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The Caring Self
According to the Bureau of Labor Statistics, there were approximately 1.7 million home health aides and personal and home care aides in the United States as of 2008. These home care aides are rapidly becoming the backbone of America's system of long-term care, and their numbers continue to grow. Often referred to as frontline care providers or direct care workers, home care aides-disproportionately women of color-bathe, feed, and offer companionship to the elderly and disabled in the context of the home. InThe Caring Self, Clare L. Stacey draws on observations of and interviews with aides working in Ohio and California to explore the physical and emotional labor associated with the care of others.
Aides experience material hardships-most work for minimum wage, and the services they provide are denigrated as unskilled labor-and find themselves negotiating social norms and affective rules associated with both family and work. This has negative implications for workers who struggle to establish clear limits on their emotional labor in the intimate space of the home. Aides often find themselves giving more, staying longer, even paying out of pocket for patient medications or incidentals; in other words, they feel emotional obligations expected more often of family members than of employees. However, there are also positive outcomes: some aides form meaningful ties to elderly and disabled patients. This sense of connection allows them to establish a sense of dignity and social worth in a socially devalued job. The case of home care allows us to see the ways in which emotional labor can simultaneously have deleterious and empowering consequences for workers.
eBook
Foster
\"An international bestseller and one of The Times's \"Top 50 Novels Published in the 21st Century,\" Claire Keegan's piercing contemporary classic Foster is a heartbreaking story of childhood, loss, and love, now released as a standalone book for the first time ever in the US. It is a hot summer in rural Ireland. A child is taken by her father to live with relatives on a farm, not knowing when or if she will be brought home again. In the Kinsellas' house, she finds an affection and warmth she has not known and slowly, in their care, begins to blossom. But there is something unspoken in this new household-where everything is so well tended to-and this summer must soon come to an end. Winner of the prestigious Davy Byrnes Award and published in an abridged version in the New Yorker, this internationally bestselling contemporary classic is now available for the first time in the US in a full, standalone edition. A story of astonishing emotional depth, Foster showcases Claire Keegan's great talent and secures her reputation as one of our most important storytellers\"-- Provided by publisher.
Book
\We need time, a great know-how and security for patients to always be there in time”: a qualitative study on factors distinguishing General from Specialized Palliative Home Care
Background
An increasing number of patients in the palliative phase of their disease are cared for at home by palliative home care services. A sense of security, normality of everyday life and symptom control are found to be active factors of quality of care in Specialized Palliative Home Care. Whether this also applies to General Palliative Home Care has not yet been systematically investigated. The aim of this study was to identify distinctions between General and Specialized Palliative Home Care from a healthcare professional’s perspective concerning those factors.
Methods
With a qualitative approach, we conducted 11 semi-structured interviews with healthcare professionals from different professional backgrounds in General and/or Specialized Palliative Home Care.
Results
In both General and Specialized Palliative Home Care, healthcare-professionals (HCP) found a
sense of security
(through
availability
) to be most relevant for the patients. The majority saw aspects of
normality of everyday life
as a key component for high-quality palliative home care, especially
having time
for the patient and the family caregiver(s). However, statements about
symptom control
are mainly related to Specialized Palliative Home Care. The subcodes
availability
,
having time
and
competence, symptom burden
and
financial resources
were the main distinguishing factors between General and Specialized Palliative Home Care in
sense of security
,
normality of everyday life
and
symptom control,
respectively.
Conclusions
Our results provide the basis for a clearer definition of GPHC and SPHC and contribute to identifying factors for a transferal between the two services to provide best care for the patient. Distinguishing (sub)factors revealed challenges and short-term solutions. Providing (financial) incentives to guarantee time and availability in General Palliative Home Care would lead to more effective care.
Journal Article
Hospital-Level Care at Home for Acutely Ill Adults: a Pilot Randomized Controlled Trial
BackgroundHospitals are standard of care for acute illness, but hospitals can be unsafe, uncomfortable, and expensive. Providing substitutive hospital-level care in a patient’s home potentially reduces cost while maintaining or improving quality, safety, and patient experience, although evidence from randomized controlled trials in the US is lacking.ObjectiveDetermine if home hospital care reduces cost while maintaining quality, safety, and patient experience.DesignRandomized controlled trial.ParticipantsAdults admitted via the emergency department with any infection or exacerbation of heart failure, chronic obstructive pulmonary disease, or asthma.InterventionHome hospital care, including nurse and physician home visits, intravenous medications, continuous monitoring, video communication, and point-of-care testing.Main MeasuresPrimary outcome was direct cost of the acute care episode. Secondary outcomes included utilization, 30-day cost, physical activity, and patient experience.Key ResultsNine patients were randomized to home, 11 to usual care. Median direct cost of the acute care episode for home patients was 52% (IQR, 28%; p = 0.05) lower than for control patients. During the care episode, home patients had fewer laboratory orders (median per admission: 6 vs. 19; p < 0.01) and less often received consultations (0% vs. 27%; p = 0.04). Home patients were more physically active (median minutes, 209 vs. 78; p < 0.01), with a trend toward more sleep. No adverse events occurred in home patients, one occurred in control patients. Median direct cost for the acute care plus 30-day post-discharge period for home patients was 67% (IQR, 77%; p < 0.01) lower, with trends toward less use of home-care services (22% vs. 55%; p = 0.08) and fewer readmissions (11% vs. 36%; p = 0.32). Patient experience was similar in both groups.ConclusionsThe use of substitutive home-hospitalization compared to in-hospital usual care reduced cost and utilization and improved physical activity. No significant differences in quality, safety, and patient experience were noted, with more definitive results awaiting a larger trial.Trial Registration NCT02864420.
