Experiences of formal caregivers of elderly inpatients with physical disabilities in China: a qualitative study.

AIM: To explore the views and experiences of formal caregivers caring for older inpatients with physical disabilities. METHODS: It was a qualitative phenomenological study. Using purposive sampling, twelve formal caregivers were chosen in a tertiary comprehensive hospital in Hangzhou, China. Semi-structured, face-to-face interviews were conducted, guided by open-ended questions that focused on gaining rich insights into participants' views and experiences. Coding reliability thematic analysis was used to guide data analysis and categorize, based on Lazarus and Folkman's theory of transactional coping. RESULTS: Four themes emerged from the data analysis: (1) Caregiving Threats. (2) motivations. (3) Responsibility Management. (4) Fear. CONCLUSION: Despite facing significant pressure at work, formal caregivers of elderly inpatients with physical disabilities possess the drive and various coping strategies to excel in their role. Identifying caregivers' experiences of care can be helpful in improving resilience to stress and maintaining stability in formal caregivers.

Ethical Leadership in LTC: From Caregivers' Customer Orientation to Senior's Satisfaction and Well-Being.

Background: In response to the growth of the world's senior population, an investigation of ethical leadership on LTCs is needed, in particular in the impact it may have on customer orientation and on seniors' well-being. Objective: We propose a model to identify the relationship between ethical leadership in LTCs and caregivers' customer orientation, and its influence on satisfaction with the service, satisfaction with life, and the quality of the interaction between caregivers and seniors. Sampling: We present a matched sample of 277 caregivers and 277 elderly Brazilians, workers and seniors' in LTCs in Brazil. The minimum sample size was 222, determined using G-Power software version 3.1.9.2, based on the desired statistical power parameters and the number of predictors. Two structured questionnaires were developed, one for caregivers and the other for the elderly. 69 LTCs were contacted and 29 participated in the survey (10 nonprofit, 34.48%). Data were treated statistically using SEM modelling. Results: We identified a positive influence of ethical leadership on caregivers' attitudes, favoring their orientation towards the seniors'. A positive relationship between customer-oriented caregivers and customer satisfaction, life satisfaction, and the quality of the senior's interaction. A customer-oriented caregiver exerts a mediating effect between ethical leadership and the seniors' related outcomes, making ethical leadership beneficial to seniors and their family members. Conclusion: Ethical leadership favors successful management of LTCs, increasing customer orientation, and provides clues to establish a better causality and a chain of effects between leadership and senior-related outcomes. Therefore, LTCs may be the appropriate outlet for the role of ethics in leadership. Practical Implications: This study provides managers with an understanding of the effects of ethical leadership in the context of LTCs, for both caregivers and seniors. The powerful effects of ethical leadership can be a stimulus to increase the role of ethics in LTCs, improving the quality of care, the well-being of the seniors, and, therefore, the human and financial performance of these institutions.

Association between caregiver type and catastrophic health expenditure among households using inpatient medical services: using Korean health panel.

BACKGROUND: Caregiving services often place a financial burden on individuals and households that use inpatient medical services. Consequently, this study aimed to examine the association between the type of caregiver and catastrophic health expenditure among households utilizing inpatient medical services. METHODS: Data were extracted from the Korea Health Panel Survey conducted in 2019. This study included 1126 households that used inpatient medical and caregiver services. These households were classified into three groups: formal caregivers, comprehensive nursing services, and informal caregivers. Multiple logistic regression was used to analyze the association between caregiver type and catastrophic health expenditure (CHE). RESULTS: Households receiving formal caregiving had an increased likelihood of CHE at threshold levels of 40% compared to those who received care from family (formal caregiver: OR 3.11; CI 1.63-5.92). Compared to those who received formal caregiving, households using comprehensive nursing services (CNS) had a decreased likelihood of CHE (CNS: OR, 0.35; CI 0.15-0.82). In addition, considering the economic value associated with informal care, there was no significant relationship between households received formal caregiving and informal caregiving. CONCLUSION: This study found that the association with CHE differed based on the type of caregiving used by each household. Households using formal care had a risk of developing CHE. Households using CNSs were likely to have a decreased association with CHE, compared to households using informal and formal caregivers. These findings highlight the need to expand policies to mitigate the burden on caregivers for households forced to use formal caregivers.

Comparison of the Physical Care Burden on Formal Caregivers between Manual Human Care Using a Paper Diaper and Robot-Aided Care in Excretion Care.

