Understanding and alleviating informal caregiver burden through the development and validation of a caregiver strain index-based model in Taiwan.

BACKGROUND: Quantifying the informal caregiver burden is important for understanding the risk factors associated with caregiver overload and for evaluating the effectiveness of services provided in Long-term Care (LTC). OBJECTIVE: This study aimed to develop and validate a Caregiver Strain Index (CSI)-based score for quantifying the informal caregiver burden, while the original dataset did not fully cover evaluation items commonly included in international assessments. Subsequently, we utilized the CSI-based score to pinpoint key caregiver burden risk factors, examine the initial timing of LTC services adoption, and assess the impact of LTC services on reducing caregiver burden. METHODS: The study analyzed over 28,000 LTC cases in Southern Taiwan from August 2019 to December 2022. Through multiple regression analysis, we identified significant risk factors associated with caregiver burden and examined changes in this burden after utilizing various services. Survival analysis was employed to explore the relationship between adopting the first LTC services and varying levels of caregiver burden. RESULTS: We identified 126 significant risk factors for caregiver burden. The most critical factors included caregiving for other disabled family members or children under the age of three (ß = 0.74, p < 0.001), the employment status of the caregiver (ß = 0.30-0.53, p < 0.001), the frailty of the care recipient (ß = 0.28-0.31, p < 0.001), and the behavioral symptoms of dementia in care recipients (ß = 0.28-2.60, p < 0.05). Generally, caregivers facing higher burdens sought LTC services earlier, and providing home care services alleviated the caregiver's burden. CONCLUSION: This comprehensive study suggests policy refinements to recognize high-risk caregivers better early and provide timely support to improve the overall well-being of both informal caregivers and care recipients.

A Feasibility Study of Qualitative Methods Using the Zarit Burden Interview in Heart Failure Caregivers.

OBJECTIVES: The primary goal of this study was to identify and understand the burden experienced by informal caregivers of patients with HF at the time of hospital discharge. The researchers aimed to guide future education interventions and promote informal caregiver burden screening. DESIGN: The researchers administered the Zarit Burden Interview (ZBI) as a quantitative tool to assess informal caregiver burden. The ZBI is a standardized questionnaire used to measure the extent of burden experienced by informal caregivers. After administering the ZBI, the researchers conducted semi-structured interviews with five informal caregivers of patients with HF. These interviews were guided by probing questions related to ZBI items that were rated with high levels of burden (3 "quite frequently" or 4 "nearly always"). RESULTS: The quantitative data showed that the informal caregivers' burden scores on the ZBI ranged from 4 to 41. Male informal caregivers tended to report lower burden scores. The non-spouse informal caregiver had the highest burden score at 41. The qualitative analysis of the interviews revealed several themes related to informal caregiver burden, including fear, patient expectations, patient dependence on caregivers, social isolation, and stressors associated with medication changes after discharge. Despite the qualitative insights into specific burden-related issues, the quantitative analysis of the ZBI scores showed that, on average, informal caregivers reported little to no burden at the time of acute exacerbation of HF in the patient. CONCLUSION: The study's findings suggest that while informal caregivers may not report prominent levels of overall burden, they do face specific challenges and stressors, such as social isolation and managing medication changes post-discharge. These findings can inform the development of targeted support and interventions for informal caregivers of patients with HF.

Exploring concepts and trends in informal caregiver burden: systematic review using citation network and content analysis.

BACKGROUND: With the increase in the aging population, informal caregivers have become an essential pillar for the long-term care of older individuals. However, providing care can have a negative impact and increase the burden on caregivers, which is a cause for concern. OBJECTIVE: This study aimed to comprehensively depict the concept of "informal caregiver burden" through bibliometric and content analyses. METHODS: We searched the Web of Science (WoS) database to obtain bibliometric data and included only papers published between 2013 and 2022. We used content analysis to extract and identify the core concepts within the text systematically. RESULTS: Altogether, 934 papers were included in the bibliometric analysis, from which we selected 19 highly impactful papers for content analysis. The results indicate that researchers have focused on exploring the factors that impact informal caregiver burden. Meanwhile, there has been a widespread discussion regarding the caregiver burden among those caring for recipients with specific illnesses, such as dementia, Alzheimer's disease, and cancer, as these illnesses can contribute to varying levels of burden on informal caregivers. In addition, questionnaires and interviews emerged as the predominant methods for data collection in the realm of informal caregiver research. Furthermore, we identified 26 distinct assessment tools specifically tailored for evaluating burden, such as caregiver strain index (CSI). CONCLUSION: For future studies, we suggest considering the intersectionality of factors contributing to the burden on informal caregivers. This approach could enhance the well-being of both caregivers and older care recipients.

Impact of Long COVID on productivity and informal caregiving.

