Informal Caregiver Burden Research Articles

Association between increased caregiver burden and severe psychological distress for informal caregivers during the COVID-19 pandemic in Japan: A cross-sectional study

ObjectiveDuring the coronavirus disease 2019 (COVID-19) pandemic, informal caregivers’ mental health deteriorated more than that of non-caregivers. We examined the association between increased caregiver burden during the pandemic and severe psychological distress (SPD). MethodsWe used cross-sectional data from a nationwide internet survey conducted between August and September 2020 in Japan. Of 25,482 participants aged 15–79 years, 1,920 informal caregivers were included. SPD was defined as Kessler 6 Scale (K6) score ≥ 13. Self-rated change in caregiver burden was measured retrospectively with a single question item. Binary logistic regression analysis was used to examine the association between SPD and increased caregiver burden during the pandemic, adjusted for demographic, socioeconomic, health, and caregiving variables. To examine the differential association between increased caregiver burden and SPD, interaction terms were added and binary logistic regression was separately conducted for all variables. ResultsParticipants’ mean age was 52.3 years (standard deviation 15.9), 48.8% of participants were male, 56.7% reported increased caregiver burden, and 19.3% exhibited SPD. Increased caregiver burden was significantly associated with SPD (adjusted odds ratio: 1.90; 95% confidence interval: 1.37–2.66). The association between increased caregiver burden and SPD was stronger among caregivers who were married, those undergoing disease treatment, and those with a care-receiver with a care need level of 1–2. ConclusionsThe results revealed that more than half of caregivers reported increased caregiver burden, and increased caregiver burden was associated with SPD during the pandemic. Measures supporting mental health for caregivers with increased caregiver burden should be implemented immediately.

Effectiveness of Supportive Educative Programs on the Care Burden of Informal Caregivers and Perceived Social Support of the Older Adults: a Quasi-experimental Study

Effectiveness of Supportive Educative Programs on the Care Burden of Informal Caregivers and Perceived Social Support of the Older Adults: a Quasi-experimental Study

Improving Benefit and Reducing Burden of Informal Caregiving for Patients with Heart Failure: A Mixed Methods Study (RP411)

Improving Benefit and Reducing Burden of Informal Caregiving for Patients with Heart Failure: A Mixed Methods Study (RP411)

Burden of informal caregivers of people with amyotrophic lateral sclerosis

Enquadramento: A esclerose lateral amiotrófica é uma doença neurodegenerativa, progressiva, incapacitante e sem cura, onde o cuidador assume um papel fundamental na resposta às necessidades. Objetivo: Analisar a associação entre caraterísticas sociodemográficas e profissionais do cuidador e sobrecarga; e entre caraterísticas sociodemográficas e clínicas da pessoa com ELA e a sobrecarga do cuidador. Metodologia: Estudo descritivo-correlacional. Amostra de disponíveis com 30 doentes e 30 cuidadores. Como instrumento utilizou-se o Questionário de Avaliação da Sobrecarga do Cuidador Informal. Análise estatística com testes paramétricos e não paramétricos. Resultados: Doentes com média de 66,4 ± 11,17 anos e distribuição homogénea quanto ao sexo. Cuidadores maioritariamente cônjuges, mulheres e com sobrecarga moderada (56,7%), sendo menos afetada a “reações a exigências” e mais afetada os “mecanismos de eficácia e de controlo” (média 25,67 ± 21,76 e média 66,39 ± 21,50). Caraterísticas sociodemográficas do cuidador, funcionalidade do doente, tempo de cuidados e ventilação não invasiva, relacionam-se com os níveis de sobrecarga (sig < 0,05). Conclusão: Os cuidadores apresentam níveis moderados de sobrecarga, tornando importante cuidados de proximidade.

Caregiver Burden Among Informal Caregivers of Persons Living with HIV/AIDS in Liangshan Prefecture, China.

