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1.
Objective: This study examined the extent and the nature of agreement on health‐related quality of life (QOL) assessments between terminally ill cancer patients and their primary family caregivers in Japan, using a multidimensional QOL instrument including psychosocial and spiritual domains. Methods: The Functional Assessment of Chronic Illness Therapy‐Spiritual well‐being questionnaire was used to assess patients' QOL. Study subjects were inpatients of a palliative care unit (PCU), outpatients who applied for admission to the PCU, and their primary family caregivers. Results: QOL ratings were obtained from 102 of 197 eligible patient–caregiver dyads. A moderate level of patient–family concordance on patients' overall QOL as well as families' underestimation of patients' QOL were observed. Families reported on observable domains of patients' QOL more reliably and assessed subjective aspects, such as psychospiritual concerns less accurately. Families tended to underrate the patients' social aspect of QOL, whereas most patients gave the highest rating on support from their families. The spiritual domain, particularly regarding faith, showed the least agreement. The size of the systematic bias between patient and family assessments on the patients' QOL was moderate (>0.50). Conclusions: Families' limited ability to assess psychosocial and spiritual aspects of patients' QOL may suggest the need for better approaches or measures to assess these aspects of a patient's life. The systematic bias was larger than in earlier studies. Further investigation is needed to identify factors affecting patient–family discord on QOL assessments to guide effective interventions to enhance patient–caregiver agreement. Copyright © 2010 John Wiley & Sons, Ltd.  相似文献   

2.
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.  相似文献   

3.
While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs’ domains in determining survivors’ or caregivers’ perceived caregiver burden. This cross‐sectional study explored which domains of survivor‐ and caregiver‐reported supportive care needs were most associated with survivor‐ and caregiver‐reported caregiver burden, in breast cancer survivor–caregiver dyads. Cancer survivors (N = 55) and their caregivers (N = 44) completed measures of supportive care needs, anxiety, depression, functional well‐being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor‐perceived caregiver burden and higher caregiver‐perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors’ psychological needs uniquely contributed to survivors’ self‐perceived burden, and survivors’ sexual needs and caregivers’ work and social needs uniquely contributed to caregivers’ perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships.  相似文献   

4.
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.  相似文献   

5.
PURPOSE/OBJECTIVES: To examine relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life (QOL), and burden. DESIGN: Exploratory, quantitative. SETTING: Five hospice organizations in Eastern Washington and Northern Idaho. SAMPLE: 44 primary caregivers of patients enrolled in hospice for more than two weeks. METHODS: Telephone surveys measured primary caregivers' satisfaction with hospice care, QOL, and burden. Demographic, personal, and situational characteristics were compiled. Multivariate regression techniques were used to identify caregiver characteristics that explained the most variation in satisfaction with hospice care, QOL, and burden. MAIN RESEARCH VARIABLES: Satisfaction with hospice care, QOL, and burden. FINDINGS: Being retired, being a wife or daughter, patient diagnosis, per diem rate paid to the hospice organization, county population and density, length of time in hospice, and length of time as a caregiver were significantly related to satisfaction with hospice care, QOL, and burden. Age, sex, education level, occupation, income, patient functional status, and social support were not related to these variables. CONCLUSION: Although caregivers reported satisfaction with hospice care, the caregiver role negatively affects their QOL and they are burdened. "At-risk" caregivers are still working, have been providing care for a long time, and live in a rural locale. IMPLICATIONS FOR NURSING PRACTICE: These findings create a profile of "typical" and "at-risk" primary caregivers and support the role of hospice to care for family caregivers.  相似文献   

6.
Background. Although cancer has been considered as a chronic disease for those diagnosed, the long‐term impact of cancer on the family caregivers' quality of life (QOL) remains unknown. Thus, the current study aimed: (a) to characterize family caregivers of cancer survivors, (b) to describe the multidimensional aspects of QOL of family caregivers of cancer survivors, and (c) to identify demographic and caregiving experience factors that may play significant roles in the caregivers' QOL around 5 years after the relative's initial diagnosis. Methods. A total of 1218 caregivers participated in the 5‐year follow‐up nationwide QOL Survey for Caregivers. Demographics and caregiving experiences were measured 2 years post‐diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at 5 years post‐diagnosis. Results. Three groups of caregivers were identified: former caregivers due to the recipients being in remission, former caregivers whose recipients were deceased, and current caregivers. Current caregivers reported worst levels of QOL. Bereaved caregivers reported lower levels of psychological and spiritual adjustment than former caregivers whose recipients were in remission. In addition, caregivers' age and stress were consistent predictors of QOL across three caregiver groups at 5 years post‐diagnosis. Conclusions. The findings help to increase evidence‐based awareness of the long‐term impact of cancer on the family caregivers' QOL. Findings also have implications for developing programs, whereby family caregivers in the various phases of caregivership will benefit by improving their QOL. Copyright © 2010 John Wiley & Sons, Ltd.  相似文献   

