Family and caregiver needs over the course of the cancer trajectory

When a patient is diagnosed with cancer, family members often assume responsibility for providing care. They are typically involved not only with the diagnostic and treatment phases of care but also across the care trajectory and into survivorship. These caregivers are a primary source of support to individuals with cancer. The purpose of this article is to present an overview of the challenges, needs, and roles of family caregivers over the course of the cancer treatment trajectory and to discuss what support the professionals can provide. Caregivers require support, coordination, and communication with health care providers if they are to be successful in carrying out tasks of care. Concern for caregivers as partners in patient care and caregiver outcomes deserves attention from health care professionals. Considering the caregivers' value to the health care team, this role should not be underestimated.     

Psychological functioning of caregivers for head and neck cancer patients

Patients with head and neck squamous cell carcinoma (HNSCC) often require assistance from family caregivers during the treatment and post-treatment period. This review article sought to summarize current findings regarding the psychological health of HNSCC caregivers, including factors that may be associated with poorer psychological health. Online databases (PUBMED, MEDLINE and PSYCINFO) were searched for papers published in English through September 2010 reporting on the psychological health of caregivers of HNSCC patients. Eleven papers were identified. Caregivers experience poorer psychological health, including higher levels of anxious symptoms, compared to patients and to the general population. Fear of patient cancer recurrence is evident among caregivers and is associated with poorer psychological health outcomes. The 6-month interval following diagnosis is a significant time of stress for caregivers. Greater perceived social support may yield positive benefits for the psychological health of caregivers. To date, there have been relatively few reports on the psychological health of caregivers of HNSCC patients. Well designed, prospective, longitudinal studies are needed to enhance our understanding of how caregiver psychological health may vary over the cancer trajectory and to identify strategies for improving caregiver outcomes.     

The emerging role and needs of family caregivers in cancer care

Involvement of family caregivers is essential for optimal treatment of cancer patients in ensuring treatment compliance, continuity of care, and social support, particularly at the end of life. The diagnosis of cancer presents a major crisis not only to the patient but also to the patient's primary caregiver. Caregivers often assume this role under sudden and extreme circumstances, with minimal preparation and uneven guidance and support from the healthcare system. The primary setting for the delivery of care to patients with cancer has shifted from the hospital to the home as a result of increased use of outpatient services for cancer treatment, shortened hospital visits, longer survival,and the trend for caregivers to accommodate patients' desire to be cared for at home for as long as possible. Caring for a family member with cancer poses significant challenges, with considerable psychological and physical consequences for the caregiver. Family caregiving has gained attention in the past decade with growing realization that support for family caregivers benefits the caregiver, the patient, and the healthcare team.This article will attempt to provide an understanding of the multifaceted role of caregivers in cancer care, describe the impact of this role on the caregiver's quality of life, impart an understanding of the caregiver's burden and unmet needs, highlight adaptational requirements of caregivers along the disease trajectory, and describe interventions for providing support to nonmedical persons caring for patients with cancer.     

The Supportive Care Needs of Regional and Remote Cancer Caregivers

Objective: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. Methods: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. Results: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. Conclusions: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers’ age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care.     

Lifestyle interference and emotional distress in family caregivers of advanced cancer patients

BACKGROUND: Providing end-of-life care at home to a family member with advanced cancer can have a negative impact on the emotional well-being of the family caregiver. The current study examined the impact of providing care on lifestyle and emotional well-being in a sample of caregivers to patients with advanced cancer. The mediation of lifestyle interference between the amount of care provided and emotional distress was specifically examined. METHODS: Forty-four family caregivers participated in a structured quantitative interview. Lifestyle interference was assessed by the Caregiving Impact Scale, amount of care provided was assessed by the Caregiver Assistance Scale, and emotional distress was assessed by the Profile of Mood States-Short Form. Pearson and partial correlations tested whether lifestyle interference mediated the relationship between caregiving assistance and emotional distress. Regression analyses determined overall correlates of emotional distress. RESULTS: Three criteria, required to substantiate mediation, were met for total mood disturbance and the depression and tension subscales. An overall regression model identified education level and lifestyle interference to be significant and unique correlates of emotional distress. CONCLUSIONS: The current results suggest that caregivers experience increased emotional distress, regardless of the amount of care provided, when limited in their ability to participate in valued activities and interests. In addition, caregivers with less than a high school education experience more emotional distress. Therefore, helping caregivers maintain valued aspects of their lifestyle should be an important element of home care.     