PurposePrevious studies revealed that informal caregivers for persons living with HIV/AIDS (PLWHA) experience perceived caregiver burden. Although Liangshan prefecture is one of the areas with the fastest growing HIV/AIDS epidemics in China, little is known about burden of informal caregivers for PLWHA. This study aimed to evaluate caregiver burden and these predictors among informal caregivers of PLWHA in Liangshan prefecture, China.MethodsThis was a cross-sectional study conducted from August to December 2017. We used convenience sampling to recruit informal caregivers of PLWHA. A total of 222 participants completed questionnaires including demographic information, caregiving-related information, and caregiver burden (measured by Zarit Burden Interview, ZBI). SPSS software was used to analyze the data. Independent student’s t-test, one-way analysis of variance (one-way ANOVA), Spearman rank correlation, and multiple linear regression analysis were performed.ResultsThe mean ZBI score was 40.61 (SD = 14.47), and 199 (89.6%) informal caregivers had a mild or above caregiver burden. Multiple linear regression analysis revealed that older age (P=0.003), caregivers with poor health (P=0.002), parent-caregivers (P=0.001), poorer ability in ‘balancing caregiving needs and their own needs’ (P<0.001), and ‘managing emotional needs’ (P=0.014) were significantly associated with higher level of caregiver burden.ConclusionThe majority of informal caregivers had perceived caregiver burden in Liangshan prefecture of China. Findings emphasize that health-care providers, medical institutions and government should develop educational programs and policy to improve caregiver’s ability to cope with caregiving for PLWHA, and take more attention to caregivers with health problem, at older age, parent-caregivers. These may contribute to reducing caregiver burden among informal caregivers of PLWHA.

Burden and benefit-A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands.

ObjectivesAmyotrophic Lateral Sclerosis (ALS) is a systemic and terminal disorder of the central nervous system which causes paralysis of limbs, respiratory and bulbar muscles, impacting on physical, communication, cognitive and behavioural functioning. Informal caregivers play a key role in the care of people with ALS. This study aimed to explore experiences of burden along with any beneficial aspects of caregiving in ALS. An understanding of both burden and benefit is important to support the informal caregiver and the person with ALS.Methods/DesignThis exploratory mixed methods study characterizes two groups of informal caregivers in Ireland (n = 76) and the Netherlands (n = 58). In a semi‐structured interview, quantitative data were collected in the form of standardized measures assessing psychological distress, quality of life and burden. Qualitative data were collected from an open ended question, in which caregivers identified positive aspects in their caregiving experience. These data types were purposefully mixed in the analysis and interpretation stages, to provide a greater depth of evidence through diverse research lenses.ResultsThe caregiver cohorts were predominantly female (69%) and spouse/partners (84%) of the person with ALS. Greater levels of self‐assessed burden were found among the caregivers in the Netherlands (p < 0.05), and higher levels of quality of life among the cohort from Ireland (p < 0.05). Themes generated through qualitative analysis identified caregiver satisfaction, ability to meet the patient's needs and the (re) evaluation of meaning and existential aspects of life as positive aspects of caregiving. Existential factors were identified frequently by the caregivers in Ireland, and personal satisfaction and meeting their care recipient's needs by caregivers in the Netherlands. Three percent of all respondents reported there was nothing positive about caregiving.ConclusionsBased on our findings, we suggest that both burden and the presence of positive factors should be evaluated and monitored. The possibility of concurrent positive and challenging experiences should be considered in the design and delivery of supportive interventions for informal caregivers.

Male gender is associated with informal caregiver burden in patients with chronic intestinal failure treated with home parenteral nutrition.

Home parenteral nutrition (HPN) is the recommended treatment in patients with chronic intestinal failure (CIF). HPN is associated with a worsening of patients' quality of life and has a dramatic impact on personal and familial daily life. Little is known about the informal caregiver burden of patients receiving HPN. To assess informal caregiver burden and the factors associated with moderate-to-severe caregiver burden in patients treated with HPN. Informal caregivers of consecutive patients treated with HPN in a French nutrition referral center were invited to participate in a survey between January 2021 and June 2021. They had to fill out an anonymous standardized self-questionnaire evaluating burden by the Zarit Burden Interview (ZBI) and depression and anxiety symptoms by the Hospital Anxiety and Depression Scale (HADS) score since HPN introduction. Among the 87 HPN patients having informal caregivers, 53 (61%) completed the questionnaire. Thirty (57%) informal caregivers were women. The caregiver's median age was 62 years (IQR, 21.0). Twelve (22%) expressed moderate to severe burden (ZBI score, 41-88). In a multivariate analysis, the caregiver's male gender (odds ratio [OR], 16.45; 95% CI, 2.30-238.75; P = 0.014) and the number of simultaneous infusions per day >1 (OR, 9.92; 95% CI, 1.35-121.60; P = 0.0038) were associated with a moderate to severe burden. Twenty caregivers reported anxious and depressive symptoms with an elevated HADS score. In this prospective survey, a minority of informal caregivers of patients with CIF being treated with HPN expressed moderate to severe burden. The caregiver's male gender was associated with a higher burden in patients with CIF.

