domains of comprehensive holistic palliative care [1]. Financial hardship is a form of social suffering that contributes to psychological distress, symptom burden, and diminished quality of life for both patients and their families, which are core targets of palliative care interventions [2, 3]. In other words, financial hardship is not just a peripheral to serious illness care, but rather a core palliative care concern that burdens family caregivers. Family caregivers of patients with advanced cancer experience considerable financial hardships, which include material, psychological, and behavioral effects [4, 5]. Financial hardship is a much broader concept, encompassing material financial burden (Out-of-pocket costs, lost income from reduced work hours, or job loss), subjective financial distress (psychological effects), and behavioral modifications (coping strategies) from high out-of-pocket costs [4]. In this review, financial hardship is defined as the multidimensional burden related to cancer and caregiving costs, including material challenges such as out-of-pocket expenses and lost income, psychological distress related to financial strain, and behavioral responses such as delaying care, borrowing money, or cutting back on basic needs [6]. Financial hardships may arise from employment disruptions, loss of income, medical expenses, and healthcare costs related to both the adult living with cancer and their family caregiver [7–9].

Nearly three million Americans serve as unpaid caregivers for adults dealing with cancer [10]. Moreover, around 18 million Americans are surviving cancer, a figure anticipated to rise to 22.2 million by 2030 [11]. The value of unpaid family caregiving is difficult to quantify because it includes emotional support, time, and cancer-related financial costs [7]. Family caregivers are family members and friends who form part of an integral palliative care unit that provides unpaid services and support to their loved ones living with cancer and other healthcare-related conditions. These tasks often include scheduling and attending appointments, managing medications, assisting with activities of daily living, and covering out-of-pocket expenses and the indirect costs, such as transportation to treatment centers, that the entire family shoulders [12]. While their contributions are invaluable, caregiving sometimes puts them at risk for poor psychosocial and physical health outcomes due to caregiving stress and neglect of their own health, including those due to financial constraints, health outcomes due to chronic stress, competing demands, and neglect of their own health needs due to financial constraints [12–14]. Because palliative care recognizes the family as the unit of care, caregiver financial hardship influences decision-making, patient outcomes, end-of-life experiences, and overall care quality [15].

Despite estimates that nearly half of patients with cancer and their families experience substantial financial hardships, it is rarely assessed or addressed by their healthcare providers in oncology and palliative care settings [7, 16, 17]. Similarly, the subjective experiences of financial hardships, including anxiety, depression, and their impact on quality of life [18], a key palliative care outcome, are often overlooked [7, 8]. Of note, existing research has largely focused on quantifying the cost burden on patients without considering the family caregivers who provide unpaid care [12, 19, 20]. Moreover, recent studies of financial hardships among cancer family caregivers, particularly those conducted in the US, lacked racial, ethnic, and socioeconomic diversity [1], limiting access, which is central to equitable palliative delivery. To address these gaps in the future, and inform palliative care practice and policy, we conducted a scoping review to synthesize, critically evaluate, and summarize the current state of the science on the experiences of financial hardship among family caregivers of adults with cancer.

Methods

This scoping review follows the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines [21], the Arksey and O’Malley framework [22], and the Altice framework for financial hardship [6]. The Arksey and O’Malley’s methodological framework includes: 1) identifying the research question, 2) searching for relevant studies, 3 selecting studies, 4) charting the data, and 5) collating, summarizing, and reporting the results. This framework was chosen because it contributes to the rigor and transparency of the scoping review methodology and helps to enhance the reliability of the findings [22, 23]. Given the scope of this review and the use of multiple guidelines and frameworks, the study did not follow an additional prepared review protocol. This scoping review utilized previously published, publicly available literature and did not involve primary data collection from participants. All included studies reported obtaining appropriate ethics approval and participant consent.

Identifying the research question

The following questions guided this scoping review: 1) What are the experiences of financial hardships among family caregivers of adults with cancer?’2) How does financial hardship impact the lives of family caregivers in the caregiving trajectory? 3) How do family caregivers cope with financial hardship? and 4) What formal and informal support are described by family caregivers in response to financial hardship during cancer caregiving?

Search strategy

The authors developed a search strategy with the help of an academic librarian. Three databases: EMBASE, CINAHL, and PubMed were searched from January 2015 to May 2025 due to growing interest in oncology and palliative care fields and an increase in reported financial hardships (see Fig. 1). The mesh terms used in the search included the following: “Financial toxicity” OR “financial distress” OR” financial burden” OR “Economic burden” AND “Informal caregivers” OR “Spousal caregivers” or “Informal carers” AND “Neoplasms” or “Cancer” OR “Leukemia”. The related terms and specific keywords used in the search are shown in Table 1.

Fig. 1.

PRISMA flow chart of the search and study selection

Table 1.

