Perceived stress, distress, burden, and caregiving preparedness in family caregivers of patients with hematologic malignancies during the first months of treatment

Background Alzheimer is a pathology that concers the patient and his family having a physical, social, economic and psychological impact. Research on family caregivers is still lacking and little is known about caregivers burden and ist associated factors in Tunisia. The aim of this study were to describe caregiver burden among Tunisian family caregivers of patients with alzheimeŕs disease, its associated factors and ist relationship to social support. Methods We conducted a cross-sectional study among 118 family caregivers during three months at the neurology outpatient departments of two university hospitals. Sahloul, Sousse and Taher Sfar, Mahdia. Using the Zarit Burden Interview-22 (ZBI)items and the Medical Outcome Study-Social Support Survey to assess burden and social support among the caregivers. Results We included 118 caregivers of patients with Alzheimeŕs disease,with an average age of 45±15 years. Women were more predominant with a sex ratio of 0.57.Half of caregivers were the descent of patients. The Mean years of caregiving was 5±3 years with an average of 13 hours ±3 of care assistance per day. The mean ZBI Score was 38.4±18.5 and 16.1% of caregivers percived a severe burden. The mean ZBI Score was higher in female, retired, lowmsocio economic status and in rural area with a statistically significance difference. We found that caregiver burden and social support were highly correlated (p < 0.001,r=-0.41)indicating that a high level of caregiver burden was asoociated with a less level of social support. Conclusions The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. A considerate help and support from helth care and social institutions is required by taking into account the factors that contribute to caregivers burden and considering the importance of social support in alleviating caregiver burden. Key messages The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. High level of caregiver burden was asoociated with a less level of social support.

To examine dyadic intervention effects on family function, caregiver burden, and cancer patients' symptom distress based on intervention features. Six databases were searched from establishment until 31 March 2024. Two authors performed the search process, literature screening, and data extraction individually. The ROB version 2 and GRADE were used to check the methodology and evidence quality, respectively. The data were analyzed via RStudio, and intervention effects were estimated with 95% CIs and SMDs. The statistical heterogeneity was explored through the I2 statistic and P values, and differences in overall effects were deemed statistically significant having the P value < 0.05. Subgroup and sensitivity analyses were also conducted. Thirteen RCTs published from 2007 to 2021 with 1254 participants were included. The results demonstrated that dyadic interventions alleviated cancer patients' symptom distress and family caregivers' caregiver burden, and enhanced family function for the two parties. Subgroup analysis suggested that family-centered interventions in Asian countries enhanced family caregivers' family function. Both the methodology and the degree of evidence were moderate. Dyadic interventions effectively eased cancer patients' symptom distress and family caregivers' burden of care and improved family function. Family-centered dyadic interventions built in Asian countries also significantly enhanced family caregivers' family function. Professionals and nurses should conduct culturally oriented dyadic interventions with advanced approaches to improve intervention effects and families' overall health and optimize oncology nursing systems. CRD42024556442.

IntroductionFamily caregivers of patients suffering from severe psychiatric disorders may present with health problems, lower quality of life, and painful emotions, which can seriously compromise their well-being when they do not receive appropriate professional support.ObjectivesThe aims of this study were to assess the level of burden and resilience in family caregivers of patients with severe mental disorders and to determine associated factors.Methods We conducted a descriptive and analytical cross-sectional study among family caregivers of patients followed at the psychiatry outpatient clinic of the Hedi Chaker University Hospital in Sfax, during the period from February 2022 to July 2022. We used the Connor–Davidson Resilience Scale (CD-RISC) to assess resilience and the Zarit Burden Inventory to assess the level of burden. Higher scores indicate higher resilience and greater burden.ResultsThe sample included 90 family caregivers of patients with severe mental disorders. The average age was 50.68. They were the parents of patients in 40% of cases. Professionally active caregivers accounted for 57.8% of cases. Thirty family caregivers had a somatic disorder history (33.3%).The median age of patients was 42 years. Ten patients (11.1%) were financially independent. The diagnosis was schizophrenia in 68.9% of cases. The mean duration of illness was 16.23 years. Irregular follow-up was noted in 10 patients (11.1%).The mean scores of the Zarit Burden scale and the CD-RISC were 41.86± 10.33 and 58.46± 9.18 respectively.Unemployed caregivers and parents experienced a higher burden (p=0.001, p=0.03 respectively). The level of burden was higher in caregivers taking care of financially dependent patients (p=0.03), with a duration of the disease greater than 15 years (p=0.04), and with irregular follow-up (p=0.008).A low level of resilience in caregivers was correlated with spousal relationship (p=0.001), cohabitation with the patient (p=0.05), widowhood (p=0.01), low level of education (p=0.02), the presence of a somatic disorder history in the caregivers (p=0.04).A negative correlation was observed between CD-RISC and Zarit scores (p=0.04; r=-0.21).Conclusions Family caregivers of mentally ill patients experienced a significant level of caregiver burden, and it was lower in caregivers with higher levels of resilience. Psycho-educational programs directed toward family caregivers are highly recommended.Disclosure of InterestNone Declared

