What determines informal care need among community-dwelling older adults in China? Results from a longitudinal study.

BACKGROUND: With an intensified aging population and an associated upsurge of informal care need in China, there is an ongoing discussion around what factors influence this need among older adults. Most existing studies are cross-sectional and do not focus on older people living in the community. Conversely, this study empirically explores the factors that affect informal care need of Chinese community-dwelling older individuals based on longitudinal data. METHODS: This study constructed panel data using the China Health and Retirement Longitudinal Research Study (CHARLS) from 2011 to 2018 for analysis. Generalized linear mixed models were used to analyze the factors affecting reception of informal care, and linear mixed models were used to analyze the factors affecting informal care sources and intensity. RESULTS: During the follow-up period, 7542, 6386, 5087, and 4052 older adults were included in 2011-2018, respectively. The proportion receiving informal care increased from 19.92 to 30.78%, and the proportion receiving high-intensity care increased from 6.42 to 8.42% during this period. Disability (estimate = 4.27, P < 0.001) and living arrangement (estimate = 0.42, P < 0.001) were the critical determinants of informal care need. The rural older adults reported a greater tendency to receive informal care (estimate = 0.14, P < 0.001). However, financial support from children did not affect informal care need (P > 0.05). CONCLUSIONS: At present, there is a great demand for the manpower and intensity of informal care, and the cost of informal care is on the rise. There are differences in informal care needs of special older groups, such as the oldest-old, living alone and severely disabled. In the future, the region should promote the balance of urban and rural care service resources, rationally tilt economic support resources to rural areas, reduce the inequality of long-term care resources, improve the informal care support system, and provide a strong community guarantee for the local aging of the older adults.

Older people's experience and related factors while receiving home-based long-term care services: a qualitative study.

BACKGROUND: Home-based care may cover anything from 24-hour support for people with a disability, to short-term post-discharge care, or to periodic assistance with simple tasks such as domestic aid for frail older people. The process can be complex and time-consuming and requires coordination between the individual, their family caregivers, and healthcare providers. Receiving care at home can also lead to social isolation as older people may have limited opportunities for social interaction. This study aimed to investigate older people's experience and related factors while receiving home-based long-term care services. METHODS: A qualitative study was used. Face-to-face individual interviews were conducted with people who were receiving nursing care in their homes (N = 17) and analyzed through thematic analysis. RESULTS: Analysis of interview data resulted in the identification of three major themes that captured participants' personal experiences regarding long-term care in the home: (1) Challenges faced by older people receiving long-term care at home; (2) The impact of home care services on people's social well-being; and (3) Older people's contradictory emotions regarding care delivery. CONCLUSIONS: Findings of the study revealed that the most important and challenging factors in home care from the perspective of older people were social well-being, religious needs, and physical needs. They considered the nurses who provided these services as family members and the most significant helpers in their daily activities. Participants expressed a desire for more services in the future.

Caregiving risk perception characteristics and associated factors among informal caregivers of functionally dependent elderly individuals at home: a qualitative study.

BACKGROUND: This study explored risk perception characteristics and influencing factors among informal caregivers of functionally dependent elderly individuals at home, aiming to improve caregivers' caregiving risk perception and coping abilities and ultimately enhance the quality of life for these individuals. METHODS: We used purposive sampling to select 22 informal caregivers from a community in Zhengzhou City, Henan Province, China, between March and September 2023 and conducted face-to-face semi-structured in-depth interviews. The data were analyzed using Colaizzi's seven-step analysis method. RESULTS: We extracted two themes, caregiving risk perception characteristics and caregiving risk perception associated factors, and eight sub-themes, perceived risk possibility, perceived risk anticipation, perceived severity of consequences, past caregiving experiences, health literacy, psychological status, caregiving burden, and family social support. CONCLUSION: There were differences in how informal caregivers perceived the risks associated with caring for functionally dependent elderly individuals at home, which various factors could influence. It was essential to provide training that covered the knowledge and skills needed for caregiving, improve caregivers' awareness of safety risks, and establish a correct perception of caregiving risks. The government must construct and refine a comprehensive framework for caregiver respite services. Simultaneously, healthcare professionals should proactively undertake health education endeavors to augment the recognition of care safety risks among informal caregivers, thereby cultivating an accurate awareness of care risk perception.

Assessing oral health-related quality of life among older people in home-based care - survey results of the InSEMaP study in Germany.

