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Home > Living Well > Health Library > Informal Caregivers in Cancer: Roles, Burden, and Support (PDQ®): Supportive care - Health Professional Information [NCI]
This information is produced and provided by the National Cancer Institute (NCI). The information in this topic may have changed since it was written. For the most current information, contact the National Cancer Institute via the Internet web site at http://cancer.gov or call 1-800-4-CANCER.
Informal caregiving is broadly defined as services provided by an unpaid person, such as helping with personal needs and household chores, managing a person's finances, arranging for outside services, or visiting regularly.[1,2] An informal caregiver is usually a relative or friend who may or may not live in the same household as the person with cancer who requires care.
Informal caregiving provides significant practical and economic benefits. This summary describes the experiences of informal caregivers of individuals with cancer, enumerates the risk factors for caregiver burden (which is often associated with negative psychological consequences), and evaluates evidence-based interventions designed to reduce the burden of informal caregiving. The goal of the summary is to provide the oncology clinician with both a deeper appreciation of the importance of informal caregivers, and the information necessary to recognize burdened caregivers and effectively intervene.
Who Are Informal Caregivers and What Roles Do They Play?
In 2016, the National Alliance for Caregiving reported an analysis of the survey responses of 111 caregivers who self-identified as providing care to a person with cancer. The respondents were part of a much larger study that identified a representative sample of adult caregivers who provided unpaid care to an adult relative or friend in the 12 months preceding the time of the survey.
The following findings provide a snapshot of informal caregivers of people with cancer and the challenges they face:
Caregiving is also relational.[4,5] In addition, there are important implications for the interconnectedness between patient and caregiver that the oncology clinician should be aware of, including the following:
In no instance, however, did patient and caregiver identify the same key challenge. Clinicians are thus advised to assess caregiver needs independent of patient needs.
The Psychological Consequences of Caregiving
The psychological consequences of caregiving vary widely. Some caregivers report positive outcomes such as post-traumatic growth/benefit finding. But a minority of caregivers experience anxiety, depression, or post-traumatic stress disorder (PTSD). The following paragraphs summarize the salient literature.
Benefit finding: Results of several qualitative studies (interviews or narrative questionnaires) of caregivers of either adult cancer survivors [11,12] or childhood cancer survivors [13,14] revealed common themes on the positive aspects of caregiving:
These common themes are more quantitatively measured by using the Benefit Finding Scale. Six domains of caregivers' personal growth have been identified  and are consistent for both caregivers of survivors and those in bereavement:
Anxiety and/or depression: Several large survey studies provide more-accurate estimates of the prevalence and potential covariates or risk factors for anxiety and depression; these are summarized below.
PTSD: One of the negative consequences of caregiving that persists is PTSD. A preliminary study of caregivers of patients with head and neck cancer 6 months after diagnosis demonstrated that approximately 20% met the criteria for PTSD. Risk factors for PTSD included the following:
The same investigators also showed in a similar population that differences in illness perceptions were dynamic over 6 months, but greater differences were correlated with reduced health-related quality of life (QOL) in patients.
Decline in caregiver QOL: Several investigators have published measures of caregiver QOL while patients were undergoing active treatment. One study demonstrated that caregivers of patients undergoing hematopoietic stem cell transplantation experience a decline in their QOL, as measured by the physical and mental component of the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36).
Patients receiving palliative therapy also rely heavily on informal caregivers. In a study of 201 informal caregivers of patients undergoing palliative radiation therapy for advanced cancer, additional employment of the caregiver, cohabitation, poor patient performance status, and interest in accessing more support services were significantly correlated with higher caregiver burden (poorer QOL).
In summary, a caregiver provides essential support and resources to the person with cancer. The role of informal caregiver, however, creates demands that may exceed the caregiver's resources and, ultimately, cause negative psychological consequences. The remainder of this summary focuses on the significant minority of caregivers who experience unmet needs and increased physical and psychological distress. After a brief review of the concept of caregiver burden, information about the demands on caregivers, resources valued by caregivers, potential moderators, and coping strategies will be presented.