Search terms used for various databases

Databases	Keywords used in the search	Results
CINAHL	(MH "Debt, Financial + " OR MH "Financial Stress" OR MH "Health Care Costs + " OR XB(“financial distress” OR “financial burden*” OR “financial toxicity” OR “financial challenge*” OR “financial strain*” OR “financial hardship*” OR "economic burden*" OR "economic cost*" OR "economic outcome*" OR "economic well-being" OR "healthcare cost*" OR "health care cost*" OR "cost* of care" OR "out of pocket" OR debt* OR loan* OR "labor force exit" OR "early retirement*")) AND (MH "Caregivers" OR XB(“family caregiver*” OR “spouse caregiver*” OR “family carer*” OR “spouse carer*” OR “informal caregiver*” OR “informal carer*”)) AND (MH "Neoplasms + " OR XB(neoplasm* OR cancer*)	211
EMBASE	('financial stress'/exp OR 'health care cost'/exp OR 'medical debt'/exp OR 'financial distress':ti,ab OR 'financial burden*':ti,ab OR 'financial toxicity':ti,ab OR 'financial challenge*':ti,ab OR 'financial strain*':ti,ab OR 'financial hardship*':ti,ab OR 'economic burden*':ti,ab OR 'economic cost*':ti,ab OR 'economic outcome*':ti,ab OR 'economic well-being' OR 'healthcare cost*':ti,ab OR 'health care cost*':ti,ab OR 'cost* of care':ti,ab OR 'out of pocket':ti,ab OR debt*:ti,ab OR loan*:ti,ab OR 'labor force exit':ti,ab OR 'early retirement*':ti,ab) AND ('informal caregiver'/exp OR 'family caregiver*':ti,ab OR 'spouse caregiver*':ti,ab OR 'family carer*':ti,ab OR 'spouse carer*':ti,ab OR 'informal caregiver*':ti,ab OR 'informal carer*':ti,ab) AND ('neoplasm'/exp OR neoplasm*:ti,ab OR cancer*:ti,ab) AND [01-01-2015]/SD NOT [24-05-2025]/SD	270
PubMed	("Financial Stress"[Mesh] OR "Health Care Costs"[Mesh] OR "Medical Debt"[Mesh] OR “financial distress”[tiab] OR “financial burden*”[tiab] OR “financial toxicity”[tiab] OR “financial challenge*”[tiab] OR “financial strain*”[tiab] OR “financial hardship*”[tiab] OR "economic burden*"[tiab] OR "economic cost*"[tiab] OR "economic outcome*"[tiab] OR "economic well-being"[tiab] OR "healthcare cost*"[tiab] OR "health care cost*"[tiab] OR "cost* of care"[tiab] OR "out of pocket"[tiab] OR debt*[tiab] OR loan*[tiab] OR "labor force exit"[tiab] OR "early retirement*"[tiab]) AND ("Caregivers"[Mesh] OR “family caregiver*”[tiab] OR “spouse caregiver*”[tiab] OR “family carer*”[tiab] OR “spouse carer*”[tiab] OR “informal caregiver*”[tiab] OR “informal carer*”[tiab]) AND ("Neoplasms"[Mesh] OR neoplasm*[tiab] OR cancer*[tiab]) AND (2015/1/1:2025/05/23[pdat])	335

Search terms used were optimized by the research librarian in various databases

Study selection

Studies were included if they met the following inclusion criteria: 1) peer-reviewed published studies presenting original empirical data; 2) in the English language; 3) published from 2015 to May 2025; and 4) report specifically on financial hardship among family caregivers of individuals with cancer. Studies were excluded if they met the following exclusion criteria: 1) conference abstracts, editorial and opinion papers, books and book chapters, theses/dissertations, protocol papers, and reviews; 2) focused on paid caregivers; or 3) addressed the financial hardship of pediatric family caregivers (patients ≤ 18 years). To gain a broad understanding of the financial hardship literature, the search was not restricted to a particular type (i.e., solid or liquid tumor) or stage of cancer (early vs. late stage). The initial search yielded 816 articles; 246 duplicates were removed, including 195 identified by Covidence and 51 removed manually. Of these, 570 titles and abstracts were screened by two reviewers (EN, CO), and 205 met the criteria for full text review. Full-text review was subsequently performed independently by the same reviewers (EN, CO). Disagreements were resolved by consensus. Of the 205 articles selected for full-text review, 177 were excluded. A total of 28 articles met the eligibility criteria. The PRISMA flow chart is illustrated in Fig. 1.

Charting the data

To ensure consistency in data extraction and reporting, an extraction table was developed (see Table 2). This table captured key study information, including research design and major findings, as well as population details such as country of origin and sample size. A second table was employed to categorize and organize the primary findings related to financial hardship (see Table 3). Covidence software was used to facilitate the extraction process.

Table 2.

Overview of included studies (n = 28)