BACKGROUND: Older people receiving home-based care (HBC) often face barriers to access preventive oral health care (OHC) and dental treatments. Leading to deterioration of their oral healthcare. It is further deteriorated by factors such as increasing burden of systemic diseases, medicinal side effects, limited mobility, financial constraints and lack of professional OHC at home. Older people also struggle to maintain necessary daily oral hygiene, leading to malnutrition, weight loss, and a risk of a further health degradation. This cross-sectional survey aimed to investigate the oral health-related quality of life (OHRQoL) and their associated factors in HBC recipients. METHODS: 5,280 older people (≥ 60 years) living in Hamburg, who were in need of care and insured with statutory health insurance DAK-Gesundheit received the questionnaire, which included the German version of the Oral Health Impact Profile (OHIP G-14) and, the EQ-5D health-related quality of life (HRQoL) measure as well as further questions regarding the extent of informal social support, subjective oral health status, oral health behaviour, subjective cognitive status, and socio-demographic variables. RESULTS: The participants (n = 1,622) had a median age of 83.2 years, with 72.0% of the sample being female. Nearly two thirds of the sample reported that their independence or abilities were significantly impaired (care level 2). Regarding oral health impacts, 40.0% of the participants reported experiencing at least one of the fourteen possible prevalent impacts of the OHIP-G14 fairly often or very often. A multivariate regression model on the severity of oral health impacts revealed, that a better HRQoL, a positive perception of one's own dental status, fewer visits to dental practices, and no need for support in OHC were associated with better OHRQoL. Conversely, respondents with a negative perception of their oral health status, more frequent visits to a dental practice, a need for support in OHC, and subjective memory impairment showed poorer OHRQoL. CONCLUSIONS: The results highlight the risk for poor oral health among older people in HBC. We conclude that there is an urgent need to prioritise oral health, especially as poor oral health can further compromise the systemic wellbeing of these already care dependent population.

Home care models dedicated to COVID-19 patients: the experience of a Local Health District of Veneto Region (Italy).

Background: During COVID-19 pandemic, health professionals have been working in an extreme uncertainty context. Affected patients needed to be cared at home as long as possible to avoid virus spreading and hospital resources saturation. The Veneto Regional Administration (North-east of Italy) released Regional guidelines about it. The Western Healthcare District of the Local Health Authority of the city of Vicenza (180,000 inhabitants) implemented a healthcare pathway following them. Aim of the study is to describe the results and outcomes of such implementation. Methods: In the implemented health care pathway, a new service called "Special Unit of continuity of care" (USCA) with physicians and nurses has been dedicated to the prise en charge at home of patients suffering from Sars-CoV-2. They were referred to the USCA by general practitioners or by hospital specialists, and managed through a daily clinical monitoring by regular home visits and phone calls, specialist consultations and therapy management. In order to prevent hospital admission, an oxygen concentrator when possible has been employed and managed at home by the members of the USCA when the oxygen saturation was below 93%. An observational retrospective study has been conducted using anonymized data from different databases: the USCA activity database (from 12/01/20 to 21/31/21), the hospital and Emergency Department discharge databases, and the "healthcare co-payments exemptions database". The latter database refers to the people excluded - because of their chronicity - from the co-payment of a list of medical exams and services. Descriptive and multivariate logistic regression analyses have been implemented. Results: 1,419 patients suffering from Sars-CoV-2 have been cared and managed by the USCA in the considered period of time (mean 11.4 days), of whom 787 (55.5%) with at least one chronic condition (described in the above quoted "healthcare co-payments exemption database") and 261 provided with oxygen concentrator. 275 (19.4%) needed a hospital admission, 39 (2.8%) in intensive unit; 53 died during hospitalization (3.8%). Out of the 261 patients utilizing oxygen concentrator, 103 have been admitted to hospital (39.5%), 7.3% in intensive unit and 8.0% died. In implemented multivariate analyses, the use of oxygen concentrator, proxy measure of the severity of the condition, is the major determinant for the risk of hospital admission (adj OR: 3.2, CI 2.3-4.3) and of dying within 30 days (adj OR: 2.8 CI 1.5-5.1). Among the 261 patients provided with oxygen concentrator, 158 (60,5%) have been managed at home without any admission to emergency department and/or hospitalization. Conclusions: In an uncertain context such as COVID-19 pandemic, the already-implemented home care model has been modified by integrating the USCA physicians and nurses and specialist care networks to prevent hospitalization and the sense of isolation and abandonment of people as much as possible. Almost 1,500 patients suffering from COVID-19 have been cared for at home over 13 months by such new service with complex and multidisciplinary activities. The risk of hospitalization and death appears determined by the severity of the pathology with high and significant OR 60% of patients with oxygen concentrators who, despite an initial high hyposaturation were not hospitalized, represent, partly, the group of patients who would have been requiring hospital care in the absence of a home care pathway in a standard situation.