Journal Article
The 36-hour day : a family guide to caring for people who have Alzheimer disease, related dementias, and memory loss
Provides practical and legal advice on caring for those who can no longer care for themselves, including information on dealing with such daily problems as eating and exercising, and suggests ways to cope with mood swings and false ideas.
Book
Mapping the landscape of Hospital at home (HaH) care: a validated taxonomy for HaH care model classification
Background
Hospital at home (HaH) care models have gained significant attention due to their potential to reduce healthcare costs, improve patient satisfaction, and lower readmission rates. However, the lack of a standardized classification system has hindered systematic evaluation and comparison of these models. Taxonomies serve as classification systems that simplify complexity and enhance understanding within a specific domain.
Objective
This paper introduces a comprehensive taxonomy of HaH care models, aiming to categorize and compare the various ways HaH services are delivered as an alternative to traditional hospital care.
Methods
We developed a taxonomy of characteristics for HaH care models based on scientific literature and by applying a taxonomy development framework. To validate the taxonomy, and to analyze the current landscape of HaH models we matched the taxonomy to HaH care models described in literature. Finally, to identify types of HaH care implementations, we applied the k-means clustering method to care models represented using the taxonomy.
Results
Our taxonomy consists of 12 unique dimensions structured into 5 perspectives following the progression from triaging, through care delivery, operational processes, and metrics for success: Persons and roles (2 dimensions), Target population (1 dimension), Service delivery and care model (6 dimensions), outcomes and quality metrics (2 dimensions), and training and education (1 dimension). Cluster analysis of 34 HaH care models revealed three distinct types: One cluster (50%, 17/34) focuses on patient eligibility and home environment suitability, a care model to be chosen for clinically complex patients. A second cluster (29.4%, 10/34) aggregates technology-enabled models using telemedicine and remote monitoring that are adaptable across settings. This type could be chosen for generalizable care. The third cluster (20.6%, 7/34) includes complex interventions involving informal caregivers and advanced medical devices, requiring caregiver training, supportive policies, and user-friendly technology to reduce caregiver burden and improve safety.
Conclusions
The clusters identified highlight practical considerations for adapting HaH care approaches to patient and contextual needs. These findings can guide policymakers in developing guidelines and assist practitioners in tailoring HaH care models to specific patient populations. The challenges encountered in collecting information on different characteristics of the taxonomy underscore the urgent need for more comprehensive and standardized reporting in scientific papers on HaH interventions.
Journal Article
Health Care Comes Home
In the United States, health care devices, technologies, and practices are rapidly moving into the home. The factors driving this migration include the costs of health care, the growing numbers of older adults, the increasing prevalence of chronic conditions and diseases and improved survival rates for people with those conditions and diseases, and a wide range of technological innovations. The health care that results varies considerably in its safety, effectiveness, and efficiency, as well as in its quality and cost.
Health Care Comes Home reviews the state of current knowledge and practice about many aspects of health care in residential settings and explores the short- and long-term effects of emerging trends and technologies. By evaluating existing systems, the book identifies design problems and imbalances between technological system demands and the capabilities of users. Health Care Comes Home recommends critical steps to improve health care in the home. The book's recommendations cover the regulation of health care technologies, proper training and preparation for people who provide in-home care, and how existing housing can be modified and new accessible housing can be better designed for residential health care. The book also identifies knowledge gaps in the field and how these can be addressed through research and development initiatives.
Health Care Comes Home lays the foundation for the integration of human health factors with the design and implementation of home health care devices, technologies, and practices. The book describes ways in which the Agency for Healthcare Research and Quality (AHRQ), the U.S. Food and Drug Administration (FDA), and federal housing agencies can collaborate to improve the quality of health care at home. It is also a valuable resource for residential health care providers and caregivers.
eBook