Objective burden,resources, and other stressors among informal cancer caregivers: a hidden quality issue?

A great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands. Background: Changes in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients. Methods: Caregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self‐administered questionnaires (n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care. Results: Over half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer‐specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided. Conclusions: Much assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes. Copyright © 2010 John Wiley & Sons, Ltd.     

Self-identified needs of patients with cancer at home and their home caregivers: a descriptive study

Increasing numbers of patients with cancer are being cared for at home by family caregivers because of the chronicity of cancer and the transition of health care from hospital to home. This study describes the needs of 15 patients with cancer at home and 15 home caregivers. Using the Objects Content Test (OCT), 505 need statements were collected from the subjects. Three hundred patient needs and 192 caregiver needs were identified. Nurse researchers and oncology experts computer Q-sorted the 505 need statements into need categories previously established by Wingate and Lackey. Patients' greatest needs were psychological, physical, and informational. Caregivers' greatest needs were psychological, informational, and those related to household duties. Qualitative data reflected that both patients and caregivers needed support from family or friends, hope, and a sense of the future. Patients indicated a need for purposeful activities.     

Caregiver burden and unmet patient needs

Four-hundred eighty-three patients with cancer and their informal caregivers were studied. Patients reported on met and unmet needs in personal care activities (bathing and dressing), instrumental activities (heavy and light housekeeping, cooking, shopping), transportation (medical and general), and home health care (health/treatment assistance). A minority (18.9%) experienced an unmet need. Hierarchical logistic regression was used to identify significant predictors of any unmet need. Patients were more likely to report any unmet needs when their illness/treatment resulted in restricted activity days, when their financial resources were reduced enough for them to apply for Medicaid or Public Assistance, or when their caregivers were not their spouses. Although in general, the likelihood of an unmet need decreased as the number of domains of assistance provided by the caregiver increased, if that care was associated with a high level of burden, the odds of a patient reporting an unmet need actually increased.     

Intervention development for enhanced lay palliative caregiver support - the use of focus groups

Caring for a family member or friend dying of cancer can be extremely stressful. Past research identified that lay caregivers frequently report unmet needs related to guidance and support to assist them to provide care. This study sought to extend prior needs-based research towards the development of a new nursing intervention focused on the guidance and support provided to persons caring for a relative or friend dying of cancer. Focus groups were conducted with current lay caregivers, bereaved lay caregivers and palliative care nurses. The findings endorsed the applicability of previous caregiver need research to the Australian context. Participants revealed that caregivers were commonly unprepared for their role and desired much more guidance and support from health professionals. Importantly, the research provided the essential ingredients for the future development of a new intervention aimed at augmenting home lay palliative caregiver guidance and support.     

Improving depressive symptoms among caregivers of patients with cancer: results of a randomized clinical trial

PURPOSE/OBJECTIVES: Determine the impact of a 16-week supportive nursing intervention on caregivers of patients with newly diagnosed cancer. DESIGN: Randomized clinical trial. SETTING: Two midwestern cancer treatment sites. SAMPLE: Caregivers of newly diagnosed patients. Patients' mean age was 55.73 years; 55% had breast cancer, and 76% were female. Caregivers' mean age was 52.44 years, and 50% were female. 125 dyads consented to participate; 89 dyads completed the study. METHODS: A nursing intervention was delivered to the experimental group that emphasized symptom monitoring/management, education, emotional support, coordination of services, and caregiver preparation to care. Nurses made a total of nine contacts, five in person and four by telephone, over 16 weeks. Centers for Epidemiological Studies-Depression (CES-D) and a symptom inventory were used. Medical record audits were conducted retrospectively. MAIN RESEARCH VARIABLES: Patient and caregiver depression scores and patient symptom experience. FINDINGS: Baseline caregiver depression and the number of patient symptoms at baseline, 9, and 24 weeks were significant predictors of caregiver depression at 9 and 24 weeks. However, no main effect of the experimental condition existed on caregiver depression. At the final observation, a nonsignificant inverse relationship was found between the number of interventions and depression scores for caregivers. CONCLUSIONS: The intervention appeared to be more effective in slowing the rate of deterioration of depressive symptoms than in decreasing levels of depression in this sample of caregivers. Determining the effectiveness of this intervention in decreasing caregiver depression was difficult because caregivers with higher levels of depression were more likely to withdraw from the study. IMPLICATIONS FOR NURSING PRACTICE: Nurses must be vigilant in monitoring caregivers for signs of depression and must intervene to provide emotional support and make appropriate referrals for follow-up care to promote positive outcomes for patients and caregivers.     