ObjectivesThis study aimed to explore the caregiving preparedness and caregiver burden among Omani family caregivers (FCs) of patients with acquired brain injury (ABI).MethodsThis prospective observational study was conducted at the neurology clinic at Khoula Hospital, Muscat, Oman, from April 2019 to December 2021. Data were collected from 119 FCs and their patients at the time of discharge from the hospital and 16 weeks post-discharge during follow-up care. The questionnaire comprised the Zarit Burden Index, the Preparedness for Caregiving Scale, the Short-Form-12 Health Survey, and a patient symptom scale.ResultsThe FCs were predominantly female (53.8%), and the mean age was 38.27 ± 9.11 years. Most patients had moderate to severe ABI (95.8%) due to stroke (56.3%) and trauma (30.3%). The most common patient symptoms were loss of muscle strength, speech problems, mood problems, memory loss, and change in behaviour. Most FCs were found to have low caregiving preparedness (58%) at discharge, and 19.1% were found to have a high level of caregiver burden at 16 weeks post-discharge. The length of time post-injury (P <0.01), symptom severity (P <0.01) and the FCs’ physical and mental health status (P <0.01 each) were found to be significant predictors of caregiving preparedness, whereas caregiver preparedness (P <0.01), symptom severity (P <0.01), and caregivers’ mental health (P = 0.028) were seen as the predictors of caregiver burden.ConclusionOmani FCs of patients with ABI tend to commence the caregiver role with inadequate preparation, and shortly after, a significant number suffer high caregiver burden. Interventions focusing on the caregiver’s health and training in symptom management may improve the outcomes of FCs and patients.

IntroductionAcute myeloid leukemia (AML) is associated with lower survival and greater unmet need compared with some other hematologic malignancies (HMs). Despite differences in acuteness between AML and other HMs, the burden of family caregivers (FCs) of patients with these malignancies offer similar patient experiences. A targeted literature review was conducted to explore FC burden of patients with AML and HM with and without hematopoietic stem cell transplant (HSCT). Instruments to measure and interventions to address FC burden were identified.MethodsStudies on economic burden and compromised health-related quality of life (HRQoL) associated with FC burden, family affairs, and childcare from 1 January 2010 to 30 June 2019 were identified through database and hand searches. Published English articles on randomized controlled trials or standardized qualitative or quantitative observational studies were included. FCs were those in close familial proximity to the patient (i.e., spouse, parents, children, relatives, other family members, significant others).ResultsSeventy-one publications were identified (AML, n = 3; HM, n = 29; HSCT, n = 39). Predominant burden categories included humanistic (n = 33), economic (n = 17), and interventions (n = 22); one study was classified as humanistic and economic. FCs lack sufficient resources to manage stressors and experience negative psychological, behavioral, and physiological effects. FCs of patients with HMs reported post-traumatic stress disorder, significant sleep problems, moderate-to-poor HRQoL, and negative impacts on family relationships. Instruments designed to measure caregiver burden were generic and symptom-specific. Educational, expressional, and self-adjustment interventions were used to improve FC burden.ConclusionFindings indicate a need for additional research, public health approaches to support FCs, and effective interventions to address FC burden. Minimizing FC burden and improving quality of life may reduce the overall healthcare service use and allow FCs to more effectively fulfill caregiver tasks. Support systems to alleviate caregiver burden may create reinforced integrators, thus positively affecting quality of life and possibly the outcomes of patients.Supplementary InformationThe online version contains supplementary material available at 10.1007/s12325-021-01872-x.