Informal Caregivers and Psychosocial Support: Analysis of European Dementia Policy documents

Various countries in Europe have different strategies for promoting care solutions for dementia challenges. The different approaches of Austria, Belgium, Czechia, Denmark, Finland, Germany, Gibraltar, Ireland, Israel, Malta, Nederland, Norway, Sweden and the United Kingdom (Scotland and Wales) were investigated. Dementia has a significant social, psychological and economic impact on the individual, family and society. As the disease progresses dementia sufferers become increasingly dependent. As many dementia sufferers are at home during the initial stages, the physical, emotional, and social demands of the dementia sufferers are often covered by informal caregivers. This study, therefore, aims to investigate the integration of psychosocial interventions for comprehensive care pertaining to informal caregivers of people with dementia in Europe. Furthermore, the study will highlight how implementation of technologies might enable psychosocial support of informal caregivers. The data is based on 15 national dementia strategies from various European countries. Data was based on preexisting coding systems with the predefined keywords and analyzed by qualitative content analysis by four of the authors. Our results show that psychosocial support is provided in various modalities and that informal caregivers need to be supported by a psychosocial approach. Due to this need the national dementia strategies should include measures to reduce the emotional burden of informal caregivers. Psychosocial support provided to informal caregivers in a comprehensive and systematic way is likely to enable informal caregivers to handle the emotional, cognitive, and behavioral consequences of the disease and its treatment, while helping to maintain their work-life balance. Significance for public health This study has important public health impacts on informal caregivers in a European context. The study reveals that the European countries of Alzheimer Europe - especially policymakers, social and healthcare providers and non-government organizations - should update or prepare the necessary national dementia strategies, promote benchlearning, improve international collaboration and systematically manage those who provide psychosocial support.

Factors Associated with Increased Caregiver Burden of Informal Caregivers during the COVID-19 Pandemic in Japan.

This study’s objective was to explore the association between various factors and the increased caregiver burden of informal caregivers during the COVID-19 pandemic. On February, 2021, 700 informal caregivers completed an online survey. We assessed the change in caregiver burden during the COVID-19 pandemic. Among all caregiver participants, 287 (41.0%) complained of an increased caregiver burden due to the COVID-19 pandemic. The factors associated with increased caregiver burden were depressive symptoms in caregivers [odds ratio (OR), 2.20; 95% confidence interval (CI), 1.50–3.23], dementia (OR, 2.48; 95%CI, 1.07–5.73) and low Barthel Index scores (OR, 2.01; 95%CI, 1.39–2.90) in care receivers, care days (OR, 1.09; 95%CI, 1.01–1.17) and times (OR, 1.06; 95%CI, 1.01–1.10), and use of home care service (OR, 1.46; 95%CI, 1.01–2.10) and visiting care service (OR, 1.71; 95%CI, 1.20–2.45). These findings suggest we need to pay attention to the physical and mental health of both the care receivers and caregivers.

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.

The burden of informal caregivers in providing care to patients with Alzheimer’s disease

ENWEndNote BIBJabRef, Mendeley RISPapers, Reference Manager, RefWorks, Zotero AMA Kudłacik B, Gniadek A, Fraś M, Skoczylas K. The burden of informal caregivers in providing care to patients with Alzheimer’s disease. Nursing Problems / Problemy Pielęgniarstwa. 2022;30(1):29-34. doi:10.5114/ppiel.2022.119881. APA Kudłacik, B., Gniadek, A., Fraś, M., & Skoczylas, K. (2022). The burden of informal caregivers in providing care to patients with Alzheimer’s disease. Nursing Problems / Problemy Pielęgniarstwa, 30(1), 29-34. https://doi.org/10.5114/ppiel.2022.119881 Chicago Kudłacik, Beata, Agnieszka Gniadek, Małgorzata Fraś, and Kornelia Skoczylas. 2022. "The burden of informal caregivers in providing care to patients with Alzheimer’s disease". Nursing Problems / Problemy Pielęgniarstwa 30 (1): 29-34. doi:10.5114/ppiel.2022.119881. Harvard Kudłacik, B., Gniadek, A., Fraś, M., and Skoczylas, K. (2022). The burden of informal caregivers in providing care to patients with Alzheimer’s disease. Nursing Problems / Problemy Pielęgniarstwa, 30(1), pp.29-34. https://doi.org/10.5114/ppiel.2022.119881 MLA Kudłacik, Beata et al. "The burden of informal caregivers in providing care to patients with Alzheimer’s disease." Nursing Problems / Problemy Pielęgniarstwa, vol. 30, no. 1, 2022, pp. 29-34. doi:10.5114/ppiel.2022.119881. Vancouver Kudłacik B, Gniadek A, Fraś M, Skoczylas K. The burden of informal caregivers in providing care to patients with Alzheimer’s disease. Nursing Problems / Problemy Pielęgniarstwa. 2022;30(1):29-34. doi:10.5114/ppiel.2022.119881.

