Patient Caregiver Burden Research Articles

Caring for Older Adults with Depression Receiving Electroconvulsive Therapy (ECT) During the 2020 Pandemic

<h3>Introduction</h3> Caregivers are essential in providing valuable patient information to medical providers, such as recent changes in health, family history, previous hospitalizations, and medication reactions. Caring for elderly patients with a mental illness, in particular, is a unique and challenging job that may lead to caregiver stress and inability to provide proper care. As a result, patients with stressed caregivers are at increased risk of elder neglect and abuse. With limited available research investigating caregiver burden among those caring for patients receiving ECT and the new life challenges presented by the 2020 pandemic, it is more important than ever to take a closer look at the caregivers' experiences. <h3>Methods</h3> Emory's Wesley Woods Geriatric Hospital is one of the busiest ECT services in the country with around 2000 treatments completed every year. In this study, researchers are expecting to enroll and interview 25 caregivers of patients receiving ECT using the Zarit Caregiver Burden Interview. This assessment includes 22 questions assessing the nature and frequency of caregiver emotions when caring for their dependents in order to examine the impact of the patient's condition on caregiver wellbeing. The score ranges from 0 (no burden) to 88 (severe burden) and the questions cover information about the caregivers' current emotional state and struggles. Other objective assessments completed with ECT patients are BDI (Beck Depression Inventory), BDI Suicide, Sheehan Disability Scale, ECCA (Electrocompulsive Cognitive Assessment), GAD-7 (Generalized Anxiety Disorder Scale), and CGI (Clinical Global Impression). The purpose of these interviews is to investigate whether the higher severity of depression in patients correlates with higher levels of caregiver burden and whether the pandemic contributed to caregiver burden. <h3>Results</h3> The Zarit Caregiver Burden Interview has been administered on five patients (n=5) currently undergoing ECT for depressive symptoms. Additional patients are being interviewed in the ECT suite and further data collected will be presented at the 2021 AAGP Annual Meeting. <h3>Conclusions</h3> As the world adjusts to life in the COVID-19 era, caregivers face new challenges in providing care for vulnerable, at-risk populations. Caregivers of patients receiving ECT facilitate frequent COVID testing and limited visitation policies while continuing to provide care and emotional support to patients with advanced age and a mental illness. The main focus of the medical team is typically on patients; however, caregivers fill an essential role in the care of our geriatric patients receiving ECT and it is equally as important to be mindful of caregivers' experiences in order to catch and potentially prevent serious consequences resulting from caregiver burnout. Administrating the Zarit Caregiver Burden Interview can help providers look at the degree of burden in caregivers of patients receiving ECT for depressive symptoms and provide better caregiving strategies during the 2020 pandemic. <h3>Funding</h3> Not Applicable

Characteristics Predicting a High Caregiver Burden in Patients with Vascular Cognitive Impairment: Using the Apriori Algorithm to Delineate the Caring Scenario.

PurposeThe aim of this study was to elucidate the factors and caring scenarios associated with a moderate to severe care burden in the caregivers of patients with vascular cognitive impairment (VCI).Patients and MethodsThis cross-sectional study included 158 patients with VCI and their caregivers who were managed by the dementia collaborative care team at Changhua Christian Hospital, Taiwan. Gender, age, clinical dementia rating, walking ability, behavioral symptoms, and psychological symptoms were the variables from the patients with VCI. Age, marital status, relation to the VCI patient, education, employment status, help of key activities, type of primary care, frequency of care, ZBI (Zarit burden interview) caregiving burden, and caregiver’s mood were the evaluated variables for the caregivers. The Apriori algorithm was used to identify the attributes that resulted in different caregiving burdens from a comprehensive viewpoint of both VCI patients and their caregivers.ResultsA total of 1193 rules were identified with 1134 rules belonging to caregivers with a mild to moderate burden and 59 rules belonging to caregivers with a moderate to severe burden. Seven general rules were created based on a summary of these 59 rules. The results showed that an employed female caregiver who was taking care of her husband alone for ≥6 days per week, and who was helping with all key activities was likely to experience a moderate to severe burden when the patient had VCI. Moreover, if the caregiver had a relatively low education level and expressed an abnormal mood during the assessment, this increased the likelihood of the caregiver having a moderate to severe burden.ConclusionThe caregiver’s gender, relation to the care recipient, education level, mood status, employment status, and care loading were associated with a higher burden of care for caregivers of patients with VCI. Therefore, a dementia care team should provide personalized training for caregivers about the disease, care skills for specific behaviors and psychological symptoms of dementia (BPSD), and strategies to cope with their own feelings. Caregivers should also be referred to appropriate social resources, such as support groups or respite care.