Expenditure projections for community home-based care services for older adults with functional decline in China.

INTRODUCTION: Difficulty in identifying the functional status of older adults creates an imbalance between the supply and demand for community home-based care. Using a multi-level functional classification system to guide care cost measurement may optimize care resources and meet diverse eldercare demands. METHODS: The Markov model was used to project the older population size in different functional decline (FD) statuses. The project cost and the man-hour costing method were combined to forecast the cost of community home-based care for older adults with FD. RESULTS: The projected cost of eldercare increased from 1668.623 billion yuan in 2020 to 2836.754 billion yuan in 2035. By 2035, the total cost for community-based home care for those in pathological development of FD statuses such as "viability disorder," "acute disease," "somatic functional disorder," and "sub-disorder" was projected to be 1094.591 billion, 433.855 billion, 1256.236 billion, and 52.072 billion yuan, respectively, which is 1.24, 1.58, 1.78, and 0.49 times higher than the results by the man-hour costing method. Family caregiving costs are about three times those of professional caregivers. CONCLUSION: The escalating cost of providing graded care for older adults, particularly by family caregivers, presenting a significant evidence for the need to optimize resource allocation and develop a robust human resources plan for community home-based care.

Investigating community-based care service factors delaying residential care home admission of community dwelling older adults and cost consequence.

OBJECTIVES: To examine factors contributing to delaying care home admission; and compare the rates of care home admission and cost consequence between two government subsidised programmes, Veterans' Affairs Community Nursing (VCN) and Home Care Package (HCP). METHODS: Our national, population-based retrospective cohort study and cost analysis used existing, de-identified veterans' claims databases (2010-19) and the Registry of Senior Australians Historical Cohort (2010-17), plus aggregate programme expenditure data. This involved 21,636 VCN clients (20,980 aged 65-100 years), and an age- and sex-matched HCP cohort (N = 20,980). RESULTS: Service factors associated with lower risk of care home admission in the VCN cohort were periodic (versus continuous) service delivery (HR 0.27 [95%CI, 0.24-0.31] for ≤18 months; HR 0.89 [95%CI, 0.84-0.95] for >18 months), and majority care delivered by registered nurses (versus personal care workers) (HR 0.86 [95%CI, 0.75-0.99] for ≤18 months; HR 0.91 [95%CI, 0.85-0.98] for >18 months). In the matched cohorts, the time to care home admission for VCN clients (median 28 months, IQR 14-42) was higher than for HCP clients (14, IQR 6-27). Within 5 years of service access, 57.6% (95%CI, 56.9-58.4) of HCP clients and 26.6% (95%CI, 26.0-27.2) of VCN clients had care home admission. The estimated cost saving for VCN recipients compared to HCP recipients over 5 years for relevant government providers was over A$1 billion. CONCLUSIONS: Compared to an HCP model, individuals receiving VCN services remained at home longer, with potentially significant cost savings. This new understanding suggests timely opportunity for many countries' efforts to enhance community-based care services.

Comparative effectiveness of verbal instruction versus video-based education (VIVid) among family caregivers for improving the quality of life in advanced head and neck cancer patients receiving palliative care in Eastern India: a randomized controlled trial.