The term caregiver burden describes a caregiver's perceptions of the demands of caregiving and the resources available for addressing those demands. The Transactional Model of Stress and Coping (refer to the figure below) is a useful framework for describing the relationships among caregiver demands, resources, burden, and the psychological consequences of being burdened. From this perspective, a burden is perceived when the demands on the caregiver exceed the resources available to him or her.
The process begins with the primary appraisal, which is a judgment about the relevance of the health threat and any demands on the caregiver. A demand that is judged to be relevant receives a secondary appraisal to evaluate the likelihood that available resources have the potential to reduce or overcome the demand. Burden is perceived to be high when the difficulty of the demand outweighs the available resources. Coping strategies may also determine whether the psychological consequences of the perceived burden are negative or positive.
The Transactional Model of Stress and Coping may explain why some caregivers experience burden and negative psychological consequences. Clinicians may intervene to reduce demands, increase resources, or foster adoptive coping. The text for antecedents, demands, and resources is from examples in the text of this summary.
The Transactional Model of Stress and Coping shown above has not been validated and serves to organize the remainder of the summary.
Primary Appraisal: Demands on Informal Caregivers
Qualitative analysis of interviews: A mixed-methods study of 48 informal caregivers of patients undergoing chemotherapy demonstrated several notable findings. First, 68% of the caregivers had one or no unmet needs; on the other hand, a minority (23%) had five to ten unmet needs. Second, the most common needs were for information about the risks and potential benefits of chemotherapy (79%) and managing side effects at home (78%). Other information-related needs included information about self-care, complementary and alternative therapies, and local community-based resources.
One group of investigators interviewed six patients with head and neck cancer and their spouses within 6 months of completing treatment. Thematic analysis demonstrated several unmet needs, including the following:
The complexity of a caregiver's life is further highlighted in a systematic review of qualitative studies of informal caregivers of patients with cancer and symptoms or signs of cachexia. The following themes were identified:
Surveys: To provide a more-accurate assessment of the needs of caregivers, one group of investigators developed and demonstrated the psychometric validity of the Supportive Care Needs Survey—Partners and Caregivers (SCNS–P&C). More than 500 caregivers of patients enrolled in a cancer survivor study returned surveys for analysis. The mean age of caregivers was 60.6 years (range, 16–85 years).
The diagnoses of survivors included the following:
Analysis revealed four domains of needs:
Investigators using the SCNS–P&C to conduct a telephone survey of 196 caregivers of patients with renal cell carcinoma demonstrated that 64% of caregivers had at least one significant unmet need; 53% had three or more unmet needs; and 29% had ten or more unmet needs. For each domain of needs, the proportion of respondents reporting a moderate or high unmet need was as follows:
In another study, 188 patient-caregiver dyads completed the SCNS–P&C. The caregivers were predominantly female; the average age was 57.8 years. Caregivers reported higher levels of distress and anxiety than did patients. A minority (14%) reported no unmet needs, and a plurality (44%) reported ten or more unmet needs. The principal unmet caregiver needs were as follows:
There were no strong predictors of caregiver needs; however, unmet patient needs and caregiver anxiety were modestly associated with unmet needs in caregivers.
Similarly, the SCNS–P&C was administered to 166 lung cancer patient–caregiver dyads in Taiwan. The top unmet needs were information needs.
Caregiver Tasks: A cross-sectional study demonstrated that participation in assisting patients in activities of daily living (ADLs) increased caregiver burden. This study enrolled 100 caregivers of older adults (age >65 years) with cancer. The caregivers were mostly women, married to and living with the patients. Employment status and participation in ADLs were risk factors for increased burden on multivariate analysis. Similarly, a survey of 590 caregivers demonstrated that primary caregivers assumed a significant workload. As a consequence, they experienced challenges in maintaining employment and social relations, and had financial difficulties. On the other hand, primary caregivers experienced the most personal growth through the experiences. A subsequent systematic review supported the results of the two studies. A more-nuanced view is that the perceived burden and the psychological consequences may relate to the sense of mastery for any given caregiver task.
