Trajectory of Cancer Caregivers

WHO ARE THEY?

Cancer is a large group of diseases that begin when abnormal cells grow uncontrollably, invade nearby tissues, and may spread to other parts of the body (130). Beyond the medical aspects, cancer affects the overall health and well-being of the person, creating a wide range of needs—physical, emotional, and social—that must be addressed.

Caregivers of people with cancer provide substantial and critical unpaid care, ranging from emotional support and household management to complex medical tasks, often with little to no formal training and recognition (3, 38). Cancer’s sudden intrusion into one’s life and unpredictable course thrusts caregivers into demanding, complex roles with little warning—often requiring rapid adaptation, emotional resilience, and ongoing flexibility (1). Additionally, for many caregivers, supporting someone with cancer raises many important questions about different matters such as life, their life plans, end of life, grief, death in general and their own death, as well as spiritual questions and beliefs. This can be very challenging for them, in addition to having to take on many tasks to support the person they care for (131).

As more people survive cancer and receive care outside the hospital, more caregivers are needed—making it essential to understand who they are, what they need, and how to support them (7).

GENDER

Over half of cancer caregivers are women—most often spouses, daughters, or daughters-in-law—though male involvement is growing (1, 110). Female cancer caregivers typically report higher burden, poorer health, and greater anxiety and depression than male caregivers, along with more unmet needs and greater difficulty balancing caregiving with other responsibilities (16, 19, 48, 49). They are more inclined to feel exhaustion and fatigue compared to male caregivers (8).  Women often shoulder a disproportionate share of tasks while also juggling work, parenting or a marriage, leading to disrupted roles and heightened emotional distress (57). These disparities may stem from caregiving demands and the emotional weight of traditional gender roles (37). All the while, societal expectations indicate that women must remain stoic and selfless (57).

Male caregivers experience substantial strain too (5). Several interconnected reasons contribute to this: gender norms may discourage emotional expression and help-seeking, which can heighten depressive symptoms and perceived burden (16). Common unmet needs of male caregivers include addressing problems related to sex life, understanding the experience of the person with cancer, and receiving emotional support for themselves (145). Compared with women, men more frequently rely on avoidant or externalizing coping strategies (e.g., alcohol, smoking), which correlates with worse mental and physical outcomes (16).

AGE

The age of the caregiver influences their experience. Caregivers who are 75 years of age and older are more likely to spend more hours on caregiving activities (51). Retired older caregivers may have the capacity to devote significant time to caregiving; however, this is seldom how they imagined their later years (10). While some studies suggest that older caregivers cope very well and experience fewer financial hardships compared to younger groups, potentially due to accumulated life experience, other research indicates that they still face significant mental health challenges (51, 16). At the same time, many caregivers are themselves aging—particularly spousal caregivers—who must balance their own health challenges while providing care and support to their partner (127).

Younger to middle-aged caregivers (35–64 years old) are particularly vulnerable to negative health impacts because they often simultaneously balance employment, parenting, and caregiving (146). This triple load decreases time and energy to fulfill their responsibilities (146). Whereas older adults might face more physical limitations, younger caregivers are more at risk of psychological distress (16). Financial strain is also common, as these caregivers may face limited resources, vocational instability, childcare expenses, and have fewer savings, leaving little margin to absorb the costs of caregiving (10, 19). These responsibilities can interfere with key personal milestones such as career advancement. 

LOCALITY

For cancer caregivers, a rural or urban context can significantly shape their experiences, influencing access to care, financial strain, lifestyle disruptions, and available support networks (57). In rural settings, distance to hospitals often adds to an already heavy burden, with long commutes intensifying fatigue for patients and caregivers and creating barriers to timely care (13).  To mitigate these challenges, many rural caregivers make major life changes to accompany the care recipient—such as relocating closer to metropolitan cancer centers—to reduce travel time, lower costs, and access specialized care (58). This relocation can create ripple effects—disrupting rural home life, forcing caregivers to leave employment, reducing their capacity to manage domestic or farm responsibilities, and separating caregivers from their own support systems (58). Financial impacts are also greater: rural caregivers lose more work hours than urban caregivers due to the distance between their homes and care and service centers (59). They also incur higher out-of-pocket expenses for medications, transportation, and other care-related costs (58).

Access to specialized care, especially palliative services, is a key point of divergence. Urban settings offer more consistent hospital and home-based care, while rural caregivers often face long travel distances, limited home visit availability from professionals, and poorer care coordination (59). These disparities contribute to higher hospital death rates for rural patients and increased burden for their caregivers (58).

SOCIOECONOMIC SITUATION

For caregivers with lower socioeconomic status (SES), the weight of their responsibilities is especially heavy. Caregivers with lower levels of education and income are more likely to experience emotional distress and report poorer physical health outcomes (16, 56). One study found that caregivers without a college education had more difficulties navigating the healthcare system, understanding health-related information, and communicating with the healthcare team (10). Full-time employment combined with a lower educational background can predict greater anxiety and depression among caregivers (16).

SES is also linked to the intensity of caregiving. Caregivers with lower SES tend to spend more hours per day providing care (104). This increased time commitment may be due to a lack of resources to spend on formal support (144). However, caregivers with higher income and educational levels also experience considerable stress when attempting to balance demanding careers with caregiving responsibilities (16). Across all income levels, strong social support remains a key protective factor against caregiver strain (16). For individuals with lower incomes or socioeconomic status, social support plays an even more crucial role. This shows that social support plays a particularly important role in helping families with fewer financial resources to cope with the burden of caring for someone (84). 

BELONGING TO A MINORITY GROUP

Cancer caregivers belonging to a minority group often experience systemic exclusion and discrimination in healthcare settings, which might further exacerbate their burden and significantly shape the caregiving experience (53, 60, 61).

Underserved groups—including new immigrants, people of color, Indigenous peoples, and 2SLGBTQIA+ individuals—frequently encounter challenges that extend beyond the daily tasks of caregiving. From difficulties navigating healthcare systems to feeling dismissed or misunderstood by healthcare professionals, these caregivers often face an added layer of emotional and logistical strain (53).

Minority caregivers report more unmet needs when reintegrating into life after the person’s death, including challenges related to grief, employment, finances, and re-establishing social connections (52). Additionally, minority groups often experience delayed diagnoses and less engagement in routine cancer screening, leading to later-stage detection and, in turn, more intensive caregiving demands (1, 54). These disparities are compounded by systemic barriers such as racism, discrimination, and the lasting effects of colonialism, which limit access to timely, culturally appropriate healthcare (53).