PURPOSE: To determine if video-based educational intervention compared to the standard verbal guidelines, provided to caregivers on home-based palliative care could enhance the quality of life (QoL) in advanced head and neck cancer (HNC) patients. METHODS: The study employed a prospective, two-arm parallel-group, randomized controlled trial design. Investigators prepared a real-world demonstrational video of ten minutes duration regarding home-based care for family caregivers, with voice-over in Odia language (Eastern India). The contents of the video addressed the management of common problems in palliative care among HNC patients. This study included 180 participants, 90 patient & caregiver dyads randomized to interventional (video-based education) or control (verbal instruction) groups. Patients' QoL was measured at baseline and 3 weeks follow-up using EORTC QLQ C30. Data were analyzed descriptively, and the Chi-square, Mann-Whitney U, T-test, spearman correlation, and multiple hierarchical regression analyses were employed for statistical analysis, with a significance level of p < 0.05. RESULTS: Seventy participant dyads completed the planned two assessments: baseline and at the end of 3rd week (Intervention = 37; Control = 33). The intervention group showed a significant improvement in the patient's health-related QoL, physical, emotional, and social functioning. Symptom burden reduction was observed for pain, nausea, and fatigue. A significant increase in the change in QoL with the video-based education group (VBE) compared to the verbal instruction (VI) group after adjusting for age, gender, physical functioning, and pain symptomology (adjusted R2 = 0.402) was noted. CONCLUSION: VBE intervention using smart-phone may offer caregivers a viable means of enhancing self-management while improving patients' QoL within the socio-cultural challenges for home-based palliative care in India. Further research on training caregivers using digital interventions and home-based visits is recommended. TRIAL REGISTRATION NUMBER: CTRI/2021/06/034473 [Registered on: 30/06/2021].

Defining a taxonomy of Medicare-funded home-based clinical care using claims data.

BACKGROUND: As more Americans age in place, it is critical to understand care delivery in the home. However, data on the range of home-based services provided by Medicare is limited. We define a taxonomy of clinical care in the home funded through fee-for-service Medicare and methods to identify receipt of those services. METHODS: We analyzed Fee-for-service (FFS) Medicare claims data from a nationally-representative cohort of older adults, the National Health and Aging Trends Study (NHATS), to identify home-based clinical care. We included 6,664 NHATS enrollees age ≥ 70 and living in the community, observed an average of 3 times each on claims-linked NHATS surveys. We examined provider and service type of home-based clinical care to identify a taxonomy of 5 types: home-based medical care (physician, physician assistant, or nurse practitioner visits), home-based podiatry, skilled home health care (SHHC), hospice, and other fee-for-service (FFS) home-based care. We further characterized home-based clinical care by detailed care setting and visit types. RESULTS: From 2011-2016, 17.8%-20.8% of FFS Medicare beneficiaries age ≥ 70 received Medicare-funded home-based clinical care. SHHC was the most common service (12.8%-16.1%), followed by other FFS home-based care (5.5%-6.5%), home-based medical care (3.2%-3.9%), and hospice (2.6%-3.0%). Examination of the other-FFS home-based care revealed imaging/diagnostics and laboratory testing to be the most common service. CONCLUSIONS: We define a taxonomy of clinical care provided in the home, serving 1 in 5 FFS Medicare beneficiaries. This approach can be used to identify and address research and clinical care gaps in home-based clinical care delivery.

Home-based initiatives for acute management of COVID-19 patients needing oxygen: differences across The Netherlands.

OBJECTIVE: During the COVID-19 pandemic new collaborative-care initiatives were developed for treating and monitoring COVID-19 patients with oxygen at home. Aim was to provide a structured overview focused on differences and similarities of initiatives of acute home-based management in the Netherlands. METHODS: Initiatives were eligible for evaluation if (i) COVID-19 patients received oxygen treatment at home; (ii) patients received structured remote monitoring; (iii) it was not an 'early hospital discharge' program; (iv) at least one patient was included. Protocols were screened, and additional information was obtained from involved physicians. Design choices were categorised into: eligible patient group, organization medical care, remote monitoring, nursing care, and devices used. RESULTS: Nine initiatives were screened for eligibility; five were included. Three initiatives included low-risk patients and two were designed specifically for frail patients. Emergency department (ED) visit for an initial diagnostic work-up and evaluation was mandatory in three initiatives before starting home management. Medical responsibility was either assigned to the general practitioner or hospital specialist, most often pulmonologist or internist. Pulse-oximetry was used in all initiatives, with additional monitoring of heart rate and respiratory rate in three initiatives. Remote monitoring staff's qualification and authority varied, and organization and logistics were covered by persons with various backgrounds. All initiatives offered remote monitoring via an application, two also offered a paper diary option. CONCLUSIONS: We observed differences in the organization of interprofessional collaboration for acute home management of hypoxemic COVID-19 patients. All initiatives used pulse-oximetry and an app for remote monitoring. Our overview may be of help to healthcare providers and organizations to set up and implement similar acute home management initiatives for critical episodes of COVID-19 (or other acute disorders) that would otherwise require hospital care.