Secondary Appraisal: Resources for Informal Caregivers
The following list captures the resources that caregivers identified in multiple studies as important:
Potential Moderators of Caregiver Burden
Factors associated with increased caregiver burden include the following:
Female gender is an established risk factor for increased burden. A survey of 308 self-identified caregivers of patients with advanced cancer sought to characterize potential determinants of the increased burden for female caregivers. Results demonstrated that hope and perceived fulfillment of support needs were the most significant protective factors against burden for both genders. Women who were employed or who used emotion-focused coping were more likely to perceive burden. Results suggest that interventions to address role strain and alternative coping strategies may be useful.
Family caregivers often feel unprepared, have inadequate knowledge, and receive little guidance from the oncology team for providing care to the cancer patient.Older caregivers are especially vulnerable because they may present with comorbidities, may be living on fixed incomes, and have reduced social support networks. In addition, older caregivers of cancer patients may neglect their own health needs, have less time to exercise, forget to take their own prescription medications, and become fatigued from interrupted sleep. It is therefore common for older caregivers to have poor physical health, depression, and even increased mortality.[16,17]
Younger caregivers must generally juggle work, family responsibilities, and sacrifices involving their social lives. Middle-aged caregivers typically worry about missed workdays, interruptions at work, taking leaves of absence, and reduced productivity.[18,19]
Race and ethnicity
In a meta-analysis of 116 empirical studies, Asian American caregivers were found to provide more caregiving hours than were White, African American, and Hispanic caregivers; to use lower levels of formal support services; and to have fewer financial resources, lower levels of education, and higher levels of depression than did the other subgroups. These findings are important for the oncology team because caregivers with no outside help are more depressed than are those who receive help.
A study involving unmet needs and service barriers among Asian American caregivers found that caregivers refused outside help because they "felt too proud to accept it" or "didn't want outsiders coming in"; other barriers included "bureaucracy too complex" or "can't find qualified providers." A study of hospice use by Asian American patients found that family reluctance to discuss a patient's health status among themselves resulted in lower rates of hospice enrollment. This reluctance was rooted in the belief that talking about death or dying is bad luck, which could complicate discussions about prognosis and informed consent. Keeping a cancer diagnosis secret from a patient and avoiding discussions about disease progression can add to a caregiver's sense of burden and responsibility.
Similarly, Hispanic and African American patients and caregivers underutilize community health resources, including counseling and support groups, home care, residential care, and hospice services. One important reason is that strong family ties may prevent these caregivers from seeking help outside of the family unit. A study that compared African American, White, and Hispanic caregivers found that 75% of Hispanic patients and 60% of African American patients lived with the family of the primary caregiver. The minority families relied more on informal caregiving from friends and relatives and had larger social support networks than did the White families. However, this increased sense of obligation to provide care for older family members was associated with more caregiving hours, greater resignation about caregiving, higher levels of caregiver strain, and a larger reduction in household income compared with White caregivers.[23,24]
Another study analyzed reports of employment loss due to caregiving responsibilities. Results showed that African American and Hispanic caregivers were more likely than White caregivers to reduce their work hours to care for patients. In addition, African American and Hispanic caregivers were reluctant to use formal nursing home services for their loved ones. The decision to reduce work hours rather than place a relative in a nursing home was associated with increased psychological, social, and financial burden.
Substantial out-of-pocket costs involved in caregiving can create financial strain for the families of patients with cancer. Low personal and household incomes and limited financial resources may also place families at risk of treatment noncompliance or making treatment-related decisions on the basis of income.
Informal caregiving is known to impose economic burdens on families. One study analyzed data from 458 cancer survivors who responded to the U.S. Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Survey (ECSS) and from 4,706 cancer survivors who responded to the LIVESTRONG 2012 Survey for People Affected by Cancer (SPAC). Results demonstrated that 25% of those responding to the MEPS ECSS and 29% of those responding to the SPAC reported that their caregivers made extended employment changes, including taking paid or unpaid time off and/or making changes in hours, duties, or employment status. The work productivity of 70 caregivers of patients with advanced cancer showed a 23% decline because of missed work. More hours of caregiving were associated with greater loss in productivity, which was associated with higher rates of caregiver depression and anxiety. A study of 89 caregivers of advanced-cancer patients showed that 69% reported some form of adverse impact on work; this increased to 77% during the end-of-life period.