• Caregivers of color are more likely to report poor communication with healthcare professionals and to feel that their race or ethnicity negatively influences the quality of care received (55). Also, Black and Hispanic caregivers, who often take on more intensive caregiving roles, spend more hours per week, and manage a broader range of tasks compared to White caregivers (53). This greater involvement is accompanied by heightened financial strain (55). Yet, paradoxically, some studies – primarily U.S.-based – report that Black caregivers experience lower emotional and physical burden, potentially due to strong social networks, cultural values around familial responsibility, and a greater sense of preparedness (53). Similarly, Hispanic caregivers have reported emotional well-being on par with or better than that of White caregivers. While these cultural and community strengths may offer some protection, they do not erase the structural inequities these caregivers face.
• 2SLGBTQIA+ caregivers report feeling worried about being excluded from medical decision-making or unrecognized as a caregiver due to the nature of their relationship with the person they care for or the lack of legal protections (60). Such discrimination can lead to worse health outcomes and increased feelings of loneliness (61). The experience of being dismissed, misgendered, or misunderstood by healthcare professionals can create a pervasive sense of fear and emotional strain (60). A recurring theme is the erasure of queer identity in care settings (61), whereby caregivers speak of “hiding one’s sexuality” or “taking a backseat from being 2SLGBTQIA+”.

• Indigenous caregivers face significant challenges in accessing care and services (156). While many agreements and accommodations with Indigenous peoples are made at the federal level, health care delivery is managed by the provinces (157). This division of responsibility often creates confusion and makes it difficult to implement federal commitments within provincially governed health systems.

ORGANIZATION AND ACCESS TO SERVICES

Cancer caregivers face a wide range of needs throughout their trajectory, yet access to services that meet those needs remains limited. Many caregivers take on their roles suddenly and with little preparation, which increases their burden and reduces their ability to support care receivers effectively (3, 29). Navigating the healthcare system can be overwhelming: caregivers frequently lack clear guidance and can struggle to find answers to their questions and the support they need (11). Most cancer care happens in an ambulatory clinic, which shifts complex medical tasks—symptom monitoring, medication management, infection vigilance, performing technical procedures, equipment handling—from clinic to home, turning caregivers into 24/7 coordinators, with minimal or no training (38, 7). Caregivers often act as intermediaries with healthcare providers; however, short clinical visits (typically 15–20 minutes) leave limited time to address caregivers’ questions and concerns (38). Poor care coordination and limited access to local specialists further increase the burden placed upon caregivers (76).

Access to services can be influenced by several factors (31, 53, 58, 59, 144), including:

• Membership in a minority group
• Locality
• Socioeconomic status
• Recognition of their role as a caregiver
• Information about available services
• Stage during which services are needed

RELATIONSHIP WITH THE CARE RECEIVER

Spouses and partners often serve as primary caregivers, particularly when they live with the person they care for (23, 24). Living together typically involves taking on a range of daily responsibilities—coordinating care, attending appointments, and managing symptoms. While these shared experiences can strengthen the bond between partners, they can also increase caregiver burden (1, 24).

Caregiving spouses frequently emphasize the heavy responsibility of supporting their partner through illness, even when motivated by a promise, such as during marriage: “For better or for worse, in sickness and in health” (5). Being a caregiver to a partner means that the caregiver will take on new roles in relation to their partner, which may redefine the relationship. For example, some caregivers report that sharing their life with someone with cancer and supporting them affects intimacy and sexuality, either through a decrease or complete cessation of sexual relations within the couple, creating feelings of anger, confusion, sadness, and loneliness in the majority of caregivers (135, 136, 137, 138, 139). Although the subject of sexuality remains taboo, these issues have a considerable impact on their personal and relational lives throughout their caregiving trajectory. In addition to a considerable decrease in sexual intercourse, many caregivers report that sexual relations within their couple are no longer spontaneous and generate anxiety at the time of performance, or that they hesitate before initiating sexual activity for fear of putting pressure on their partner or hurting them by touching sensitive areas (138). Some caregivers will ignore or neglect their own sexual needs in order to prioritize their partner's health and daily needs (138) (for more information, see the subsection on intimacy and sexuality needs in Resources and Support for caregivers).They may even feel guilty about wanting to talk about their sexual needs with their partner, even if their relationship is characterized by excellent communication:

However, caregiving relationships extend beyond partners. Parents, adult children, siblings, and even close friends or extended relatives may also step in (1, 19, 25). These caregivers, who often do not live with the care receiver, may follow different trajectories shaped by distance, logistical challenges, and competing roles. Non-co-residing caregivers may face emotional strain, such as guilt or worry about not being physically present and must navigate the difficulties of managing care at a distance (18). While they may not provide intensive daily care, they often coordinate transportation, support medical decision-making, and manage care remotely, which can still impose significant stress (1).

CAREGIVERS' HEALTH

Caregivers are increasingly described as “co-patients” because of the strong interdependence between their well-being and that of the person they care for (5, 10). The health of cancer caregivers both shapes and is shaped by the caregiving trajectory. On one hand, caregiver health is a contextual factor influencing how caregiving responsibilities are experienced and sustained; on the other hand, the physical and emotional demands of caregiving can themselves negatively affect caregiver health over time (102, 129).

Caregivers often experience parallel declines in physical and emotional health during treatment (5, 10), with their well-being mirroring patient symptoms and emotions—feeling well when the patient is doing well and distressed when the patient is unwell. In some cases, they even report worse quality of life and slower recovery than the care recipients themselves (10).  Prior illnesses (e.g., migraines) may worsen, whereas others develop new ones (e.g., hypertension, eczema) (13).

The role of caregiving can be more challenging when one is managing one's own health condition while providing care to someone with cancer. Many must manage chronic illnesses of their own (1). For example, older caregivers who frequently support aging spouses or relatives often face greater challenges due to physical limitations and higher rates of comorbidities (127). Caregivers of older adults are often older themselves and roughly 40% have comorbidities as well. Thus, they are more likely to report their health as fair to poor (3, 38).