Problem-Solving Through Electronic Bulletin Boards

Summary

Changes in the organization and financing of health care delivery have resulted in increasing the responsibilities of family members who care for people with cancer and other chronic diseases. These family caregivers need to develop skills in problem-solving and in preventing physical, emotional, and social crises at home. For problem-solving education to affect caregiving behavior, family caregivers need ongoing reinforcement of what they have learned about problem-solving. Such support can come from the creative use of technology, such as computer or voice bulletin boards, which offer a wide array of services that are directly available at home for health education or counseling purposes. This article describes two computer-driven sources of information and support: the CHESS Program and the Telepracticc and COPELINE systems, which are specifically designed to reinforce problem-solving learning among family caregivers of people with cancer.     

A review of family caregiving intervention trials in oncology

This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017. © 2017 American Cancer Society. CA Cancer J Clin 2017;67:318–325. © 2017 American Cancer Society.     

Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2‐day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient‐caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987–95 . © 2016 American Cancer Society.     

Retrospective Analysis of Emotional Burden and the Need for Support of Patients and Their Informal Caregivers after Palliative Radiation Treatment for Brain Metastases

Cancer burdens not only the patients themselves but also their personal environment. A few studies have already focused on the mental health and personal needs of caregivers of patients. The purpose of this retrospective analysis was to further assess the emotional burden and unmet needs for support of caregivers in a population of brain metastasis patients. In the time period 2013–2020, we identified 42 informal caregivers of their respective patients after palliative radiation treatment for brain metastases. The caregivers completed two standardized questionnaires about different treatment aspects, their emotional burden, and unmet needs for support. Involvement of psycho-oncology and palliative care was examined in a chart review. The majority of the caregivers (71.4%, n = 30) suffered from high emotional burden during cancer treatment of their relatives and showed unmet needs for emotional and psychosocial support, mostly referring to information needs and the involvement in the patient’s treatment decisions. Other unmet needs referred to handling personal needs and fears of dealing with the sick cancer patient in terms of practical care tasks and appropriate communication. Palliative care was involved in 30 cases and psycho-oncology in 12 cases. There is a high need for emotional and psychosocial support in informal caregivers of cancer patients. There might still be room for an improvement of psychosocial and psycho-oncological support. Care planning should cater to the emotional burden and unmet needs of informal caregivers as well. Further prospective studies in larger samples should be performed in order to confirm this analysis.     

Burdens,Needs and Satisfaction of Terminal Cancer Patients and their Caregivers

Objectives: Terminal cancer patients and their caregivers often experience traumatic stress and needmany types of assistance. In the present study we interviewed terminally ill cancer patients and caregiversto determine how much burden they experienced and to find out what factors are most important forsatisfaction. Design: We constructed a questionnaire including overall care burden and needs experienced,and administered it to 659 terminal cancer patients and 659 important caregivers at 11 university hospitalsand 1 national cancer center in Korea. Results: Finally, 481 terminal cancer patients and 381 caregiverscompleted the questionnaire. Care burden was not insubstantial in both and the caregiver group felt moreburden than the patient group (P<0.001). While the patient group needed financial support most (39.0%),the caregiver group placed greatest emphasis on discussion about further treatment plans (44.8%). Stepwisemultiple logistic regression analyses showed that in the patient group, patient’s health status (OR, 2.03;95%CI, 1.16-3.56) and burden (OR, 2.82; 95%CI, 1.76-4.50) influenced satisfaction about overall care,while in the caregiver group, high education level (OR, 1.84; 95%CI, 1.76-4.50), burden (OR, 2.94; 95%CI,1.75-4.93) and good family function (OR, 1.94; 95%CI, 1.24-3.04) were important. Conclusions: Our studyshowed that burden was great in both terminal cancer patients and their caregivers and was perceived to bemore severe by caregivers. Our study also showed that burden was the factor most predicting satisfactionabout overall care in both groups.     