Some research has shown an incremental increase in the economic burden of caregiving, assessed from disease and demographic characteristics. A study of 78 caregivers of women with advanced breast cancer showed that loss of productivity (absenteeism and reduced productivity at work) was greater for caregivers of women with progressive disease than for caregivers of those who were free of disease. A survey of 1,629 caregivers of people with lung and colorectal cancers demonstrated that economic burden was highest for caregivers of individuals with lung cancer or stage 4 disease. A study of 54 caregivers showed that African American and Hispanic caregivers reported greater distress related to employment and finances than did White caregivers. A study of partner caregivers of men with prostate cancer showed that caregivers with lower incomes (<$40,000/year) spent more time on informal caregiving than did those with higher incomes.
The Family and Medical Leave Act of 1993 (FMLA) was designed to give employees the option of taking time off from work for their own serious medical condition or that of a relative without losing their jobs or benefits. Family members are entitled to a maximum of 12 weeks' leave under the law.
Role strain is experienced when the perceived rights, duties, and behaviors of one socially defined role (e.g., employee) conflict with the rights, duties, and behaviors of a different role (e.g., student). The multiple roles performed by caregivers of cancer patients can compete for caregivers' physical and emotional resources. A study of 457 middle-aged caregivers showed that the more social roles a caregiver performed, the more likely the caregiver was to experience stress and negative affect. It is important to recognize, however, that employed caregivers may benefit from the respite provided by work and from the support of employers and coworkers, which enable them to replenish their psychological resources. Thus, multiple roles do not necessarily engender strain.
Site of care
Cancer care is provided in multiple physical locations that vary in their ability to provide support services for caregivers. Thus, site of care may be considered a risk factor for caregiver burden. This claim is supported by the results of a qualitative interview study of 12 patients and 12 caregivers about the challenges faced in transitioning from hospital to home. The investigators identified four salient themes:
An independent study of dyads demonstrated that the transition to home is very stressful because of the need to deal with symptoms, and uncertainty about prognosis and disease progression. Therefore, increased caregiver burden caused by transitions in sites of care should be recognized and ameliorated, when possible, with home nursing visits.
Unplanned changes in sites of care, such as hospital readmission, also place increased demands on caregivers. A total of 129 dyads of older adults with cancer and their family caregivers were studied to determine factors for unplanned hospital admissions. Investigators found that severity of symptoms, rather than caregiver knowledge—a target of many interventions—predicted unplanned hospital admissions in older adults with cancer during the active treatment phase. These results suggest that symptom management interventions may reduce stressful events more than does increasing caregiver knowledge about symptoms.
As conceptualized, coping strategies mediate the relationship between positive or negative consequences and the perception that the demands of caregiving exceed the available resources. One group of investigators interviewed and surveyed 50 family caregivers of cancer patients receiving palliative care. The aim was to describe the relationships between coping strategies and anxiety in caregivers. Anxiety was common in caregivers (76%). Emotion-based coping was associated with less anxiety, while dysfunctional coping was associated with increased anxiety. Perceived burden was also associated with increased anxiety.
As shown in the Transactional Model of Stress and Coping, caregivers and patients are interconnected. Evidence demonstrates a link between patient coping style and caregiver adjustment. A cross-sectional study of baseline data from a trial of subspecialty palliative care confirmed the relationship in 275 family caregivers of patients with incurable lung or colorectal cancer. The investigators demonstrated that caregivers experienced greater depressive symptoms when patients used emotional support coping or expressed optimism about their prognosis. Patient emotional support coping was associated with lower caregiver anxiety.
This interconnectedness between caregiver and patient also involves threat appraisal (the first step in the Transactional Model of Stress and Coping). A study of 484 dyads demonstrated that patient and caregiver symptom distress influenced their own, and in some cases each other's, cognitive appraisals.