Caregiver health is particularly critical during certain moments of the trajectory, such as before the death of the person. Better mental health at this stage is associated with a lower risk of post-bereavement depression, anxiety, and prolonged grief (48), whereas caregiver physical pain consistently predicts poor bereavement outcomes (69). Considering caregiver health throughout the trajectory is therefore essential, both to understand their capacity to provide care and to protect their long-term well-being.

CANCER TYPE, STAGE, FORM AND INTENSITY OF SUPPORT

Cancer caregivers are among the groups providing the highest levels of support, highlighting the intensity of their role (1). Those with multiple caregiving responsibilities face even greater stress, and when care is not rotated among family members, primary caregivers are more likely to feel overwhelmed (82).

Caregiver responsibilities may include:

• emotional support - offering companionship, listening to concerns, helping manage fear and uncertainty, attending appointments, being present through the highs and lows of the cancer (1). Providing emotional support is one of caregivers’ most frequent and essential tasks, yet it is also among the most demanding and the one they feel least prepared for (26). Caregivers often carry the emotional weight not just of the care receiver's distress, but their own as well (1).
• personal care - feeding, bathing, dressing, assisting with transfers between bed, chair, or toilet (1).
• medical care - administering medications and injections, managing catheters, wound care, colostomy bags (16). With changing demographics and fewer healthcare resources, caregivers are more and more involved in critical roles once performed by healthcare professionals (141, 142).
• household tasks - grocery shopping, cooking, cleaning, outdoor chores (23). When a person becomes ill, caregivers often step in to manage household duties once shared or handled by the person with cancer.
• financial management - household budgeting, paying bills, covering costs related to the illness, liaising with insurance providers and government agencies to secure financial assistance or benefits (1, 27)
• advocacy, decision-making, and care coordination tasks - seeking out resources, clarifying medical information, facilitating communication between the person with cancer and healthcare professionals, scheduling appointments, arranging or providing transportation to medical appointments, promoting healthy behaviours, and helping to manage the person's nutrition (1, 8, 16, 23). In performing these tasks, caregivers often act as knowledge brokers, obtaining information about the person's medical needs, interpreting and synthesizing it, and then sharing it to support and facilitate care (28).

The level of support required varies greatly depending on several factors, including the type of cancer. Brain cancer, for example, often leads to rapid neuro-behavioral changes and physical decline, requiring intensive caregiver involvement early on (44). Lung cancer similarly imposes a heavy caregiving burden due to its high symptom load and extensive physical and psychological effects (46). The support needed also depends on the cancer stage. People diagnosed at an earlier stage tend to have better treatment experiences, lower morbidity, and improved quality of life (47). In contrast, advanced cancer drastically disrupts the social lives of both people living with cancer and caregivers, making it difficult to maintain normal routines and intensifying feelings of social isolation (18). Caregivers of patients with advanced cancer often struggle to balance caregiving with other responsibilities, with the emotional toll of supporting someone who may already feel detached from life (18).

Certain types of cancer will also have a greater impact on the couple's relationship when the caregiver supports a partner (135, 137). For example, in the case of brain cancer or tumors, the person receiving care may experience memory loss and reduced cognitive abilities, making intimate moments or sexual activities simply impossible (138). Certain cancers, such as prostate and cervical cancer, can have direct consequences on bodily functions, such as the inability to have an erection or engage in penetrative sex, which may cause some caregivers to stop initiating any sexual activity so as not to upset their partner, even though their sexuality is no longer what it used to be (138). Finally, certain types of cancer, such as prostate, ovarian, and cervical cancer, can compromise the ability of PPA patients and their partners to have children “naturally”, which affects the caregiving trajectory and its impacts on caregivers (137, 138).

On the other hand, a lot of patients with cancer have at least one long-term health condition at the time of the diagnosis (143). Comorbidities can also influence the timing of a cancer diagnosis, either prompting earlier medical attention due to overlapping symptoms or delaying detection due to symptom misattribution (70). Co-morbidities not only complicate cancer treatment but also place greater demands on caregivers, who must manage a more complex role (1). As a result, this elevated caregiving intensity can worsen the caregiver’s health and well-being as well as impact their psychological state with distress, anxiety and depression, having links to caregivers of care receivers with comorbidities (1).

PRE-DIAGNOSIS

In the pre-diagnosis stage, individuals may experience potential cancer symptoms or other concerning signs and may be undergoing testing (62). The length of the pre-diagnosis stage varies for potential patients and caregivers. Some consult primary care professionals for months or years, while dismissal and misdiagnosis can occur (54). Studies suggest that people may tend not to suspect they have cancer, so caregivers often play a critical role in early detection by recognizing initial symptoms and noticing the person is "not being themselves" (10). They have to encourage the person to seek medical attention and thus help initiate the diagnostic process—contributing to more timely diagnosis and treatment (64).

Waiting for a definitive diagnosis is characterized by significant uncertainty and anxiety for both the care receiver and their caregivers (5, 42, 62, 63). This uncertainty can come from anticipation of the diagnosis itself, but for some it is amplified, for example, when a known family history of cancer increases the likelihood of a positive result (62). Caregivers frequently provide essential emotional support in this uncertain stage and often begin actively searching for information about potential symptoms or diagnoses to better support the care receiver, especially as information needs escalate (63). While patients may consult their family physician and specialists, they also rely on information from caregivers, friends, printed materials, and the internet, with caregivers often helping to evaluate the reliability of this information (11).

DIAGNOSIS

Even though for many caregivers, cancer caregiving trajectories actually begin during the pre-diagnosis phase, their caregiving trajectory “officially” starts once a cancer diagnosis is confirmed. Caregivers often find themselves "thrown into" a cancer life, with little warning or opportunity to prepare (25).

Caregivers at this stage navigate a landscape of uncertainty with little space to process emotionally and no forewarning or training for the multifaceted demands ahead (2, 42). Unlike chronic conditions that may emerge gradually, cancer symptoms often become apparent only weeks or months before diagnosis, resulting in a rapid and disorienting entry point into caregiving (66).

The diagnosis itself is typically experienced as a shock. It triggers psychological turmoil, leading to mental health decline. Caregivers may feel overwhelmed by the potential consequences of the illness (11). They can experience intense anxiety and distress equaling or exceeding that of the person they care for (1).  All the while, caregivers are providing emotional support to the care receiver (67). Some may try to hide their negative emotions to maintain a positive attitude for the person they care for (67), a strategy referred to as “protective buffering” (68).