7.
Background: Conflicting results exist concerning disease knowledge and patients' quality of life (QOL) while there is very limited information concerning the impact of awareness on caregivers' health‐related quality of life. The aim of this study was to explore the influence of disease awareness on both cancer patients and their caregivers during the period of chemotherapy. Materials and Methods: Two hundred and twelve cancer patient–caregiver dyads completed the QOL SF‐36 instrument on the day of chemotherapy. Hierarchical multiple linear regression analysis was performed. Results: Physical component parameters were significantly higher in the family members (p<0.001), while their mental component was lower than cancer patients. Younger patients, females, and of higher educational status were more frequently aware of their disease status while patients with gastrointestinal cancer were more likely to be unaware. Disease knowledge seems to exert a negative influence on patients' physical and mental parameters while lack of awareness affects adversely caregivers' vitality, social function, emotional role, and mental health. Multiple regression analysis confirmed disease awareness affected reversely patients' and caregivers' mental QOL while the counter‐influence of the dyad was revealed. Conclusions: A holistic approach to cancer management should be followed. Patient's treatment is the major medical concern, but health system and professionals should be involved in the mental and physical support of caregivers as well. Tailored interventions that focus on the support of the dyad patient–caregiver should be developed. Copyright © 2010 John Wiley & Sons, Ltd.  相似文献   

8.
The role of spirituality on the psychological health was mostly investigated through studies conducted in terminally ill patients. However, there are not studies investigating the role of religious and spiritual beliefs on psychological state and on burden dimensions in caregivers. The purpose of this study was to investigate the association between spirituality, burden, and psychological state in caregivers of terminally ill cancer patients. Two hundred caregivers of terminally ill patients with cancer were interviewed using Prolonged Grief Disorder 12 (PG‐12), Hamilton Anxiety Rating Scale (HAM‐A), Hamilton Depression Scale (HAM‐D), Caregiver Burden Inventory (CBI) and System of Belief Inventory (SBI‐15R). The caregiver burden was positively correlated with anxiety, depression and PG‐12 scores. The intrinsic spirituality was a significant predictor of the time‐dependence burden (positively associated); and of the emotional burden (negatively associated). In caregivers of terminally ill cancer patients, higher levels of intrinsic spirituality predicted a higher amount of time devote to caregiving, and also protected against the emotional distress linked to providing assistance.  相似文献   

9.
Walsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience and psychological well‐being among Chinese breast cancer survivors and their caregivers. Therefore, this study aimed to examine the direct and indirect relationships between family resilience, breast cancer survivors' post‐traumatic growth (PTG), quality of life (QOL), and their principal caregivers' caregiver burden. A total of 108 breast cancer survivors/principal caregivers pairs completed a cross‐sectional questionnaire survey in a comprehensive cancer of a public hospital in Shandong Province, China. The structural equation modelling (SEM) results showed that family resilience had direct and indirect effects on QOL and caregiver burden, and it was positively related to the PTG of the survivors. The survivors' PTG was positively related to their QOL, and their QOL was negatively associated with caregiver burden. Therefore, a better understanding of how family resilience contributes to PTG and QOL of the survivors and caregiver burden could help clinicians tailor interventions to enhance interventions aimed at improving both survivors' and caregivers' well‐being.  相似文献   

10.
Purpose: Although a growing body of research has documented the quality of life (QOL) of cancer survivors beyond the initial phase of the survivorship, similar knowledge about family caregivers of cancer survivors remains limited. Thus, the current study aimed: (a) to characterize the multidimensional aspects of the QOL of family caregivers of cancer survivors at 2 years after the diagnosis and (b) to predict certain aspects of caregivers' QOL by their demographic and caregiving characteristics. Methods: A total of 1635 caregivers of cancer survivors participated in the nationwide Quality of Life Survey for Caregivers. Multidimensional aspects of QOL were assessed, including mental and physical health, as well as psychological adjustment and spirituality at 2 years post‐diagnosis of their relatives' cancer. Results: Family caregivers reported normal levels of QOL after 2 years post‐diagnosis, except that they were more likely to experience increased awareness of spirituality than do individuals who personally experience a chronic illness. In addition, caregivers' age and income and care‐recipients' poor mental and physical functioning were significant predictors of their QOL at 2 years post‐diagnosis. Conclusions: The findings suggest that younger, relatively poor caregivers who are providing care to relatives with poor mental and physical functioning may benefit from interventions to help in their spirituality and psychological and physical adjustment, 2 years after the initial cancer diagnosis. In addition, older, relatively poor caregivers may benefit from programs to reduce the physical burden of caregiving. These findings have implications for advancing public health research and practice. Copyright © 2009 John Wiley & Sons, Ltd.  相似文献   