Citation (Country)	Purpose	Sample Size	Study Design	Key Findings and Conclusions
Abbasnezhad et a l. (2015) Iran [13]	To investigate the cancer care burden on primary family caregivers of hematologic cancer patients, in terms of physical, psychological, social, spiritual, and financial aspects	151 family caregivers	Descriptive quantitative study	The study revealed that primary family caregivers faced considerable financial distress, and many reported symptoms of anxiety and depression. Their physical quality of life was assessed as moderate. In contrast, the participants’ spiritual well-being and level of social support were deemed satisfactory
Adejoh et al. (2021) Nigeria, Uganda and Zimbabwe [24]	To explore the roles, experiences, and support needs of informal caregivers of patients with advanced cancer in their interactions with palliative care services in Nigeria, Uganda, and Zimbabwe	48 family caregivers	Qualitative study	The findings showed that informal caregivers are central to palliative care in sub-Saharan Africa, serving as both a major partner and a silent pillar in patient care. They carried most of the medical, physical, and emotional responsibilities for patients, often at considerable personal cost, including sacrifices to their health, finances, and employment
Ariyo et al. (2025) Nigeria [25]	To explore the underlying factors contributing to the financial and emotional burden among informal caregivers of elderly patients at University College Hospital, Ibadan	412 informal caregivers	cross-sectional, mixed-methods study	Caregivers’ emotional burden was significantly associated with household income. Financial hardships were primarily driven by out-of-pocket expenses, expensive medications and tests, and the nature and duration of the patient’s illness
Balfe et al. (2017) Ireland [26]	To examine the impact of treatment-related commuting on caregivers of patients with head and neck cancer	31 family caregivers	Qualitative study	Findings showed that commuting is a major but often overlooked burden that negatively affects the quality of life of head and neck cancer caregivers. The authors noted that this burden may worsen as specialized care becomes centralized and recommended supports such as free or subsidized parking, travel assistance, and affordable family accommodations
Balfe et al. (2016) Ireland [17]	To explore the overall financial impact of head and neck cancer on caregivers, and to describe the factors that mitigate this impact	31 family caregivers	Qualitative study	Caregivers of head and neck cancer patients often endure significant financial and emotional distress. Granting them and their families access to welfare benefits can help alleviate this burden
Bradley et al. (2023) USA [27]	To assess whether employed spousal caregivers of adults with cancer experience greater financial and mental health burden than comparable caregivers of spouses with other health conditions	103 family caregivers	longitudinal cohort study	About 35% of cancer caregivers stopped working, and 30% reported that they increased household debt. Financial hardship was most severe among lower-income households, with low-income cancer caregivers more likely than matched noncancer caregivers to report reduced income, greater debt, and work cessation. Although mental health findings were mixed, financial strain was clearly more pronounced among low-income cancer caregivers
de Vries et al. (2021) Columbia [14]	To evaluate the existence of financial burden caused by cancer on the caregiving families of terminally ill patients	176 family caregivers	Descriptive Quantitative study	One in four families (25%) delayed educational or other major plans, and about 10–11% reported moving to a different home or postponing medical care
DiGiacomo eta al. (2020) Australia [28]	To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease	3047 family caregivers	Cross-sectional	More than 13% of carers experienced financial hardship, with causes extending beyond just household income
Elgadi et al. (2022) Sudan [29]	This study aims to estimate the perceived economic burden in the following aspects: financial strain, inability to make ends meet, not enough money for necessities, and economic adjustment	143 family caregivers	Cross-sectional	Most caregivers could cover everyday essentials but had difficulty affording medical expenses and leisure activities. Overall, the results point to a moderate financial burden among cancer caregivers. Hardship was more likely for those who were unmarried, students, male, better educated, or had lower incomes. Additionally, financial strain was tied to a rise in maladaptive coping behaviors
Ferrell et al. (2019) USA [30]	The purpose of this study was to test a palliative care support intervention for oncology family caregivers	240 family caregivers	Randomized Controlled Trial	After the PC intervention, most caregivers experienced reduced financial stress and enhanced quality of life
Ferrell et al. (2018) USA [31] Hastert et al. (2024) USA [10]	To gain a deeper understanding of the quality-of-life needs of family caregivers who experience financial hardship due to the costs of cancer care and treatment To explore the associations between several types of caregiving costs (i.e., related to medications, medical bills, and logistics) and the prevalence of financial burden reported by caregivers of African American cancer survivors	20 families Caregivers 964 family caregivers	Qualitative study Correlational study	Family caregivers faced financial strain that undermined their spiritual well-being, emotional stability, and psychological health Approximately two-thirds of caregivers (64%) reported incurring costs related to caregiving. Logistical expenses were the most common (58%), followed by medications (35%) and medical bills (17%). Thirty-eight percent of caregivers experienced severe financial hardship, and those who had any caregiving costs faced a 52% higher prevalence of high hardship. Informal caregivers, much like cancer survivors themselves, bear significant cancer-related financial burdens
Hastert et al. (2020) USA [8]	To describe the prevalence of several forms of work impacts, financial burden, and psychosocial outcomes reported by caregivers of African American cancer survivors	199 family caregivers	Correlational study	Most caregivers (73.8%) adjusted their employment schedules. Sixty percent altered their work schedule, hours, duties, or job status; 15.3% took at least one month off to provide care; and 38% reported difficulty juggling work and caregiving responsibilities. Struggles with balancing employment and caregiving are common among those caring for African American cancer survivors and are linked to symptoms of depression and anxiety. Providing targeted support for caregivers facing work-related challenges may help improve their psychosocial well-being
Johnson et al. (2024) [32]	To estimate the replacement cost of informal care provided by family and friends in the last year of life, and to explore how these costs varied by carer and decedent characteristics	997 family caregivers	Cross-sectional survey	Higher caregiving costs were linked to longer and more intensive care, older caregiver age, home death with co-residence, non-cancer death, and greater deprivation. Higher costs for other support were also associated with female caregivers and not using other care services. These findings highlight a growing challenge for universal care coverage as ageing populations reduce the availability of informal caregivers
Kavanaugh et al.(2015) [33]	To identify factors associated with economic burden among spousal caregivers of patients with lung cancer	138 family caregivers	Cross-sectional survey	Economic burden was higher among caregivers with less education, more children at home, and spouses with more symptoms; younger age affected burden indirectly through patient symptoms. The findings highlight the need for healthcare providers to address psychosocial factors in families affected by lung cancer and to manage patient symptoms early to help protect the family’s economic well-being