The well-being and burden of caregiving for patients with Parkinson's disease.

Well-being and positive psychological functioning may protect caregivers from experiencing burden. Despite this, research has scarcely explored these variables among caregivers of patients with Parkinson's disease (PD). This research endeavoured (1) to measure differences in distress and well-being between caregivers of PD patients and caregivers assisting individuals suffering from non-neurodegenerative age-related health problems (controls); and (2) to evaluate the predictors of well-being, distress and caregiver burden in the total sample of caregivers. The study has a cross-sectional design. 100 caregivers were recruited from centres for ageing individuals. 50 caregivers assisted patients with PD, while the other 50 were considered as controls. Participants completed self-report questionnaires concerning psychological well-being, life satisfaction, post-traumatic growth, distress and symptomatology. Multiple regression analysis was performed on the dataset of the total sample (N=100), exploring the possible predictors and correlates of caregiver burden. Caregivers who assisted patients with PD significantly experienced more depression, more distress and less well-being when compared to controls. The main significant correlates of caregiver burden were older age, less psychological well-being and more depression. Parkinson's disease caregivers reported more impairment in psychological well-being and higher rates of distress. In the total sample of caregivers (of patients with PD and of healthy individuals), depression and specific areas of well-being (environmental mastery, personal growth) correlated to the burden of caregiving. Psychosocial interventions focused on these dimensions may help caregivers to better cope with the possible burden of the assistance.

Assessing burden and its determinants in caregivers of chronic kidney disease patients undergoing haemodialysis.

Caregivers face a lot of adversities while supporting their near ones undergoing haemodialysis, and their burden is often ignored by health professionals. The paucity of research in the Indian context has kept their needs out of sight. To explore the level of burden in the caregivers of patients with chronic kidney disease (CKD) undergoing haemodialysis and to assess whether patient related variable affects the burden. Fifty-one patients and their caregivers from two dialysis units in Sikkim, India, were assessed cross-sectionally. The Zarit Caregiver Burden Scale (ZCBS) was administered to measure the caregiver burden. The Patient Health Questionnaire-9 (PHQ-9) and the Charlson's Comorbidity Index (CCI) assessed the patient's depression and medical comorbidities, respectively. Descriptive analysis was done for the sociodemographic and clinical variables. Chi-square test was used to find the association between the categorical data. Kruskal-Wallis tested the association between categorical and quantitative variables. Mean age of patient was 46.13 (±13.15) years and that of the caregiver was 44.78 (±12.14) years. 68.6% of caregivers had mild to severe levels of caregiver burden. Caregivers who were unemployed and educated till secondary school were more likely to report caregiver burden. Female gender, older caregivers, and caregivers attending patients with a longer history of haemodialysis reported a more severe burden. The level of burden in caregivers of CKD patients is significant and is affected by various factors, which, in turn, also affects patient's wellbeing. Further research in this area is needed in our country for better management of patients and policymaking.

Determinants of Medical Direct Costs of Care among Patients of a Memory Center.