Although the older population has been rapidly growing, the availability of formal caregivers remains limited. Assistance provided by care robots has helped lower this burden; however, whether using a care robot while providing excretion care (EC) is quantitatively increasing or decreasing caregivers' physical care burden has not been extensively studied. This study aimed to quantitatively compare the physical burden experienced by caregivers while providing manual excretion care (MC) using a paper diaper versus robot-aided care (RC). Ten formal caregivers voluntarily participated in the experiment. MC and RC tasks were structuralized according to phases and classified by characteristics. The experiment was conducted in a smart care space. The physical load of formal caregivers was estimated by muscular activity and subjective rating of perceived physical discomfort. The results demonstrated that although the physical load on the lower back and upper extremities during the preparation and post-care phases were greater in RC than MC, RC markedly alleviated caregivers' physical load when performing front tasks. In the preparation-care phases, the physical loads on the lower back and upper extremities were approximately 40.2 and 39.6% higher in the case of RC than MC, respectively. Similar to the preparation-care phases, the physical loads on the lower back and upper extremities during post-care phases were approximately 39.5 and 61.7% greater in the case of RC than MC, respectively. On the other hand, in the front-care phases, the physical loads on the lower back and upper extremities were approximately 25.6 and 34.9% lower in the case of RC than MC, respectively. These findings can quantitatively explain the effectiveness and features of a care robot to stakeholders and provide foundational research data for the development of EC robots. This study emphasizes the implementation and promotion of the dissemination, popularization, and development of care robots to fulfill formal caregiving needs.

The social robot companion to support homecare nurses: The guardian study protocol.

Introduction: The reduction of the older people's self-sufficiency and the increase in the need for help in daily activities has a significant impact on the person and their caregivers. The primary objective of the GUARDIAN project is to enable the older people to live as long as possible at home, by means of the GUARDIAN socio-technical platform. Methods: and Analysis: The GUARDIAN platform consists of two connected apps: one dedicated to the caregiver (Caregiver App) and one dedicated to the older people (Senior App), plus a robot (Misty II), to provide coaching in an engaging modality. The study is designed as a technical feasibility pilot to test the GUARDIAN system on a group of older people. Discussions: The proposed solution reflects the real wants and needs of the older people person, increasing the acceptability of the system. In addition, the GUARDIAN project has the potential to have distinguished two phases of testing, so that changes can be made to the platform between the first and second phases, using data, both qualitative and quantitative, collected after the first phase. Ethics and dissemination: The study was approved by the Ethic Committee of the IRCCS INRCA. It was recorded in ClinicalTrials.gov on the number NCT05284292.

The moderating effect of care-burden on formal caregiver's mental health during COVID-19.

BACKGROUND: Homecare organisations employ professionals (i.e. gerontologists, nurses, occupational therapists, physiotherapists and social workers) to help their clients gain rights and supervise non-professional formal caregivers. Formal caregivers, and especially those who work closely with impaired older people, are at greater risk of infecting or being infected by SARS-Cov-2 (COVID-19). During the first waves of COVID-19, older people were encouraged to stay home; and the care-burden inflicted on their caregivers has increased. OBJECTIVES: This study examined formal caregiver's mental health during the COVID-19 pandemic, that is, the association between anxiety and depression symptoms and how care-burden moderated this association. METHODS: A cross-sectional online survey conducted in the home care services sector throughout Israel. A sample of 400 formal caregivers of older people (Mage  = 47.7, SD = 13.8) completed a questionnaire regarding their levels of care-burden, general anxiety symptoms, and depressive symptoms. RESULTS: A significant positive relationship was found between anxiety and depressive symptoms among formal caregivers. The level of care-burden moderated this relationship, showing that caregivers with higher care-burden demonstrated a stronger association between anxiety and depressive symptoms. CONCLUSIONS: Professionals may use ADL/IADL as a practical index to assess care-burden and the risk of mistreatment. IMPLICATIONS FOR PRACTICE: Formal caregivers with higher care-burden should get enhanced professional's support to reduce adverse mental health outcomes.

Cuidadores formais de idosos dependentes no domicílio: desafios vivenciados / Formal caregivers of dependent elderly people in the home: challenges experienced

Resumo O objetivo deste artigo é analisar as características e os desafios vivenciados pelos cuidadores formais de idosos dependentes no domicílio. Estudo qualitativo multicêntrico, realizado em 6 cidades brasileiras, com cuidadores formais de idosos dependentes. As entrevistas foram realizadas mediante utilização de um roteiro semiestruturado, no domicílio, nos meses de maio a agosto de 2019, com duração média de 60 minutos. Participaram 27 cuidadores formais com idade média de 46 anos, predominantemente do sexo feminino, com tempo médio de cuidado ao idoso de 2 anos e 6 meses, sem formação profissional de cuidador. A análise e a interpretação das falas conduziram à formulação de três categorias temáticas: Condições de trabalho e de saúde do cuidador formal; Perfil e modos de cuidar; e Desafios para cuidar. É necessário conhecer as características e as demandas dos cuidadores formais de idosos dependentes domiciliados para que políticas públicas e intervenções eficazes possam ser desenvolvidas, levando-se em consideração as necessidades apresentadas por esses profissionais.

