Care Burden Of Caregivers Research Articles

How to collect non-medical data in a pediatric trial: diaries or interviews

BackgroundNon-medical data, such as the amount of time that patients and caregivers spend managing their condition, may be relevant when assessing therapeutic strategies. For chronic pediatric conditions, the time that patients and caregivers spend in seeking and providing care (which are the indirect costs in an economic evaluation) can be significantly different depending on the treatment arm. To explore methods for collecting information on the care burden for caregivers and patients, we investigated whether a patient diary provided additional information compared to retrospective investigator-led interviews and whether a diary that was completed intermittently produced more or less information than a diary completed continually. The main objective of this study was to identify which type of data collection was most effective for measuring the time spent by caregivers and for estimating indirect treatment costs over 9 months.MethodsStart-In! is a randomized controlled trial comparing the efficacy of three strategies of real-time continuous glucose monitoring for 12 months in children and adolescents with type 1 diabetes. We designed an ancillary study to assess methods of collecting information on the time spent by patients and caregivers in managing their condition (indirect costs). Data were entered retrospectively in case report forms (CRFs) by investigators during quarterly follow-up visits, which were supplemented with diaries completed prospectively by children or caregivers either continuously or intermittently. Data about absences from school and work as well as the time that caregivers spent on diabetes care were collected and the three collection methods were compared.ResultsAt the end of the 9-month study, 42% of the study participants failed to return their diary. For the diaries that were received, less than 10% of expected data were collected versus 82% during investigators'interviews. Based on all the information collected, we calculated that over 9 months, caregivers lost on average 3.9 days of working time (€786) and 4 days of personal time, i.e. the equivalent of €526, and spent around 15 min of time on care per day, i.e. the equivalent of €1700.ConclusionsThe CRFs completed by investigators during quarterly visits cannot be replaced by a diary. Completing the diaries appeared to represent an important additional burden to children and their caregivers, and the diaries provided little additional information compared to investigators’ entries in the CRF.Trial registrationClinicalTrials.gov, NCT00949221. Registered on 30 July 2009. Registry name: Study of Insulin Therapy Augmented by Real Time Sensor in Type 1 Children and Adolescents (START-IN!).

Caregiver Burden and Its Associated Factors in Caregivers of Children and Adolescents with Chronic Conditions.

ABSTRACTBackground: Few studies have been conducted on the burden of care in caregivers of children with chronic illnesses. This study investigated the burden of care and associated factors in first-degree caregivers of children and adolescents with chronic conditions. Methods:A cross-sectional study was conducted from June to September 2017 on 385 first-degree caregivers of children and adolescents with chronic disorders. Data were collected using the Zarit burden inventory which assesses the caregiver burden in physical, psychological, economic, and relational areas and has a total score from 0 to 88. Scores 61-88, 41-60, 20-40, and <20 indicate severe, moderate, mild, and no burden. Data were analyzed using descriptive statistics and Chi-Square, Fisher’s exact tests, t-test, analysis of variance, and multiple regression analysis. Results:The mean age of the caregivers and children were 38.20±8.04 and 8.90±4.90 years, respectively. Also, 33 (8.5%), 135 (35.1%), and 181 (47%) of the caregivers suffered from severe, moderate, and mild burden, and only 9.4% perceived no burden. The mean caregiver burden scores were significantly different in terms of their education (P<0.001), job status (P=0.04), financial status (P<0.001), family size (P<0.001), numbers of children (P<0.001), numbers of children with chronic illnesses (P<0.01), type of supportive resources (P=0.004), and children’s education (P<0.01), type of disease (P<0.001), numbers of diseases (P<0.001), and interval of medical visits (P<0.001). Conclusion: Caregivers of children and adolescents with chronic disease are under pressure. Our study showed a number of factors influencing caregiver burden. Health care providers should plan family-centered care plans to decrease the burden of care in caregivers of children with chronic conditions.