Alzheimer's disease and related diseases (ADRD) are a major cause of health-related cost increase. This study aimed to estimate the real medical direct costs of care of patients followed at a memory center, and to investigate potential associations between patients' characteristics and costs. Cross-sectional analyses conducted on matched data between clinical data of a cohort of patients and the claims database of the French Primary Health Insurance Fund. Memory center in France. Patients attending a memory center with subjective cognitive complaint. Medical or nonmedical direct costs (transportation) reimbursed by the French health insurance during the one year after the first memory visit, and socio-demographic, clinical, cognitive, functional, and behavioral characteristics were analyzed. Among 2,746 patients (mean ± SD age 79.9 ± 8 years, 42.4% of patients with dementia), the total direct cost was on average € 9,885 per patient during the year after the first memory visit: € 7,897 for patients with subjective cognitive complaint, € 9,600 for patients with MCI, and € 11,505 for patients with dementia. A higher functional and cognitive impairment, greater behavioral disorders, and a higher caregiver burden were independently associated with a higher total direct cost. A one-point decrease in the Instrumental Activities of Daily Living score was associated with a € 1,211 cost increase. The cost was higher in patients with Parkinson's disease, and Lewy body disease compared to patients with AD. Diabetes mellitus, anxiety disorders and number of drugs were also significantly associated with greater costs. Higher real medical direct costs were independently associated with cognitive, functional, and behavioral impairment, diabetes mellitus, anxiety disorders, number of drugs, etiologies as well as caregiver burden in patients attending a memory center. The identification of factors associated to higher direct costs of care offers additional direct targets to evaluate how interventions conducted in patients with NCD impact direct costs of care.

Caregiver Burden in Patients with Pulmonary Hypertension.

Both quality of life (QoL) and caregiver burden are essential constructs in patients with pulmonary hypertension (PH) however; their relationship has never been investigated before. The aim of this study was to evaluate if there was any relationship between patients' QoL and caregiver burden. Patients with PH and their caregivers were included. Patients' age, sex, World Health Organization (WHO) functional class, systolic pulmonary arterial pressure (sPAP), and six-minute walk distances (6MWD) were recorded. Patients' QoL was assessed using emPHasis-10 and caregiver burden with the Zarit Caregiver Burden Scale. 72 patient-caregiver dyads were included. Caregiver burden was significantly correlated with the QoL(r = 0.39 p < .003), but was not correlated with other clinical parameters. Patients' QoL showed significant negative correlation with the 6MWD(r = -0.46 p < .005). There is a moderate correlation between QoL and caregiver burden. Clinical parameters influence QoL, but they do not affect caregiver burden.

Caregiver burden of patients with heart failure with a left-ventricular ejection fraction (LVEF) less than or equal to 60%: a cross-sectional survey in the EU

Abstract Background and purpose The majority of patients with heart failure (HF) have difficulties in independently carrying out activities of daily living and hence, require support from caregivers (CGs). This study assessed the quality of life (QoL) of CGs of HF patients with sub-normal LVEF (≤60%). Methods A cross-sectional survey of HF patients and their CGs was conducted in France, Germany, Italy, Spain and the UK. Cardiologists and primary care physicians completed patient record forms (PRF) between June and November 2019. Caregivers of the same patients were invited to complete a caregiver self-completion survey, which included the Family Caregiver QoL Scale (FAMQOL) and EQ-5D. Patient demographics were derived from PRFs. Results 361 CGs (73.1% female, mean age: 58.8 yrs) and HF patients (39.9% female, mean age: 71.2 yrs) were included. 58.2% of the CGs were spouses, 23.4% a child of the patient. On average, CGs devoted 20 hrs/week in the care of HF patients; this CG time increased from 12 to 26 hrs/week with NYHA class I to III/IV of the HF patient. Further, anxiety/stress was experienced overall by 29/31% of CGs which increased from 27/17% for NYHA I to 40/41% for NYHA III/IV of the HF patient (Table 1). Conclusions Caregivers of patients with HF and LVEF ≤60% spend a significant amount of time to provide daily support to HF patients. Patients with progressive disease were older, more polymorbid and had a higher disease duration. These factors likely contributed towards increased caregiver burden of HF patients with increased NYHA class. Funding Acknowledgement Type of funding source: Private company. Main funding source(s): Novartis Pharma AG

Predictors of caregiver burden in patients with neurologic Wilson disease.