Caregiver assessment can be performed at any point of contact within the health care system. Ideally, a comprehensive caregiver assessment should be performed when the following occurs:
In systems where caregivers are assessed, practitioners can acknowledge caregivers as valued members of the health care team. Caregiver assessment can identify family members most at risk of developing physical and mental health difficulties, so that additional services can be planned accordingly.
Multiple instruments to measure caregiver burden are available, including the Zarit Burden Interview, among others.[3,4,5,6,7,8,9] Objective measures of caregiver burden comprise variables such as the number of hours spent providing care and an actual count of tasks the caregiver performs.[Level of evidence: II] Objective measures are usually short and easy to answer, often pointing to a clear direction for problem solving and direct intervention. Caregiver assessment should reflect culturally competent practices.
Although there are many tools for measuring caregiver burden, a review  found only eight tools in English for psychometric evaluation of cancer caregivers. Of the eight, the Caregiver Reaction Assessment (CRA) and Caregiver Quality of Life Index-Cancer (CQOLC) had the best psychometric performance. Additionally, 16 conceptual domains within five overarching themes were identified across the eight instruments. Although the tools showed overlap in several domains, there was no single tool that measured all. Therefore, in assessing caregiver burden, it is prudent to utilize two or more instruments to obtain an evaluation across all domains.
The cancer experience may be conceptualized as occurring in several relatively distinct phases, from screening to diagnosis and treatment to either long-term survivorship or the end of life. The phases differ in likely activities, goals, and likely outcomes for the patient. It seems reasonable to assume that the experiences of the caregiver also vary, given the interdependence of caregiver and patient.
Studies Comparing Caregivers at Different Points in the Cancer Trajectory
Few studies directly compare caregivers of cancer patients across the disease trajectory or patients at different stages of disease. One research group conducted a qualitative study and interviewed 15 cancer caregivers before, during, and at 4 months after bone marrow transplant. Although the exemplars varied across the trajectory, two consistent themes regarding caregiver concerns emerged: uncertainty and the need for more information.
Another study compared the results of two cross-sectional studies of caregivers of cancer patients who were in the late palliative phase or who were attending a pain clinic (which the authors termed the curative phase). The authors found no differences in the mean scores of the Hospital Anxiety and Depression Scale (HADS) or the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) as measures of quality of life (QOL). The results should be interpreted with caution, given the different inclusion criteria and different time periods of the study. Furthermore, the group means may obscure meaningful changes in individual caregivers over time.
A separate analysis demonstrated that symptom burdens in patients did not vary between cohorts, but both groups scored high on measures of weakness and fatigue. Caregivers reported higher rates of depression when patients had insomnia, but the association did not vary between cohorts. However, the methodology of the studies limits the drawing of firm conclusions.
The evidence demonstrates that although the prevalence of unmet needs diminishes over time, a significant minority of caregivers continues to experience needs related to the cancer experience during the survivorship phase.
For example, a longitudinal study was designed to track the psychosocial, financial, and occupational impact of having ongoing needs as a caregiver in Australia. The investigators analyzed responses to the Supportive Care Needs Survey—Partners and Caregivers (SCNS–P&C) from 547 caregivers at 6 months, 519 caregivers at 12 months, and 443 caregivers at 24 months after the cancer diagnosis. Of note, 444 of the original 547 participants completed surveys at 12 months, and 372 completed surveys at 24 months.
Several findings deserve emphasis:
The End of Life
The end-of-life experiences of patients with advanced cancer influence the burden on caregivers and their eventual psychological adjustment during bereavement. A longitudinal study of caregivers of women with advanced-stage ovarian cancer provides valuable insights into the caregiver's experience in the last year of the patient's life. Ninety-nine caregivers completed measures every 3 months for 2 years. The caregivers reported lower-than-expected mental and physical QOL. The average distress and number of unmet needs increased over time. Perceived social support did not change. Caregiver distress was predicted by lower optimism, higher unmet needs, and shortened time to patient death. Patient QOL was not a predictor. In the last 6 months of the patient's life, managing emotions about poor prognosis and balancing work with caregiving demands were related to high unmet needs in the caregiver.