Effect of Implementing Family-Centered Empowerment Model on Burden of Care in Caregivers of the Elderly with Parkinson's Disease

Background: Caring for a patient with Parkinson's disease (PD) imposes a high burden of care on caregivers due to its chronic and progressive nature. Implementation of an empowerment program leads to self-control and adoption of preventive behaviors. Aim: This study investigated the effect of a family-centered empowerment model on the burden of care among the caregivers of the elderly with PD. Method: The present randomized controlled clinical trial was performed on 60 caregivers and elderly people with PD referring to the Neurology Clinic of one of the two large hospitals of Mashhad, northeast Iran, in 2018. In the intervention group, the family-centered empowerment model consisted of four steps, including perceived threat, problem-solving, educational participation, and evaluation, in four training sessions. Before and 1.5 months after the training sessions, both groups completed the Zarit Burden Interview questionnaire. The control group also received routine care. The data were analyzed by SPSS software (version 16) using paired t-test, independent t-test, Wilcoxon test, and Mann-Whitney U test. Results: The two groups were homogeneous regarding demographic findings. The difference in pre and postcare burden scores decreased 25.1±13.9 and 0.6±3.1 in the intervention and control groups, respectively. Independent t-test showed a significant difference (P<0.001). Intragroup comparison by paired t-test in the intervention group showed a significant difference between the total care burden score before and after the intervention (P<0.001). Implications for Practice: Using the empowerment model focusing on the management of care programs leads to reducing the burden of care and improving the role of caregivers. Therefore, it is recommended to implement family-centered empowerment programs for the caregivers of patients with chronic diseases.

WHODAS 2.0 Can Predict Institutionalization among Patients with Traumatic Brain Injury.

Patients with traumatic brain injury (TBI) often present with disabilities associated with a high burden of care for caregivers or family members at home. When family members cannot afford to care for patients with TBI, they are often required to find them residence in long-term care institutions. To date, there are no quantitative assessment tools developed to predict institutionalization. Therefore, this study analyzed the accuracy of the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) for predicting the institutionalization of patients with TBI. We designed a cross-sectional study using a nationwide disability database. We analyzed the data of 8630 patients with TBI with injury for more than six months from the Taiwan Data Bank of Persons with Disability during July 2012–October 2018. The demographic data and WHODAS 2.0 standardized scores of patients with TBI who resided in community and long-term care institutions were analyzed. Receiver operating characteristic curve (ROC) analysis was performed to investigate the predictive accuracy of WHODAS 2.0 for being institutionalized, and the optimal cut-off point was determined using the Youden index. Binary logistic regression was employed to determine the predictors of the participants being institutionalized. The WHODAS 2.0 scores in each domain were lower in the community group than in the institutionalized group. ROC analysis revealed the highest accuracy for the summary scores of WHODAS 2.0 (area under the curve = 0.769). Binary logistic regression revealed that age, gender, work status, urbanization level, socioeconomic status, severity of impairment, and WHODAS 2.0 domain scores were factors associated with the institutionalization status of patients with TBI. Our results suggest that WHODAS 2.0 may be a feasible assessment tool for predicting the institutionalization of patients with TBI.

Nieadaptacyjne schematy poznawcze, radzenie sobie ze stresem a poziom obciążenia u opiekunów osób ze schizofrenią. Doniesienie wstępne

Nieadaptacyjne schematy poznawcze, radzenie sobie ze stresem a poziom obciążenia u opiekunów osób ze schizofrenią. Doniesienie wstępne

The influencing factors of caregivers in patient with nasopharyngeal carcinoma undergoing radiotherapy

Objective To investigate the level and influencing factors of care burden in caregivers of patients with nasopharyngeal carcinoma undergoing radiotherapy. Methods Totally 117 caregivers of patients with nasopharyngeal carcinoma undergoing radiotherapy and 117 patients were investigated with general information questionnaire, Zarit caregiver Burden Interiew (ZBI), Self-Perceived Burden Scale(SPBS), Karnofsky Performance Scale (KPS). Results The caregiver burden score of nasopharyngeal carcinoma undergoing radiotherapy was 28.44±18.16, in light level. The main influencing factors included the caregiver′s occupational status, physical health level, the patients of self-perceived burden level. Conclusion Nursing staff should pay attention to the self-perceived of caregivers and patients, and to provide caregivers professional and individualized care guidance and psychological counseling, so as to reduce the burden of care and improve the quality of care for patients. Key words: Nasopharyngeal carcinoma; Radiotherapy; Caregiver; Burden of care

介護者の抑うつ状態や介護負担感と『介護に関する困ったことや要望』に関する自由記述との関連

介護者の抑うつ状態や介護負担感と『介護に関する困ったことや要望』に関する自由記述との関連

SCHIZOPHRENIA AND EPILEPSY;