Mathew et al. (2024) [34]	To examine financial toxicity and coping strategies among caregivers of patients with cancer	403 family caregivers	Prospective cross-sectional study	About 64% of caregivers reported moderate to severe financial toxicity. Common coping strategies included using savings, borrowing money, changing spending patterns, seeking financial help from the cancer center, and taking gold loans. The authors suggest that screening patients and primary caregivers with a modified COST tool may help families identify severe financial toxicity and guide timely support
Meehan et al. (2020) USA [35]	To assess the out-of-pocket expenses and time commitment of caregivers of hematopoietic stem cell transplantation recipients within the first 4 weeks after discharge from the hospital	49 family caregivers	Longitudinal study	The findings underscored an urgent need to bolster caregiver support, given the heavy out-of-pocket expenses and substantial time demands. Caregivers reported fatigue and emotional strain driven by both direct treatment costs and other related expenses
Metin et al. (2023) Turkey [36]	To assess the effect of financial well-being on caregiver quality of life in multiple myeloma	113 family caregivers	Cross-sectional	Findings show worsening financial well-being was associated with poorer caregiver quality of life, which may in turn affect the care provided to patients with multiple myeloma. The study recommends routine financial assessment by nurses, financial guidance from patient navigators, billing specialists, and social workers, and the development of policies to better support patients and caregivers financially
Nightingale et al. (2022) USA [37]	This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care	24 family caregivers	Cross-sectional qualitative study	Seven age-specific themes emerged, bolstering the model’s framework: (1) the direct and indirect costs of cancer; (2) the role of socioeconomic status in financial strain; (3) caregivers’ urge to protect adolescents and young adults from money-related stress; (4) tactics for managing cancer-related expenses; (5) anxieties about AYAs’ future financial security; (6) pursuing and utilizing financial aid; and (7) navigating the healthcare system. The study also found that the COVID-19 pandemic amplified financial pressures for some caregivers
Ohno et al. (2020) Japan [38]	To quantify the humanistic and economic burden among caregivers of patients with cancer in Japan and compare it with that of caregivers of patients with other conditions and non-caregivers	251 caregivers of cancer patients	Cross-sectional	Cancer caregivers experienced more stress-related comorbidities, poorer mental health-related quality of life, greater impairment in work productivity and daily activities, and higher indirect costs compared to caregivers of other conditions. These findings highlight the need for healthcare planning in Japan to better recognize and address the significant burden on cancer caregivers
Salikhanov et al. (2023) Kazakhstan [39]	To evaluate the cost-effectiveness of hospice-based versus cancer center–based palliative care for patients with terminal cancer and examine the related burden on family caregivers	182 family caregivers	Cross-sectional	The findings suggest that hospice-based palliative care was a more cost-effective option than cancer center–based palliative care, offering better patient quality of life, lower caregiver burden, and lower out-of-pocket and overall costs. In resource-limited settings such as Kazakhstan, hospice-based care may provide a more practical and supportive model of care
Su et al. (2022) Singapore [40]	To examine whether health shocks in patients with advanced cancer are associated with caregivers’ employment over time, and to identify characteristics of caregivers who remain employed despite these shocks	270 family caregivers	Longitudinal cohort study	As patients’ health worsened, caregivers were more likely to reduce work or experience disruptions in employment over time, and vulnerable caregivers were especially likely to face household income loss. These findings suggest that caregiving can significantly affect employment throughout the caregiving journey and highlight the need for ongoing, targeted support to help vulnerable caregivers stay at work
Tanriverdi et al. (2016) Turkey [41]	To explore the personal, social, and economic burden, as well as the prevalence of depression, among primary caregivers of patients receiving chemotherapy, with particular attention to whether patients were aware of their cancer diagnosis	968 family caregivers	Cross-sectional survey	Caregivers of patients with advanced or metastatic cancer experienced substantial social and personal disruptions. About 36% reported financial loss, 18% lost employment, and another 18% sold property or livestock to cover treatment costs
Tur-Sinai et al. (2022) Israel [42]	To identify the areas of out-of-pocket (OOP) spending in the last half-year of the lives of cancer patients and examine the extent of that spending	491 family caregivers	Cross-sectional study	84% of cancer patients and their relatives incurred OOP expenses during the last half-year of the patient’s life. The average levels of expenditure were US$ 5800 on medicines, $8000 on private caregivers, and $2800 on private nurses. The probability of a financial burden due to OOP was higher among those unable to remain alone, the incapacitated, and those without insurance, and lower among those with above-average income, those with better education, and patients who died at home
Van. H et al. (2025) USA [16]	To describe multiple dimensions of economic costs for caregivers of persons with advanced cancer and short-term changes in costs	198 family caregivers	Longitudinal study	About one in three caregivers went into debt because of their caregiving duties, and 24% reported facing financial hardship. Most caregivers of patients with advanced‐stage cancer incurred both direct treatment costs and additional indirect expenses
Viola et al. (2023) USA [43]	To examine associations between financial hardship and suicidal ideation among bereaved informal caregivers of cancer patients	153 family caregivers	Longitudinal prospective study	Financial hardship after the loss remained strongly linked to suicidal thoughts. In a cohort of cancer caregivers tracked from active caregiving into bereavement, those facing economic strain post-loss were more likely to experience suicidal ideation
Yu et al. (2015) [44]	To compare the societal costs of end-of-life care between home death and hospital death within a home-based palliative care program	186 caregivers	Prospective cohort	Findings indicated no difference in total societal cost between home and hospital death, but home death shifted more burden to families through higher unpaid caregiver time and higher outpatient service costs. Families bore more than half of the total costs
Zhang et al. (2024) China [45]	To assess the level of financial toxicity of informal caregivers of colorectal cancer patients and explore the related key influencing factors	236 family caregivers	Cross-sectional study	Caregivers of colorectal cancer often experienced considerable financial toxicity, but this strain can be alleviated when their stress levels are lowered and they receive robust social support. In clinical practice, it’s important to thoroughly assess caregivers’ financial burden and introduce tailored measures such as improving communication channels and proactively sharing information about treatment costs to curb financial toxicity and enhance the overall quality of colorectal cancer care