Comparison of home-based palliative care delivered by community health workers versus usual care: research protocol for a pilot randomized controlled trial.

BACKGROUND: Research studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients. METHODS: Utilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload. DISCUSSION: Pal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas. TRIAL REGISTRATION (TRN): ClinicalTrials.gov ID# NCT04972630.

A hybrid systematic narrative review of instruments measuring home-based care nurses' competency.

AIM: The aim of the study was to identify and synthesize the contents and the psychometric properties of the existing instruments measuring home-based care (HBC) nurses' competencies. DESIGN: A hybrid systematic narrative review was performed. REVIEW METHODS: The eligible studies were reviewed to identify the competencies measured by the instruments for HBC nurses. The psychometric properties of instruments in development and psychometric testing design studies were also examined. The methodological quality of the studies was evaluated using the Medical Education Research Study Quality Instrument and COSMIN checklist accordingly. DATA SOURCES: Relevant studies were searched on CINAHL, MEDLINE (via PubMed), EMBASE, PsychINFO and Scopus from 2000 to 2022. The search was limited to full-text items in the English language. RESULTS: A total of 23 studies reporting 24 instruments were included. 12 instruments were adopted or modified by the studies while the other 12 were developed and psychometrically tested by the studies. None of the instruments encompassed all of the 10 home-based nursing care competencies identified in an earlier study. The two most frequently measured competencies were the management of health conditions, and critical thinking and problem-solving skills, while the two least measured competencies were quality and safety, and technological literacy. The content and structural validity of most instruments were inadequate since the adopted instruments were not initially designed or tested among HBC nurses. CONCLUSION: This review provides a consolidation of existing instruments that were used to assess HBC nurses' competencies. The instruments were generally not comprehensive, and the content and structural validity were limited. Nonetheless, the domains, items and approaches to instrument development could be adopted to develop and test a comprehensive competency instrument for home-based nursing care practice in the future. IMPACT: This review consolidated instruments used to measure home-based care nurses' competency. The instruments were often designed for ward-based care nurses hence a comprehensive and validated home-based nursing care competency instrument is needed. Nurses, researchers and nursing leaders could consider the competency instruments identified in this review to measure nurses' competencies, while a home-based nursing care competency scale is being developed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was required in this review.

How are successful matches made between homecare workers and older care receivers of different cultural backgrounds?

Understanding the process as well as the challenges and successes of matching homecare workers with older care receivers from differing cultural backgrounds may enhance practices that maximize quality-of-care outcomes and perceptions of quality of life for older adults, especially those "aging in place." Guided by a person-centered, consumer directed care model, this paper outlines the need for research that specifically aims to describe the matching process used by care coordinators when assigning homecare workers to older care receivers of different cultural backgrounds and how the needs and preferences of care receivers are balanced with the characteristics, skills, and capacities of the available pool of homecare workers.

Ethical sensitivity and compassion in home care: Leaders' views.

BACKGROUND: With an increasing older population, the pressure on home care resources is growing, which makes it important to ensure the maintenance of quality care. It is known that compassion and ethical sensitivity can improve the quality of care, but little is known about care leaders' perceptions on ethical sensitivity and compassion in home care and how it is associated with staff competence and thus quality of care. AIM: The aim of the study was to explore home care leaders' perceptions of ethical sensitivity and compassion associated with care quality in home care. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach with a qualitative explorative design was used. The data consists of texts from 10 in-depth interviews with home care leaders. Content analysis was used as a method. ETHICAL CONSIDERATIONS: The study was conducted following the ethical guidelines of the Declaration of Helsinki and the Finnish Advisory Board of Research Ethics. Research ethics permission was applied for from a Research Ethics Board. FINDINGS: One overall theme and four subthemes were found. The overall theme was: "Compassion provides deeper meaning and ethical sensitivity provides means for knowing how to act". DISCUSSION: If nurses fail to be sensitive and compassionate with patients, good and high qualitative home care cannot be achieved. Ethical sensitivity and compassion can be seen as resources in home care but the organization and the care leaders need to provide the support for these to develop. CONCLUSION: This study provides an understanding of the meaning of ethical sensitivity and compassion as sources of strength and their link to quality of care in a home care context. Further studies could focus on how to build compassion and ethical sensitivity into home-based care and how to ensure adequate support for healthcare professionals' compassion and ethical sensitivity.

