Family Caregivers Of Advanced Cancer Patients Research Articles

Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population.

Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. Two hundred seven dyads were analyzed. FCs were on average 50years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p<0.001), anxiety (86% vs. 67%; p=0.003), caring for the patient alone (45% vs. 24%; p=0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p=0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p=0.004), anxiety (3.02 [1.19-7.71]; p=0.021), caring for the patient alone (2.69 [1.26-5.77]; p=0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p=0.04), and patient's religion (3.90 [1.21-12.61]; p=0.02) were independently associated with caregiver burden. FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.

Psychometric properties of the Chinese version of quality of life in life-threatening illness-family carer version.

BackgroundThe Quality of Life (QOL) in Life-threatening Illness-Family Carer Version (QOLLTI-F) has been proven to be a brief, reliable, and valid instrument for measuring the caregivers’ QOL in western cultures. However, whether it is suitable to be used in Chinese culture is unclear. This study aimed to test the reliability and validity of the Chinese version of (QOLLTI-F-CV).Materials and methodsA total of 202 family caregivers (FCs) of advanced cancer patients from Fujian Provincial hospice care center were investigated using the Chinese version of QOLLTI-F-CV from September 2019 to August 2020. The questionnaire was evaluated using an exploratory structural equation model. Its psychometric properties were examined in terms of factor structure, convergent validity, discriminant validity, internal consistency, and test–retest reliability.ResultsDifferently from the seven-domain original QOLLTI-F, its Chinese version had only three domains including caregiver’s self-feelings, caregiver’s stress, and caregiver’s outlooks. The total variance explanation rate for the domains was 55.4%. The Chinese version fitted well with the structure model (χ2 = 153.932, df = 75, P < 0.001); its comparative fit index (CFI) was 0.971; Tucker–Lewis index was 0.954; and the root mean square error of approximation (RMSEA) was 0.072. The success rate of its convergent and discriminant validity calibration test was 100%. Its Cronbach’s alpha coefficient of the whole questionnaire and three domains was from 0.650 to 0.874, and test–retest reliability was 0.836.ConclusionThe 3-domain QOLLTI-F-CV is a valid and reliable instrument for identifying QOL concerns of FCs of advanced cancer patients in China. The refactoring structure optimally matches Chinese culture and value system well.

Assessment of Caregiving Burden of Family Caregivers of Advanced Cancer Patients and Their Satisfaction with the Dedicated Inpatient Palliative Care Provided to Their Patients: A Cross-Sectional Study from a Tertiary Care Centre in South Asia.

Background and objectives: Family Caregivers (FCs) of advanced cancer patients often suffer from caregiving burden due to stress arising from the responsibility of caregiving. During the course of their patients palliative therapy, FCs quality of life seems to be influenced by their satisfaction with the quality of patient care. In this study, caregiving burden of FCs and their satisfaction with dedicate Inpatient palliative care (IPC) services provided to their patients were studied. Material and methods:This cross-sectional study assessed 211 FCs of advanced cancer patients. Caregiving burden of FCs and their satisfaction with IPC were studied through Zarith Burden Interview (ZBI-12 version) and Family Carer Satisfaction with Palliative Care scale (FAMCARE-2) questionnaires, respectively. Descriptive and correlation analyses were deployed for data analysis. Results:The summative mean ZBI-12 score for FCs was 20.26±5.92, suggesting moderate to high caregiving burden among FCs. Significantly higher scores were observed among FCs who belonged to below poverty line (BPL) families(p=0.025), revealing higher caregiving burden among this lower income group. FCs who were male, unmarried, unemployed, and residing in rural experienced higher caregiving burden. However, it did not lead to a statistically significant difference. The summative mean FAMCARE-2 scale scores was 74.01±4.34, which suggested FCs high satisfaction with the palliative care services provided to their patients. FAMCARE-2 scale scores were lower for BPL families, but it was not statistically significant. Conclusion:FCs from lower-income groups experienced higher caregiving burden. It seems that IPC unit provided satisfactory services to advanced cancer patients, leading to enhancement of FCs satisfaction and consequently quality of life.