Table 3 .

Categories of Findings and their Sources

Themes (Description of Categories)	Sources
Psychological Response (Subjective Experiences of Financial Distress) (Anxiety, depression, social isolation, hopelessness, and emotional trauma due to financial hardship)	[14, 17, 24–27, 31, 33, 36–38, 41, 44]
Material Impact of Financial Hardship (Objective Financial Burden) (Direct cost of treatment procedures and cancer medications, and indirect costs such as transportation, food, etc.) Behavioral Modifications (Coping Strategies) (Resorting to spirituality, cutting non-essential expenses, reducing working hours, and forgoing vacations	[8, 13, 14, 16, 17, 26, 27, 29–31, 33, 34, 36–41, 43] [13, 14, 24, 29, 31, 33, 34, 36, 37, 41]
Support Systems for Family Caregivers (Family, friends, community, insurance systems)	[17, 24, 26, 28–31, 34, 37, 45, 46]
Thematic Categories and Sources

Collating and summarizing, and reporting the results

After the data were abstracted and organized into summary tables, the experiences of financial hardship by family caregivers were categorized into themes. Further, the findings were presented in a narrative summary organized around the four research questions that guided the scoping review [22]. Article types were categorized through an iterative process, where authors refined categories based on the summary table to ensure they adequately captured the findings of each study.

Results

An overview of the findings of the review

Twenty-eight articles were identified, including 23 quantitative and 5 qualitative studies. Of the quantitative studies, 7 were descriptive [8, 13, 14, 17, 31, 37, 46], 14 cross-sectional [24–26, 28, 29, 32–34, 36, 38, 39, 41, 42, 45], 6 longitudinal [16, 17, 27, 35, 40, 43], and 1 randomized controlled trial [30]. The studies represented a total of 17,224 caregivers, with sample sizes ranging from 24 to 7,997 individuals. Participants were caregivers aged 18 to 74 years, primarily from the United States (n = 11), Ireland (n = 2), Israel (n = 1), Sudan (n = 1), Australia (n = 1), Colombia (n = 1), Nigeria (n = 2), Turkey (n = 2), Japan (n = 1), Canada (n = 1), England (n = 1), India (n = 1), China (n = 1) and one study with participants from Uganda, Nigeria and Zimbabwe. Represented caregiver races/ethnicities included American Indian/Alaskan Native, Asian, Black/African American, Caucasian/White, Hispanic/Latino, and other/multiracial. Studies that were conducted outside the US did not provide a racial/ethnic breakdown. Across the studies, US-based samples were predominantly White, with racial and ethnic minority cancer caregivers comprising approximately 5% to 30% of participants in several studies. (see Table 4). The overview of the articles included is summarized in Table 2.

Table 4.

Racial distribution of included studies conducted in the US

Studies	Race	Proportion
Bradley et al. (2023) [27]	White	68 (66%)
	Hispanic	10(9.7%)
	African Americans	21(20.4%)
	Others	4.0(3.9%)
Ferrell et al. (2019) [30]	Whites	117(49%)
	Latino	17(31.3%)
	African Americans	13(5.4%)
	Others	34(14.2%)
Ferrell et al. (2018) [31]	Whites	11(53%)
	Latinos	6.0(30%)
	African Americans	2.0(10%)
	Others	1.0(5%)
Hastert et al. (2024) [10]	Whites	-
	Latino	-
	African Americans	964(100%)
	Others	-
Hastert et al. (2020) [8]	Whites	-
	Latino	-
	African Americans	202(100%)
	Others	-
Kavanaugh et al. (2015) [33]	Whites	Mainly of European descent
	Latino	-
	African Americans	-
	Others	-
Nightingale et al. (2022) [37]	Whites	18(75%)
	Latinos	4(16.7%)
	African American	4(16.7%)
	Others	1.0(4.2%)
Van Houtven et al. (2025) [16]	Whites	-
	Latino	-
	African Americans	82(41%)
	Others	117(59%)

Family caregivers' experiences of financial hardship

Guided by the Altice framework for financial hardship, the experiences of family caregivers were categorized into psychological response (subjective financial distress), material hardships (objective financial burden), and behavioral coping (modifications from high out-of-pocket costs) [4, 5] See Table 3.

Psychological response to financial hardships (subjective experiences of financial distress)

Thirteen of the 28 articles reported on the subjective experience of financial distress among caregivers [14, 17, 24–27, 31, 33, 36–38, 41, 44]. Across these studies, subjective distress was conceptualized as the anxiety, depression, isolation, hopelessness, and other emotional and psychological discomfort experienced by caregivers due to the effects of cancer-related expenses [47]. Some of these experiences were tied to the uncertainty about their ability to cover the high cost of treatments and reduced incomes from lost hours in response to family caregiving [14, 17, 25, 31, 37]. These studies show that caregiving places a heavy emotional and psychological strain on family caregivers. In addition to the practical demands of providing care, many caregivers experience ongoing stress, stigma, and other emotional challenges that negatively affect their overall well-being.

Material impact of financial hardship (objective financial burden)

Nineteen of the included articles examined the material, economic, and physical impacts of financial hardships on family caregivers [8, 13, 14, 16, 17, 26, 27, 29–31, 33, 34, 36–41, 43]. Ten of the 19 articles reported on the material effects of financial hardship on family caregivers [14, 29–31, 33, 34, 36, 41–44]. Family caregivers often took on debt, sold assets, and reduced vacations and leisure activities due to financial hardship from both direct and indirect costs of cancer. Across the studies, the objective financial burden was primarily attributed to the direct cost of cancer care, with cancer medications, treatments, and procedures identified as the most burdensome expenses. For example, the average six-month expenditure for cancer medications in Israel, a country with universal healthcare, was USD 5,800 [42]. Other costs, often identified as indirect cost burdens [8, 25–27, 34, 36–38], included transportation to oncology centers, food during travel, and maintaining dual households due to temporary relocation during treatments, and employment disruptions. Factors that mostly influenced indirect costs were treatment durations and proximity to oncology centers [8, 25, 37].

Surprisingly, financial hardships were also reported in countries with universal health care systems, like China, Colombia, Ireland, and Israel [14, 17, 42, 45]. Factors that exacerbated financial hardships included limited baseline wealth or savings, lack of accessible support systems, and prolonged cancer treatment and distance to treatment centers [8, 25, 35, 37, 46]. In addition, financial hardships also disrupted caregivers’ personal lives, family functioning, and social roles. Many reduced work hours or left their jobs, leading to income loss and increased financial pressure due to increasing caregiving demand. These cumulative effects of financial hardships contributed to social isolation, strained family dynamics, and a sense of disconnection and reduced quality of life [8, 13, 17, 36, 37]. Other negative physical consequences of caregiving included lack of sleep, physical exhaustion, migraine, and chronic fatigue due to caregiving-related stress [14, 29–31, 38, 43].

While some studies assessed objective financial burden with validated instruments, others measured a similar construct with questionnaires that were not validated. Objective financial burden was assessed across some studies using validated instruments, including the Financial Distress/Financial Well-being Scale (n = 2), Household Expenditure Survey (HES) scale (n = 1), Comprehensive Scores for financial Toxicity based on the patient-reported outcome measures (COST-PROM; n = 2), Economic Hardship Questionnaire (EHQ; n = 1), Covinsky Family Impact Survey (n = 3), and City of Hope Quality of Life tool (n = 1) [13, 14, 28–30, 33, 34, 36, 43, 45]. Non-validated tools in the form of questionnaires were used to measure or assess the objective financial burden in the rest of the quantitative studies [8, 16, 27, 32, 35, 38–42, 44, 46]. However, the lack of uniformity in measuring financial hardships leads to conceptual ambiguity, which may defeat the development of tailored financial interventions for family caregivers in palliative and oncology care.

Behavioral modifications (coping strategies)

Ten of the 28 articles reported on the coping strategies and response behaviors adopted by family caregivers to manage financial hardships [13, 14, 24, 29, 31, 33, 34, 36, 37, 41]. Coping strategies were minimally described, with two studies reporting that caregivers turned to their faith to cope, by drawing strength from a higher power/God in response to the challenging experience [13, 31]. Moreover, some caregivers often reallocated household budgets, cut non-essential expenses to accommodate medical costs, and reduced working hours in response to demand from caregiving [13, 14, 24, 29, 31, 34, 36, 37]. Others sold family possessions, postponed medical treatments or education for themselves or other family members, took loans, and changed their eating habits due to financial hardships [13, 14, 29, 31, 33, 34, 36, 37, 41]. However, a small subset of studies explored how caregivers modify behaviors in response to financial hardships or economic burden, suggesting that behavioral pathways remain largely unexplored among family caregivers in palliative and oncology care.

Support systems for family caregivers

Eleven of the 28 articles reported on available support systems for family caregivers to manage financial hardship [17, 24, 26, 28–31, 34, 37, 45, 46]. Financial support was often available from organizations, family and friends, community organizations (e.g., school, employer, church), and event-based fundraisers, in-person or through social media [24, 26, 41]. Additionally, insurance companies, hospitals, and cancer centers frequently assigned case workers/navigators to help cover treatment costs, lodging, travel expenses, and food for family caregivers and patients [34]. While emotional and psychological support was available to some caregivers from friends and family members [45], some reported feeling isolated, unsupported, and rejected by their families, friends, and the healthcare system across the cancer treatment trajectory [31].

Discussion

To our knowledge, this scoping review is the first to comprehensively assess current literature on financial hardships among family caregivers of adults with cancer using the Altice framework, situating material burden, subjective distress, and behavioral responses within a unified conceptual model. Across the studies that were included, findings show that financial hardships experienced were multidimensional among family caregivers, which were intertwined with psychological distress, employment disruption, coping behaviors, and support systems. These domains form the core principles of palliative care, which emphasize the relief of suffering among family caregivers during serious illnesses.

Subjective experiences of financial hardships

Subjective experiences of financial distress among family caregivers included psychological and emotional outcomes, including depression with suicidal tendencies, anxiety, and post-traumatic distress. The findings imply that financial hardship is not merely an economic burden but a major psychological stressor among family caregivers. Consistent with prior research [48], employment loss and income disruption were associated with diminished self-esteem, despair, and social isolation. Additionally, reduced opportunities for social interaction and relinquishing of roles once held outside their caregiving duties may contribute to depression and suicidal ideation among caregivers [48]. These psychosocial symptoms may be due to uncertainty about the high cost of treatment. Moreover, the anticipatory grief due to the declining state of health and the impending death of a loved one may account for emotional turmoil and a state of hopelessness among family caregivers. Furthermore, family caregivers become physically exhausted from caregiving activities, as well as from their work schedules, especially if they are employed. We therefore suggest screening caregivers for psychological distress, financial hardship, and suicidal ideation during the caregiving trajectory in palliative care.

Experiences of objective financial burden

Regarding material hardships, family caregivers reported experiencing a high objective financial burden in the form of the direct and indirect costs of cancer care. This includes high cancer medication and treatment procedure costs, high insurance premiums and co-pays, and difficulty in affording daily necessities like food and utilities. Often, financial burden led to financial decisions (e.g., selling family possessions) to defray cancer-related costs. These findings are consistent with international literature documenting financial hardships among caregivers across multiple healthcare systems [49–51]. Financial hardship was most pronounced in the studies based in the United States, where the lack of universal healthcare coverage and high out-of-pocket costs create substantial economic vulnerability. For example, an average cancer medication ranged from USD 180 to USD 2,600 per month [52]. Moreover, insurance status, underinsurance, and socioeconomic factors, including race and ethnicity, appear to influence access to screening, early diagnosis, and high-quality care [53]. However, across these studies, insufficient attention was paid to structural determinants, including insurance policies, employment protections, socioeconomic inequities, and racialized disparities. These upstream factors shape caregivers' vulnerability to financial hardships before cancer diagnosis. Yet, most studies examined financial hardship as an individual or household problem, overlooking the structural forces that influence costs, access, and support. Without attending to these determinants, interventions risk focusing solely on individual burden rather than addressing root causes or contributing causes. From a palliative care perspective, these findings highlight financial hardship as a structural determinant of suffering and inequity.