Introduction: Persistently dealing with chronic mental illness makes the caregiverssuffer from burden and mental health problems which are intensified if the caregiver is female.Therefore, there is need to improve the mental health of caregivers by using relaxation trainingin such a way that would reduce the burden of care in caregivers. Objectives: It is assumedthat female caregivers would be differing significantly in mental health problems as comparedto man. Relaxation training would improve mental health as compared to controlling the actualcondition. High burden would have inverse relationship with GHQ’s differential scores. Therewould be significant interaction between gender and burden, gender and training, burden andtraining, gender, burden and training. Study Design: A 2(Gender) X 2(Burden) X 2(Training)mixed factorial between subject design was used. Setting &amp; Period: This study was conductedwithin 6 months of duration at the department of Psychiatry, Sir Ganga Ram Hospital Lahore.Material &amp; methods: Purposive Sample technique was used. Sample consisted of 40 womenand 40 men out door patient’s caregivers of schizophrenia and epilepsy at Sir Ganga RamHospital, Lahore. Their age ranged from 20 to 60 years (M = 35.05, SD = 0.89). We assessedcaregiver’s burden by using Urdu version of Burden of Assessment (BAS) along with BAS, wealso recorded demographic information about the caregivers and assessed patients whomthey served on ICD-10 and clinical diagnoses for schizophrenia and epilepsy. Inherent to thestudy was a General Health Questionnaire (GHQ) which measured health of all caregivers fromdifferent dimensions. It included somatic, anxiety &amp; insomnia, social dysfunction, depressionand psychological health of all caregivers. Compliant with a number of researchers, we designa training program to alleviate caregivers burden of health coping strategies, safeguard fromunfounded options about the patients and the disease and maximize the efficiency in dealingwith the patient and his/her disease. Results: Results found significant main effects on genderas women suffered from high burden and mental health problems as compared to men. Asame significant main effect was also found for burden which increased health-related issues.Another significant main effect was found on training. The experimental group whom researcherprovided relaxation training was significantly low on GHQ differential score as compared tocontrolled condition. Since we divided caregivers into high and low burden groups we foundthat general health of high burden group are more porn to degradation than low burden group.However, low health indicated on GHQ subscales is improved after training for both highand low burden group. Conclusions: We concluded that caregivers need to get substantialunderstanding of the patients disease and they need to get first-hand knowledge and trainingof what they are getting into when they are looking after diseased patients.

Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury

Purpose: To investigate the psychometric properties of the Persian version of Caregiver Burden Scale (CBS) in caregivers of patients with spinal cord injury.Methods: This is a cross-sectional study. After a forward–backward translation, the CBS was administered to 110 caregivers of patients with spinal cord injury (men = 60, women = 50). Factor structure was evaluated by confirmatory factor analysis. The Internal consistency and test–retest reliability of the CBS were examined using Cronbach’s α and the intraclass correlation coefficient, respectively. Construct validity was assessed by examining the relationship among CBS and the World Health Organization Quality of Life, and the Beck Depression Inventory.Results: The results of confirmatory factor analysis provided support for a five-factor model of CBS. All subscales of CBS revealed acceptable internal consistency (0.698–0.755), except for environment subscale (0.559). The CBS showed adequate test–retest reliability for its subscales (0.745–0.900). All subscales of CBS significantly correlated with both Beck Depression Inventory and World Health Organization Quality of Life, confirming construct validity.Conclusions: The Persian version of the CBS is a valid and reliable measure for assessing burden of care in caregivers of patients with spinal cord injury.Implications for RehabilitationSpinal cord injury leads to depression, high levels of stress and diminished quality of life due to the high physical, emotional, and social burdens in caregivers.Persian version of the Caregiver Burden Scale is a valid and reliable tool for assessing burden in Iranian caregivers of patients with spinal cord injury.

Levels of Care Burden and Self-efficacy for Informal Caregiver of Patients With Cancer.

This descriptive study was conducted to determine the levels of self-efficacy and caregiver burden experienced by caregivers for patients with cancer. The study was conducted at the oncology clinic of a hospital in Erzurum city, Turkey. The study sample consisted of 101 caregivers of patients hospitalized with a diagnosis of cancer. The Self-Efficacy Scale Turkish version and the Zarit Caregiver Burden Scale, which is a sociodemographic questionnaire, were used for data collection. The level for the burden of care for caregivers to patients with cancer was moderate, and the level of self-efficacy was moderate. A statistically significant, positive relationship was found between the scores for the Care Burden Scale and the Completing Behavior Subscale (r = 0.213; P < .05). A statistically significant, negative relationship was observed between the mean scores of the Care Burden Scale with Self-Efficacy Scale's total score (r = -0.104; P < .05), Sustaining Behavior Subscale (r = -0.324; P < .01), and Initiating Behavior Subscale (r = -0.199; P ≤ .05). Therefore, initiatives focused on self-efficacy levels should be developed to increase the abilities of caregivers for patients with cancer.