ObjectivesCaregiver burden in neurologic Wilson disease (NWD) has received little attention. We investigated predictors of caregiver burden in Chinese NWD patients.MethodsParticipants in this retrospective study were NWD patients admitted to The First Affiliated Hospital of Anhui University of Traditional Chinese Medicine from 1 August to 31 December 2019. Sociodemographic information was recorded for caregivers and NWD patients. Caregiver burden was evaluated using the Caregiver Burden Inventory (CBI). Cognitive impairment, functional problems, depression and anxiety were evaluated by professional interviewers. Path analysis was used to evaluate predictors of CBI scores.ResultsSixty NWD patients were enrolled (mean age: 21.35 ± 4.89 years; mean NWD duration: 7.85 ± 3.11 years). The mean CBI score was 52.00 ± 17.16. Care duration had a significant direct effect on CBI score after controlling for confounders (r = 0.493). Cognitive impairment (r = −0.426), functional problems (r = 0.581), depression (r = 0.349) and anxiety (r = 0.317) had significant indirect effects on CBI score.ConclusionCaregivers of NWD patients may experience a medium level of caregiver burden. NWD duration, cognitive impairment, functional problems, depression and anxiety in NWD patients may be useful predictors of caregiver burden.

Effect of an Educational Program on Care Burden and Quality of Life for Caregivers of Patients Diagnosed with Alzheimer’s Disease

Purpose: This study was undertaken to determine the effect of planned education upon the quality of life and care burden for caregivers of patients diagnosed with Alzheimer’s disease. Materials and Methods: This study, a planned pre-test post-test model with semi-experimental design, was undertaken with the caregivers for 60 patients diagnosed with Alzheimer’s disease. Data were collected using Information Request Form, Zarit Burden Interview (ZBI) and WHOQOL-BREF Quality of Life Scales. Caregivers were divided into groups of 10 participants each and a 45–60 minute planned educational program on caring for Alzheimer’s patients was provided to each group in 5 sessions. ZBI and Quality of Life Scales were again administered to the caregivers in the 1st, 2nd, and 3rd months following completion of the education. Results: Results were assessed using percentage distributions, Chi-square test, and Pearson Correlation analysis. Care burden of caregivers for Alzheimer’s patients decreased following the planned education and there was a significant and negative correlation between care burden and quality of life. As care burden decreased, quality of life increased (p&lt;0.05). Conclusion: A planned educational program reduced the care burden experienced by caregivers for Alzheimer’s patients and affected their quality of life positively. It is recommended that planned education programs be reinforced with continuous counseling services in order to minimize the care burden experienced by these caregivers and to maximize their quality of life. Keywords: Alzheimer disease; Caregiver; Care burden; Quality of life DOI: 10.7176/JHMN/75-06

Approaches to Assessing Burden in Caregivers of Patients with Cirrhosis.

Background and Aims: Being a caregiver for a patient with chronic liver disease (CLD) can be burdensome mentally, emotionally financially, and physically. The aim of this study was to systemically review the available tools and propose tools that can comprehensively evaluate caregiver burden for individuals caring for patients with CLD.Methods: We searched the PubMed database for all studies on the impact of patients with CLD on caregiver burden without timeframe restriction. Eligible studies included cohort studies, review studies, or cross-sectional studies. The number of patients and caregivers was isolated from each paper. Studies in the same categories were isolated and statistically compared.Results: A total of 13 studies meeting our inclusion criteria as stated in the methods sections were included. In total, 2528 caregivers were taking care of 2003 patients with CLD. Women made up the majority of caregivers at 78.2%, 95.7% of whom identified as the patient’s spouse. Caregiver strain index is one of the most comprehensive tools; however, the questions are very general and do not fully elucidate financial strain. Beck depression and anxiety were correlated (p=0.0001), and both depression and anxiety were correlated with perceived caregiver burden (PCB) and Zarit Burden Interview (ZBI) (p=0.002). Depression scale correlated with Interpersonal Support Evaluation – Short Form, and Model for End-Stage Liver Disease score correlated with ZBI and PCB (total and in most domains; p=0.001). Patient’s poorer cognitive performance correlated with higher ZBI and PCB (employed patients had higher cognitive performance and lower ZBI and PCB).Conclusions: Caregiver burden remains poorly understood due to the lack of uniformity in the assessment tools used to evaluate caregiver burden. None of the tools used to evaluate caregiver burden are comprehensive; however, most tools correlate statistically in the ability to identify caregiver burden. A comprehensive tool is lacking for identifying caregiver burden in patients with CLD.

Effect of lower extremity amputation on caregiving burden in caregivers of patients with diabetic foot: Prospective cohort study.

