A cross-sectional survey on burden of caregivers of pediatric leukemia patients attending a tertiary care hospital in Kolkata, India

Background: Care giving of children with leukemia involves considerable stress and anxiety on the part of family caregivers. Although caregivers’ burden is a crucial predictor of the health of both the child and the caregiver, it is often overlooked. Aim and Objectives: The present study aimed to assess the burden faced by caregivers of pediatric leukemia patients attending a tertiary care hospital in West Bengal, to elicit their sociodemographic characteristics and patients’ profile, and to find out relationship among these, if any. Materials and Methods: The study was descriptive observational type with cross-sectional design. It was conducted among caregivers of pediatric leukemia patients. Data were collected from 38 caregivers using predesigned, pretested, semi-structured schedule, and patients’ records. Burden was measured using Zarit Burden Interview, which is a 22 item 5-point Likert scale. Data were compiled and analyzed in Microsoft Excel and Statistical Software for the Social Sciences 20.0 for statistical analysis. Sociodemographic and clinical variables were expressed as number, percentages, mean, and standard deviations. To find out the association between different factors and caregiver burden, a logistic regression model was used. P < 0.05 was considered as statistically significant. Results: Majority of the caregivers were the mothers of the patients (68.42%), and most of the families of caregivers belonged to lower middle class according to modified BG Prasad Scale. Half of the caregivers (50%) experienced moderate–to-severe burden according to Zarit Burden Interview. Association was found between burden experienced and duration of disease and treatment. However, socioeconomic status was found to be the most significant determinant of burden as per multiple logistic regression by ENTER method. Conclusions: Majority of the caregivers were having moderate to severe and severe burden, which was significantly more among people coming from lower socioeconomic status. Prolonged disease duration and treatment were also found to be associated with increased burden of the caregivers.

Study of disease burden of chronic hepatitis B and C patients in Shanghai based on Bronfenbrenner's ecological systems theory: a community-based survey / 中华流行病学杂志

Objective To systemically analyze family burden,quality of life of chronic hepatitis B and C patients in Shanghai and related influencing factors.Methods A representative sample of chronic hepatitis patients (n=1 478) and their family members (n=1 478) was randomly selected through a multi-stage cluster sampling from 30 communities in 10 districts of Shanghai.One patient and one family member of each family were interviewed using different questionnaires to collect related information.Based on Bronfenbrenner's ecological systems,psychological measurement,two-level random intercept model and multivariable structural equation model were applied to determine the effects and directions of the factors between life quality of chronic hepatitis patients and family burden.Results The mean score of quality of life of chronic hepatitis patients in Shanghai was 78.70 ± 13.25,the score of "specific module" was highest and the score of "social function" was lowest.Additionally,the mean score of burden reported by the family members was 12.62 ± 10.74,the score of"financial burden" was highest,and the score of"effect on family member's health" was lowest.Multivariable structural equation model indicated that eight factors were related with life quality and family burden of patients with chronic hepatitis.Among them,HCV infection,elevated serum alanine aminotransferase level,average monthly cost for patient ＞3 000 yuan (RMB) and poor health of family members were the direct risk factors for the life quality of the patients as well as family burden.The factor of drinking more than once a week influenced the patients' life quality directly and family burden indirectly.On the contrary,the factors of local household registration,hospitalization and family member's indifferent attitude to hepatitis B vaccination influenced the family burden of the chronic hepatitis patients directly and the life quality of the patients indirectly.Conclusion The findings could be used in the development of community based management and intervention of chronic hepatitis patients in Shanghai.

Study of disease burden of chronic hepatitis B and C patients in Shanghai based on Bronfenbrenner's ecological systems theory: a community-based survey / 中华流行病学杂志