P.7.f.007 - Attention deficit hyperactivity disorder rating scale: validation of a Spanish version and a proposal of a short-version scale

Autism spectrum disorder is a neurodevelopmental disorder which is increasing across the globe. The disorder in children not only creates burden of care in caregivers but also leads to impaired quality of life of families.To study the burden of care and quality of life in caregivers of children and adolescents with ASD.Cross sectional study conducted in Child and Adolescent psychiatry outpatient services at a government centre in north India between September 2014 to August 2015. The sample consisted of 40 caregivers of children with Autism. Mean age of the caregiver’s were 34.72 ± 6.32 years. Burden of care and quality of life were measured by Burden Assessment Schedule (BAS) and World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF) questionnaire respectively.Mean burden of care on BAS was 71.73 ± 8.62 indicating quite a high degree of burden on the caregivers of ASD. Significantly higher burden was reported by caregivers belonging to low income families and caregivers of children in age group 6–12 years. A positive correlation was observed between severity of autism and burden of care in caregivers. The study also found that as the severity of symptom increases the QoL in caregiver worsens.Caregivers of children with ASD suffer from high burden of care and impaired QoL.

Caregiver Burden and Expressed Emotion in Caregivers of Patients with Schizophrenia

Families often bears substantial amount of burden of any chronic psychiatric illness including schizophrenia. Only few Indian studies have studied expressed emotion and caregiver burden among patient with schizophrenia in India. Therefore, we aim to explore the burden and expressed emotion in caregivers of schizophrenia patents. Consecutive patient who meet the inclusion criteria were enrolled in the study from July 2012 to April 2013 from outpatient department of psychiatry at Institute of Mental Health and Hospital Agra. Information regarding socio-demographic characteristics (e.g. age, gender, domicile) was recorded on a semi structured questionnaire. Caregiver burden and expressed emotion were measured using Burden Assessment Schedule (BAS) and Family Emotional Involvement and Criticism Scale (FEICS) respectively. Mean age of patient and caregivers of schizophrenia was 36.15 (SD = 9.58) and 39.12 (SD = 12.47) respectively. Majority of the schizophrenic patients and their respective caregivers were male (82 and 57.5 % respectively). Mean BAS, FEICSEOI and FEISCPC score were 79.7 (SD = 5.9), 2.7 (SD = 0.7) and 3.7 (SD = 0.5) respectively. There was no significant correlation between BAS domains and FEICSEOI and FEISCPC. Urban residence of the patient was positively correlated with perceived criticism. Unemployment was positive correlated with FEICSOI and negatively correlated with FEISCPC. Age of the caregiver was positively correlated with spouse related burden and negatively correlated with caregivers routine and external support. Marital status was positively correlated with physical and mental health burden and other relations and negatively correlated with external support. Occupation (unemployment) was positively correlated with BAS domains of support of patient, taking responsibility and other relations. The results of the study revealed considerable burden of care in caregivers of patients with schizophrenia. Thus, emphasize the need for psychosocial support to the caregivers to effectively cope and manage the ill family member.

An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda.

BackgroundCaregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa.We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.MethodsWe used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building.ResultsEmergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome.ConclusionsThe findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.

The Association between Assertiveness and the Care Burden of Caregivers who Care for an Elderly Family Member in Their Home

The Association between Assertiveness and the Care Burden of Caregivers who Care for an Elderly Family Member in Their Home

Burden among Caregivers of Person with Schizophrenia and Schizoaffective Disorder: A Comparative Study

This is a cross-sectional comparative study with the aim to compare two patient groups of schizophrenia and schizoaffective disorder and their respective caregivers with the objectives to quantify and compare the burden in caregivers of person with schizophrenia and schizoaffective disorder and to study the relationship between them. In this study, 40 patients schizophrenia, 40 patients of schizoaffective disorder, along with their 80 respective caregivers were taken on the basis of inclusion and exclusion criteria. Subjects were assessed using Socio-demographic and clinical sheet &amp;BAS. Appropriate statistics such as mean, standard deviation, chi-square test, unpaired t test, Pearson’s correlation were applied to analyze the data. The results of the study revealed considerable burden of care in families of the patients and a significantly greater burden of care in caregivers of patients with schizoaffective especially in the following domains: spouse related, caregivers’ routine, physical and mental health, taking responsibility, patient’s behaviour and caregiver’s strategy. Some of the demographic variables like age and education etc. were also found to have significant correlation with burden of care.