Components and Correlates of Family Burden in Schizophrenia

Objective To investigate the burden level and influencing factors among the family caregivers of elderly hip fracture patients with cognitive impairment, and to provide a theoretical basis for the intervention study on reducing the burden of family caregivers. Methods This study was a cross-sectional survey. A total of 130 elderly hip fracture patients with cognitive impairment who were admitted to a ClassⅢ Grade A hospital in Shanghai from January to November 2018 as well as their family caregivers (n=130) were selected by convenient sampling. Patient and Caregiver General Information Questionnaire, Montreal Cognitive Assessment Scale (MoCA) , Barthel Index Assessment Scale (BI) , Caregiver Burden Inventory (CBI) , Neuropsychiatric Inventory-Questionnaire (NPI-Q) , Simple Coping Style Questionnaire (SCSQ) , Social Support Rating Scale (SSRS) were used in the investigation. Single factor analysis and multiple stepwise regression analysis were used to analyze the influencing factors of caregiver burden. A total of 130 questionnaires were sent out and 121 valid questionnaires were collected, yielding an effective recovery rate of 93.08%. Results The CBI score of family caregivers of elderly hip fracture patients with cognitive impairment was (38.58±16.46) , and the overall level of caregivers was medium. Univariate analysis showed that there were statistically significant differences in the burden level among caregivers of patients in terms of the following 7 factors: different level of cognitive impairment, self-care ability, caregiver's past history, whether living with patients, whether multiple caregivers or not, daily care time and total care time (P<0.05) . Multivariate stepwise regression analysis showed that self-care ability and cognitive impairment, caregiver's NPI-Q pain degree, negative coping style and daily care time were the main influencing factors of family caregiver burden in elderly hip fracture patients with cognitive impairment (R2=0.564, F=29.726, P<0.01) . Conclusions Care burden exists in family caregivers of elderly hip fracture patients with cognitive impairment. Medical workers should provide individual professional support and humanistic care to the caregivers according to the specific conditions of the patients' families, so as to improve the overall burden level of family caregivers. At the same time, it calls on the government, medical institutions and other relevant support policies to improve the care ability of caregivers, shorten their daily care time, reduce their burden, and promote their physical and mental health. Key words: Aged; Hip fracture; Cognition disorders; Caregivers; Burden; Infuencing factors

This study aimed to (1) identify the changes of 5 domains of family caregiver (FC) burden, overall burden, and its subtrajectories when caring for newly diagnosed advanced lung cancer patients during the first 6months following cancer diagnosis; and (2) identify the FC-related and patient-related factors most associated with the overall FC burden and each of its subtrajectories. A total of 150 newly diagnosed advanced lung cancer patient-FC dyads were recruited from a Taiwanese medical center. The overall FC burden was evaluated 4 times: before treatment, and 1, 3, and 6months after treatment. The potential subtrajectory of the caregiver burden was investigated by latent class growth analysis. The FC-related and patient-related factors having the greatest effect on the overall FC burden and its subtrajectories over time were identified by generalized estimating equations. The highest level of burden domain was "Impact on daily schedule" over time. Generally, most of the FC reported a moderate level of overall burden over the investigation period. Three subtrajectories of the overall FC burden over time (% caregivers) were identified: high burden (34.7%), moderate burden (56.0%), and low burden (9.3%), respectively. The self-efficacy of FC was the strongest factor related to the changes of the FC's burden and burden in each subtrajectory. The results support the existing and different types of subtrajectories of the FC's burden. Health care professionals should provide care based on those differences. Further research to test interventions which integrate those important factors related to FC's burden, particularly FC's self-efficacy, is strongly suggested.

Background: Heart failure (HF) is a chronic disease, which is considered an important strategy to support HF patients for lifetime self-management and monitoring of worsening signs and symptoms of patients at home. However, the necessity of management throughout the whole life demands a great deal of challenge and coping of HF patients as well as their family caregivers. Purpose: We aimed to explore the levels of caregiver burden, stress, depression, and quality of life (QOL) in family caregivers of patients with HF, and to identify the relationships among the variables. Methods: A descriptive and exploratory study design was used. After approval of institutional review board, 64 family caregivers of patients with HF were recruited from a cardiovascular outpatient clinic at a university-affiliated hospital in Korea, between September 2018 and January 2019. We assessed the caregiver burden using Montgomery’s scale, stress by heart rate variability measurement, depression using geriatric depression scale, and QOL using WHO-QOL scale. Results: Participants’ mean age was 52.0 years, and the average length of care was 7.5 years. Most of them were the patient’s wife or child (female), and half of them had their own health problems such as hypertension and back pain. The total mean score of caregiver burden, stress, depression, and QOL of family caregivers were 68.5 (out of 95), 39.8 (out of 100), 8.0 (out of 15), and 93.8 (out of 140), respectively. Their QOL showed negative correlations with caregiver burden and stress, and the levels of caregiver burden and stress increased with HF disease period. Conclusion: Healthcare providers should be aware of the importance of support for family caregivers of patients with HF. It is necessary to develop practical strategies to improve the QOL and to alleviate caregiver burden, stress and depression of family caregivers. And ultimately, it will enable them for positive participation in the comprehensive disease management with patients with HF.