Support for caregivers of cancer patients: transition after active treatment

Family caregivers provide uncompensated care and assistance to a family member who has cancer. When patients move through the care trajectory into the survivorship phase, roles and demands of caregivers change and caregivers assume responsibility to assist with coordination of ongoing care. The goal of this article is to describe aspects of caregiver experiences and the roles of caregivers as patients transition from active cancer treatment into the first and early phase of cancer care. Residual problems for patients and caregivers remain for some period of time.     

Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial

BACKGROUND: Family caregivers for cancer patients experience high levels of stress and burden and diminished quality of life (QOL). Interventions to improve coping skills of caregivers have been shown to be effective with other populations, but their impact has not been assessed in the difficult context of hospice care. The purpose of this study was to determine whether hospice plus a coping skill training intervention improved family caregivers' QOL, burden, coping, and mastery, compared with hospice plus emotional support, and usual hospice care. METHODS: A three group randomized controlled trial was conducted including baseline, 16 day, and 30 day assessments conducted from March 1999 to May 2003. The sample consisted of 354 family caregivers of community dwelling hospice patients with advanced cancer. Patient/caregiver dyads were randomly divided into three groups, including a control group (n = 109) who received standard hospice care, a group (n = 109) who received standard hospice care plus three supportive visits, and a group (n = 111) who received standard care plus three visits to teach a coping skills intervention. Primary outcomes included caregiver QOL, caregiver burden due to patient symptoms, caregiver burden due to tasks, and caregiver mastery. RESULTS: At the 30-day follow-up, the coping skills intervention led to significantly greater improvement in caregiver QOL (estimate = -0.16, standard error [SE] = 0.07, P = 0.03), burden of patient symptoms (estimate = 0.28, SE = 0.07, P < 0.001), and caregiving task burden (estimate = -0.01, SE = 0.01, P = 0.038) than did the other two conditions. None of the groups showed significant change in overall caregiving mastery, caregiver mastery specific to caregiving tasks, problem-focused or emotion-focused coping. CONCLUSIONS: The coping skills intervention was effective in improving caregiver QOL, reducing burden related to patients' symptoms, and caregiving tasks compared with hospice care alone or hospice plus emotional support. Structured caregiver skill-training interventions for caregivers are promising even in the difficult environment of end-of-life care and for families already receiving benefits of hospice care.     

Identifying the needs of home caregivers of patients with cancer.

Increasing numbers of patients with cancer are being cared for by home caregivers. The primary purpose of this methodologic, correlational study was to identify, categorize, and assess the importance of needs expressed by 492 home caregivers and to determine how well these needs were satisfied. Caregivers surveyed were selected from the records of two nonprofit community cancer agencies and two hospital outpatient oncology clinics in the Midwest. These individuals were identified by at-home patients with cancer as unpaid people who helped with physical care or coping with the disease process. Caregiver characteristics and patient activity were examined to determine their relationships to caregiver needs, and needs were examined over time. The 90-item Home Caregiver Need Survey used in this study was developed by the author in 1989 and demonstrated internal consistency, reliability, and construct validity. Using factor analysis, six need categories were identified: psychological, informational, patient care, personal, spiritual, and household. Caregivers' greatest needs were informational and psychological. Significant correlations between certain caregiver characteristics and caregiver needs and between caregiver needs and patients' activity levels were found. Both the importance and satisfying of needs changed over time. Findings indicate the urgent need for nurses, who usually provide support for caregivers, to establish specific programs and services to meet the identified and unmet informational and psychological needs of caregivers of at-home patients with cancer. Frequent reassessment of caregiver needs seems to be indicated.