This may suggest that inadequate insurance coverage may contribute to financial hardship for some adults with cancer and, in turn, their family caregivers [54]. For example, research has found that patients enrolled in Medicaid or without any insurance are significantly more likely to receive an advanced-stage cancer diagnosis than those covered by private plans [54]. This may put further economic pressure on their family caregivers. Ensuring individuals have health insurance with sufficient coverage is vital for accessing appropriate cancer screenings, obtaining accurate diagnoses, and receiving high-quality care. Moving forward, a more qualitative approach with a more diverse population should be conducted to gather different types of data from family caregivers to help inform policy and financial hardship interventions within oncology and palliative care settings. Given reports of financial burden across healthcare systems, governments may consider prioritizing reducing healthcare expenditures, especially cancer treatments, to alleviate financial strain on patients and their family caregivers. For example, we suggest that the governments may subsidize cancer treatments to drastically reduce the out-of-pocket payments for citizens.

Employment disruption emerged as a central driver of financial hardship across studies. Family caregivers experienced disrupted working hours or quit their jobs in response to caregiving, leading to financial hardship. This was consistent with prior studies where caregiving demands led to reduced household income due to job loss [55]. The need to reduce work hours is not surprising because cancer caregiving is demanding and exhaustive, with caregivers reporting an average of 32.9 h of caregiving each day [56]. Further, some caregivers reported fatigue and burnout due to the combination of work and caregiving duties, which may be physically exhausting. Given that loss of income seems to be a key component leading to cancer caregiver financial hardships, future efforts should focus on labor policies and regulations, such as flexible work arrangements, caregiver leave protections, and income stabilization for family caregivers. This may help improve patient palliative care outcomes.

Coping strategies

Different coping strategies and response behaviors were employed by family caregivers to manage financial hardships. For example, caregivers postponed their own medical treatments, sold family possessions, changed their shopping and eating habits to save money, delayed or forewent vacations, and drew strength from a higher power/God. Some of these strategies were potentially maladaptive, such as delaying personal medical care, while others involved emotion-focused or spiritually grounded coping. This aligns with the review of similar studies, which reported that caregivers employed maladaptive coping behaviors to deal with financial hardships [57], while others resorted to spirituality to find meaning and peace to improve mental health outcomes [58]. The findings also indicated that different coping strategies family caregivers adopted to deal with financial hardships may be due to a combination of personal, contextual, and cultural factors [59, 60]. Some caregivers cope with stress differently based on personal and psychological characteristics, past experiences, and resilience [59, 60]. For example, some family caregivers adopt problem-focused coping, such as seeking financial help, while others rely on emotion-focused coping, like denial, prayer, and social support, to deal with financial hardships [61]. This also suggests that family caregivers’ ability to cope with financial hardship is shaped by the availability of social support networks, such as family, friends, support groups, and community organizations. Therefore, caregivers with strong support systems are likely to deal with financial hardships more effectively. Further, cultural norms and religious values often shape how caregivers deal with financial hardship [58]. For example, some may rely heavily on faith-based coping, while others may turn to extended family or community for help. In palliative care, understanding these contextual factors is essential for delivering culturally responsive, family-centered intervention. Therefore, we suggest the need for tailored interventions that offer caregivers emotional support, refer them to appropriate resources, and teach them healthy coping strategies to effectively manage financial hardships and other spill-over effects that may arise during caregiving.

Available support systems for family caregivers of adults with cancer

In terms of available support systems, most caregivers received emotional and financial support from family, friends, and community-based organizations. This finding is comparable to studies that concluded that a robust social support system was associated with reduced financial hardships, anxiety, and depression among family caregivers of patients with colorectal cancers [62, 63]. Similarly, a systematic review on informal caregivers of patients with lung cancer concluded that inadequate social support was linked to subjective financial distress [62]. Family caregivers receiving social support from relatives, friends, and community organisations probably suggest that social support provided by the state to deal with serious illness is not adequate. Moreover, family caregivers may resort to family and friends, as well as private organisations, which might be due to socio-economic factors such as low-income levels and high cost of insurance premiums. This means that social support is very essential for cancer family caregivers during the caregiving trajectory. This support may be emotional, psychological, or financial, and it can play an important role in buffering the effects of caregiving. Therefore, connecting caregivers to supportive resources may help them better manage financial hardship, particularly those with limited social support. Given these protective effects, researchers and clinicians should develop strategies and interventions in oncology and palliative care settings aimed at identifying caregivers lacking robust social networks and referring them to appropriate support services.

Implications for clinical practice

In clinical practice, clinicians such as doctors, nurses, and medical social workers may consider incorporating routine, universal screening for financial hardship and comprehensive palliative assessments alongside symptom evaluation, caregiver burden screening, and psychosocial assessment. This may be achieved by using a validated tool such as the Comprehensive Score for Financial Toxicity (COST) to identify high-risk individuals [64, 65]. In addition, screening should address material, behavioral, and psychological aspects of financial hardships to reflect their full impact on both patients and their family caregivers in palliative care settings [4, 65, 66].

Moreover, oncologists and other healthcare professionals in the palliative care team should initiate timely and routine discussions about the cost and value of cancer treatment [67]. Although nearly half of patients with financial hardship report cost conversations, clinician engagement remains insufficient to meet the needs of both patients and their caregivers [68]. Therefore, clinicians need to routinely address out-of-pocket costs and available resources, including concerns about medication affordability, non-treatment expenses, and long-term financial stability for patients and caregivers [68, 69]. Costs of care conversations may also be part of ongoing goals of care initiated by either the oncology team or palliative care team.