This can, in turn, lead to emotional exhaustion and neglect of their own well-being (1).

The diagnosis and the accompanying uncertainty about the prognosis disrupt caregivers’ sense of control over time, forcing them to put future plans—holidays, career ambitions, and financial decisions—on hold (12).  As one caregiver expressed, “It is not about winning or losing the battle against cancer; it’s about learning to live with it” (12). Caregivers supporting a spouse with cancer also experience changes in their sexuality as soon as the diagnosis is announced. Even before treatment begins, a cancer diagnosis often leads to a decrease in sexual activity within a couple due to the anxiety that sets in:

How the diagnosis is communicated also shapes caregivers’ experiences. If clinicians convey hope for recovery when delivering the news, it can positively influence the caregiving trajectory, in contrast to a more somber, pessimistic tone (12).

Information-seeking is one of the prominent tasks caregivers take on after a diagnosis to try to better understand the illness, treatment options, and how to best support the patient (77). Caregivers frequently do not know where to turn to with the many questions that follow a diagnosis (11), and lack clear points of contact or reassurance during decision-making due to insufficient clinician support (11).

BEGINNING OF TREATMENT

Treatment often begins immediately after the diagnosis, leaving caregivers little space to emotionally process what is happening (42). As the person receiving the diagnosis undergoes treatment and requires increasing levels of care, the caregiving role becomes intensely demanding—often leaving caregivers feeling overwhelmed, unprepared, and emotionally depleted (25).  

This stage is associated with a range of psychological, physical, social, and financial impacts: 

• Psychological impacts: At the start of treatment, caregivers often worry about side effects, treatment effectiveness, and managing symptoms (14). Constant worry about prognosis, fear of death, fatigue, and the juggling of caregiving and work responsibilities contribute to high levels of anxiety, depression, and distress among caregivers (13, 16, 56). The emotional toll is amplified by their close involvement in managing care and witnessing the care recipient suffering firsthand (19, 24). Caregivers often describe the treatment stage of the trajectory as an “emotional roller coaster,” marked by feelings of guilt—such as pressuring the person they care for to follow treatment or witnessing the toll of side effects—and a profound sense of helplessness (11, 19).
• Physical impacts: Caregivers face substantial physical strain—including fatigue, sleep disturbances, and pain—that can deteriorate their health faster than that of non-caregivers, sometimes worsening chronic conditions (13, 16, 27). Health habits often decline, with less exercise, poor diet, and weakened immune function, particularly among middle-aged caregivers (13, 51, 71).
• Social impacts: As treatment becomes routine, caregivers often describe it as “taking over” their lives, eclipsing social roles and highlighting the all-consuming nature of the caregiving experience (15). Social isolation is common, as caregivers reduce participation in activities due to the care receiver’s side effects and the need to manage multiple roles—household tasks, employment, and caregiving (19). Many feel unseen or unacknowledged by friends and extended family who fail to grasp the depth of the caregiver's sacrifice (42).

• Relational impacts: The patient-caregiver relationship may also suffer (13, 37). Caregivers often face challenges within the relationship, including difficulty communicating with the person they care for about the illness and their own concerns (34). They may also struggle to cope with personality changes in the person during treatment or choose to hide their own feelings to protect them (13). When the care recipient is a spouse, the caregiving role can also impact the relationship (13, 37). Indeed, cancer and its treatments can lead to significant impacts on intimate and sexual relationships, sometimes leading to feelings of being "just acquaintances rather than life partners" (37). For example, treatments and surgeries related to breast cancer can redefine or impose new limits on intimacy and sexual relations between partners (138). Indeed, spouses of people with cancer say that certain parts of their partner's body have become “off limits” due to the pain and discomfort experienced by the person with cancer, which can have an impact on the spontaneity and fluidity of sexual relations:

Despite these difficulties, some caregivers report that the experience can lead to strengthened bonds and personal growth within their relationship with the person (15).

• Financial impacts: Caregivers bear direct costs (e.g., transportation, medications) and indirect losses from reduced work hours or job changes. Employed caregivers frequently forgo promotions, switch to part-time roles, or work night shifts to accommodate medical appointments, compounding financial and emotional strain (1, 8).

TREATMENT TYPE

During treatment, people facing a cancer diagnosis typically undergo radiation, chemotherapy, and/or surgery, while bone marrow transplantation is increasingly used for blood cancers. Other types of treatments exist (e.g. hormone therapy, immunotherapy, targeted therapy), the type of treatment depends on the type of cancer, the stage of cancer, the personal preferences and the age of the person (155). Regardless of treatment type, caregiving is constant and intense during this stage as caregivers are required to perform several tasks (19, 23).

Surgery

With advancements in surgical care leading to earlier hospital discharges, caregivers are taking on a greater proportion of post-operative care (75). Caregivers often feel pressured to leave the hospital before they believe the person they care for is ready, but they do not want to cause problems (49). As one caregiver reflected:

Once discharged, caregivers report monitoring the person they care for to ensure they follow discharge instructions and do not push themselves too quickly (49). Responsibilities include assisting the person with navigating recovery at home and determining whether symptoms are expected or require immediate attention. During the early recovery period, when the person’s physical function is limited, caregivers often help with activities of daily living and provide emotional support, helping the person cope with fear, frustration, or body image concerns, particularly after surgeries that involve disfigurement or loss of function (e.g., mastectomy, colostomy) (49).

Radiotherapy and chemotherapy

Both radiotherapy and chemotherapy heavily involve caregivers to organize follow-up appointments, manage transportation, coordinate schedules of regular visits and lab tests, communicate with the healthcare team, and ensure the person adheres to treatment regimens (45, 72). Caregivers frequently act as advocates and information seekers, striving to understand treatment effects and ensure timely responses to emerging concerns (1). They must also be prepared to respond to acute and sometimes unpredictable side effects like severe nausea and fever, which can force responsibilities to change rapidly (16, 45, 73). Caregivers also provide support with symptom relief strategies and encourage the person they care for to report issues promptly (23). As fatigue often accumulates over the course of radiotherapy and chemotherapy can leave the person “washed out,” caregivers may step in to assist with daily tasks such as hygiene, mobility (1, 11), meal preparation, and managing eating difficulties (73, 74). Emotionally, they serve as a consistent source of reassurance and comfort, helping the care receiver cope with the anxiety and isolation that can arise from the repetitive, often solitary nature of the treatment (73).