One potential source of caregiver distress toward the end of life is the ambiguity around caregivers' role in decisions to limit potentially life-sustaining treatments such as chemotherapy or resuscitation. Two studies provide clarifying observations.[7,8] One study embedded researchers during hospitalizations of patients with advanced cancer to record the participation of caregivers in decisions to limit treatment. The investigators identified 70 patients, but only 63 had caregivers present. In the cohort, only 32% of relatives were involved, both positively and negatively. Clinicians were more often aware of patients' preferences when relatives were present (78% v. 29%, P = .014). Caregivers, however, were not always in agreement and, in one-third of the observations, contradicted the patients. Thus, caregivers may be a source of insight but do not necessarily accurately reflect patients' wishes.
The caregiver's importance to the decision process may vary based on clinicians' attitudes. In an interview study of oncology physicians and nurses, two broad perspectives were found: maintaining patient autonomy independent of caregiver influence and facilitating decision-making by actively involving caregivers seeking consensus. These perspectives were based on a desire to enhance the positive aspects of caregivers' support (e.g., emotional, encouragement to plan, and understanding of information) while minimizing the potential barriers (e.g., family reluctance to accept the patient is at the end of life, the need to mediate conflicts, and the increased time required to include caregivers). These findings highlight the potential value of caregivers and the need to develop specific strategies.
Hospice care can provide critical support to caregivers as well as to patients. One group of investigators compared the burden and QOL of caregivers of patients with advanced cancer who were receiving active treatment with the burden and QOL of caregivers of patients who were receiving hospice care. The goal was to characterize the demands unique to the hospice phase of care. The investigators found no difference in the perceived burden of caregiving and increased role limitations due to mental or emotional challenges; however, caregivers in the hospice group reported fewer physical limitations. Similarly, another group reported that longer hospice stays were associated with better patient QOL and better caregiver adjustment during bereavement.
One potential explanation for the benefit of hospice is that caregivers are reassured by the higher quality of end-of-life care and the honoring of patients' goals. One study analyzed interviews with 1,146 family members of Medicare beneficiaries who died from advanced-stage lung or colorectal cancer. The results demonstrated that hospice enrollment was associated with more "excellent" ratings for quality of care reported by family members. Similarly, patients who received intensive care or had short enrollments were less frequently reported to have died in their preferred place.
Caregivers may also require support to effectively participate in decisions about whether to provide patients with artificial nutrition or hydration (ANH). Investigators conducted a prospective cross-sectional survey of 39 patients with advanced cancer and 30 relatives about their views on ANH. Only 24% of relatives stated they would opt out of ANH if deciding on behalf of their loved ones; 48% were against hydration. Patients were less concerned with adverse physical symptoms such as pain, agitation, and hunger than were their relatives. Patients endorsed their family members' opinions as being important in the decisions. (Refer to the Artificial Hydration section in the PDQ summary on Last Days of Life for more information.)
Many types of interventions have been tested to address the needs of informal caregivers.[1,2,3] The interventions have focused on improving outcomes for the individual patient, caregiver, or patient-caregiver dyad. The types of interventions studied and the goals of each intervention are summarized below.
The efficacy of these interventions has been mixed. Findings from a few meta-analyses have identified positive effects (small to medium effects) of psychosocial-educational interventions on caregivers and on patient-caregiver outcomes.[5,6,7] However, many studies are limited by small sample sizes and short assessments, and they often vary in outcomes depending on the study focus (patient vs. caregiver vs. patient-caregiver dyads).
One meta-analysis of 29 randomized clinical trials published from 1983 to 2009  identified the following three major types of interventions:
The authors used a conceptual framework to organize the outcome data, integrating stress and coping theory, CBT, and quality of life (QOL) frameworks. Overall, all three interventions showed promise (small to moderate effect) for improving the following outcomes:
A follow-up systematic review of the literature identified 49 intervention studies that addressed caregiver demands/burden. Eight different types of interventions were noted, with most studies categorized as psychoeducational, problem solving, supportive therapy, and family/couples therapy. The authors noted only three studies that used CBT. However, all three studies using CBT noted significant improvement in psychological functioning in informal caregivers. Overall, the authors suggested that programs that were structured, integrative, and goal oriented appeared to offer the greatest benefits.