Objective To systemically analyze family burden,quality of life of chronic hepatitis B and C patients in Shanghai and related influencing factors.Methods A representative sample of chronic hepatitis patients (n=1 478) and their family members (n=1 478) was randomly selected through a multi-stage cluster sampling from 30 communities in 10 districts of Shanghai.One patient and one family member of each family were interviewed using different questionnaires to collect related information.Based on Bronfenbrenner's ecological systems,psychological measurement,two-level random intercept model and multivariable structural equation model were applied to determine the effects and directions of the factors between life quality of chronic hepatitis patients and family burden.Results The mean score of quality of life of chronic hepatitis patients in Shanghai was 78.70 ± 13.25,the score of "specific module" was highest and the score of "social function" was lowest.Additionally,the mean score of burden reported by the family members was 12.62 ± 10.74,the score of"financial burden" was highest,and the score of"effect on family member's health" was lowest.Multivariable structural equation model indicated that eight factors were related with life quality and family burden of patients with chronic hepatitis.Among them,HCV infection,elevated serum alanine aminotransferase level,average monthly cost for patient ＞3 000 yuan (RMB) and poor health of family members were the direct risk factors for the life quality of the patients as well as family burden.The factor of drinking more than once a week influenced the patients' life quality directly and family burden indirectly.On the contrary,the factors of local household registration,hospitalization and family member's indifferent attitude to hepatitis B vaccination influenced the family burden of the chronic hepatitis patients directly and the life quality of the patients indirectly.Conclusion The findings could be used in the development of community based management and intervention of chronic hepatitis patients in Shanghai.

Factor Structure of Burden in Dementia Caregivers : Exploratory Factor Analysis and Confirmatory Factor Analysis of Zarit Burden Interview

OBJECTIVE: Zarit Burden Interview (ZBI) was the most commonly used measure of caregiver burden for demented older adults. The aim of this study was to investigate dimensions of caregiver burden through factor analysis of ZBI. METHODS: The participants were 706 outpatients with dementia and their caregivers in Korea. We assessed the caregiver burden using the Korean version of ZBI. The participants were randomly divided into two groups, for the purpose of identifying the most optimal factor structure through exploratory factor analysis in group 1 (n=368) and confirmatory factor analysis in group 2 (n=338). RESULTS: The results of exploratory factor analysis in group 1 suggested 3-factor structure, which was labeled ‘personal strain,’‘patient dependency,’ and ‘self-criticism.’ The confirmatory factor analysis results indicated the 3-factor structure which was discovered through exploratory factor analysis was the best-fitting model for explaining the caregiver burden in group 2. CONCLUSION: The current study has significant implications for advancing our understanding of ZBI as multidimensional burden scale. Furthermore, differentiating the dimensions may allow researchers to assess the effects of interventions more precisely.

Avaliação da sobrecarga do cuidador de pacientes neurológicos cadeirantes adultos / Assessment of the burden of adult wheelchair-bound patients with neurological disabilities on the caregiver

Resumo O objetivo foi avaliar fatores que influenciam na sobrecarga dos cuidadores informais de pacientes neurológicos cadeirantes adultos. Foram entrevistados 16 cuidadores informais de pacientes neurológicos cadeirantes adultos, utilizando para avaliar sua sobrecarga a escala Zarit Burden Interview (ZBI) e coletados os dados de cuidar e sociodemográficos dos cuidadores, os dados socioeconômicos e o grau de independência funcional dos pacientes neurológicos cadeirantes adultos. Para análise dos dados foram utilizados os testes T-students, ANOVA Unifatorial com método de Tukey e Coeficiente de Correlação de Pearson. Resultados foram associados, menor grau de escolaridade do cuidador (p-valor = 0,01) e menor nível de informação da patologia acometida (p-valor = 0,01), com maiores sobrecargas. O suporte terapêutico e social dado pelas instituições de apoio, como a Clínica/Escola de Fisioterapia da CEUNSP, demonstrou ser importante para auxiliar os cuidadores a enfrentar situações de forma mais tranquila. O conhecimento de fatores que podem influenciar a sobrecarga dos cuidadores é importante para o planejamento e a intervenção desse público específico.

Abstract The scope of this study was to evaluate factors that influence the burden of adult wheelchair-bound patients with neurological alterations on informal caregivers. Sixteen informal caregivers of adult wheelchair-bound patients with neurological alterations were evaluated, using the Zarit Burden Interview (ZBI) scale to evaluate the burden on caregivers, as well as gather data on the care and socio-demographic profile of the caregivers, on the socio-economic data and the degree of functional independence of adult wheelchair-bound patients with neurological alterations. Student’s t-test, the one-way ANOVA with Tukey method and Pearson’s product moment correlation coefficient were used for data analysis. The results associated lower education level of the caregiver (p = 0.01) and lower level of information of the affected pathology (p-value = 0.01) to a heavier burden on the caregiver. The therapeutic and social support provided by the support institutions, such as the Physiotherapy Clinic/School of CEUNSP, was revealed as being important to help caregivers to handle situations in an easier manner. Understanding the factors that influence the burden on the caregiver is important for planning and intervention for this specific population group.