A distinguishing feature of radiotherapy is the daily nature of appointments (73). Caregivers often manage scheduling and transportation to and from appointments, prioritizing the care receiver's needs over their own schedule (73). On the other hand, chemotherapy can involve administering oral chemotherapy or medications through inserted catheters or feeding tubes and performing wound care at home (1, 45). Also, due to the person’s immunosuppressed state from treatment, caregivers must be attentive to prevent infections (42). Caregiving during chemotherapy is not only constant but also increases over time with the accumulated side effects (72). 

Allogenic bone marrow transplant (allo-BMT)

Allo-BMT is increasingly used as a curative treatment for patients with blood cancers (21). Caregivers of people undergoing BMT have critical roles in symptom monitoring, medication adherence, and care coordination (77, 78). Importantly, caregiver responsibilities begin well before the transplant itself. People with cancer must undergo painful diagnostic procedures and frequent medical appointments to assess transplant eligibility, where caregivers provide both logistical and emotional support (10). Once approved, they are admitted for conditioning regimens—typically involving several days of high-dose chemotherapy and/or radiation to eradicate diseased and healthy marrow cells—which leave them physically fragile and socially isolated, heightening their reliance on caregiver support (10). Following the BMT, the caregiving role intensifies. Caregivers administer medications and injections, transport patients to frequent follow-up visits, and maintain a clean, safe environment to protect against infection in the patient’s immunosuppressed state (10, 79). They also monitor for complications, which can arise immediately or long after transplant, ranging from respiratory and neurological issues to severe psychological and physical symptoms (10). Given these risks, patients often require round-the-clock caregiving for at least 100 days post-transplant, and sometimes much longer (10). During this demanding period, caregivers not only deliver medical and practical assistance but also provide vital emotional support—often described by patients as being their rock (79). Practical responsibilities extend beyond clinical care, encompassing daily household management, meal preparation, and shopping, which grow in importance as patients continue to struggle with fatigue and diminished physical functioning even a year after treatment (79). Beyond hands-on care, caregivers act as advocates and communicators, navigating interactions with multidisciplinary transplant teams, interpreting complex medical information, and facilitating decision-making. This breadth of responsibility often leaves caregivers feeling stretched beyond capacity. As one caregiver reflected:

END OF ACTIVE TREATMENTS

The shift after the end of active cancer treatments is often jarring for caregivers who, after devoting significant time, energy, and personal sacrifice during treatment, emerge with disruptions to multiple aspects of their lives (9).

Post-active treatment support and access to healthcare typically decline, creating a mismatch between care receiver needs and available resources—leaving caregivers at risk of prolonged burden and psychological distress. Many feel underprepared for the end of the treatment phase, struggling to meet the care receiver’s evolving recovery needs with limited guidance (9, 33, 38).

Lack of empathy and compassion from healthcare professionals during this transition compounds these challenges. Many caregivers report feeling dismissed, with limited support, vague reassurances (“everyone’s different”) and inadequate follow-up, which can contribute to distress, care plan nonadherence, and dissatisfaction with the healthcare system (76, 92). Barriers to follow-up care include poor care coordination and limited access to local specialists (34). Despite receiving written materials, most caregivers reported no formal end-of-treatment visit to support the transition (34).

CANCER RECURRENCE

Cancer recurrence is not simply a continuation of the previous experience but a distinct stage that may even be more difficult and discouraging for patients and their caregivers to face (125). It might mark a transition from curative treatment to palliative care, complicating the disease trajectory and heightening caregiving responsibilities (125). Others face the weight of knowing that cancer will be a lifelong presence, and the decision to restart treatment or prioritize quality of life and the relief of symptoms may be a difficult decision to make (125). Extended or renewed caregiving during recurrence is often unexpected and overwhelming (49). When cancer recurs, caregivers are often thrust back into a state of emotional turmoil and uncertainty, and families are forced once again to reorganize around the illness (128). For many, the recurrence is even more devastating than the initial diagnosis (128).

 This was largely due to difficult decisions about treatment options, severe treatment side-effects and the negative memories of previous treatment experiences coming to mind (128). For caregivers, recurrence often signals the collapse of hope, replaced by anxiety, insecurity about the future, and distrust in treatment (128). As a result, such caregivers frequently report a poorer quality of life than those supporting newly diagnosed patients (128). Unlike the initial diagnosis, which includes a clear treatment plan and the possibility of a cure, recurrence often heralds a shift in care goals, for example, from curative to palliative, focusing more on symptom management, quality of life, and prolonging survival (125).

Caregivers, having endured initial cancer stages, must re-evaluate their expectations and coping strategies amid a renewed sense of vulnerability and uncertainty (128). In fact, unexpectedly returning to the caregiving role due to recurrence may deplete the caregiver’s coping resources, leading to an increased risk for health problems (129). Feelings of shock, regret, frustration, guilt, and helplessness are common, especially when treatment is no longer effective (16). Long-term caregivers, in particular, exhibit increased depressive symptoms and may experience declines in their physical health (129). This emotional distress can arise from factors such as fear of the illness itself, lifestyle restrictions, conflicting priorities, financial issues, and witnessing the care receiver's suffering (19).

SURVIVORSHIP: ADAPTING TO A NEW REALITY

Cancer caregiving continues well beyond active treatment and may last for years or decades (2). Caregivers continue to play multifaceted and evolving roles as care receivers move from active treatment into long-term management and recovery. Caregivers are central to facilitating the survivor’s transition to a “new normal,” supporting recovery while maintaining vigilance for signs of recurrence (16). Caregivers assist survivors in adopting or maintaining healthy behaviours such as proper nutrition, physical activity, medication adherence, and attending follow-up appointments (76). They may continue to coordinate healthcare services and advocate for the survivor’s needs, especially when transitioning from oncology to primary care settings (94). 