This initial work was expanded upon with a synthesis and meta-analyses of the effectiveness of CBT for improving psychological functioning in informal caregivers. The authors identified a small statistical effect of CBT (Hedge's g = 0.08); however, this significant effect disappeared when randomized controlled trials were reviewed alone. The authors suggested that the broad definition of CBT and variations in the definition of informal caregivers may have limited results.
Two additional reviews focused on literature published up until 2016.[8,9] One group of investigators conducted a systematic review of 21 psychosocial interventions for improving QOL, depression, and anxiety in cancer caregivers. This report and others have illustrated some noteworthy interventions that have been used in multiple studies.
This section provides information about a few individual landmark studies.
Overview of study limitations and unresolved questions
A number of limitations in studies to date prevent any conclusions about choosing an optimal intervention. Salient limitations include the following:
Limitations will be addressed as future studies, as follows:
Overview of results of selected studies
Following are two tables containing brief descriptions of noteworthy reports to aid in understanding potential interventions and benefits. Table 1 organizes studies by type of intervention and highlights positive and negative studies. As outlined in the previous section, however, methodological limitations prevent comparisons or conclusions.
Table 2 highlights some of the investigational studies that support the effectiveness of psychoeducational, problem-solving, and CBT interventions in which most of the work has been conducted. In addition, the table displays the outcomes (resources and/or coping) that were improved in each of these studies.
Subspecialty Palliative Care
As previously described in this summary, the mental and physical health and coping of patients and caregivers are interdependent. (Refer to Secondary Appraisal: Resources for Informal Caregivers, The Needs of Caregivers During Specific Phases of the Cancer Trajectory, and The Psychological Consequences of Caregiving sections of this summary for more information.) Several trials of subspecialty palliative care interventions have specifically targeted and measured caregiver outcomes.
Palliative Care/End of Life
A systematic review highlighted the results of 14 studies of patients receiving end-of-life care. The review showed that cognitive behavioral therapy was conducted the most (n = 6) and demonstrated the most positive outcomes, including increased self-efficacy, improved psychological functioning, increased hope, and improved QOL across the various studies.
The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.
The Needs of Caregivers During Specific Phases of the Cancer Trajectory
Added text about two studies of caregivers' role in decisions to limit potentially life-sustaining treatments of patients with cancer. In one study, clinicians were more often aware of hospitalized patients' preferences when relatives were present, but the preferences of patients and caregivers did not always agree (cited Hauke et al. as reference 7). In the other study, clinicians' perspectives were based on a desire to enhance the positive aspects of caregivers' support while minimizing the potential barriers (cited Laryionava et al. as reference 8).
This summary is written and maintained by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of NCI. The summary reflects an independent review of the literature and does not represent a policy statement of NCI or NIH. More information about summary policies and the role of the PDQ Editorial Boards in maintaining the PDQ summaries can be found on the About This PDQ Summary and PDQ® - NCI's Comprehensive Cancer Database pages.
Purpose of This Summary
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about challenges and helpful interventions for caregivers of cancer patients. It is intended as a resource to inform and assist clinicians in the care of their patients. It does not provide formal guidelines or recommendations for making health care decisions.
Reviewers and Updates
This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).
Board members review recently published articles each month to determine whether an article should:
Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.
The lead reviewers for Informal Caregivers in Cancer are:
Any comments or questions about the summary content should be submitted to Cancer.gov through the NCI website's Email Us. Do not contact the individual Board Members with questions or comments about the summaries. Board members will not respond to individual inquiries.
Levels of Evidence
Some of the reference citations in this summary are accompanied by a level-of-evidence designation. These designations are intended to help readers assess the strength of the evidence supporting the use of specific interventions or approaches. The PDQ Supportive and Palliative Care Editorial Board uses a formal evidence ranking system in developing its level-of-evidence designations.
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The preferred citation for this PDQ summary is:
PDQ® Supportive and Palliative Care Editorial Board. PDQ Informal Caregivers in Cancer. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/coping/family-friends/family-caregivers-hp-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389284]
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Last Revised: 2021-11-12
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