11.
Objective: This study aims at describing the emotional and practical experience of a representative sample of Italian non‐professional caregivers when caring for a terminally ill family member and is part of the ‘Italian Survey of the Dying of Cancer’, which involved 2000 adult cancer deaths representative of the whole country. Methods: Information on patients' experience was gathered from non‐professional caregivers by an interview. A specific question was asked about the caregivers' emotional and practical experiences while assisting a terminally ill relative. A content analysis of the open question on caregivers' perceptions was performed on transcribed answers. Three researchers independently generated categories. Subsequently, areas where they differed were reconsidered and an interpretation was agreed upon. Results: Valid interviews were obtained from 1231 non‐professional caregivers. Answers were classified according to the perception of the experience as positive (33.1%), negative (65.1%) or neutral (1.8%). Conclusion: Assisting a family member with cancer in his/her last three months of life is a very strong physical and mental stress for the caregiver. In some cases, this experience is nevertheless perceived as an evolution chance. Health‐care providers should need to develop programs to ensure that family caregivers' needs for information and support are given great importance. Copyright © 2008 John Wiley & Sons, Ltd.  相似文献   

12.
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.  相似文献   

13.
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.  相似文献   

14.
Purpose: To examine the role of friends as caregivers of people with terminal illness. Method: Piloted questions were included in the 2001–2007 random face‐to‐face annual health surveys of 23 588 South Australians on the death of a loved one, caregiving provided, and characteristics of the caregiver and deceased individual. The survey was representative of the population by age, gender, and region of residence. Analyses focused on friends of the deceased loved one, providing daily or intermittent ‘hands on’ care. Logistic regression assessed predictors of home death. Results: Daily ‘hands on’ carers were much more likely to be female and aged between 55 and 64; there was also a younger (p?0.001). Almost a third of caregiving friends were actively involved in care for >12 months. Home deaths were more frequent (32%, p=0.014) when friends were carers, and the rate of palliative care use was higher than when family/others provided care (70 vs 61%). Regression analyses confirmed friends as caregivers as a predictor of home death (OR 1.73: 95%, CI 1.15–2.87). Conclusion: Friends contribute their caregiving: A cohort of younger caregivers may reflect changing social mores as the extended family shrinks and people turn to friendship networks for care and support at the end of life. Copyright © 2010 John Wiley & Sons, Ltd.  相似文献   

15.
ObjectivesFamily caregiver burden among older adults with advanced cancer remains poorly understood. We sought to (1) identify patient factors associated with caregiver burden and (2) examine how amount of time caregiving modifies these relationships.MethodsCross-sectional analysis of baseline data from a cluster-randomized palliative care intervention trial including patients with advanced cancer and their family caregivers, recruited from 17 oncology practices in Pennsylvania. Caregiver burden was measured using Zarit Burden Interview (ZBI-12; range 0–48). Patient factors included functional status (Eastern Cooperative Oncology Group), symptom burden (Edmonton Symptom Assessment Scale), anxiety and depression (Hospital Anxiety and Depression Scale), and quality of life (Functional Assessment of Chronic Illness Therapy – Palliative Care). Using adjusted multivariable regression, we analyzed (1) independent associations between patient factors and caregiver burden and (2) how weekly caregiving hours modified these relationships.ResultsAmong 441 patient-caregiver dyads, mean patient age was 70 ± 10 and caregiver age was 62 ± 13 years. Most caregivers (59%) were patients' partners. Caregivers reported 44.5 ± 53.5 average hours spent caregiving weekly; mean ZBI-12 scores were 10.3 ± 7.3. Worse patient functional status (β = 4.20, p < 0.01), poorer quality of life (β = ?0.07, p < 0.01), more anxiety (β = 0.33, p < 0.01) and depression (β = 0.33, p < 0.01) were associated with higher caregiver burden; caregiving hours did not affect these relationships.ConclusionsIn advanced cancer, poor patient physical and mental health is associated with higher caregiver burden regardless of hours caregiving; future studies should examine interventions tailored to alleviate caregiver burden for this group.  相似文献   