Blurred lines: Ethical challenges related to autonomy in home-based care.

BACKGROUND: Home-based care workers mainly work alone in the patient's home. They encounter a diverse patient population with complex health issues. This inevitably leads to several ethical challenges. AIM: The aim is to gain insight into ethical challenges related to patient autonomy in home-based care and how home-based care staff handle such challenges. RESEARCH DESIGN: The study is based on a 9-month fieldwork, including participant observation and interviews in home-based care. Data were analysed with a thematic analysis approach. PARTICIPANTS AND RESEARCH CONTEXT: The study took place within home-based care in three municipalities in Eastern Norway, with six staff members as key informants. ETHICAL CONSIDERATIONS: The Norwegian Agency for Shared Services in Education and Research evaluated the study. All participants were competent to consent and signed an informed consent form. FINDINGS: A main challenge was that staff found it difficult to respect the patient's autonomy while at the same time practicing appropriate care. We found two main themes: Autonomy and risk in tension; and strategies to balance autonomy and risk. These were explicated in four sub-themes: Refusing and resisting care; when choosing to live at home becomes risky; sweet-talking and coaxing; and building trust over time. Staff's threshold for considering the use of coercion appeared to be high. CONCLUSIONS: Arguably, home-based care staff need improved knowledge of coercion and the legislation regulating it. There is also a need for arenas for ethics reflection and building of competence in balancing ethical values in recurrent ethical problems.

[The situation of informal caregivers of working age in the COVID-19 pandemic-results of an online survey in Germany]. / Die Situation pflegender Angehöriger im erwerbsfähigen Alter in der COVID-19-Pandemie ­ Ergebnisse einer Onlinebefragung in Deutschland.

BACKGROUND: The consequences of the COVID-19 pandemic have posed major challenges to different groups. One of these are informal caregivers. This study investigates the changes the pandemic has caused for informal caregivers and the extent to which quality of life and burden of care have changed for specific subgroups. METHODS: Data for this cross-sectional study was gathered in the summer of 2020 in a convenient sample of informal caregivers (< 67 years of age, N = 1143). In addition to sociodemographic data, information on the care situation, compatibility of care and work, as well as stress and quality of life was collected in an online survey. The analysis of care situations and compatibility of care and work is done descriptively. Logistic regression models are used for a subgroup analysis of quality of life and care burden. RESULTS: The care situation has changed for 54.7% of participants and has become more time consuming. For 70.8% of respondents, the COVID-19 pandemic has made it even more difficult to balance care-giving and work. However, most respondents were satisfied with their employers' pandemic management (65.9%). A sharp decline in the quality of life and an increase in the burden of care for informal caregivers was ascertained. Both developments are stronger for young and female caregivers and for those caring for people with a greater need of support. DISCUSSION: The results indicate that living situations worsened for a substantial proportion of informal caregivers during the COVID-19 pandemic. Policymakers should recognize additional challenges that informal caregivers have faced since the outbreak of the COVID-19 pandemic and how they vary by subgroups. It is important to include home-based informal care as well as other care settings in future pandemic concepts.

Effectiveness of home-based end-of-life care.

Commentary on: Shepperd S, Gonçalves-Bradley DC, Straus SE, Wee B. Hospital at home: home-based end-of-life care. Cochrane Database of Systematic Reviews. 2021;Issue 3. 10.1002/14651858.CD009231.pub3 When a person has been diagnosed with a terminal illness and has less than 6 months to live, and curative treatments are no longer effective, end-of-life care or hospice care may be initiated. Studies suggest that approximately 7 million people a year are given this type of care, which strives to reduce distress and improve quality of life for patients and their families by providing comprehensive physical, psychosocial, and spiritual support. Surveys show that most individuals would prefer to receive this care at home when given the option. However, there are still some uncertainties regarding the effects of end-of-life care at home on a range of important patient outcomes. As a result, a Cochrane review was conducted/updated to study the effects of receiving end-of-life care at home, looking at these outcomes. The aim of this commentary is to critically appraise this Cochrane review and expand upon the findings of the review in context to practice.

Exploring Perception of Terminally Ill Cancer Patients about the Quality of Life in Hospice based and Home based Palliative Care: A Mixed Method Study.