BACKGROUND: Around 2 million people in the UK suffer from Long COVID (LC). Of concern is the disease impact on productivity and informal care burden. This study aimed to quantify and value productivity losses and informal care receipt in a sample of LC patients in the UK. METHODS: The target population comprised LC patients referred to LC specialist clinics. The questionnaires included a health economics questionnaire (HEQ) measuring productivity impacts, informal care receipt and service utilisation, EQ-5D-5L, C19-YRS LC condition-specific measure, and sociodemographic and COVID-19 history variables. Outcomes were changes from the incident infection resulting in LC to the month preceding the survey in paid work status/h, work income, work performance and informal care receipt. The human capital approach valued productivity losses; the proxy goods method valued caregiving hours. The values were extrapolated nationally using published prevalence data. Multilevel regressions, nested by region, estimated associations between the outcomes and patient characteristics. RESULTS: 366 patients responded to HEQ (mean LC duration 449.9 days). 51.7% reduced paid work hours relative to the pre-infection period. Mean monthly work income declined by 24.5%. The average aggregate value of productivity loss since incident infection was £10,929 (95% bootstrap confidence interval £8,844-£13,014) and £5.7 billion (£3.8-£7.6 billion) extrapolated nationally. The corresponding values for informal caregiving were £8,726 (£6,247-£11,204) and £4.8 billion (£2.6-£7.0 billion). Multivariate analyses found significant associations between each outcome and health utility and C19-YRS subscale scores. CONCLUSION: LC significantly impacts productivity losses and provision of informal care, exacerbated by high national prevalence of LC.

Using large language model (LLM) to identify high-burden informal caregivers in long-term care.

BACKGROUND: The rising global elderly population increases the demand for caregiving, yet traditional methods may not fully assess the challenges faced by vital informal caregivers. OBJECTIVE: To investigate the efficacy of Large Language Model (LLM) in detecting overburdened informal caregivers, benchmarking against rule-based and machine learning methods. METHODS: 1,791 eligible informal caregivers from Southern Taiwan and utilized their textual case summary reports for the LLM. We also employed structured questionnaire results for machine learning models. Furthermore, we leveraged the visualization of the LLM's attention mechanisms to enhance our understanding of the model's interpretative capabilities. RESULTS: The LLM achieved an Area Under the Receiver Operating Characteristic (AUROC) curve of 0.84 and an Area Under the Precision-Recall Curve (AUPRC) of 0.70, marking an 8% and 14% improvement over traditional methods. The visualization of the attention mechanism accurately reflected the evaluations of human experts, concentrating on descriptions of high-burden descriptions and the relationships between caregivers and recipients. CONCLUSION: This research demonstrates the notable capability of LLM to accurately identify high-burden caregivers in Long-term Care (LTC) settings. Compared to traditional approaches, LLM offers an opportunity for the future of LTC research and policymaking.

Listening to Caregivers' Voices: The Informal Family Caregiver Burden of Caring for Chronically Ill Bedridden Elderly Patients.

The informal family caregiver burden (IFCB) for chronically ill bedridden elderly patients (CIBEPs) is a major issue worldwide. It is a significant challenge due to the ongoing increased palliative care in the family setting; therefore, we explored the IFCB of caring for CIBEPs in Thailand. This article utilized a qualitative method, the total interpretive structural modeling (TISM) approach, with purposive sampling of thirty respondents between September and December 2020. The data were analyzed using cross-impact matrix multiplication applied to classification (MICMAC) to determine the relationship between the driving and dependence power of the enabling factors. The IFCB of the palliative care of CIBEPs was associated with primary care, nursing, extrinsic monitoring and complication prevention. The results showed that the IFCB involves taking responsibility, daily workload, follow-up caring, caring tasks, caregiving strain, financial distress, patient support, external support and caregiving strategy; thus, assistance with taking responsibility, extrinsic monitoring and follow-up care daily tasks may reduce the caregiver burden.

Informal caregiver burden and influencing factors in gynaecological oncology patients hospitalized for chemotherapy: a cross-sectional study.

OBJECTIVE: To determine the level and influencing factors of informal caregiver burden in gynaecological oncology inpatients receiving chemotherapy. METHODS: This cross-sectional study enrolled gynaecological oncology patients and their informal caregivers between May 2018 and November 2018 and measured the caregivers' burden using the Caregiver Burden Inventory. The influencing factors were evaluated with univariate regression analysis and multivariate linear stepwise regression analysis. RESULTS: A total of 138 patients and their informal caregivers completed the questionnaire. The mean ± SD total informal caregiver burden score was 53.18 ± 10.97. The highest mean ± SD score was recorded in the dimension of time-dependent burden (14.28 ± 2.74), followed by developmental burden (13.65 ± 2.15), physical burden (10.52 ± 2.07), social burden (7.61 ± 2.58) and emotional burden (7.12 ± 1.43). Multivariate analysis showed that the informal caregiver's sex, relationship to the patient, daily duration of care, presence of chronic health problems and the duration of the patient's disease were factors influencing the level of caregiver burden. CONCLUSIONS: The informal caregivers of gynaecological cancer patients hospitalized for chemotherapy experience a moderate level of burden. Nursing measures should be considered to reduce informal caregiver burden and improve the quality of lives of both patients and their caregivers.

Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review.

AIM: The world population is rapidly ageing. As population age, the incidence of functional limitations increases, demanding higher levels of care from caregivers. Assistive technologies improve individuals' functioning, independence, well-being and quality of life. By increasing independence of older adults, assistive technologies decrease workloads required from informal caregivers. This review investigates, evaluates, and synthesises existing findings to examine whether and how assistive technologies reduce caregiver burden. METHODS: Databases searched included MEDLINE, EMBASE, Scopus, and Cochrane Library. Three groups of keywords were combined: those relating to assistive technology, caregiver burden, and older adults. RESULTS: Two theories emerged from the analysis of study results. Caregivers reported that assistive technologies decrease caregiver burden. However, caregivers had concerns that assistive technologies could add to caregiver burden, highlighting the limitations of assistive technology. CONCLUSIONS: As suggested by a majority of the studies in this review, assistive technologies contribute to reducing caregiver burden among caregivers of older adults. Assistive technologies assisted caregivers by reducing time, levels of assistance and energy put towards caregiving, anxiety and fear, task difficulty, safety risk particularly for activities requiring physical assistance and increasing the independence of the users. Further research is required to better understand limitations of assistive technologies. Implications for Rehabilitation Support for informal caregivers of older adults need more attention and recognition. Assistive technologies can reduce caregiver burden among informal caregivers of older adults. Further research is required to better understand the effectiveness of assistive technologies in reducing caregiver burden as well as limitations and barriers associated with using assistive technologies.

Evaluación de la sobrecarga de cuidadoras/es informales / Evaluation of burden in informal caregivers

Objetivo: Establecer la sobrecarga derivada de la tarea de cuidar de las/los cuidadoras/es informales y los factores asociados a ella. Material y método: Diseño descriptivo, correlacional en una muestra accidental por conglomerado de cuidadoras/es informales de pacientes adscritos al programa de postrados permanentes de los centros de salud pertenecientes a la DAS de Concepción, Chile. Se registraron las variables sociodemográficas relacionadas con la actividad de cuidar, además de la sobrecarga del cuidador, con la escala de Sobrecarga de Zarit. Se exploraron las dimensiones latentes de la escala de sobrecarga para determinar la multidimensionali-dad de este fenómeno. Los datos se registraron en una base de datos ingresados en el programa estadístico SPSS versión 15.0, se les aplicó estadística descriptiva e inferencial. Resultados: Los resultados son compatibles con la mayoría de los estudios respecto de las características de las/los cuidadoras/es informales. El perfil es una mujer entre 54 y 65 años de edad, hija, esposa y/o madre, que cuida más de 8 horas diarias a su familiar y realiza esta tarea desde hace más de 6 años, que no ha recibido la formación para los diferentes cuidados que otorga y que presenta niveles moderados de sobrecarga. Conclusiones: Es posible establecer algunos parámetros predictivos de sobrecarga, cuidadoras/es que muestran escasas redes sociales, estado de salud regular y peor que hace un año atrás y que presentan molestias físicas. Es prioridad que en nuestro sistema sanitario el/la cuidador/a informal sea tomada en cuenta como un usuario que también requiere de atención y no sólo visto/a como un/a agente colaborador/a para el sistema formal de salud.

Objective: To determine the amount of caregiver burden and related factors on informal caregivers. Methods: A descriptive, correlational study was conducted using a convenience sample of informal caregivers of patients assigned to the prostrate health program in the Municipality of Concepción, Chile. Sociodemographic variables were recorded and related to the activity of caregiving, as well as caregiver stress, using the Zarit Burden Scale. Latent dimensions were explored using the Burden Scale to determine the multidimensionality of the phenomenon. Data were recorded in a database and entered into SPSS Statistical Program Version 15.0 and descriptive and inferential statistics were applied. Results: The results are consistent with most studies on the characteristics of the informal caregiver. The profile is a female between ages 54 and 65 who is a daughter, wife and/or mother who cares for her sick family member for more than 8 hours daily, has carried out this work for over 6 years, has not received caregiver training and presents with moderate levels of stress. Conclusions: It is possible to predict caregiver burden in cases where social networks are poor, where health status in the caregiver is worse than one year earlier, and where the caregiver has some physical ailments. It should be a priority in our health system that informal caregiver burden be given attention and that the informal caregiver role not seen simply as adjunctive or collaborative to the formal health system.