Abstract Objective: To analyze the characteristics and challenges experienced by formal caregivers of dependent elderly at home. Methods: Multicenter qualitative study, conducted in six Brazilian cities, with formal caregivers of dependent elderly people. The interviews were conducted using a semi-structured guide, at their homes, from May to August 2019, lasting an average of 60 minutes. Results: Participants were 27 formal caregivers with a mean age of 46 years, predominantly female, with mean care time for the elderly of two years and six months, without professional training of caregivers. The analysis and interpretation of the statements led to the formulation of three thematic categories: Working and health conditions of the formal caregiver; Profile and ways of caring; and Care challenges. Final thoughts: There is need to know the characteristics and demands of formal caregivers of dependent elderly people domiciled for the development of public policies and effective interventions, taking into account the needs presented by these professionals.

Formal Caregiver Burden in Nursing Homes: An Integrative Review.

Formal caregivers in nursing homes provide care to vulnerable older adults with chronic conditions. Caregiver burden affects formal caregivers. The purpose of this integrative review was to explore formal caregiver burden among nursing staff in nursing homes. Specific aims were to gain an understanding of the attributes, definitions, measures, and primary outcomes. A systematic search of CINAHL, PubMed, PsycINFO, and Embase was completed. The sample included 19 articles, which were published in English between January 1980 and April 2020. Attributes varied; however, perceived stress was frequently identified, consistent with the formal caregiver burden definition. Psychometric measures employed in the studies indicated heterogeneity. Primary outcomes included differences in burden, resident behavior, occupational and personal factors, and resident care. Research is needed to gain an understanding of this recently defined concept. Formal caregiver burden in nursing homes has emerged as a priority for research during the pandemic with new challenges and guidelines.

Resilience in In-Home Caregivers of Older Adults during the COVID-19 Pandemic / Resiliencia en cuidadores en casa de adultos mayores durante la pandemia del COVID-19 / Resiliência do cuidador domiciliar da pessoa idosa durante a pandemia da COVID-19

Abstract: Objective: This study aims to identify the resilience level in formal and informal in-home caregivers of older adults in Ibagué during the COVID-19 pandemic. Methods: Quantitative, descriptive, cross-sectional study with a convenience sample of 49 formal and informal in-home caregivers of older adults. We administered the Brief Resilient Coping Scale (BRSC), an instrument consisting of four items, to these caregivers. The questionnaire was self-completed and, in some cases, answered by telephone. The data were collected in April 2020. Results: 35 women and 14 men participated in this study. The formal (69.4 %) and informal caregivers, mostly family (30.6 %), were between 18 and 30 years old (65.30 %). Their resilience levels were high (16.3 %), moderate (61.3 %), and low (22.4 %). There was a significant association between caregiver type and resilience level (p < 0.05). Other studied covariates did not show a significant association. Conclusions: Due to stressful situations caused by care during social isolation and the risk of death of the elderly by COVID-19, strategies to improve resilience related to emotional, cognitive, and sociocultural interventions in the caregiver should be considered.

Resumen: Objetivo: este estudio tiene como objetivo identificar el nivel de resiliencia en cuidadores formales e informales de adultos mayores en el hogar en Ibagué durante la pandemia del COVID-19. Métodos: estudio cuantitativo, descriptivo y transversal con una muestra de conveniencia de 49 cuidadores formales e informales de adultos mayores en el hogar. Aplicamos la Escala Breve de Afrontamiento Resiliente (BRSC), un instrumento que consta de cuatro puntos, para estos cuidadores. Ellos mismos completaron el cuestionario y, en algunos casos, lo respondieron por teléfono. Los datos se recopilaron en abril de 2020. Resultados: 35 mujeres y catorce hombres participaron en este estudio. Los cuidadores formales (69,4 %) y los cuidadores informales, en su mayoría familiares (30,6 %), tenían entre 18 y 30 años (65,30 %). Sus niveles de resiliencia fueron altos (16,3 %), moderados (61,3 %) y bajos (22,4 %). Hubo una asociación significativa entre el tipo de cuidador y el nivel de resiliencia (p< 0,05). Otras covariables estudiadas no mostraron una asociación significativa. Conclusiones: debido a las situaciones de estrés causadas por la atención durante el aislamiento social y el riesgo de muerte de los adultos mayores por COVID-19, se deben considerar estrategias para mejorar la resiliencia mediante intervenciones emocionales, cognitivas y socioculturales en el cuidador.