Carga familiar objetiva y subjetiva de pacientes con trastornos mentales severos a partir del family burden interview schedule

Resumen:“The Family Burden Interview Schedule – Short Form" (FBIS-SF) de Tesseler yGamache, es una entrevista que permite valorar la carga objetiva y subjetiva, querepresenta para las familias, el cuidado de pacientes con trastornos mentales severos.El Objetivo propuesto fue analizar la carga familiar objetiva y subjetiva.Material y Método: La Entrevista es de formato Modular (11 Módulos) conpuntuaciones independientes. Las áreas abordadas son carga objetiva y subjetiva enayuda familiar en actividades de la vida cotidiana, contención de comportamientosalterados, motivo de preocupación por el paciente, gastos económicos, cambios en larutina diaria del cuidador, motivos de preocupación por el paciente, ayuda quedispone el informante, repercusiones en la salud del cuidador, beneficios ygratificaciones, estigma y repercusión global del informante y del entrevistador. Cadamódulo se valora mediante respuestas. Dicotómicas y Escalas de tipo Likert,compuesto por diferentes números de ítems.La muestra poblacional fue seleccionada en 93 cuidadores mayores de 18 añosque lleven conviviendo más de 30 días con familiares donde se recopiló la informaciónde datos, tales como: edad, sexo y vinculación familiar.En la presente investigación se efectuó un análisis de la fiabilidad y deconsistencia interna, así como una adaptación semántica. Con los registros obtenidosdel instrumento se generó una base de datos a fin de estructurar organizativamentelas variables involucradas en el estudio...

Abstract:“The Family Burden Interview Schedule - Short Form” (FBIS-SF) of Tesselerand Gamache, it is a subjective interview that allows to value the objective load andthat represents for the families the care of patients with severe mental upheavals. Theobjective in this one investigation, it was to analyze the objective and subjectivefamiliar load.Matherials and methods: The interview is Modular format (11 you modulate)with independent ratings. The areas addressed are objective and subjective burden onfamily assistance in activities of daily living, containment of altered behavior, concernfor the patient, economic costs, changes in daily routine caregiver concerns by thepatient, help has the informant, impact on the caregiver's health, benefits and perks,stigma and overall impact of the informant and the interviewer. Each modulates isassessed by Dichotomous responses and Likert scales composed of differentnumbers of items. The population sample was selected in 93 caregivers aged 18 withcoexisting to over 30 days with relatives where information was collected dates, suchace age, sex and family ties. In the present investigation an internal analysis of thereliability and consistency ace well cultural ace to adaptation was made. With recordobtained from the instrument generated to variable database to organizationallystructure the involved in the study...

Burden on relatives of people with psychic disorder: levels and associated factors / Sobrecarga de familiares de pessoas com transtorno psíquico: níveis e fatoresassociados

Background Studies have shown that overburden with care of psychotic patients is associated with a significant reduction of quality of life and causes harm to the caregiver’s health. Objective In order to compare factors associated with levels of burden of caregivers with the psychopathology of the patient, we conducted a cross-sectional study with 435 primary caregivers of patients of Centers for Psychosocial Care (CAPS) from Pelotas, RS. Methods The patients were identified through medical records and their caregivers were interviewed in their homes. To evaluate the burden we used Zarit Burden Interview (ZBI). Results Caregivers of dependent users of alcohol and drugs had the highest average of burden, 52.2 points (sd = 20.4), followed by the caregivers of patients with suicide risk, 48.5 points (sd = 0.7). In adjusted analysis, women had 8.2 (95% CI: 4.6, 11.8) points higher on average than men in ZBI scale. Caregivers with less education had 1.6 (95% CI: -3.1, -1.0) points lower on average of burden compared to those with higher educational level. Caregivers with some health problem had 6.7 (95% CI: 3.3, 10.0) points higher in the middle of the ZBI when compared to those without disease. Discussion Several factors overload clearly indicate the need to develop interventions such as psychoeducation which may give some support to the family responsible for care.