Similarly, financial navigation programs may be introduced to help patients and their family caregivers. These programs help alleviate financial hardship by providing financial coaching, insurance support, and assistance with non-medical expenses like housing and transportation [70]. These financial navigators can proactively help family caregivers apply for benefits, negotiate medical bills, access emergency funds, and identify community resources. Moreso, palliative care clearly recognizes the family as a unit of care. Therefore, introducing financial screening and navigation programs aligns with family-centered care, which is the core philosophy of palliative care. This may reduce complicated grief, prolonged distress, and post-bereavement financial crises. In addition, incorporating financial hardship interventions within palliative care acknowledges it as a modifiable source of suffering, which helps to advance equity in serious illness care.

Implications for research

While we identified numerous cross-sectional and correlational studies describing financial hardship among caregivers of people with cancer, few studies assessed financial hardships over time. Longitudinal studies, particularly those using an explanatory or exploratory sequential approach, across the serious illness trajectory, such as diagnosis of advanced disease through end-of-life and bereavement, should be conducted. This would provide a more in-depth and holistic understanding of caregiver experiences of financial hardships across the cancer trajectory. Once this phenomenon is better understood, the development and testing of programs aimed at addressing financial hardship among caregivers will be a critical next step [46].

Strengths and limitations

There are several limitations in this review. First, articles needed to be written in the English language. This may have left out relevant articles in other languages, limiting the generalizability of this review to caregivers from non-English-speaking countries. Second, only articles between 2015 and May 2025 were included. Other relevant studies may have been conducted before this period. Third, most included studies in the US were conducted among White/Caucasian caregivers, and few focused on caregivers identifying with racially and/or ethnically diverse groups. This may limit the generalizability of findings to individuals who are Black/African American or Hispanic. The limited racial and ethnic diversity of the included samples represents an important gap in the literature and may constrain the understanding of financial hardship in cancer caregiving among more diverse caregiver populations. More research is needed to address this gap. However, studies conducted outside the US did not provide racial and ethnic breakdowns, probably because they are not racially and ethnically diverse as compared to the United States. Another key limitation in this study is the lack of nationally representative data. Most included studies used localized or convenience samples, which limits the generalizability of findings. Future research should use nationally representative data sets to better capture the scope and disparities of financial hardship in cancer caregiving.

Similarly, heterogeneity of measurement approaches used across studies is a major limitation in this review. Although studies used various tools and self-reported indicators to measure financial hardship, few appeared to be specifically designed or validated for family caregivers. This makes it difficult to compare findings across studies and highlights the need for measurement approaches that better reflect caregivers’ experiences. Therefore, there is a need for more consistent and well-validated instruments to examine financial hardship among family caregivers of adults with cancer in future research. This would improve the reliability, validity, and comparability of evidence across caregiver populations. Moreover, including studies from multiple countries increased the heterogeneity of the review, as differences in healthcare systems, payer structures, and socioeconomic contexts may shape how family caregivers experience and report financial hardship. Future research should examine financial hardship in specific healthcare and socioeconomic settings and compare experiences across different contexts. Further, the Altice framework offered a useful guide for this review. It was originally developed for patients and may not fully capture caregiver-specific dimensions of financial hardship, particularly the relational and family dynamics that shape the caregiving experience. Also, this review has several methodological limitations, including the absence of a priori protocol and the lack of formal quality appraisal. These factors may have affected study selection, reduced transparency, and limited assessment of the strength of the evidence.

Finally, the review excluded studies focused on caregivers of children with cancer, who may have different experiences with financial hardships. Future reviews and studies should explore the unique experiences of financial hardship of these parents.

Conclusion

To the best of our knowledge, this scoping review is the first to synthesize literature related to financial hardships guided by the Altice framework among only family caregivers of adults with cancer. Within a palliative care context, these findings are particularly important, as financial hardship represents a significant dimension of social and psychological suffering across the serious illness trajectory. Across the studies, family caregivers experienced financial hardships due to the high cost of treatments, job loss, and disruption of working hours, which led to poor psychosocial and physical health outcomes. Furthermore, they leveraged several coping strategies to deal with the experiences of financial hardships, including borrowing from family and friends, the sale of family properties, and sometimes forgoing their leisure and medical treatments. These short-term financial coping strategies may worsen in the long-term and increase emotional and physical distress, potentially affecting care decisions and quality of life.

Therefore, health systems should routinely screen caregivers for financial hardship within cancer and palliative care, assessing it alongside other supportive care needs at key illness transitions to enable timely support and coordinated resources. Additional research is needed on financial hardships to better understand these experiences from the perspectives of caregivers identifying with other minority racial/ethnic groups. A more qualitative or mixed methods approach will help bring a much deeper context to understanding the burden of caregivers in caregiving, as existing studies are largely quantitative. Finally, expanding caregiver-focused financial hardship research and integrating financial screening into palliative care will be critical to promote equitable, family-centered care and improve outcomes for patients and caregivers.

Authors’ contributions

EN: Conceptualization, data visualization, formal analysis, writing–original draft, and writing–review and editing. CO: Abstract and full text review. ACB: Writing–review and editing, supervision. JNO: Conceptualization; writing–review and editing, supervision. RDW: Conceptualization, supervision, writing-review, and editing.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Data availability

All data analyzed in this study were retrieved from publicly available published articles. The sources of all included studies are listed in the reference section, and the extracted study characteristics are in **Table** 2.

Declarations

Ethics and approval and consent to participate

Our manuscript is a scoping review of previously published literature and did not involve primary data from human participants, thus formal institutional ethics approval and participant consent were not required.

Consent for publication

This is a review article, so consent to publish is not applicable in this section.

Competing interests

The authors declare no competing interests.