Burden of caregivers of adult patients with schizophrenia in a predominantly African ancestry population.

There is relative inattention to caregiving burden in black populations in developing economies. This study seeks to assess the level of perceived burden and social determinants of burden of care in caregivers of adult patients with schizophrenia. In this cross-sectional study, 115 dyads of patients with schizophrenia caregivers attending public mental health clinics were consecutively recruited. Burden of care was evaluated using the 22-item Zarit Burden Scale (maximum score, 88). Multiple linear regression model explored factors associated with caregiver burden. Caregivers were predominantly females (75.7%) and were on average 50.8±15.0years. Most patients with schizophrenia were males (65.2%) and were on average 43.6±17.2years old. Caregivers showed on average, mild-to-moderate burden (score, 30.0±14.7; median, 28.0). There was tendency for caregivers of patients who were parents or spouses to have higher levels of burden. In multivariable analyses, higher burden of caregiving was associated with patient's inability to perform self-care (B±SE, 5.12±1.40; p=0.0001), closer kinship and higher numbers of psychotic episodes in previous year. The length of caregiving relationship was inversely related. Poorer functioning and demographic factors were important determinants of caregiver burden. Community mental health services should include self-care interventions in rehabilitation programs in Jamaica.

Do Technology-Based Support Groups Reduce Care Burden Among Dementia Caregivers? A Review

Technology-based support groups for caregivers are often more accessible and convenient than attending face-to-face support groups. In this review the author examines the effectiveness of technology-based social support groups on reducing care burden among caregivers of individuals with dementia. Studies were identified through 10 online bibliographic databases. Inclusion criteria: (a) published before June 2013, (b) rigorous study design, (c) English language, (d) peer-reviewed journals, (e) home-based care, (f) telephone and/or Internet support group utilized at home, and (g) outcome measure of care burden or caregiver stress. Technology-based social support groups enjoy a modest level of positive outcomes, appear to be low cost, and pose little risk of harmful effects while reducing care burden in caregivers. Based on the five studies reviewed, technology-based support group services have demonstrated a positive impact on reducing care burden among dementia caregivers; and improve support networks similarly to the way face-to-face support groups connect participants.

Especial care: The missing link of handling in the children with cerebral palsy: A letter to the editor

Especial care: The missing link of handling in the children with cerebral palsy: A letter to the editor Hamid Dalvand*, Mehdi Rassafiani1, Seyed Ali Hosseini2 * Assistant Professor, Department of Occupational Therapy, School of Rehabilitation Sciences, Arak University of Medical Sciences, Arak, Iran. 1. Associated Professor, Pediatric Neurorehabilitation Research Center, Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran 2. Associated Professor, Social Determinants of Health Research Center, Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran. Abstract Especial care is a particular and unique care of children with CP which is done in the areas of occupational performance by caregivers (mostly mothers). There is a mutual lack of knowledge both the mothers and therapists to special care. This means they not only do not have the necessary knowledge about the special care, but actually they do not have experience in this field. Special care was seen as a missing link of handling, causing hardship, stress and increases the burden of care in caregivers. It seems, through educational programs for parents and therapists, with conducting training workshops and practical acquaintance of caring for children with CP can enhance information and their experience on the special care.

137 Determination of the psychological problems and care burden of caregivers at home to cancer patients

137 Determination of the psychological problems and care burden of caregivers at home to cancer patients

INTERNALISED STIGMA IN YOUNG PEOPLE AT HIGH RISK OF DEVELOPING PSYCHOSIS: FINDINGS FROM A COGNITIVE THERAPY TRIAL

To develop a scale to measure the burden of care for caregivers of patients with dementia and explore its factor structure.The initial draft of the Thai dementia patients’ caregiver burden (Thai-DCAB) scale was developed based on literature review, in-depth interviews and expert opinions. The drafted scale was administered to 203 caregivers of dementia patients treated at two large public hospitals in southern Thailand. An exploratory factor analysis using maximum likelihood extraction with varimax rotation was conducted. The reliability of the scale was assessed using Cronbach's alpha.The Thai-DCAB scale consisted of 18 questions. Three factors were obtained, covering psychological, physical and financial burdens of the caregivers in taking care of dementia patients. These three factors accounted for 67% of the variance. The Cronbach's alpha coefficient was 0.95.The Thai-DCAB scale has high internal consistency and captures key theoretical constructs of the perceived burden among caregivers of patients with chronic and deteriorating dementia and in accordance with the social and cultural contexts and the way of life of the Thai people.