Study Protocol for the Evaluation of Individual Psychological Interventions for Family Caregivers of Advanced Cancer Patients.

Background: Both anxiety and depression in family caregivers (FCs) of advanced cancer patients are common, and they have a negative influence on both the FCs and the patients. Some studies suggested that a variety of interventions could alleviate the psychological symptoms of FCs. However, there is no consensus on much more effective methods for intervention, and relatively high-quality research is blank in psychological problems of these population in China. The validity of mindfulness-based stress reduction (MBSR) and psychological consultation guided by the needs assessment tool (NST) in the psychological status of caregivers will be compared in this study to select a more suitable intervention for the FCs of advanced cancer patients in China.Methods and Analysis: A randomized N-of-1 trial would be conducted at the Cancer Hospital, Chinese Academy of Medical Sciences. Fifty eligible FCs of advanced cancer patients will be recruited, and all will receive three cycles of psychological intervention treatment, with each cycle including both of MBSR and psychological consultation guided by the NST. MBSR and psychological consultation guided by the NST will be compared with each other in each cycle, and the intervention sequence will be based on the random number table generated after the informed consent has been completed. Each treatment period is 2 weeks, and the interval between different treatment cycles or treatment periods is 1 week. The self-reported scales are measured at the beginning and end of each treatment period, including the Self-Rating Anxiety Scale (SAS), the Self-Rating Depression Scale (SDS), Distress Thermometer (DT), Zarit Burden Interview (ZBI), Chinese version of the Medical Outcomes Study 12-item Short Form (C-SF-12), and Family Carer Satisfaction with Palliative Care scale (FAMCARE-2).Dissemination: The protocol of the study was approved by the Institutional Review Board of the Ethical Committee of the Cancer Hospital, Chinese Academic of Medical Science. The results will be published in a peer-reviewed medical journal. The study is registered at Chinese Clinical Trials Registry with the trial registration number chiCTR2000033707. This study employs an innovative methodological approach on the effectiveness of MBSR and psychological consultation guided by the NST for psychological status of FCs of advanced cancer patients. The findings of the study will be helpful to provide high-quality evidence-based medical data for psychological intervention of FCs of advanced cancer patients, and guide clinicians on best quality treatment recommendations.

Ethical challenges in family caregivers of patients with advanced cancer \u2013 a qualitative study

BackgroundCaring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC’s perspective.MethodsWithin a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning.ResultsCore phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient’s disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred.ConclusionFindings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress.

The Burden of Caregiving and Sleep Disturbance Among Family Caregivers of Advanced Cancer Patients.

Sleep disturbance may cause physical and psychological problems. The relationship between sleep disturbance and the burden of caregiving among family caregivers (FCs) has not previously been investigated. The purposes of this study were to (1) assess subjective and objective information on the sleep patterns of FCs of advanced cancer patients and (2) identify the components of caregiving burden that are risk factors for sleep disturbance among these FCs. A prospective, cross-sectional study of 176 FCs was conducted. Subjective and objective tools measuring sleep quality and caregiver burden were used. A hierarchical regression model was applied to identify the predictive factors for sleep disturbance among FCs. Approximately 72.2% of FCs experienced sleep disturbance. The major sleep disturbance was frequent "wake after sleep onset" to provide patient care; a nap during the day was necessary. Correlations were strong between caregiver burden and sleep quality. The final regression model, which included subjective and objective burden, predicted 56.6% of the variance in sleep disturbance. Sleep disturbance was common in FCs of advanced cancer patient, and our results demonstrated the relationship between sleep disturbance and caregiving burden. Family caregivers with risk factors for sleep disturbance should be identified and be provided resources for sleep quality improvement.