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1

Miller, Jon C. EMPLOYEE ELDER CARE DUTIES & CAREGIVING BURDEN. Xlibris Corporation, 2007.

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2

Freitag, Lisa. Extreme Caregiving. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190491789.001.0001.

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Raising a child with multiple special needs or disabilities is a time-consuming and difficult task that exceeds the usual parameters of parenting. This book examines all the facets of that task, from the better-known physical, financial, and emotional burdens to the previously invisible moral work involved. Drawing from narratives written by parents of children with a variety of special needs, academic research in ethics and disability, and personal experience in pediatrics, this book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a
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3

Alley, Janet Mcdaniel. FAMILY CAREGIVING: FAMILY STRAINS, COPING RESPONSE PATTERNS, AND CAREGIVER BURDEN. 1988.

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4

H, Kakugawa Frances, ed. Mosaic moon: Caregiving through poetry : easing the burden of Alzheimer's disease. Watermark Pub., 2002.

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5

Loukissa, Dimitra A. THE BURDEN OF CAREGIVING EXPERIENCED BY THE FAMILIES OF THE MENTALLY ILL. 1993.

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6

Meyer, Jessica. An Equal Burden. Oxford University Press, 2019. http://dx.doi.org/10.1093/oso/9780198824169.001.0001.

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An Equal Burden forms the first scholarly study of the Army Medical Services in the First World War to focus on the roles and experiences of the men of the ranks of the Royal Army Medical Corps (RAMC). These men, through their work as stretcher-bearers and orderlies, provided a range of labour, both physical and emotional, in aid of the sick and wounded. They were not professional medical caregivers, yet were called upon to provide medical care, however rudimentary; they served in uniform, under military discipline, yet were forbidden, as non-combatants, from carrying weapons. Their service as
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7

Yeh, Shu-Hui. CAREGIVER BURDEN AND THE CHANGES IN CAREGIVING FOLLOWING NURSING HOME PLACEMENT IN TAIWAN. 1995.

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8

Christopher, T. Erb, and Mark D. Siegel. Caring for the ICU Survivor: The Family Caregiver Burden. Oxford University Press, 2014. http://dx.doi.org/10.1093/med/9780199653461.003.0009.

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Almost fifty million people in the United States provide informal, non-professional supportive care to chronically ill and disabled family members. Survivors of critical illness often depend upon such care for their well-being and recovery. ICU survivors may need help with physical, psychological, and cognitive deficits, often involving many hours of care per day. Families play essential caregiving roles, supporting survivors’ diverse and profound needs, often with minimal outside help. Caregiving can be personally fulfilling, but many families suffer financially, physically, and emotionally a
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9

Wallace, Gary Walter. CAREGIVING OF HOMEBOUND ELDERLY: THE DETERMINANTS OF BURDEN AND THE BUFFERING EFFECTS OF SOCIAL SUPPORT ON THE FAMILY CAREGIVER. 1987.

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10

Black, Helen K., John T. Groce, and Charles E. Harmon. Introduction. Oxford University Press, 2018. http://dx.doi.org/10.1093/acprof:oso/9780190602321.003.0001.

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Chapter One offers a brief history of the rise in awareness of the vast numbers of informal, family caregivers caring for aged, demented, and impaired loved ones in the home. The importance of informal caregivers to the healthcare system, both financially and emotionally, emerged in studies exploring the numbers of home caregivers and the nature of their care work. Early studies also focused on the sense of burden caregivers experienced due to caregiving. Since the 1980s, caregiving studies have been a constant in research, and have become increasingly complex in the use of large data sets and
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11

Shipley, Peggy Z. ALS caregiver quality of life and psychological implications. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780198757726.003.0016.

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Amyotrophic lateral sclerosis (ALS) impacts greatly not only those who have the disease, but also family caregivers who provide the majority of care for their loved ones throughout the ALS disease trajectory. In the provision of this care, these family caregivers frequently experience significant threats to their own physical and mental health, and thus to their quality of life. The burden of caregiving can be high, distress is not uncommon, and support is needed to best address these issues. Despite the physical and emotional challenges faced by family caregivers, limited research has been di
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12

Freitag, Lisa. Introduction. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190491789.003.0001.