Contexto Estudos têm mostrado que a sobrecarga gerada no cuidado de pacientes psicóticos está associada com uma redução importante na qualidade de vida, trazendo danos à saúde do cuidador. Objetivo Com objetivo de verificar fatores associados e comparar níveis de sobrecarga de cuidadores com a psicopatologia do paciente, foi realizado um estudo transversal com 435 cuidadores principais de usuários de Centros de Atenção Psicossocial (CAPS) da cidade de Pelotas, RS. Métodos Os usuários foram identificados por meio de prontuários e seus familiares foram entrevistados posteriormente em suas residências. Para avaliar a sobrecarga, foi utilizada a Zarit Burden Interview (ZBI). Resultados Cuidadores de usuários dependentes de álcool e drogas apresentaram as médias mais altas de sobrecarga, 52,2 pontos (dp = 20,4), seguidos dos cuidadores com risco de suicídio, 48,5 pontos (dp = 0,7). Na análise ajustada, mulheres tiveram 8,2 (IC 95%: 4,6, 11,8) pontos a mais na média do ZBI do que os homens. Cuidadores com menor escolaridade apresentaram 1,6 (IC 95%: -3,1, -1,0) pontos a menos na média de sobrecarga comparados aos com maior grau de instrução. Cuidadores com algum problema de saúde tiveram 6,7 (IC 95%: 3,3, 10,0) pontos a mais na média do ZBI comparado àqueles sem nenhuma doença. Conclusões Vários fatores de sobrecarga indicam claramente a necessidade de se desenvolverem intervenções, como a psicoeducação, que possam dar algum tipo de apoio ao familiar responsável pelo cuidado.

Factors Affecting Caregiver Burden in Family Caregivers of Patients with Dementia

BACKGROUND: This study aimed to know the state of caregiver burden of family caregivers of patients with dementia and also to know factors associated with the severity of caregiver burden. METHODS: Family caregivers of dementia patients were enrolled from five general hospitals in Daegu Metropolitan city, Korea. The participants analyzed in the present study were 199 subjects who were 24 to 86 years old, living in Daegu or Kyungsang Bukdo province. Demographic features, general characteristics, characteristics of caring patients were collected and Burden Interview was done by a psychologist. Factors affecting caregiver burden were assessed using statistical analyses. RESULTS: The average severity of caregiver burden of family caregivers were between mild and moderate. Factors affecting the severity of caregiver burden were caregiving days per week among caregiver's characteristics and Neuropsychiatric Inventory and Geriatric Depression Scale among patient characteristics by multiple regression linear analysis. Caregiving cost shows marginal significance. Interestingly, cognitive scales like Mini-Mental State Examination, Clinical Dementia Rating, Physical and Instrumental Activities of Daily Living did not affect caregiver burden of family caregivers. CONCLUSIONS: This study showed that caregiving days per week of caregivers and neuropsychiatric symptoms including depressive mood of patients are closely related with caregiver burden of family caregivers of patients with dementia in Korea.

Investigating Parental Caregiver Burden for Children with Disabilities using a Japanese version of the Zarit Caregiver Burden Interview (J-ZBI) / The Japanese Journal of Rehabilitation Medicine

The aim of the present study is to characterize the burden of parents who care for their children with disabilities with the use of a Japanese version of the Zarit Caregiver Burden Interview (J-ZBI) that has been successfully used to quantify the caregiver burden for caring for the disabled elderly. We performed a survey in which questionnaires including the J-ZBI (adapted for the subjects of this study) were given to 135 parents of children in a school for the physically challenged. We obtained 69 valid responses. For the parents, the mean J-ZBI score was 25.6 points and the mean CES-D score was 10.8 points. A lowered QOL for these parents was suggested by the finding that the mean SF-36 score was lower than for other persons of the same year and age in Japan. The parents reported physical strain more frequently than mental stress as the main caregiver burden. According to the parent group's mean J-ZBI score, we classified them into either a heavier or a lighter burden group. The parents who were in a state of depression as judged by the CES-D were more frequently found in the heavier burden group, while those with children who showed complete or modified independence in more items of FIM were more frequent in the lighter burden group. Services to support the physical aspects of parents caring for children with disabilities would reduce their caregiver burden effectively.