Sometimes recovery is slower than what cancer survivors and caregivers would like, and both cancer survivors and caregivers learn to manage these expectations (76). With cancer increasingly resembling a chronic condition, survivors may experience lingering symptoms, functional impairments and late effects of treatments, which require sustained caregiver involvement (8, 86). Depending on the cancer and treatment, caregivers may continue to monitor and manage lingering side effects or adapt to new, unexpected ones—including those related to irreversible changes like tracheostomy, altered appearance, or difficulty swallowing (1, 76). Intimate relationships may also be affected in the long term (37). The fact that there is no longer any active treatment does not mean a return to the sexuality and intimacy that the couple enjoyed before the onset of cancer. Some caregivers mention that they and their partners have regained some sexual activity, although it is less frequent than before. On the other hand, other caregivers mention that the onset of cancer and their experience through this ordeal have profoundly changed their sex lives, requiring a lot of time and work before regaining desire and pleasure:  

Many caregivers enter survivorship expecting to “return to where we had left off, to normal life” (76), only to encounter a “reality of uncertainty” marked by unpredictable follow-ups, ongoing care responsibilities, and shifting emotional needs (19). As one caregiver put it:

Survivorship care varies widely, and caregivers face numerous barriers—fragmented care coordination, limited access to local specialists, transportation issues, and financial burdens (76). As follow-up from healthcare professionals decreases over time, caregivers are often left to manage complex needs with limited guidance (9), underscoring the enduring and underrecognized burden they face during survivorship (38). Those heavily burdened during treatment remain particularly vulnerable, with distress continuing for years (17, 65).

In addition to anxiety and depression, caregivers report worries and uncertainty about recovery trajectories, recurrence, and managing unpredictable symptoms (76). They may remain concerned about the possibility of late treatment side effects, secondary diseases caused by treatment (e.g., cardiovascular disease) or the development of new cancers (86). Fear of cancer recurrence is common, the worry or concern about the cancer coming back or progressing, affecting approximately 48% of caregivers, often at levels equal to or exceeding those of care receivers (88).  It remains high even when the person is in remission and can arise at any sign of a physical problem (89, 120). It is more prevalent among younger female caregivers, those with limited emotional support, and those caring for someone with greater severity or distress (90, 91).

END OF CAREGIVING AND POST-CAREGIVING PERIOD

The end of caregiving, rather than restoring normalcy, often marks the beginning of a new and emotionally complex adjustment period. This transition can occur for various reasons, such as the complete remission of the illness or the death of the person being cared for.

At this stage, caregivers often seek to process their own experience and make sense of the caregiving trajectory (89). Caregivers may find it challenging to transition out of their caregiving role, especially when their identity has become entwined with caregiving (9). After months or years of prioritizing the care receiver’s well-being, caregivers may begin to reinvest activities they once enjoyed and carve out time for personal renewal (120). Reconnecting with hobbies, friends, or family—such as sharing a meal or seeing a movie—can help restore a sense of normalcy, especially after relationships were strained or neglected during caregiving (120). Some caregivers feel isolated as the intensive support they once received fades (89). Because others may hesitate to reach out, caregivers may need to initiate rebuilding social ties.

The transition from caregiving to life beyond caregiving may involve reintegrating into the workplace (124), rebuilding social connections (120), or resuming self-care routines (120) that were set aside during the illness. Reestablishing interpersonal relationships can be challenging, as friends and family may have moved forward with their own lives (89). Additionally, caregivers may struggle to relate to people who have not experienced cancer firsthand or the loss of someone close (89).

REMISSION

The process of slowing down after an intense fight with cancer and a demanding caregiving experience can feel as if “you’ve lost purpose” (120). Although remission brings relief, the abrupt slowing down of responsibilities can feel disorienting. Many cancer caregivers report feeling unprepared for this transition, struggling to redefine their identity and purpose after months or years of intense involvement in the person’s care. What they once hoped for—a return to normalcy—can feel strange or even unsettling (120).

BEREAVEMENT

Post-caregiving can be even more challenging when it coincides with bereavement, this period of grief and mourning after the death of the care receiver (89). In 2025, 87,400 Canadians were expected to die of cancer, leaving behind their bereaved caregivers (113). Although grief is a natural response, it may take months or even years to adapt—not only to the loss of the care recipient, but also to the loss of shared dreams and the caregiver identity itself (118). Some bereaved cancer caregivers experience prolonged and intense grief, marked by deep yearning, difficulty accepting the loss, and ongoing social or functional impairments (115, 116). Alarmingly, up to 40% of bereaved cancer caregivers experience complicated grief at 6 months post-loss, compared to about 11% in the general bereaved population after natural deaths (115, 116). Up to a quarter continue to struggle with complicated grief 18 months post-loss (115). 

Bereaved caregivers commonly report higher levels of depressive symptoms than those caring for survivors in remission (48), and for some, these feelings persist long-term. Simultaneously, caregivers may continue to face repercussions of their caregiver’s role as financial uncertainty remains after having shouldered practical and administrative tasks such as funeral planning, legal paperwork, and managing finances or estates (119).

PALLIATIVE CARE

Some patients transition to palliative care (PC), which aims to relieve symptoms and enhance quality of life by addressing the physical, emotional, social, and spiritual needs of both care receivers and their caregivers (98). While often associated with end-of-life care, palliative care is a distinct and essential component of comprehensive cancer care. However, it faces persistent barriers. One major challenge is the widespread confusion between palliative care and hospice, with the latter more narrowly focused on the final stages of life. This misconception reinforces stigma and deters both care receivers and healthcare professionals from considering palliative care earlier in the disease trajectory (99). Compounding the issue, many healthcare professionals report uncertainty about when and how to initiate palliative care, reflecting a broader need for education and training on its core principles and benefits (99).

Palliative care often extends caregivers’ involvement, intensifying the emotional toll as the person’s condition declines (48). Caregivers of a person in palliative care face higher and more negative repercussions on mental and physical health and well-being than those in earlier stages of the trajectory (34):

• Caregivers tend to develop negative emotions like shock, disappointment, regret, frustration and guilt if treatment becomes ineffective and the death of the patient becomes a reality (100).
• This stage is also marked by the highest informal care costs, driven by increased caregiving hours and significant out-of-pocket expenses—such as specialized food for comfort, transportation, medications, and funeral-related preparations (8, 27).
• The demands of palliative care on caregiving add to the stress and shock already experienced during diagnosis, which can create or worsen psychological distress among caregivers (48, 102). As a result, caregivers often experience a decline in physical health and quality of life, sometimes more severe than those caring for care receivers at other stages of the cancer trajectory (27).
• Many caregivers grapple with the distress of witnessing suffering and confronting mortality, while also trying to shield the care receiver from their own fears (57). This stage is often marked by high levels of emotional exhaustion, anticipatory grief, and anxiety about the person’s decline (98). As one caregiver reflected, the worst part of the caregiving experience was to “watch someone I cared about fade away in front of my eyes” (57).
• Mental health risks are heightened. Palliative care caregivers are more likely to experience psychiatric disorders than in other stages of the trajectory, reflecting increased psychological vulnerability (101).