Factors associated with symptoms of physical and emotional burden in informal caregivers of the elderly.

to analyze the personal and work-related burden factors associated with physical and emotional symptoms of informal caregivers of the elderly. cross-sectional study conducted with 121 informal caregivers and 121 seniors who received care, assessed individually for the risk of: physical overload, musculoskeletal symptoms, Self-Reporting Questionnaire, effort perception, and Katz index. a greater perception of effort raises up to 3.3 times the chances of presenting symptoms of pain in the spine region (p=0.01), and lower functional capacity of the elderly increases up to 1.3 times the chances of presenting pain symptoms in the spine region (p=0.02). The symptoms of emotional overload were associated with the caregiver's low income (p=0.02). the perception of effort, dependence of the elderly, caregiver's age, and symptoms of emotional overload are involved with caregivers' symptoms of physical overload, and low income, with emotional overload.

Investigating the Burden in Informal Caregivers of People with Dementia and the Modulating Impact of Individual Characteristics During the First COVID-19 Pandemic Wave: A Cross Sectional Study

Investigating the Burden in Informal Caregivers of People with Dementia and the Modulating Impact of Individual Characteristics During the First COVID-19 Pandemic Wave: A Cross Sectional Study

Burden and psychological symptoms on informal caregivers of the elderly in the COVID-19 pandemic.

To evaluate the burden and psychological symptoms of informal caregivers of the elderly during the COVID-19 pandemic. Cross-sectional study with 50 caregivers from the Gerontology Outpatient Clinic in the interior of São Paulo, evaluated in 2021 via teleconsultation by the Hospital Anxiety and Depression Scale and the Zarit-Brief Burden Interview. Poisson's multivariate regression was applied to the two instruments scores according to the set of characteristics of the participants. Psychological symptoms were highlighted in caregivers with longer time in exercise (p=0.01; p=0.001) and who lived in the same environment with the elderly (p=0.04; p=0.02). Burden was associated with age (p<0.001) and living with the elderly (p=0.001). There is a need for interventions that attenuate psychological symptoms and burden in older caregivers, who live with the elderly and have been working for a longer time.

Informal caregiver support needs and burden: a survey in Lithuania

IntroductionA demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting...

Social and Gender Differences in Informal Caregiving for Sick, Disabled, or Elderly Persons: A Cross-Sectional Study.

IntroductionInformal caregivers are in increasing demand to provide care for sick, disabled, and elderly persons in the years to come, also in the Nordic welfare states. Informal caregivers can provide different types of care, such as personal care, supervision, and practical help, and previous research has shown that women take on a heavier care burden than men. However, structural differences in care tasks and caregiver burden in the Norwegian population is an under-researched area of study.ObjectiveThe study objective is to explore different types of informal care and caregivers in the Norwegian population and assess how different types of caregivers are distributed across socio-demographic groups.MethodsA cross-sectional population survey was conducted in 2014. A random sample of 20,000 people above 16 years of age was drawn from the national population register. The net sample consisted of 4,000 individuals, giving a response rate of 20.2%. Data were collected using telephone interviews. We used descriptive statistics, crosstabulations with chi-square tests and multinomial regression analyses.ResultsFifteen and seven percent of the respondents reported that they regularly helped persons with special care needs outside and inside their own household, respectively. Women were more likely than men to give personal care, whereas men were overrepresented among caregivers providing practical help only. The mean age of caregivers providing practical help only was significantly lower than for caregivers providing personal care.ConclusionOur results indicate that women take on a heavier care load, both by providing more personal care then men and in that they spend more time caring. It is important that nurses and other healthcare professionals in community care have knowledge about structures of inequality in informal caregiver tasks and burden so that they can better identify opportunities for improved coordination between formal and informal care.