Lower extremity amputation as a treatment of diabetic foot ulcer is probably a major burden for the patient's family and friends, who typically act as caregivers and support the patient in coping with the physical disabilities and emotional distress. In the present prospective study, we investigated the effects of different lower extremity amputation levels for diabetic foot ulcer treatment on caregivers of patients with diabetes using the Zarit Burden Interview (ZBI-12) scale. Patients with diabetic foot ulcers who underwent unilateral major amputation (above-below knee) and minor amputation of foot (heel sparing) and their caregivers were requested to volunteer to participate in this study from June 2016 to December 2018. The ZBI-12 form was completed immediately preoperatively and 3 and 6 months after postoperatively. In the minor amputation group, the mean age of the 51 patients was 72.1 years. In the major amputation group, the mean age of the 88 patients was 73.7 years. Both groups of caregivers of patients with minor amputation and major amputations showed a significant improvement in ZBI-12 score when compared preoperatively and at 3- and 6-month follow-up visits. The mean ZBI-12 score was significantly higher in the major than in the minor amputation group in preoperative and all postoperative visits. The absence of the ankle joint in the below- or above-knee amputation renders it more difficult for the amputee to quickly learn the use of prosthesis, thereby increasing the burden of the patient and caregivers. We found that lower extremity amputation for the treatment of chronic diabetic foot ulcers has significantly favourable effect on the caregiver burden, and thereby heel sparing was considerably more effective for the caregiver burden.

Health Status and Burden in Caregivers of Patients With Multimorbidity.

Caregivers of patients with multimorbidity are important for improving patient outcomes. This descriptive study examines health status and burden of 22 caregivers of patients with multimorbidity discharged from the hospital who were enrolled in a self-management intervention study. Caregivers did not receive an intervention. Factors that increased caregiver burden were financial issues, caring for others (e.g., family members), and home obligations. Caregivers averaged between 2 and 3 chronic conditions themselves. Perceived caregiver burden remained unchanged over time for the caregiver whether the patient was in the intervention or the usual care group. We recommend rigorous research with larger samples to better understand the caregiver role, needed resources and potential interventions to mitigate caregiver burden in the multimorbid population during and after care transitions. Longitudinal studies that include assessment and interventions for the caregivers of patients with multimorbidity are needed.

Defining the concept of family caregiver burden in patients with schizophrenia: a systematic review protocol

BackgroundSince the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia.MethodsThe databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed.DiscussionThe result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend.Systematic review registrationPROSPERO CRD42018099372

Quality of Life and Caregiver Burden in Patients and Their Caregivers Undergoing Outpatient Autologous Stem Cell Transplantation Compared to Inpatient Transplantation

Quality of Life and Caregiver Burden in Patients and Their Caregivers Undergoing Outpatient Autologous Stem Cell Transplantation Compared to Inpatient Transplantation

Observation of Patient and Caregiver Burden Associated with Early Alzheimer's Disease in the United States: Design and Baseline Findings of the GERAS-US Cohort Study1.

Background:Alzheimer’s disease (AD) is one of the costliest diseases in the United States.Objective:To describe aspects of real-world patient and caregiver burden in patients with clinician-diagnosed early AD, including mild cognitive impairment (MCI) and mild dementia (MILD) due to AD.Methods:Cross-sectional assessment of GERAS-US, a 36-month cohort study of patients seeking care for early AD. Eligible patients were categorized based on study-defined categories of MCI and MILD and by amyloid positivity [+] or negativity [–] within each severity cohort. Demographic characteristics, health-related outcomes, medical history, and caregiver burden by amyloid status are described.Results:Of 1,198 patients with clinician-diagnosed early AD, 52% were amyloid[+]. For patients in both cohorts, amyloid[–] was more likely to occur in those with: delayed time to an AD-related diagnosis, higher rates of depression, poorer Bath Assessment of Subjective Quality of Life in Dementia scores, and Hispanic/Latino ethnicity (all p < 0.05). MILD[–] patients (versus MILD[+]) were more medically complex with greater rates of depression (55.7% versus 40.4%), sleep disorders (34.3% versus 26.5%), and obstructive pulmonary disease (11.8% versus 6.6%); and higher caregiver burden (Zarit Burden Interview) (all p < 0.05). MILD[+] patients had lower function according to the Functional Activities Questionnaire (p < 0.001), yet self-assessment of cognitive complaints across multiple measures did not differ by amyloid status in either severity cohort.Conclusions:Considerable patient and caregiver burden was observed in patients seeking care for memory concerns. Different patterns emerged when both disease severity and amyloid status were evaluated underscoring the need for further diagnostic assessment and care for patients.Study Registry:H8A-US-B004; ClinicalTrials.gov: NCT02951598.