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This introduction recognizes a new category of children with special needs, based on their need for increased parental caregiving, rather than any particular diagnosis or level of disability. These children are united by their need for extreme care. It suggests that ethical consideration of these children based on the best interest standard fails to take into account the possibility of undue parental burden of care. It proposes that new methods for evaluating parental duties are required. The book will use a framework provided by Joan Tronto’s phases of care for analysis of parent narratives.
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13

Applebaum, Allison J. Meaning-Centered Psychotherapy for Cancer Caregivers. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199837229.003.0006.

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Existential distress among caregivers of patients with all sites and stages of cancer is common and may serve as a driving mechanism of caregiver burden. Concurrently, the caregiving experience is an opportunity for meaning-making and growth. To date, no empirically supported treatments specifically target meaning-making and existential distress among cancer caregivers. To address this critical gap in the literature, meaning-centered psychotherapy has been adapted for delivery to cancer caregivers (meaning-centered psychotherapy for cancer caregivers (MCP-C)). This chapter presents the rationa
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14

Applebaum, Allison J., ed. Cancer Caregivers. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780190868567.001.0001.

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Cancer caregivers are an essential extension of the healthcare team. Rapid advances in cancer care, including new drugs and immunotherapies and more sophisticated diagnostic tools, have improved our ability to extend lives and enhance survival. As patients are living longer and with today’s shorter hospital stays and shift towards increased outpatient care, however, the burden on caregivers and their needs have substantially increased. Cancer Caregivers reveals the depth of complexities of caregiving experiences that the field of Psycho-Oncology has been exploring and the vast expanses we have
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15

Webster, Lynn. The Painful Truth. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780190659721.001.0001.

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The Painful Truth describes the personal and social implications of living with chronic pain and paints a picture of how society can do a better job of helping people who are in pain. In Part 1, the author-a former president of the American Academy of Pain Medicine-tells in-depth stories about some of his patients, using each story to focus on a key issue that frequently surfaces in the lives of people who have pain. The value of a positive attitude, the way that pain combines with other things going on in a person’s life, the reality of prejudice, the risk of becoming addicted to opioids, the
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16

Jotterand, Fabrice, Marcello Ienca, Tenzin Wangmo, and Bernice Elger, eds. Intelligent Assistive Technologies for Dementia. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780190459802.001.0001.

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The development and implementation of intelligent assistive technologies (IATs) to compensate for the specific physical and cognitive deficits of older adults with dementia have been recognized by many as one of the most promising approaches to this emerging financial and caregiving burden. In the past 15 years, advancements in artificial intelligence (AI), pervasive and ubiquitous computing (PUC), and other advanced trends in software and hardware technology have led to the development and design of a wide range of IATs to help older people compensate for the physical and sensory deficits tha
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17

Caregiving Without Regrets: 3 Steps to Avoid Burnout and Manage Disppointment, Guilt, and Anger. Medical Bridges, 2009.

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18

Mindfulness for Carers: How to Manage the Demands of Caregiving While Finding a Place for Yourself. Kingsley Publishers, Jessica, 2015.

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19

Abdelmoneium, Azza, Michael Corman, and Janet Rankin. Family Home Caregivers for Elderly people. 2nd ed. Hamad Bin Khalifa University Press, 2019. http://dx.doi.org/10.5339/difi_9789927141522.

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Improved economic conditions and standards of living that began around the 1950s have resulted in many structural changes in the Arab world, including significant decreases in morbidity, mortality, and fertility rates (United Nations, 2012). This has significantly altered the age demographic in Qatar and other countries in the region where individuals are living much longer, and the number of people aged 25–64 years have increased. Today, there are a significant number of Qataris (10,756) and nonQataris living in Qatar (18,070) above the age of 60. According to the 2010 census, there were 2,68
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20

Freitag, Lisa. Hard Labor. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190491789.003.0003.

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Much of the research on parent caregivers examines only the physical or emotional state of the caregiver, reporting such problems as depression, stress, and poor health. Some more recent studies from the nursing and ethics literature, done mostly with families of children who are living at home and dependent on medical technology, also begin to uncover ethical concerns. This chapter outlines the tasks involved in extreme caregiving, dealing with the most well-researched ones: the physical and financial burdens of care, social isolation, and the need to maintain positivity and advocate for the
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