In addition to hands-on care during this stage, caregivers often serve as intermediaries between care receivers and healthcare professionals, coordinating communication and seeking information to guide care decisions (1). When people with cancer experience cognitive decline or communication difficulties, caregivers are frequently thrust into decision-making roles regarding both medical care and household matters (1). Advance care planning serves as an important buffer. Completing documents such as do-not-resuscitate (DNR) orders and having early conversations about the person’s wishes can help caregivers better prepare for bereavement (123). These interventions have also been shown to reduce caregivers’ feelings of regret (123).

HOME-BASED PALLIATIVE CARE

A growing trend toward earlier hospital discharges and limited access to hospice beds has led to an increase in home-based care for palliative and terminally ill patients (106). Further research has also indicated that the majority of people prefer to die at home (133). At-home palliative care presents a different set of challenges and opportunities. As care shifts from hospital to home, caregivers assume the bulk of daily responsibilities, including assisting with hygiene, administering medications and injections, managing symptoms such as nausea, breathlessness, seizures, or pain, and handling complex equipment like nebulizers (150). The impact of a person’s symptoms on caregivers can vary; for example, declines in emotional functioning and worsening dyspnea have been shown to significantly increase caregiver burden (100). They also take on household tasks—adapting meals to meet dietary needs, doing laundry, cleaning, and childcare—creating an unrelenting cycle of physical and emotional labour (150). Incontinence, which requires extensive washing and constant care, adds another layer of physical and emotional strain (150). One young caregiver caring for both parents described the endless routine of showering, cooking, cleaning, and caregiving as overwhelming:

Caregivers describe certain advantages to caring for the care receiver at home. For one, having a sense of normality within the oncology trajectory, often tainted by hospital stays, was a comforting change (106). The ability to sustain relationships with others, being readily available to the care receiver and having a greater sense of control over the situation were further benefits to at-home palliative care environments (106). 

Home care services do not always provide consistent care by the same nurse or staff member, which can affect the quality of care and potentially cause distress for both caregivers and care receivers (107). When the same professional is involved from the initial evaluation through to the patient’s death at home, caregivers often report a greater sense of ease. As one caregiver shared:

END-OF-LIFE CARE AND THE PERSON’S DEATH

During the final three months of the person’s life, caregivers report providing an average of 69.5 hours of care per week (103). Among those supporting hospice care receivers, this number rises dramatically—averaging between 105 and 127 hours per week—highlighting the extreme intensity of end-of-life caregiving (104). Balancing one’s own needs with those of the person being cared for, the impact on work activities and decision-making amidst uncertainty are important challenges faced by caregivers at this stage (102).

Caregivers providing end-of-life care strive to offer the patient any support that may increase comfort, sometimes at considerable personal cost (27). In this stage, caregivers often act as advocates to ensure that patients die in their preferred place of care (154). At this stage, caregivers play a vital role in preserving the care receiver’s sense of dignity and meaning (105). This is especially important because the care receiver’s loss of dignity has been linked to increased distress, demoralization, and even a desire for hastened death (105). A better quality of death—marked by effective pain management, dignity, and alignment with the person’s values—can improve caregiver satisfaction with end-of-life care (105, 116).

The location of death matters: when care receivers die in their preferred setting, caregivers are more likely to report a sense of peace (57). While the majority of patients with cancer receive hospice or palliative care at home, a significant number do so in hospital or specialized facilities, where patients often pass away. In these institutional settings, caregivers may act as intermediaries between the patient and healthcare professionals, getting help for the patient’s needs, such as in cases of constipation, trouble breathing and other symptom management (120). When patients face cognitive decline or communication difficulties, caregivers are frequently thrust into decision-making roles regarding both medical treatment and broader life decisions, all while coping with emotional exhaustion, anticipatory grief, and anxiety about the patient’s decline (114). Caregivers of people who died in hospital palliative care units had fewer depressive symptoms, less anger and less complicated grief than those in other hospital units, suggesting a preference for less aggressive interventions near death (116).

The quality of the person’s end-of-life experience, advance care planning, social support, caregiver health prior to the loss of the care recipient, and coping strategies are all key protective factors that can influence caregivers’ adjustment during this period (69, 123).

COMMUNICATION AND PARTNERSHIP WITH HEALTHCARE PROFESSIONALS

Strong communication and partnership with healthcare professionals are associated with reduced cancer caregiver burden and better outcomes (39). This allows for clear and personalized information, advice, and reassurance coming directly from healthcare professionals (44). However, caregivers often face communication gaps and challenges that hamper them in their role, such as a lack of personalized information and detailed explanations. Indeed, caregivers often feel there is a lack of interaction with medical professionals and that they rarely inquire about caregivers’ well-being (16). Caregivers are often overlooked by the healthcare team, for example, in clinical discussions, which makes them feel invisible, overwhelmed and alone while having to navigate a complex system (31). Frustration grows when they feel dismissed, unheard, or excluded from decision-making. This lack of recognition discourages them from asking questions, hindering the development of a collaborative care partnership (41).

Communication with the clinical team often serves as a protective buffer against the emotional and physical demands of caregiving, linked to higher self-efficacy, resilience, and lower burden, anxiety, and depression (20, 32). There is a strong call for healthcare systems to formally acknowledge and integrate caregivers into care plans, moving towards a family-centred or dyadic approach that considers both the care receiver and caregiver as a unit of care (1). Caregivers need opportunities to ask questions and discuss their concerns directly with staff and want to be "heard" while advocating for the care receiver without being perceived as overly anxious (25, 37).

When caregivers' needs are addressed through compassionate communication, personalized support, and collaborative partnerships with healthcare professionals, they feel more empowered and better equipped to care for both the person with cancer and themselves (62).

RECOGNITION OF CAREGIVERS

During their caregiving trajectory, many cancer caregivers feel unacknowledged by their circles and the healthcare professionals. They often express feelings similar to:

Caregivers frequently assume their role as a given, not as an explicit choice, often as an extension of familial or marital ties (5), for example, the marital commitment to assist the person “in sickness and in health” (46). While approaching caregiving in this lens may strengthen caregivers’ resilience, it also may contribute to its “invisibility”, dismissing it as an expected marital responsibility rather than recognizing it as a specific and demanding role (5). Whether caring for a child, spouse, or aging parent, the transition into caregiving is deeply disruptive—redefining identities and altering previously stable life roles overnight (1).