Impact of loss of independence in basic activities of daily living on caregiver burden in patients with Alzheimer's disease: A retrospective cohort study.

To investigate the association between decline of basic activities of daily living (ADL) in each dimension and change in caregiver burden in patients with mild-to-moderate Alzheimer's disease. This retrospective study included 117 outpatients with Alzheimer's disease who presented to the Memory Clinic at the National Center for Geriatrics and Gerontology in Japan between September 2010 and April 2014 (mean age 77.3 ± 6.4 years; 68.6% women). Patients and their caregivers completed comprehensive geriatric assessment at baseline and at the 3-year follow up. Caregiver burden was assessed using the Japanese version of the Zarit Burden Interview. ADL were assessed by the Barthel Index. Among patients with full points on each subitem of the Barthel Index at baseline, incident ADL decline was defined as a loss of at least 5 points at the 3-year follow up. Other confounding factors including demographic data, cognitive function, vitality, and behavioral and psychiatric symptoms of dementia were also assessed. The longitudinal relationship between incident ADL decline and changes in caregiver burden was evaluated by multivariate linear regression, adjusted for confounding variables. In descending order, declines in ADL at 3 years were noted in bathing (25.4%), bowel control (25.4%), grooming (22.9%) and bladder control (22.9%). On multivariate analyses, ADL declines in feeding (b = 17.2, P < 0.01) and bathing (b = 11.0, P = 0.02) were significantly associated with increased caregiver burden. Incident ADL declines in feeding and bathing are significant risk factors for increased caregiver burden in patients with Alzheimer's disease. Geriatr Gerontol Int 2019; 19: 1243-1247.

Sobrecarga del cuidador del paciente con tratamiento de diálisis peritoneal

Introducción: La experiencia de ser cuidador produce sensación de satisfacción por el cuidado y búsqueda de bienestar del paciente, pero desafortunadamente la duración del tiempo, técnica y procedimiento que implica la Diálisis Peritoneal produce sobrecarga en el cuidador, sumado a esto la dependencia del paciente según su edad, estado mental y físico. El objetivo fue determinar el nivel de sobrecarga del cuidador del paciente con tratamiento de Diálisis Peritoneal en una zona aledaña a la ciudad de Chiclayo-Perú. Material y Método: Estudio cuantitativo, diseño no experimental transversal descriptiva, el muestreo fue aleatorio simple sin reposición, conformado por 75 cuidadores seleccionados por criterios de inclusión y exclusión. La recolección de datos se realizó mediante el cuestionario de sobrecarga de cuidadores de pacientes de Diálisis Peritoneal, previamente validado por tres expertos y con una confiabilidad de 0,847 (alfa de Cronbach). Los datos se procesaron con el software spss versión 22, en todo momento se respetaron los principios éticos y criterios de rigor científico. Resultados: 94,7% de los cuidadores presentaron un nivel de sobrecarga leve, se evaluó tres dimensiones: la dependencia del paciente 53,3%, auto desempeño del cuidador 96,0% y las repercusiones socio familiares 78,7%.Conclusión: Podemos concluir que, el nivel de sobrecarga del cuidador es leve, y el perfil más prevalente respecto a los datos sociodemográficos de los cuidadores es mujer adulta, esposa del paciente y que vive con el paciente.