Resumo: Objetivo: o objetivo deste estudo é identificar o nível de resiliência de cuidadores domiciliares formais e informais de idosos maiores no lar em Ibagué, Colômbia, durante a pandemia ocasionada pela COVID-19. Métodos: estudo quantitativo, descritivo e transversal, com uma amostra de conveniência de 49 cuidadores domiciliares formais e informais de idosos. Aplicamos a Escala Breve de Enfrentamento Resiliente, um instrumento que consta de quatro artigos, para esses cuidadores. O questionário foi respondido por eles mesmos e, em alguns casos, por telefone. Os dados foram coletados em abril de 2020. Resultados: 35 mulheres e 14 homens participaram deste estudo. Cuidadores formais (69,4 %) e cuidadores informais, em sua maioria familiares (30,6 %), tinham entre 18 e 30 anos (65,30 %). Seus níveis de resiliência foram altos (16,3 %), moderados (61,3 %) e baixos (22,4 %). Houve uma associação significativa entre o tipo de cuidador e o nível de resiliência (p < 0,05). Outras covariáveis estudadas não apresentaram uma associação significativa. Conclusões: devido às situações de estresse causadas pelo atendimento durante o isolamento social e ao risco de morte de idosos por causa da COVID-19, devem ser consideradas estratégias para melhorar a resiliência com relação às intervenções emocionais, cognitivas e socioculturais no cuidador.

Measuring the quality of care in nursing home residents with early-onset neurodegenerative diseases: a scoping review.

BACKGROUND: Nursing home residents with early-onset neurodegenerative diseases are often younger in comparison with other residents, and need different, often more complex care. Accordingly, the measurements currently used for measuring quality of care in nursing homes may not be suitable for use in this target group. Little is known about the experiences of these residents and of their (in) formal caregivers regarding the quality of care they receive. Therefore, the aim of this scoping review is to explore which instruments are available for measuring the quality of care for nursing home residents with early-onset neurodegenerative diseases (excluding dementia), from the perspective of the resident and of (in) formal caregivers. METHODS: A literature search was performed in the databases Pubmed, Embase, Web of Science and Cinahl. The search strategy consisted of four main concepts: neurodegenerative diseases, quality of care, nursing homes and perspectives of residents, (in) formal caregivers. Studies were included if they used instruments and/or strategies to measure quality of care, focused on nursing home residents with early-onset neurodegenerative diseases and the perspective of either the resident or (in) formal caregiver. RESULTS: From a total of 809 identified articles, 87 full text articles were screened for eligibility. Five studies were included, only one of which described an instrument. The other four used topic lists and/or themes to measure quality of care. In total, 60 items related to quality of care could be derived. From these 60 items, eight overarching domains were found, with a subdivision into items derived, respectively, from the residents', informal and formal caregivers' perspective: 'emotional support', 'physical support', 'social support', 'care', 'care content', 'expertise', 'communication' and 'organization of care'. CONCLUSIONS: Currently, there are no methods for assessing the quality of care specifically focused on nursing home residents with early-onset neurodegenerative diseases. Therefore, the items retrieved in this review give an overview of important topics for measuring the quality of care for this target group, from the perspective of the resident, and of the informal and formal caregivers. These items might be used to develop a tailored instrument for assessing the quality of care for nursing home residents with early-onset neurodegenerative diseases.

Relationship between depression and burden in caregivers of alzheimer disease patients / Relación entre depresión y sobrecarga en cuidadores de pacientes con demencia tipo alzhéimer

Resumen El alzhéimer es el tipo de demencia más frecuente. Debido al deterioro progresivo que produce, los pacientes requieren cuidado permanente. Las personas que asumen el rol de cuidadores de estos pacientes pueden sufrir efectos adversos en el ámbito psicológico, físico y social. Se realizó un estudio no experimental, transversal correlacional, con el objetivo de establecer la relación entre los niveles de depresión y sobrecarga en una muestra de 84 cuidadores formales y 92 informales de pacientes con esta enfermedad de Bucaramanga (Colombia), utilizando el inventario de depresión estado-rasgo (IDER) y la escala de sobrecarga de Zarit (versión para cuidadores informales y versión ajustada para cuidadores formales). Se encontró correlación en el ámbito de p<0.01 entre sobrecarga y depresión (estado y rasgo) en los cuidadores informales, pero no en los formales. Resulta importante profundizar en la relación entre el afecto negativo y la sobrecarga, así como estudiar las variables contextuales que podrían incrementar el malestar de ambos grupos de cuidadores.