 One caregiver described:

When becoming a caregiver, many caregivers report confusion about identifying with their new role:

Recognition in healthcare settings can be especially challenging. They are often described as a “hidden workforce” whose contributions are not fully acknowledged, and they express a desire to be recognized for their efforts (1, 11). Short clinical visits (typically 15–20 minutes) often leave little opportunity to address caregivers’ roles and concerns with the healthcare team (38). Many caregivers feel unseen or helpless despite being central to the care process (11). Caregivers who are not asked about their needs or included in care planning report higher emotional stress and lower quality of life (153). Too often, caregivers’ recognition is reduced to peripheral tasks such as driving patients to appointments, when in reality they are performing complex medical, emotional, and practical roles that directly affect patients’ outcomes. Proactive screening by healthcare professionals for distress and unmet needs is recommended to identify those at highest risk and connect them with appropriate resources (1). Furthermore, routine assessments of caregiver needs and referrals to tailored services, including self-management tools, can reduce burden and promote well-being (31, 86).

RESOURCES AND SUPPORT FOR CAREGIVERS

Caregivers need strong, available, responsive, inclusive, and easy-to-use support to navigate the crucial stages of their caregiving trajectory. Strengthening networks, both formal and informal, is essential to improve their resilience, mental health, and quality of life, and reduce the pressure they feel (16, 36, 37). Adequate support can improve caregivers' confidence or self-efficacy in managing care, and reduce their stress, consistently linked to quality of life (1).

PRACTICAL SUPPORT

Based on research on other categories of caregivers (158, 159, 160, 161, 162), offering quality support for the care receiver may be one of the best ways of assisting cancer caregivers, mainly because it lightens their load. Providing varied services and resources such as respite services, home care assistance, transportation services or counselling and emotional support for the assisted person could help ease the burden on caregivers, who no longer must bear these responsibilities alone.

INFORMATION

Meeting caregivers’ informational needs, especially around diagnosis, treatment plans, available services and the care receiver’s rights, is crucial to supporting caregivers in their caregiving tasks and decision-making process (11, 31). Clear and accessible information prevents caregivers from having to search for answers on their own, thus reducing their overall burden (11, 31).

In outpatient settings, caregivers are expected to assume complex tasks—processing medical information, performing technical tasks, and communicating with healthcare providers—often with little or no training (33). Information and training on medical tasks, such as managing feeding tubes or wound care, are crucial for improving caregivers’ confidence (49). Psychoeducational interventions and emerging digital health tools can help address caregiver needs, offering them more structured and accessible forms of support (16, 35).

SUPPORT FROM FAMILY AND FRIENDS

Social support from friends and other family members predicts a reduced caregiver burden and better physical and mental health (21), can strengthen caregiver resilience (84), and can mitigate potential caregiver isolation. Indeed, the demands of caring for someone with cancer often profoundly disrupt social life. Many caregivers withdraw from leisure activities, social events, and relationships because this role demands much of their time and emotional energy (18). Some struggle to discuss the disease, as conversations are often met with discomfort or incomprehension by family and friends (13, 18). Constant disruptions in their plans, postponed appointments, cancelled outings, and missed milestones can leave caregivers feeling disconnected from their usual networks and lead to social isolation (8, 19, 20).

While the level of support received from family and friends is important, perceptions of its quality may differ from one caregiver to the next (21). Over time, caregivers might develop a more negative perception of the support provided to them, with less empathy, affection, and encouragement (21). Despite this, some caregivers find that their relationships deepen, that their family ties strengthen (13, 18). Taking on caregiving responsibilities can shift relational dynamics in ways that foster connection, meaning, and purpose even in an otherwise challenging time (13, 18).

EMOTIONAL SUPPORT

Compared to people with cancer, cancer caregivers are less likely to seek emotional support and rely more often on acceptance as a coping strategy (85). Throughout the cancer trajectory, caregivers often work to maintain a positive emotional environment for both themselves and the person they care for (12). One caregiver said:

In this context, peer support networks, both in-person and online, offer a safe space grounded in shared experience, providing comfort, emotional reinforcement and practical advice that help caregivers feel less isolated, as well as an outlet to manage their fears and emotions (20, 34, 16). Cancer helplines are another valuable resource, frequently accessed by caregivers seeking guidance or simply someone to talk to (24). Emotional support is most strongly associated with caregiver well-being, likely because it helps caregivers feel less isolated and provides an outlet for processing fears and emotions (20, 34).

Professional support is also crucial. Psychologists, social workers, and other healthcare professionals can provide structured emotional support and guidance. They can also teach coping strategies, which are important at several points throughout the caregiving trajectory.

SUPPORT FOR SEXUAL AND INTIMACY NEEDS

Several caregivers supporting a spouse or partner with cancer report experiencing significant impacts on their sexuality and intimacy. The cancer experience within a couple requires major adaptation and often disrupts its balance. In oncology, sexuality is frequently downplayed; patients are often simply advised to use lubricants. However, the difficulties that caregivers encounter in their intimate and sexual lives are broad, complex, and go far beyond the partner’s physical ability to engage in sexual activity. They may include fears of causing pain, difficulties communicating about sexual issues, or a considerable decrease in libido due to the burden and many demands associated with the caregiving role (138, 151).

Many caregivers find their sexual lives reconfigured and adopt various forms of physical intimacy, such as individual or mutual masturbation, manual stimulation, oral sex, massage, the use of vibrators, as well as cuddling and caressing (138, 140). These practices—often perceived as “alternative” compared to traditional, heteronormative sexual norms centred on penetration—gradually become “normal” and more fully integrated into the couple’s relationship:

The ability to reconfigure sexuality within a couple facing cancer is directly linked to healthy communication and a positive relational climate. Many caregivers mention that “making the effort” to communicate is enriching, both for their sexual life and for the couple’s relationship as a whole (138).

To mitigate the impacts of caregiving on this aspect of life, it is essential for practitioners and professionals to address sexuality openly and to create space for discussing related taboos. It is important to allow caregivers to express their fears, anxieties, desires, and concerns during interventions (152).