Caracterização do cuidador informal de idosos hospitalizados: um estudo transversal

Objective: to describe the sociodemographic and clinical profile, life habits and workload of a family caregiver of elderly people admitted to a university hospital. Method: this is a cross-sectional, quantitative study carried out with 161 caregivers/relatives of the elderly during hospitalization at a university hospital. The Informal Caregiver Burden Assessment Questionnaire was applied to the participants, and the data were analyzed using the STATA 12.0® program. Resultados: we characterized the predominance of females, with a mean age of 63 years, sedentary, overweight, with systemic arterial hypertension as the main comorbidity, and severe (41.6%) and extremely severe (29.9%) overload was detected in the research participants. It was observed that the instrument used had good internal consistency, where the domains Emotional Burden, Implications for Personal Life, Financial Burden and Family Support had higher scores. Conclusion: the burden of informal caregivers of the elderly was detected as serious and extremely serious, directly impacting...

Quality of life and burden of informal caregivers of post-stroke individuals

Resumo Introdução A assistência ao indivíduo pós-acidente vascular encefálico (AVE) geralmente é prestada por cuidadores familiares, mas com grande sobrecarga e impacto negativo em sua qualidade de vida (QV). Objetivo Identificar a população que atualmente cuida de maneira informal de indivíduos com sequelas decorrentes de AVE em Araranguá/SC (Brasil) e avaliar a relação entre a QV e o nível de sobrecarga nessa população. Método Estudo transversal que avaliou 60 indivíduos: 30 cuidadores informais de 30 indivíduos pós-AVE crônicos inscritos nas Unidades Básicas de Saúde de Araranguá, SC. Os seguintes instrumentos de avaliação foram utilizados: Escala Zarit Burden Interview para avaliar a sobrecarga e Questionário World Health Organization Quality of Life (WHOQOL-BREF) para avaliar a QV do cuidador; Medida de Independência Funcional (MIF) para avaliar a independência funcional e a Escala de Rankin Modificada para avaliar o nível de incapacidade do indivíduo pós-AVE. Resultados Foi observado algum nível de sobrecarga em 71,67% dos cuidadores avaliados, sendo que a maioria (46,67%) apresentou sobrecarga leve a moderada. A QV dos cuidadores mostrou-se alterada, com menores índice de satisfação com os domínios físico e meio ambiente. Foi observada correlação significativa entre a sobrecarga e a QV (ρ=-0,60; p&lt;0,01) dos cuidadores. Conclusão A população de cuidadores de indivíduos pós-AVE residentes em Araranguá mostrou-se sobrecarregada com a função de cuidar, com alteração na sua QV. Os achados sugerem a necessidade de intervenções de saúde dirigidas não só aos indivíduos pós-AVE, mas também a seus cuidadores familiares.

Correlation of family functionality and burden of informal caregivers of hospitalized older adults.

to analyze the relationship between family functionality and burden of informal caregivers of hospitalized older people. this is a cross-sectional study conducted with 98 informal caregivers of hospitalized older people in an inpatient unit of a large hospital in São Carlos, São Paulo. For data collection were used questionnaires to sociodemographic and care context characterization, to evaluate burden and family functionality. Descriptive analyzes and Spearman's correlation coefficient were used. female caregivers predominated, who took care of their parents and had no training. Approximately 59.8% of caregivers had good family functionality and 49.5% scored for mild to moderate burden. There was a negative correlation, moderate magnitude, between family functionality and burden (p<0,001). The higher the burden score, the lower the family functionality score and vice versa. caregivers with high burden had worse family functionality. Therefore, nurses need to identify such conditions early and implement assertive interventions so that the family functions as a therapeutic resource.

Correlation of family functionality and burden of informal caregivers of hospitalized older adults

RESUMO Objetivo analisar a relação entre funcionalidade familiar e sobrecarga de cuidadores informais de idosos hospitalizados. Método estudo transversal, quantitativo, realizado com 98 cuidadores informais de idosos hospitalizados em São Carlos, São Paulo. Para a coleta de dados, foram utilizados questionários para caracterização sociodemográfica e do contexto de cuidado, para avaliação da sobrecarga e da funcionalidade familiar. Foram usadas análises descritivas e coeficiente de correlação de Spearman. Resultados predominaram cuidadores do sexo feminino, que cuidavam de seus progenitores e não possuíam capacitação. Aproximadamente 59,8% deles apresentaram boa funcionalidade familiar, e 49,5%, sobrecarga leve a moderada. Houve correlação negativa, de moderada magnitude, entre funcionalidade familiar e sobrecarga (p&lt;0,001). Quanto maior o escore de sobrecarga, menor o escore de funcionalidade familiar e vice-versa. Conclusão cuidadores com alta sobrecarga apresentaram pior funcionalidade familiar. Diante disso, enfermeiros precisam identificar precocemente tais condições e implementar intervenções assertivas para que a família funcione como um recurso terapêutico.