Abstract Alzheimer's disease (AD) is the most common type of dementia. Due to the progressive decline it generates, patients require permanent care. People who take care of these patients may suffer negative psychological, physical and social consequences. The aim of the study was to determine the correlation between the level of depression and burden in a sample of 84 formal and 92 informal caregivers of patients diagnosed with AD, in the city of Bucaramanga, Colombia. It was carried out a Non-experimental, cross-sectional and correlational study. We used the Depression State/Trait Inventory, and Zarit's Burden Interview (version for informal caregivers and another one adjusted for using with formal caregivers). We found a statistically significant correlation (p<.01) between burden and depression (state/trait) in the sample of informal caregivers, but not in the formal caregivers. Further research about the relationship between negative affect and burden, and the influence of contextual variables in that relationship is necessary.

Signs and Symptoms of Impending Death in End-of-life Elderly Dementia Sufferers: Point of View of Formal Caregivers in Rural Areas: -A Qualitative Study-.

OBJECTIVE: The aim of the present study was to clarify the signs and symptoms of impending death in end-of-life senile dementia from the point of view of formal caregivers in rural areas. Patient/Materials and Methods: We used qualitative data based on retrospective analyses. The data was gathered following a workshop on end-of-life care of the elderly with dementia attended by formal caregivers that was held in Iga City, Mie Prefecture, Japan, in September 2011. There was a total of 29 workshop participants. The workshop products were created in the first session of the workshop entitled "Signs of death." During the session, we used the brainstorming method, and participants took turns stating at least two signs, symptoms or premonitions of death. In the end, there were 93 cards in total displaying signs of impending death observed in the end stage of dementia. These 93 entries were then classified into clear categories. RESULTS: The categories defined were breathing disorder, consciousness decline, vital power decline, reduced oral intake, feces disorder, calm and peaceful character, blood pressure decline, change in skin color, patient odor, edema, preagonal vital power, body temperature decline, bedsore/wound deterioration, body weight reduction, cyanosis, and oliguria. The most frequently cited symptoms fell in the breathing disorder category (12 cards), followed by consciousness decline (9 cards), vital power decline (9 cards), reduced oral intake (6 cards), and feces disorder (6 cards). Also frequently mentioned were symptoms falling in the calm and peaceful character, patient odor and preagonal vital power categories. CONCLUSION: The results show that formal caregivers in rural areas identified breathing disorder as a top indicator of impending death in end-of-life senile dementia cases. The results also highlight some other characteristic signs of impending death, such as preagonal vital power and calm and peaceful character. This research could help develop formal caregivers' observational skills in the end-of-life care settings.

Signs and Symptoms of Impending Death in End-of-life Elderly Dementia Sufferers: Point of View of FormalCaregivers in Rural Areas / Journal of Rural Medicine

<b>Objective:</b> The aim of the present study was to clarify the signs and symptoms of impending death in end-of-life senile dementia from the point of view of formal caregivers in rural areas.<br><b>Patient/Materials and Methods:</b> We used qualitative data based on retrospective analyses. The data was gathered following a workshop on end-of-life care of the elderly with dementia attended by formal caregivers that was held in Iga City, Mie Prefecture, Japan, in September 2011. There was a total of 29 workshop participants. The workshop products were created in the first session of the workshop entitled “Signs of death.” During the session, we used the brainstorming method, and participants took turns stating at least two signs, symptoms or premonitions of death. In the end, there were 93 cards in total displaying signs of impending death observed in the end stage of dementia. These 93 entries were then classified into clear categories.<br><b>Results:</b> The categories defined were breathing disorder, consciousness decline, vital power decline, reduced oral intake, feces disorder, calm and peaceful character, blood pressure decline, change in skin color, patient odor, edema, preagonal vital power, body temperature decline, bedsore/wound deterioration, body weight reduction, cyanosis, and oliguria. The most frequently cited symptoms fell in the breathing disorder category (12 cards), followed by consciousness decline (9 cards), vital power decline (9 cards), reduced oral intake (6 cards), and feces disorder (6 cards). Also frequently mentioned were symptoms falling in the calm and peaceful character, patient odor and preagonal vital power categories.<br><b>Conclusion:</b> The results show that formal caregivers in rural areas identified breathing disorder as a top indicator of impending death in end-of-life senile dementia cases. The results also highlight some other characteristic signs of impending death, such as preagonal vital power and calm and peaceful character. This research could help develop formal caregivers’ observational skills in the end-of-life care settings.