Relationship Between Caregivers’ Burden of Schizophrenia Patient with Their Quality of Life in Indonesia

This study aims to identify the relationship between caregiver burden of patients with schizophrenia and caregiver quality of life (QOL). A cross sectional study involving 222 caregivers patients with schizophrenia was conveniently recruited from the psychiatric clinic of a mental health hospital in Malang Indonesia. Caregiver Burden Inventory Scale and Schizophrenia Caregiver QOL was used to assess the level of burden and QOL among the caregivers respectively. Descriptive statistics was used to determine caregivers’ socio-demographic characteristic and the level of caregivers’ burden and QOL. Spearman Rho correlation test was conducted to determine the relationship of caregiver burden and caregiver QOL. About 59.6% of schizophrenia caregivers experienced moderate to severe level of burden. The results showed that there was a significant, strong and negative relationship between the caregiver burden and QOL (r = − 0.434, p < 0.001). Most of the participants reported emotional burden and moderate QOL especially psychological and physical QOL, well-being, relationships with friends, and material burden. The findings indicated the higher the caregiver burden, the lower the QOL experienced by family caregivers of individuals with schizophrenia. It is necessary to improve the mental health nursing services for schizophrenia caregivers by providing mental health counseling, and developing support groups for them.

An exploration of symptom burden and its management, in Saudi Arabian patients receiving haemodialysis, and their caregivers: a mixed methods study protocol

BackgroundGlobally 10% of the population worldwide are affected by chronic kidney disease (CKD), making it one of the most prevalent chronic diseases. Several studies have highlighted that the symptoms of CKD have a significant impact on patients. A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms often remain under-recognised and largely untreated; however, patients often create a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving haemodialysis (HD) and their caregivers, particularly in Saudi Arabia, therefore, this study aims to explore symptom burden and its management amongst patients receiving HD in addition to caregiver burden.MethodA mixed methods, sequential, explanatory design consisting of two phases: phase 1 involves a cross-sectional study design with a planned convenience sample size of 141 patients who will be recruited from King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms will be measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 130 caregivers will complete the Arabic version of the Zarit Burden Interview (ZBI-22) to identify the level of burden in the caregivers of patients on maintenance HD. Phase 2 of the study is a qualitative descriptive design involving semi-structural interviews with 15 eligible patients currently receiving HD. The selection of participants for interviews will be based on the patients’ total CKD-SBI scores with five individuals recruited from the lowest, median and highest percentiles. Additionally, 15 caregivers of the patients to be interviewed, will also be recruited and interviewed.DiscussionThis study focuses on a wide number of physical and psychological symptoms experienced by patients receiving HD. It will also focus on the effective management strategies patients employ to help reduce their perceived symptoms. Burden in caregivers of patients receiving HD will also be explored. Furthermore, the association between symptom burden and caregiver burden will be investigated. Findings from this study will provide evidence to help health care providers to develop effective interventions to assess and manage symptoms in patients receiving HD.

Determining the caregivers' burden in caregivers of patients with mental illness.

Objective:To examine the factors associated with caregivers’ burden in individuals providing care to family members suffering from serious mental illness.Methods:This Cross Sectional Study was carried out at Armed Forces Institute of Mental Health, Rawalpindi, from May 2015 to December 2015. A purposive sample of 120 family caregivers (60 males and 60 females, age range= 18-65) who were taking care of patients with serious mental illness (i.e. Major Depressive Disorder, Bipolar Disorder & Schizophrenia) for at least one year were recruited from the hospital and assessed through Zarit Burden Interview (ZBI) and Brief COPE inventory. The decline in functional status, and diminished physical capacity compromising the independent living of the care recipient was assessed through Katz Index of Independence in Activities of daily living (ADL) and Lawton Instrumental activities of daily living (IADL).Results:The results suggest that the longer the duration of illness (F=25.71, p < 0.01), with increased impairments of care-recipients, (decline in functional status, F=21.33, p < 0.001; diminished physical capacity F =32.41, p < 0.001) the more the burden experienced by the caregivers. Moreover, caregivers who were married (t=-2.98, p < .01), less educated (t =5.48, p < .01), lived in rural area (t = -7.99, p < .01), had lower monthly income (t = -4.95, p < .01) provide longer hours of caregiving (F=19.12, p < 0.001) and used avoidant coping behavior (F= 56.37, p < 0.001) reported significantly higher caregiver burden than caregivers who were unmarried, more educated, lived in urban area and had better income.Conclusion:The results of study demonstrate that caring for family members with serious mental illness impacts the caregivers’ wellbeing. It, therefore, highlights the need for support and counseling services for the caregivers to reduce the burden of caring.