Caregiver burden and influencing factors among family caregivers of patients with glioma: A cross-sectional survey

INTRODUCTION:After the psychiatric revolution and implementation of deinstitutionalization policies, caring for people with a mental health condition shifted from psychiatric hospitals to their families. In this way, family caregivers were forced to take full responsibility for taking care of the patients that lead to the occurrence of challenges for them. Only a few studies have investigated the caregiving challenges of family caregivers in patients with schizophrenia.AIM:This study aimed to gain a better understanding of caregiving burden in family caregivers of patients with schizophrenia and its related factors.MATERIALS AND METHODS:This qualitative study was performed based on 12 family caregivers of schizophrenia patients visiting a psychiatric hospital in Tehran in 2018. Sampling was carried out based on the purposive sampling method and was continued until data saturation. All interviews were recorded, transcript, and imported into the MAXQDA software. Then, qualitative content analysis was conducted based on Graneheim and Lundman's five-step method.RESULTS:One theme, two main categories, and five subcategories were identified from the continuous analysis and data comparison. The “Perceived objective burden” as theme included two main categories: “Heavy involvement of caregivers” and “Challenges of the healthcare system”.CONCLUSION:The results of this study indicate that the family caregivers of the patients with schizophrenia encounter many problems related to multiple responsibilities in the caring process and challenges in the provision of mental health-care services. This finding could improve psychiatric and mental health nurses’ knowledge and awareness about caregiving challenges in family caregiver of patients with schizophrenia and related factors.

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. 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. 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. 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.

Effect of family-centered empowerment program on quality of life and caregiving burden in family caregivers of patients with hematologic malignancies: A quasi-experimental study.

Objective: Family caregivers of patients with prostate cancer (PCa) are exposed to the increased risk of care burden. This study aimed to determine the effect of the Family Centered Empowerment Model (FCEM) on the care burden of family caregivers of PCa patients. Methods: This retrospective analysis was conducted at Jiaxing Second Hospital and included data from 120 family caregivers of patients with PCa who were treated from April 2023 to September 2024. The data of 60 family caregivers who received FCEM-based courses were matched in a 1:1 ratio with the data of caregivers who received routine training at the medical center. The two groups were evaluated before and six weeks after intervention using the Caregiver Strain Index (CSI), the Chinese version of the Family Management Scale (FaMM), the Self-Rating Anxiety Scale (SAS) and Self-rating depression scale (SDS), and the World Health Organization Quality of Life Questionnaire (WHOQOL-BREF). Results: The sample consisted of 59.2% female and 40.8% male caregivers, with an average age of 48.5 years. The pre-intervention CSI, FaMM, SAS, SDS, and WHOQOL-BREF scores were similar in the two groups. After the intervention, both groups reported significantly improved CSI, FaMM, SAS, SDS, and WHOQOL-BREF scores; however, the improvement was considerably higher in the FCEM group of caregivers (P &lt; 0.05). Conclusions: FCEM program can efficiently reduce stress, anxiety, and depression of family caregivers, which is beneficial for improving their disease management abilities and quality of life (QOL). doi: https://doi.org/10.12669/pjms.41.7.12281 How to cite this: Jiang W, Yang Y, Shi X, Ni W, Guo X, Cheng H. Efficacy of family centered empowerment model of support on care burden in family caregivers of patients with prostate cancer. Pak J Med Sci. 2025;41(7):2080-2086. doi: https://doi.org/10.12669/pjms.41.7.12281 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

This study aimed to (1) assess the levels of burden and quality of sleep among family caregivers (FCs) of patients with cancer and (2) examine the predictors of burden among FCs of patients with cancer in Jordan. A convenience sample of 111 FCs of patients with cancer has completed the Caregiver Burden Inventory and Pittsburgh Sleep Quality Index to assess the levels of burden and quality of sleep. The mean and (standard deviation) of burden for FCs was 37.9 (16.3) indicating high level of burden. The mean and (standard deviation) of quality of sleep for FCs was 9.1 (4.3) reflecting poor quality of sleep. The multiple linear regression analysis was performed to identify the significant predictors of burden. The study model was able to explain 36% of variance in burden. Burden was significantly predicted by poor quality of sleep for FCs, stage of cancer for patients, side effects of treatment, presence of chronic illnesses among FCs, and the level of education for FCs. Supportive care for FCs, considering all predictors of burden, needs to be considered in order to reduce their burden, which will consequently maintain their caregiving role.