Underestimated caregiver burden by cancer patients and its association with quality of life,depression and anxiety among caregivers

This study examined how patients with cancer estimate caregiver burden (CB) and the association between their underestimation of CB and their caregivers' self‐ratings of their quality of life (CQOLC‐K; Korean version of the Caregiver Quality of Life Index‐Cancer), depression and anxiety (Korean version of the Hospital Anxiety and Depression Scale). Participants consisted of 990 patient‐caregiver dyads recruited from a nationwide cross‐sectional survey conducted in South Korea. Medical baseline data were retrieved from the hospital information systems of the participating centres. The patients with cancer who underestimated CB ranged from 18.62% (for physical CB) to 23.33% (for social CB). They had less advanced cancer, a lower income, were the caregiver's spouse, reported higher levels of family avoidance of communication about cancer, and had female caregivers. The patients' underestimation of CB was significantly related to lower CQoL and higher levels of caregiver depression and anxiety. The current study provides empirical evidence for the link between the underestimation of CB by patients with cancer and compromised caregiving experiences of cancer caregivers. Open family communication about cancer was discussed as one of several practical strategies for decreasing patients' underestimation of CB.     

Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea

Objective: Caregivers may experience positive or negative feelings about their role. The study investigated the determinants of the burden and positivity of family caregivers of Korean terminal cancer patients. Methods: A multicenter cross‐sectional survey was conducted with 139 family caregivers. Determinants of caregiver's burden and positivity were assessed by the Caregiver Reaction Assessment Scale and by three questions based on a previous study, respectively. Two separate hierarchical multiple regression models were used. Results: Each domain of the caregiver's burden and positivity was explained by different factors, with the total explained variance ranging between 14.4–33.6% and 2.6–18.3%, respectively. Caregivers who were unmarried, less educated, and/or had low incomes were more likely to be negatively affected, while those who shared caregiving responsibilities were less prone to negative consequences. Caregivers who were male, religious practitioners, and who perceived a higher burden of schedule disruptions were more likely to have a positive perception of their role, while those who perceived a lack of family support were less likely. Conclusions: Our results highlight the importance of sharing the caregiving burden with the other family members. Organizing a family meeting can provide an opportunity for other family members to acknowledge the feelings and reactions of the primary caregivers, and can prompt the sharing of caregiving responsibilities. Copyright © 2010 John Wiley & Sons, Ltd.     

Disruptions in the organization of meal preparation and consumption among older cancer patients and their family caregivers

Objectives: The purpose of this paper is to analyze the social organization of caring as gendered work as it relates to meal preparation and consumption activities surrounding older adult cancer patients and their caregivers. Methods: Qualitative methods consisting of in‐depth, semi‐structured, face‐to‐face interviews with 30 older cancer patients (17 women and 13 men aged 68–90) and their caregivers were conducted separately. Participants were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancer. Results: Major findings were that both patients and caregivers experienced distress surrounding food preparation and mealtime activities, and these varied according to the gender of both patients and caregivers and the relationship that existed between patients and caregivers. Of particular note, female patients experienced distress over not being able to fully participate in meal planning and cooking activities that were central to their self‐identity. Related to this, male spouses experienced frustration over not being able to engage in cooking activities that met their wives' expectations. Female caregivers expressed tremendous discontent that the one they were caring for did not eat like they ‘should’. Discussion: Matters related to the organization of meals and food consumption activities may be a source of significant distress for patients and caregivers. Further research and greater attention from health care providers are warranted to evaluate the extent of such distress. Copyright © 2010 John Wiley & Sons, Ltd.     

Caregiver burden among poor caregivers of patients with cancer in an urban African setting

Objectives: The nature and magnitude of the problems facing caregivers remain largely unknown in developing countries of the world. This study addresses these issues in a group of caregivers of patients with cancer in Zaria, Nigeria. Method: One hundred and three patients attending an oncology outpatient clinic at the Ahmadu Bello University Teaching Hospital were enrolled in the study with their caregivers. The caregivers were interviewed using the Socio‐demographic data sheet, General Health Questionnaire‐30 (GHQ‐30) and Zarith Burden Interview (ZBI). A score of 4 or more in GHQ and scores above the median score of the sample in ZBI were considered a clinically significant level of psychological morbidity and a high level of burden, respectively. Data obtained were analyzed using the Statistical Package for Social Sciences Version 13 for Windows. All statistical tests of significance were carried out at 5% level of probability. Results: The patients were 60 women whose mean age was 57. Of the 103 caregivers, 60 (58%) were men and 43 (42%) were women. Their mean age was 37. Their mean ZBI and GHQ‐30 scores were 29.16±12.8 (median = 25) and 3.67±3.01, respectively. A high level of burden was found in 49.5% (95% CI 39.9–59.1%) and psychological morbidity was found in 46.6% (95% CI 37.0–56.2%) of the caregivers. High levels of burden and psychological morbidity were significantly associated with absence of financial support. Conclusion: The study demonstrated a high level of caregiver burden, psychological morbidity and financial strain in family caregivers coming to the clinic with a relative who has cancer in an urban Nigerian setting. Copyright © 2010 John Wiley & Sons, Ltd.     

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.     

晚期乳腺癌患者年龄和生存质量对其家庭照顾者生存质量的影响

目的：探讨晚期乳腺癌患者年龄及生存质量对其家庭照顾者的生存质量的影响。方法选取130例晚期乳腺癌患者及其130名家庭照顾者为研究对象,家庭照顾者完成照顾者生活质量指数-癌症表（CQOLC）问卷调查,所有的患者和家庭照顾者完成线性模拟自评量表（LASA）调查评估生活质量（QOL）,心境量表（POMS）评估心理状态。结果年龄≥65岁的晚期乳腺癌患者其照顾者心理健康、情感健康、精神健康、社会支持、总POMS分和总CQOLC分均高于年龄﹤65岁的患者照顾者,差异均具有统计学意义（P﹤0.05）。患者LASA中总的QOL评分﹥50分的晚期乳腺癌患者照顾者总QOL分、心理健康、身体健康、情感健康、精神健康、总POMS分和总CQOLC分均高于LASA中总的QOL评分≤50分的患者照顾者,差异均具有统计学意义（P﹤0.05）。结论晚期乳腺癌患者年龄≥65岁、生存质量高,其相应的家庭照顾者生存质量亦高。