Factors associated with caregiver burden among caregivers of patients with cancer in a hospice setting (original) (raw)
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Integrative Cancer Science and Therapeutics
The study aims were to assess the level of burden among caregivers of patients diagnosed with cancer and to examine patient and caregiver variables associated with high levels of burden. A descriptive cross sectional study was performed at the Psychiatric Department in the University Hospital of Monastir, Tunisia. The study included a total of 138 dyads of patients and their corresponding family caregivers. The dyads were convoked then examined. The data were assembled using questionnaires elaborated by the research team and caregiver burden was measured with the Zarit Burden Interview. Patients completed the Hospital Anxiety and Depression Scale and the KATZ Index of Activities of Daily Living. About one third of the caregivers experienced high levels of burden. The scores at the Zarit Burden Interview ranged from 15 to 70 and mean score was 48.7 (SD =18.2). This negative outcome of caregiving was found to be related to both patients' and caregivers' variables. Statistically, the factors associated to high levels of burden among family caregivers that are linked to the patient's profile were: male gender, age between 61 and 70 years old, having other medical morbidities, necessitating pre and post-operative chemotherapy, having intermediate to high levels of anxious or depressive symptoms and a severe functional impairment. Caregivers who helped their patients to accomplish many daily activities were found to be high-burdened. The caregiver variables that were found to be related to high levels of burden among caregivers were: male gender, age between 40 and 59 years old, employed full-time status, being the child of the patient, having another member of the family needing daily care, caregiving period more than one year, and not resorting to a professional healthcare at home. The current study demonstrates the importance of a systematic assessment and early intervention procedures needed in order to detect vulnerable caregivers.
Death studies, 2016
The aim of this study was to evaluate caregiver burden and quality of life (QoL) in active treatment settings and hospice care for 76 family caregivers of advanced cancer patients, using the Medical Outcomes Study Short Form and the Caregiver Burden Inventory. Compared to the active group, the hospice group reported significantly lower QoL scores in mental component summary score and higher scores in general health subscale and in physical component summary score. Future research needs to further investigate the complexities of caregivers' needs, especially in the emotional and mental domains, and offer effective, clinically proven interventions.
Palliative Medicine Reports
Background: The family caregiver (FCG) is with the patient from diagnosis till the end of life. The accumulated burden has a negative impact on the caregiver's quality of life and on his physical and emotional well-being. Objective: To quantify the burden of care for a patient with palliative needs, and to compare the burden experienced by caregivers for nononcological patients with those for cancer patients. Design: Prospective longitudinal study. Setting/Participants: One hundred forty patient-primary caregiver pairs participated in the study, which were separated into two groups: those who cared for patients with nononcological diseases (n = 63) and those who cared for patients with cancer (n = 77). Measurements: The burden measurement was assessed with Burden Scale for FCGs. Results: The average score of the FCG's burden was significantly higher in the nononcological group (45-14.45 vs. 36.52-15.05; p = 0.001). In the case of caregivers for cancer patients it is noticed that the caregivers' burden decreases after the intervention of the specialized team (45.58-14.11 at T1 vs. 36.65-16.10 at T2; p = 0.001). The burden values for caring for patients with nononcological diseases remained in the plateau, indicating incremental caregiver adaptation, although the rising trend is still present toward the end of the term (47.43-13.32 vs. 56.69-15.44; p < 0.001). Conclusions: The burden dynamics are different depending on the patient's disease, duration of care, degree of dependence, number of comorbidities, and on the intervention of the palliative care team that ensures the support of the caregiver for the palliative patient.
Determining the Care Burden of Caregivers Taking Care of Patients with Cancer
2016
This descriptive study was conducted in an attempt to determine the caregiving burden of caregivers taking care of patients with cancer. The study was performed with 80 patient relatives taking care of patients with cancer at Ali Osman Sönmez Oncology Hospital. Regarding the study participants, 87.5% stated that they volunteered in caregiving, 73.75% had an interrupted sleep, 80% were affected in terms of family life, 56.25% business life and 80% emotional life. Comparing the care giving burden of women, as well as those who were older than 51 and were married according to their gender, age and marital status, we determined significant differences. There was a significant difference in caregiving burden in those living with their patients for 5 years and those taking care of their partners according to the variables of caregiving. The study results show that the caregiving burden is mainly put on partners. In order to decrease the personal burden, it is required to share the care in...
Palliative and Supportive Care, 2010
Objective:Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients' quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden.Method:Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents' caregivers were asked to complete an after-death interview regarding the quality of care that the patient received.Results:There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that...
Factors associated with high burden in caregivers of older adults with cancer
Cancer, 2014
Older adults with cancer are vulnerable to functional decline, which places greater onus on caregivers. Few studies have prospectively examined burden in caregivers of older cancer patients. The objective of this study was to determine the factors associated with high caregiver burden. In total, 100 caregivers of patients aged ≥65 years with cancer, who were recruited at a single institution, completed questionnaires gauging their perception of the patient's physical, emotional, and social health. The association between these items, cancer-related factors, sociodemographic factors, and caregiver burden (measured using the Caregiver Strain Index [CSI]) was determined through multivariate analysis. The median patient age was 70 years (range, 65-91 years), 70% of patients had advanced disease, and 98% were receiving treatment. Caregivers were mostly women (73%), spouses (68%), and lived with the patient (79%). The median amount of care provided was 10 hours per week. The mean CSI ...
Burdens among caregivers of older adults with advanced cancer and risk factors
Asian Pacific journal of cancer prevention : APJCP, 2014
Family caregivers of older cancer patients face many challenges in managing illness. The burden impacts physical, emotional, spiritual, and social health. The objective of this study was to identify burden among caregivers of older patients with advanced cancer, and associated factors. Caregivers of older cancer patients were randomly interviewed from March-September 2012. Information on baseline characteristics and caregiver burden using the Zarit Burden Inventory (ZBI) was collected. Descriptive statistics were used to analyze baseline data, with univariate and multiple linear regression to analyze factors associated with higher burden. One hundred and fifty participants were assessed. The mean ZBI was 19.2 ± 12.9 (95%CI, 17.1, 21.2). Two-thirds of caregivers reported no burden (63%) and the main impact variable on ZBI was guilt. High burdens were associated with single caregiver, relationship with the patient as siblings, presence of migraines, and cancer types of the patients. C...
Canadian Medical Association Journal, 2004
The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score ≤ 50). Results: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. Interpretation: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.
Associations between advanced cancer patients' survival and family caregiver presence and burden
Cancer Medicine, 2016
We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival.