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BACKGROUND: The informal caregivers of adult patients with ß-thalassemia major (ß-TM) bear not only physical but also emotional and economic pressures of providing care. This study is the first to evaluate the caregiver burden by Zarit Burden Interview (ZBI) of adult patients with ß-TM in mainland China and to identify predictors of caregiver burden. METHODS: In this cross-sectional study, we conducted an online survey with snowball sampling covering seven provinces between September 1, 2021, and January 31, 2022, of patients aged ≥ 18 years with ß-TM and their informal caregivers. Caregiver burden was assessed using the ZBI. Data on patient demographics, disease and therapy characteristics, and informal caregivers' demographic characteristics were collected and analysed using independent t-tests, analysis of variance, Spearman's correlation and multiple linear regression. RESULTS: Of 75 included patients, more than half (50.7%) were male. The mean patient age was 24.69 ± 5.59 years. The mean age of the informal caregivers was 50.60 ± 9.16 years, with women (74.7%) being predominant. The ZBI score was 38.00 ± 17.02. Multiple linear regression analysis showed that patients with interrupted blood transfusion therapy and informal caregivers required to care of others were positively associated with caregiver burden (p < 0.05). Age of informal caregivers were borderline significant positively associated with caregiver burden (p < 0.1). Married informal caregivers were negatively associated with caregiver burden (p < 0.05). CONCLUSIONS: The informal caregivers of adult patients with ß-TM in mainland China experienced a moderate-to-severe level of caregiving burden. The caregiver burden was higher in patients with a history of interrupted blood transfusion therapy or in informal caregivers who were older or needed to care for others. Additionally, married informal caregivers experienced lower burdens compared to non-married informal caregivers. These findings provide a reference to identify informal caregivers with higher burdens among patients with ß-TM.
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Background and Objectives: Caregiving for geriatric patients is essential for ensuring the well-being and quality of life of older adults. Family caregivers play a crucial role, but they often face a significant burden that can lead to adverse mental health outcomes, including depression. This study aimed to estimate the prevalence of depression among caregivers of geriatric patients in Jeddah, Saudi Arabia, and to analyze its association with caregiver burden and various socio-demographic and caregiving parameters. Methods: A cross-sectional study was conducted in Jeddah, Saudi Arabia, between January and March 2024. Adult caregivers of geriatric patients were recruited through various social media platforms. Data were collected via an electronic questionnaire that included demographic information, caregiving parameters, the Patient Health Questionnaire-9 (PHQ-9) for depression screening, and the Zarit Burden Interview (ZBI-12) for caregiver burden assessment. Data were analyzed using descriptive statistics, chi-square tests, and multivariate logistic regression. Results: Of the 269 participants, the average age was 32 years, and the gender distribution was nearly balanced. The prevalence of depression (PHQ-9 score ≥ 10) among caregivers was 45.4% (95% CI: 39.3, 51.5%). Significant factors associated with higher depression scores included younger age, female gender, single status, being a student, low income, and caregiving burden. In the multivariate analysis, female gender (OR 2.50, 95% CI 1.30-4.80) and caregiving burden (mild-to-moderate burden: OR 6.18, 95% CI 2.94-13.00; high burden: OR 22.75, 95% CI 8.75-59.13) were independent predictors of depression. Conclusions: The study highlights the high prevalence of depression among caregivers of geriatric patients in Jeddah and underscores the significant impact of caregiving burden on mental health. These findings emphasize the need for targeted interventions, such as mental health support, respite care programs, and culturally sensitive educational training, to mitigate caregiver burden and enhance the well-being of caregivers.
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Cuidadores , Depressão , Humanos , Arábia Saudita/epidemiologia , Estudos Transversais , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Depressão/epidemiologia , Depressão/psicologia , Adulto , Prevalência , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: Caregiver burden is related to personal factors and patient characteristics and is greater when neuropsychiatric symptoms (NPSs) are present. OBJECTIVE: Estimate the prevalence of burden among caregivers of dementia patients and its association with NPSs and identify NPSs causing greater caregiver distress according to dementia stage. METHODS: A cross-sectional observational study in caregivers of noninstitutionalized dementia patients was conducted. Caregiver variables were sociodemographic, time of care, NPS-associated distress based on the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D) and burden based on the Zarit Burden Interview (ZBI). Patient variables were time since disease onset, Global Deterioration Scale (GDS) disease stage, functional assessment and NPS presence and intensity according to the Neuropsychiatric Inventory (NPI). The mean ZBI score, prevalence of burden and NPI-D score with 95% CIs at each dementia stage were estimated. Factors associated with burden were identified by multivariate analysis. RESULTS: Of the 125 caregivers included, 77.6% were women, with a mean age of 60.7 (± 14.3) years; 78.4% (95%CI: 71.0; 86.0) experienced burden. The mean ZBI score was 12.3 (95%CI: 11.6; 12.9) and increased according to NPS number (p = 0.042). The NPSs causing the most burden were disinhibition (93.5%), irritability (87.3%) and agitation (86.1%). Agitation, apathy, and sleep disorders were the NPSs generating the greatest overall caregiver distress; depression (max NPI-D 1.9), hyperactivity (max NPI-D 2.1), and psychosis symptoms (max NPI-D 1.6) generated the greatest distress at stage GDS 3, stages GDS 4-5, and stages GDS 6-7, respectively. The NPI score (OR = 1.0, 95%CI 1.0; 1.1), intensity of irritability (OR = 1.2, 95%CI 1.0; 1.6), disinhibition (OR = 2.6, 95%CI 1.1; 5.8) and hyperactivity subsyndrome (OR = 1.1, 95%CI 1.0; 1.2) were associated with caregiver burden. Other associated factors were female gender (OR = 6.0, 95%CI 1.6; 22.8), ≥ 8 h daily care (OR = 5.6, 95%CI 1.4; 22.8), working outside the home (OR = 7.6, 95%CI 1.8; 31.8), living with the patient (OR = 4.5, 95%CI 1.1; 19.6), kinship (OR = 5.4, 95%CI 1.0; 28.2) and lower patient education (OR = 8.3, 95%CI 2.3; 30.3). CONCLUSIONS: The burden on caregivers of dementia patients is high and associated with NPS presence and intensity. Disinhibition and irritability caused the highest burden. Depression, hyperactivity and psychosis produce more distress in mild, mild-moderate and severe dementia, respectively.
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Demência , Transtornos Psicóticos , Humanos , Feminino , Masculino , Cuidadores , Estudos Transversais , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Atenção Primária à SaúdeRESUMO
Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder with deficits in social communication and interaction, restricted and repetitive patterns of behaviour, interests and activities. Autism spectrum disorder is associated with multiple comorbidities. As a result, caregivers of children with ASD experience increased levels of burden and poor quality of life. However, there is a paucity of information on the burden. Aim: The study aimed to describe the sociodemographic profiles and determine the extent of the burden experienced by caregivers of children and adolescents with ASD. Setting: The Child, Adolescent and Family Unit (CAFU) outpatient services at Charlotte Maxeke Johannesburg Academic Hospital (CMJAH). Methods: A quantitative, descriptive, cross-sectional study was done. Two self-administered questionnaires were used: a sociodemographic questionnaire and the 12-item Zarit Burden Interview questionnaire. Results: The questionnaires were completed by 77 caregivers, of which the majority were female (n = 56 or 72.3%), mothers to children with ASD (n = 49 or 64.3%) and identified as Christian (p < 0.001). Most had completed secondary school or had a tertiary education (p = 0.003) and were employed (p < 0.001). Among the caregivers, 41.6% experienced mild to moderate burden, 33.8% experienced high burden and only 24.9% reported no to mild burden. Conclusion: Caregivers of children and adolescents with a diagnosis of ASD are mostly mothers and experience mild to moderate levels of caregiver burden, suggesting the need for improved screening and psychosocial support programmes. Contribution: This study highlights the burden experienced by primary caregivers of children with ASD and is one of the few comprehensive studies on this issue within the context of South Africa.
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OBJECTIVES: Caregiving burdens are a substantial concern in the clinical care of persons with neurodegenerative disorders. In the Ontario Neurodegenerative Disease Research Initiative, we used the Zarit's Burden Interview (ZBI) to examine: (1) the types of burdens captured by the ZBI in a cross-disorder sample of neurodegenerative conditions (2) whether there are categorical or disorder-specific effects on caregiving burdens, and (3) which demographic, clinical, and cognitive measures are related to burden(s) in neurodegenerative disorders? METHODS/DESIGN: N = 504 participants and their study partners (e.g., family, friends) across: Alzheimer's disease/mild cognitive impairment (AD/MCI; n = 120), Parkinson's disease (PD; n = 136), amyotrophic lateral sclerosis (ALS; n = 38), frontotemporal dementia (FTD; n = 53), and cerebrovascular disease (CVD; n = 157). Study partners provided information about themselves, and information about the clinical participants (e.g., activities of daily living (ADL)). We used Correspondence Analysis to identify types of caregiving concerns in the ZBI. We then identified relationships between those concerns and demographic and clinical measures, and a cognitive battery. RESULTS: We found three components in the ZBI. The first was "overall burden" and was (1) strongly related to increased neuropsychiatric symptoms (NPI severity r = 0.586, NPI distress r = 0.587) and decreased independence in ADL (instrumental ADLs r = -0.566, basic ADLs r = -0.43), (2) moderately related to cognition (MoCA r = -0.268), and (3) showed little-to-no differences between disorders. The second and third components together showed four types of caregiving concerns: current care of the person with the neurodegenerative disease, future care of the person with the neurodegenerative disease, personal concerns of study partners, and social concerns of study partners. CONCLUSIONS: Our results suggest that the experience of caregiving in neurodegenerative and cerebrovascular diseases is individualized and is not defined by diagnostic categories. Our findings highlight the importance of targeting ADL and neuropsychiatric symptoms with caregiver-personalized solutions.
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Transtornos Cerebrovasculares , Demência Frontotemporal , Doenças Neurodegenerativas , Atividades Cotidianas , Cuidadores/psicologia , Humanos , OntárioRESUMO
PURPOSE: We sought to estimate the impact of cardiovascular autonomic neuropathy (cAN) on informal caregivers of patients with Parkinson's disease (PD), defined as individuals providing regular care to a friend, partner, or family member with PD, and to evaluate the mutual relationship between caregiver burden and patient health-related quality of life (HRQoL). METHODS: We enrolled 36 consecutive patients with PD and their informal caregivers. Patients underwent a detailed motor, autonomic, cognitive, and functional assessment. Caregivers were assessed using the Zarit Burden Interview (ZBI). Differences in caregiver burden, expressed by the ZBI score, and strength of association between caregiver burden, cAN, and HRQoL were assessed using analysis of covariance (ANCOVA), logistic regression, and linear regression analyses. Analyses were adjusted for patients' age, PD duration, and motor and cognitive disability, as well as caregivers' age. RESULTS: Moderate-severe caregiver burden was reported in 41.7% of PDcAN+ versus 8.7% of PDcAN- (p < 0.001). The ZBI score was increased in PDcAN+ versus PDcAN- (31.5 ± 3.4 versus 15.2 ± 2.3; p < 0.001), with tenfold higher odds (p = 0.012) of moderate-severe caregiver burden in PDcAN+, even after adjusting for potential confounders. The ZBI score correlated with cAN severity (p = 0.005), global autonomic impairment (p = 0.012), and HRQoL impairment (p < 0.001). CONCLUSION: These results highlight the significant impact of cAN on PD caregivers and the need for targeted interventions addressing this frequently overlooked and insufficiently treated source of nonmotor disability in PD.
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Doença de Parkinson , Disautonomias Primárias , Humanos , Doença de Parkinson/complicações , Doença de Parkinson/terapia , Qualidade de Vida , Efeitos Psicossociais da Doença , Cuidadores/psicologia , Disautonomias Primárias/etiologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: The aim of this study was to assess the burden experienced by the caregivers of patients with pressure ulcers (PUs) and the variables that might contribute to its manifestation. METHOD: This cross-sectional study enrolled primary care patients and their informal caregivers. To assess the burden experienced by the caregivers, the Zarit Burden Interview, short-form version (ZBI) was used. This instrument was self-applied by the caregiver. We assessed PU status, demographic and clinical variables. The Kolmogorov-Smirnov test was used to test for normality, the Spearman's rank correlation coefficient (rs) test to assess the correlation between variables, and paired Student's t-test to compare the difference between the groups, with and without burden. RESULTS: Patients (n=54) were older, mean age 82±9.92 years, mainly female (64.8%), with an average of 1.47±0.73 PUs. The informal caregivers (n=46) were: primarily female (84.8%); mean age 57.13±11.87 years; 20.8% were unemployed; 14.6% were retired; 60.4% were the patient's offspring and 14.8% were spouses. Informal caregivers reported that they spent on average 10.20±8.10 hours each day taking care of their patient. The caregivers' (n=46) ZBI score was, on average, 14.63±9.60, and 37.0% reported a high burden. We did not find any correlation between caregiver burden and number of PUs (p=0.148), number of hours spent taking care of the patient (p=0.364) and age of the caregiver (p=0.259). CONCLUSION: Over one-third of the informal caregivers of the PU patients in this study reported a high burden. We did not find any correlation with the variables analysed, probably due to the small sample size.
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Cuidadores , Úlcera por Pressão , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atenção Primária à Saúde , SupuraçãoRESUMO
Objectives: Brief screening instruments are useful in busy clinical practice to identify those requiring further assessment. This study aims to translate and validate a Portuguese version of the four-item Zarit Burden Interview (ZBI-4) to identify caregiver burden in a community-based sample in Northern Portugal.Methods: We collected data from 203 informal caregivers of community-dwellers aged ≥80 years. Internal consistency and factors were measured using Cronbach's alpha. Pearson's correlation was used to examine construct validity against negative and positive aspects of caregiving from the Caregiving Appraisal Scale. Discriminative ability was evaluated from the area under the receiver operating characteristic curve (AUC). Optimal cutoffs were calculated using Youden´s Index.Results: The internal consistency of the Portuguese version of the ZBI-4 was good (alpha = 0.71). Concurrent validity was acceptable, showing strong correlation with the negative (rho = 0.66) and medium correlation with positive (rho = -0.33) aspects of the Caregiving Appraisal Scale. Discriminative accuracy for caregiver burden was also good (AUC = 0.86). Youden's index produced an optimal cutoff of ≥7 points for burden.Conclusions: The Portuguese version of the ZBI-4 screen demonstrates good psychometric properties.Clinical implications: These results show the utility of the Portuguese version of ZBI-4 as a short screen for caregiver burden for use in the community to facilitate rapid screening for this important and complex stressor.
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Sobrecarga do Cuidador , Cuidadores , Humanos , Portugal , Psicometria , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Dementia in the oldest-old is projected to increase exponentially as is the burden of their caregivers who may experience unique challenges and suffering. Thus, we aim to investigate which factors are associated with older caregivers' burden in caring demented outpatients in a multicenter cohort. METHODS: Patients and their caregivers, both aged â§65 years, in the National Dementia Registry Study in Taiwan (T-NDRS) were included in this study. Caregiver burden was measured with the short version of the Zarit Burden Interview (ZBI). The correlations between the ZBI scores and characteristics of caregivers and patients, including severity of dementia, physical comorbidities, instrumental activities of daily living (IADL), neuropsychiatric symptoms assessed by the Neuropsychiatric Inventory (NPI), and family monthly income, were analyzed. RESULTS: We recruited 328 aged informal caregiver-patient dyads. The mean age of caregivers was 73.7 ± 7.0 years, with female predominance (66.8%), and the mean age of patients was 78.8 ± 6.9 years, with male predominance (61.0%). Multivariable linear regression showed that IADLs (ß = 0.83, p < 0.001) and NPI subscores of apathy (ß = 3.83, p < 0.001)and irritability (ß = 4.25, p < 0.001) were positively associated with ZBI scores. The highest family monthly income (ß = - 10.92, p = 0.001) and caregiver age (ß = - 0.41, p = 0.001) were negatively correlated with ZBI scores. CONCLUSIONS: Older caregivers of older demented patients experience a higher care burden when patients had greater impaired functional autonomy and the presence of NPI symptoms of apathy and irritability. Our findings provide the direction to identify risky older caregivers, and we should pay more attention to and provide support for these exhausted caregivers.
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Atividades Cotidianas , Cuidadores , Idoso , Idoso de 80 Anos ou mais , Sobrecarga do Cuidador , Estudos de Coortes , Efeitos Psicossociais da Doença , Feminino , Humanos , Masculino , Taiwan/epidemiologiaRESUMO
BACKGROUND: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. METHODS: This research was an intervention trial with a quasi-experimental design. A total of 148 family caregivers of people with dementia participated in a multimodal comprehensive care methodology training programme for 6 hours (three times for 2 hours) in 3 months, which was followed by weekly delivery of information via postcard. The care burden of the caregivers was evaluated by the Japanese short version of the Zarit Burden Interview (J-ZBI) before the training, 1 month post-training and 3 months post-training (primary outcome). Each caregiver assessed the symptoms of the people with dementia for whom they provided care with the Behavioral Pathology in Alzheimer's Disease (Behave-AD) (secondary outcome). RESULTS: A total of 117 family caregivers (79%) were assessed 3 months after training. Over the course of the programme, the care burden significantly decreased from pre-training to 3 months post-training (P < 0.001). The mean care burden scores before, 1 month after, and 3 months after the intervention were 13.3, 10.9 and 10.6, respectively. The mean Behave-AD score of 101 people with dementia (68%) 3 months post-training was lower than that at pre-training, but the difference was not statistically significant (from 13.6 to 11.8, P = 0.005). CONCLUSIONS: The multimodal comprehensive care methodology training was associated with a reduction in the care burden of family caregivers. These findings suggest that randomized controlled trials with larger sample sizes are needed. TRIAL REGISTRATION: UMIN Clinical Trials Registry (UMIN-CTR), UMIN000043245 . Registered 4 February 2021 - Retrospectively registered.
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Doença de Alzheimer , Cuidadores , HumanosRESUMO
PURPOSE: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. METHODS: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. RESULTS: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001). CONCLUSION: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.
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Cuidadores/psicologia , Cuidados Paliativos/psicologia , Psicometria/normas , Adaptação Psicológica , Estudos Transversais , Análise Fatorial , Feminino , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos/métodos , Estudos Prospectivos , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
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.
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Amputação Cirúrgica/psicologia , Amputação Cirúrgica/reabilitação , Amputação Cirúrgica/estatística & dados numéricos , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Pé Diabético/cirurgia , Família/psicologia , Tratamentos com Preservação do Órgão/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Diabetes Mellitus , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Estresse Psicológico , TurquiaRESUMO
The caregiver burden is frequently used to refer to the physical and psychological problems that may arise from caring for a dependent relative. We conducted a meta-analysis to see whether Zarit Burden Interview (ZBI) scores differed by dependent's pathology. Results from 125 studies showed that caregivers of individuals with a physical disability have an estimated mean ZBI score (±SE) of 27 ± 2.6 - a score significantly lower than for caregivers of persons with dementia or cognitive impairment (34.1 ± 1.1), mental illness (32.6 ± 1.7), or Alzheimer's (32.5 ± 1). Our analysis of Alzheimer's revealed differences among cases of mildly (25.8 ± 5.2), moderately (35.6 ± 7.8), and severely (42.6 ± 7.9) afflicted dependents.
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Sobrecarga do Cuidador/psicologia , Doença Crônica , Efeitos Psicossociais da Doença , Transtornos Mentais , Índice de Gravidade de Doença , Atividades Cotidianas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer , Disfunção Cognitiva , Demência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Limitação da MobilidadeRESUMO
BACKGROUND: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. METHODS: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. RESULTS: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. CONCLUSIONS: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.
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Ansiedade/diagnóstico , Cuidadores/psicologia , Depressão/diagnóstico , Psicometria/métodos , Qualidade de Vida/psicologia , Adulto , Transtornos de Ansiedade/prevenção & controle , Transtorno Depressivo/prevenção & controle , Feminino , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Esquizofrenia/terapia , Inquéritos e QuestionáriosRESUMO
Behavioral and psychiatric symptoms (BPSD), common in persons with Alzheimer's disease (AD), are known to be associated with caregiver burdening. Therefore, early recognition of BPSD is necessary to protect these caregivers. The aim of this validation study was to test the internal consistency, test-retest reliability and concurrent validity of an Italian translation of the revised memory and behavior problems checklist (RMBPC), as it demonstrated high plasticity in timely measuring the day-to-day BPSD changes that challenge caregivers. A cohort of 355 dyads composed of AD subjects and their principal caregivers were assessed with the Italian version of RMPBC capitalizing on the information provided by the latter ones. The results were compared with the ones from other predictors (i.e., the Zarit Burben Interview, the Hospital Anxiety and Depression Scale, the EurQuality of Life, the neuropsychiatric symptoms). The validity and stability of the It-RMBPC resulted being solid and concurrent reliability resulted having higher correlations with principal caregiver anxiety level. Future studies on the role of BPSD in fostering anxiety in AD principal caregivers are merited.
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Doença de Alzheimer/diagnóstico , Cuidadores/psicologia , Escalas de Graduação Psiquiátrica/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Lista de Checagem , Comparação Transcultural , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , TraduçõesRESUMO
OBJECTIVES: Using a sample of dementia caregivers, we compared the diagnostic utility of the various short versions of the Zarit Burden Interview (ZBI) with the original scale to identify the most optimal one. Next, we established externally validated cutoffs for the various ZBI versions using probable depression cases as a reference standard. METHODS: Caregivers (N = 394; 236 males; Agemean = 56 years) were administered the ZBI and a self-report depression measure. Participants who exceeded the cutoff for the latter were identified as probable depression cases. For each of the ZBI versions, a receiver operating characteristic (ROC) curve was plotted against probable depression cases. The area under these ROC curves between the short versions and the original were then compared using a non-parametric approach. RESULTS: Compared to the original ZBI, the AUROC were similar for the 6-item, 7-item, and two 12-item versions, but significantly worse for the other short variants. The sensitivity and specificity of the cutoffs for all ZBI versions ranged from 77.3% to 85.2% and 60.1% to 79.8%, respectively. CONCLUSIONS: The original ZBI had good utility in identifying probable depression in caregivers, while the 6-item variant can be a useful alternative when short versions are preferred.
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Cuidadores/psicologia , Depressão/diagnóstico , Entrevista Psicológica/métodos , Entrevista Psicológica/normas , Idoso , Idoso de 80 Anos ou mais , Demência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Sensibilidade e Especificidade , SingapuraRESUMO
The implementation of self-reported outcome measurements into clinical routine was tested to help facilitate early access to palliative care (PC) for glioblastoma (GBM)-patients. Measures detail PC symptoms and concerns and caregiver burden. Between January 2014 and December 2016, a total of 337 GBM-patients were discussed during meetings of the neuro-oncology tumor board to examine further treatment options. Each patient, along with their caregivers, was requested to participate in self-assessment using the palliative outcome scale (POS) and the Zarit Burden Interview (ZBI). Analyses encompassed summary statistics, non-parametric tests, visual graphic analysis, content analysis and assessing the utilization of the specialized PC consulting service (SPCCS). Ninety-five (28%) GBM-patients and 71 (21%) caregivers completed the self-assessment. Of these, 20 patients and 12 caregivers repeated the assessment at least once more during follow-up. POS total scores were similar in the group of patients with initial diagnosis [10 (0-31)] and those with later disease stages like recurrent diagnosis [9 (0-25)], but ZBI total scores differed [14 (0-51) vs. 24 (2-62)]. Single item analysis demonstrated that anxiety and worries about the future predominated. Caregivers were torn between high engagement in caring and feeling overburdened. Still, requests for the SPCCS showed no increase. Actual implementation of measures like POS and ZBI for detecting PC concerns and caregiver burden with GBM-patients in the field remains challenging as indicated by the limited response rate and lack of increased requests for the SPCCS. Modified clinical routines including strengthening awareness of PC, and allowing proxy-assessment might help to overcome barriers.