Objectives: The objectives of the study were to evaluate the perceptions and performance of terminally ill cancer patients regarding the quality of palliative care at different settings and to measure their quality of life (QOL) at the end of life. Material and Methods: This comparative, parallel and mixed method study was conducted at the Community Oncology Centre, Ahmedabad, among 68 terminally ill cancer patients as per inclusion criteria; who were receiving hospice (HS)-based and home (HO)-based palliative care under 2 months permitted by the Indian Council of Medical Research. In this parallel and mixed method study, qualitative findings were supplemented by quantitative data with both components executed simultaneously. Interview data were recorded by taking extensive notes during interviews along with an audio recording. Interviews were transcribed verbatim and a thematic approach was adopted. QoL questionnaire ('FACIT© System') was used for the assessment of QOL in terms of four dimensions. Data were analysed using the appropriate statistical test on Microsoft Excel. Results: The qualitative data (primary component) analysed under five themes - staff behaviour, comfort and peace, enough and consistent care, nutrition and moral support, in the present study favours a HS-based setting more than a HO-based setting. Among all four subscale scores, physical well-being and emotional well-being subscale scores were statistically significantly associated with the place of palliative care. Functional Assessment of Cancer Therapy-General (FACT-G) total score was high among patients getting HO-based palliative (mean = 67.64) care than HS-based palliative care (mean = 56.56) and the difference between total FACT-G scores was statistically significant (unpaired t-test = 2.20, P = 0.03). Conclusion: Overall, with the primary component favouring HS care and higher scores obtained in HO-based patients, the present study advocates the necessity for palliative services to expand their coverage regardless of whether they are provided at HS or HO, as it has improved the QOL of cancer patients significantly.

Pediatric palliative care at home by Home Care Unit: how home nurses feel?

PURPOSE: Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. METHODS: This was a retrospective, observational, single-center study. Home nurses who had provided palliative pediatric care in the past 16 months were included. RESULTS: Fifty-six questionnaires were sent out (response rate of 44.6%). Eight home nurses had never provided pediatric palliative care. Three-quarters of the home nurses (76%) acknowledged having misgivings accepting these duties. The factors that facilitated providing this care were the availability of the HCU doctor and nurses, the proactiveness of the HCU team, and house calls. In 76% of cases, the involvement of the home nurses exceeded the strictly professional setting. Forty-six percent of the home nurses were amenable to undertaking another pediatric palliative care engagement, although 48% deemed the remuneration to be somewhat lacking. CONCLUSION: The analysis allowed us to identify several prerequisites for these care engagements: the availability and the proactiveness of the HCU team, communication, and planning. This study showed the pronounced personal involvement of home nurses in complex situations, with both the child and their entire family. Home nurses appear to be skilled at using the resources available to manage the exhaustion that can arise with such an engagement. Facilitating and respecting the choice to stay home of the child and their family was meaningful to them. The personal and professional enrichment were a source of motivation despite certain limitations (availability, remuneration).

Barriers and facilitators to providing home-based care in a pandemic: policy and practice implications.

OBJECTIVE: The purpose of this study is to describe the experiences of home-based care providers (HBCP)  in providing care to older adults during the pandemic in order to inform future disaster planning, including during pandemics. DESIGN: Qualitative inquiry using an abductive analytic approach. SETTING AND PARTICIPANTS: Home-based care providers in COVID-19 hotspots. METHODS: Telephone interviews were conducted with 27 participants (administrators, registered nurses and other members of the allied healthcare team), who provided in-home care during the pandemic in Medicare-certified home health agencies. Interviews focused on eliciting experiences from HBCP on challenges and successes in providing home-based care to older adults, including barriers to care and strategies employed to keep patients, and providers, safe in their homes during the pandemic. RESULTS: Data was distilled into four major themes that have potential policy and practice impact. These included disrupted aging-in-place resources, preparedness actions contributing to readiness for the pandemic, limited adaptability in administrative needs during the pandemic and challenges with unclear messaging from public health officials. CONCLUSIONS: Home-based care plays an essential role in maintaining the health of older adults in disaster contexts, including pandemics. Innovative solutions, informed by policy that generate evidence-based best practices to support HBCP are needed to reduce barriers and increase protective factors, in order to maintain continuity of care for this vulnerable population during disruptive events.