16.
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.  相似文献   

17.
Head and neck cancer (HNC) caregivers are especially vulnerable to poor outcomes because the HNC patients are at high risk for physical and functional impairments. This study examines contextual and stress process variables potentially associated with HNC caregivers’ physical and psychological well‐being. Patient‐caregiver variables included socio‐demographics, primary stressors (caregiving, patient clinical characteristics, HNC‐related symptoms/dysfunction), secondary stressors (caregiver employment, childcare responsibilities and sleep duration <7 hr), appraisal, and response (physical activity). General linear models modeled caregiver well‐being, along with depression and anxiety. A total of 33 patient‐caregiver dyads were included. Most caregivers were female (81.8%) and patient spouses/partners (72.7%). Factors significantly associated with better caregiver physical well‐being included caregiver older age, <2 comorbidities, ≥7 hr of sleep, ≥3 days/week physical activity, and patient swallowing and speech dysfunction. Factors significantly associated with better caregiver mental health functioning were less patient social dysfunction and less perceived caregiving burden. Short nighttime sleep, higher caregiver burden, and <3 days/week physical activity were also significantly related to caregivers’ depression and anxiety. Results suggested caregiver behaviors and perceived burden, along with patient HNC concerns are linked with caregiver well‐being. These behavioral, cognitive, and patient factors should be incorporated into caregiver screening tools or targeted with behavioral interventions to improve caregiver well‐being.  相似文献   

18.
Early referral to hospice and palliative care (HPC) has significant benefits, but little is known about the appropriate time for referral. The purpose of this study of terminal cancer patients was to identify the most appropriate time for referral to HPC. Cross‐sectional correlation study design was used. Participants were the bereaved relatives, who were the adult primary caregivers of the 1,829 terminal cancer patients who died 2–6 months previously in nationwide centres that provide HPC in Korea. A post‐bereavement survey (Good Death Inventory, GDI) of family caregivers was used to assess patients' quality of dying and death. Relative to patients who were in HPC for 3–7 days and HPC for 8–21 days, those in HPC for 22–84 days had significantly higher quality of dying. Propensity score matched comparison between the group hospitalised for 22–84 days (n = 65) and the group hospitalised for 85 days or longer (n = 65) showed no significant differences in all the items on quality of dying and death. Our results suggest that terminal cancer patients who stay in HPC at least for 22 days have improved quality of dying and death.  相似文献   

19.
Objective: This study examined the quality of life (QOL) of caregivers for gastrointestinal (GI) cancer patients, andassociated factors. Methods: A cross-sectional study was conducted at three referral hospitals in Klang Valley, Malaysia.A total of 323 pairs of patients and caregivers from the oncology units of these hospitals completed questionnairesin Malay. The QOL of caregivers was measured using The Malay Caregiver Quality of Life questionnaire. Theindependent variables were caregiver and patient factors, care-related factors, the Caregiver Strain Index-Malay, andthe Multidimensional Scale of Perceived Social Support-Malay. Simple and multiple linear regression analyses wereperformed to determine the factors associated with the QOL. Variables with p < 0.05 were considered significant in themultiple analyses. Results: Female caregivers were 68.1% of the total, and 46.4% caregivers were spouses to cancerpatients. Their mean age was 44.50 (13.29) years old. About 51.7% were of Malay ethnicity. The mean score for QOLwas 80.17 (21.58). Being a male caregiver (beta = 5.165, p = 0.011) and of Indian ethnicity (beta = -9.163, p = 0.001)were strongly associated with caregiver QOL. Male patients contributed higher QOL scores for the caregivers comparedto female patients. There was an inverse relationship among caregiving strain, duration of caregiving, and caregiverQOL. Conclusion: The identification of factors that affect QOL will allow healthcare providers to develop appropriateinterventions. It is important that caregivers be in good health so as not to compromise the care they provide to theirpatients.  相似文献   

20.
This study explored the psychosocial functioning of 10 head and neck cancer patient–caregiver dyads over the radiation/chemoradiation (radiation or combined chemoradiation) treatment period, including the interdependence in patient–caregiver quality of life (QOL). Dyads were recruited prior to or at the initiation of radiation/chemoradiation treatment. Patient QOL decreased across the treatment trajectory, and many caregiver QOL subscales decreased during the middle of treatment. Caregiver burden increased over the treatment trajectory with levels remaining relatively low. Patients and caregivers demonstrated interdependence in QOL toward the middle and conclusion of treatment. Patients demonstrated more depression than caregivers at all time points. Results suggest that both members of the dyad should be targeted for psychosocial interventions during radiation/chemoradiation treatment period.  相似文献   

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