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Cuidadores/psicologia , Neoplasias do Sistema Nervoso Central/psicologia , Neoplasias do Sistema Nervoso Central/terapia , Glioblastoma/psicologia , Glioblastoma/terapia , Cuidados Paliativos , Ansiedade , Efeitos Psicossociais da Doença , Feminino , Seguimentos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Prevenção Primária , Estudos Prospectivos , Fatores Socioeconômicos , Estresse PsicológicoRESUMO
BACKGROUND AND OBJECTIVE: Providing care to people with Parkinson-related dementia (PwPRD) may result in significant stress, strain, and burden for life partners. A common measurement of life partner burden is the Zarit Burden Interview (ZBI), which considers "burden" as a unitary concept; however, burden is highly complex and most likely comprises several dimensions. This study aimed to explore the factor structure of the ZBI in life partners of PwPRD and to examine the relationships among the emerging factors and the demographic and clinical features. METHODS: Life partners of PwPRD participated in home-based quantitative assessments and self-completed postal questionnaires. The assessment battery included ZBI, measures of relationship satisfaction, mood, stress, resilience, health, quality of life, feelings related to care provision, and sociodemographic questions. Data on PwPRDs' motor and neuropsychiatric symptom severity were also elicited in home-based assessments. RESULTS: An exploratory factor analysis (principal axis factoring) of ZBI, conducted with 127 life partners, revealed five burden dimensions: social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety, depression, resentment, negative strain, and PwPRD motor severity. In multiple linear regression analyses, where each factor score was the dependent variable, stress, negative strain, and resentment emerged as significant predictors of specific burden dimensions. CONCLUSIONS: Burden is a complex and multidimensional construct. Interventions should address specific types of burden among life partners of PwPRD to support couples' relationships and maintain quality of life.
Assuntos
Cuidadores/psicologia , Demência/etiologia , Doença de Parkinson/complicações , Doença de Parkinson/terapia , Qualidade de Vida/psicologia , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
ABSTRACTBackground:Caring for persons with dementia (PWD) can create "caregiver burden," which is associated with negative outcomes for caregivers and PWD. The ZBI (Zarit Burden Interview) is a widely used unitary measure of caregiver burden. However, recent research has found caregiver burden to be multi-dimensional. The purpose of this study was to explore the factor structure of the ZBI within a sample of UK caregivers. A secondary aim was to identify variables that predicted burden dimensions found. METHODS: A total of 110 unpaid community caregivers of PWD completed the ZBI. They also completed the EACQ (Experiential Avoidance in Caregiving Questionnaire), DEX (Dysexecutive Questionnaire), PACS (Positive Aspects of Caregiving Scale), and a demographic questionnaire. ZBI data were analyzed via exploratory factor analysis (principal axis factoring). Relationships between burden factors and other variables were studied using Pearson correlations and multiple regression. RESULTS: Analysis identified three burden factors, namely direct impact of caregiving, uncertainty around the future, and frustration/embarrassment. A direct impact of caregiving and frustration/embarrassment has been found previously. Uncertainty over the future is a new factor, which was predicted by adult-child caregiver role, highlighting that spouses and adult children are likely to have different burden experiences. Additionally, uncertainty over the future and frustration/embarrassment were inversely predicted by PACS, suggesting that being mindful of positive aspects of caregiving may function as a protective factor for burden. CONCLUSIONS: This study found caregiver burden to be multi-dimensional and uncovered a novel factor in uncertainty over the future, which warrants further exploration. Burden factors were associated with a range of modifiable variables that could be targeted within health and social care interventions to improve outcomes for caregivers and PWD.
Assuntos
Filhos Adultos/psicologia , Cuidadores/psicologia , Demência/enfermagem , Cônjuges/psicologia , Incerteza , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Demência/psicologia , Constrangimento , Análise Fatorial , Feminino , Frustração , Humanos , Masculino , Valor Preditivo dos Testes , Escalas de Graduação Psiquiátrica , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To determine the burden on the caregivers of patients receiving dialysis treatment. METHODS: This cross-sectional study was carried out in four different dialysis centres of Rawalpindi, Pakistan, from June 1 to December1, 2015, and comprised attendants of patients receiving dialysis. The data was collected from the attendants of patients receiving dialysis, and caregiver burden was measured using the Zarit Burden Interview questionnaire. SPSS 22 was used for data analysis. RESULTS: Of the 164 subjects, 97(59%) were females. The majority of caregivers reported stress for caring (2.28±1.31), patients asking for more help than needed (2.14±1.13), health problems (1.03±1.11), financial constraints (1.70±1.15) and little time for self-care (2.15±1.21). Besides, 107(65%) caregivers perceived the burden of their patients as mild to moderate. A positive correlation was found between the duration of a person on dialysis, daily hours of care-giving and the total burden score of his/her caregiver (p<0.05 each). CONCLUSIONS: Care-giving can create enormous burdens on caregivers, affecting their physical and psychological health.