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Published: 10 December 2022
Last updated: 28 January 2023

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1

Hendrickson, Michael C. State tax incentive programs for informal caregivers and the elderly. S.l: s.n., 1988.

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2

B, Neal Margaret, ed. Balancing work and caregiving for children, adults, and elders. Newbury Park: Sage Publications, 1993.

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3

Eva, Kahana, Biegel David E, Wykle May L, Center for Practice Innovations, and Mandel School of Applied Social Sciences (Case Western Reserve University), eds. Family caregiving across the lifespan. Thousand Oaks: Sage Publications, 1994.

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4

1946-, Grant Gordon, and Keady John 1961-, eds. Understanding family care: A multidimensional model of caring and coping. Buckingham: Open University Press, 1996.

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5

Mandel School of Applied Social Sciences (Case Western Reserve University), ed. Family caregiving in mental illness. Thousand Oaks: Sage Publications, 1996.

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6

Carol, Levine, and Murray Thomas H. 1946-, eds. The cultures of caregiving: Conflict and common ground among families, health professionals, and policy makers. Baltimore: Johns Hopkins University Press, 2004.

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7

E, Biegel David, and Blum Arthur, eds. Aging and caregiving: Theory, research, and policy. Newbury Park, CA: Sage Publications, 1990.

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8

Martin, Emily J., and Eric J. Roeland. Benefits of Early Palliative Care to Informal Family Caregivers (DRAFT). Edited by Nathan A. Gray and Thomas W. LeBlanc. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780190658618.003.0004.

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This chapter summarizes the Dionne-Odom et al. randomized controlled trial evaluating the benefits of an early, nurse-led palliative care intervention to caregivers of patients with advanced cancer. The study examined the impact of early (at diagnosis) versus delayed (12 weeks later) intervention on caregiver quality of life, depressed mood, and burden. The study showed that early intervention caregivers had lower depression scores at three months compared to the delayed group caregivers. Terminal decline analyses also showed lower depression and stress burden scores in the caregivers who received the early intervention. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a clinical case.
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9

Lauzon, Sylvie Eliane. RELATIONSHIPS AMONG INFORMAL CAREGIVING, SOCIAL SUPPORT AND HEALTH IN WIFE CAREGIVERS TO ELDERS. 1995.

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10

Family Care And Social Capital Transitions In Informal Care. Springer, 2013.

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11

Burgio, Louis D., and Matthew J. Wynn. The REACH OUT Caregiver Support Program. Oxford University Press, 2021. http://dx.doi.org/10.1093/med-psych/9780190855949.001.0001.

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Our nation increasingly relies on family members or friends (i.e., informal caregivers) for needed care and support as we age. Family caregivers typically assume their caregiving role willingly and reap personal fulfilment from helping a family member, developing new skills, and strengthening family relationships. For these benefits, however, caregivers often sacrifice their own health and well-being. Depression, anxiety, poor physical health, and compromised immune function are more common among family caregivers than in adults not providing such care. The REACH OUT (Resources for Enhancing Alzheimer’s Caregiver Health: Offering Useful Treatments) program is a multicomponent, tailored, and flexible intervention for caregivers of people with dementia focused on the evidence-based therapeutic strategy of problem solving. This work is designed to guide clinicians through the process and provide them the necessary tools to share with caregivers with the goal of enhancing caregiver physical and mental health. Five common risk areas (home safety, caregiver health, social support, challenging behaviors, and emotional well-being) are described in the manual; and interventions are described that respect the nuances of each risk area. By beginning with an individualized risk assessment and being flexible to the needs and issues of the caregiver, the REACH OUT intervention helps clinicians identify risk areas and provide caregivers with tailored action plans to reduce risk and promote well-being.
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12

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 as a result of caring for loved ones after critical illness. While some institutional programmes provide direct support to ICU survivors, little infrastructure exists to support the activity of informal family caregivers. Measures are needed to identify caregivers at risk and to develop and provide effective treatments both within and beyond the ICU. Research has begun to elucidate some of the ways in which providers of critical care can identify those at risk of long-term psychological or emotional hardship and suggests strategies to prevent some of the overwhelming sequelae of critical illness among families. More work is needed to provide a deeper and more nuanced understanding of risk factors and preventive strategies for caregiver burden following critical illness. This chapter reviews the burdens of caregiving and suggests ways to help ICU survivors’ families manage the daunting challenge of helping their loved ones recover from life-threatening illness.
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13

Rugkåsa, Jorun. Family carers and coercion in the community. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780198788065.003.0010.

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Family members have always been involved in the care of those with mental illness in most parts of the world. This chapter examines the role of family caregivers in coercive practices in the community and shows that family members may exert influence directly or when engaged in the formal or informal coercive practices of professionals, but may also experience themselves as being coerced. Emphasis is placed on carers’ own experiences. Three dimensions of relevance to coercive practices are outlined. First, carers’ interactions with the family member who is unwell; second, their involvement in community treatment; and third, the role attributed to carers in welfare states.
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14

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 advanced technology to study the number of caregivers, their characteristics and labors, and the outcomes of caregiving on their emotional and physical health. Few studies have focused solely on the experience of caregiving in African-American elder male caregivers, and in the way we accomplish here.
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15

Black, Helen K., John T. Groce, and Charles E. Harmon. The Hidden Among the Hidden. Oxford University Press, 2018. http://dx.doi.org/10.1093/acprof:oso/9780190602321.001.0001.

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The question of our research and our book is as follows: What is the experience of African-American elder male caregivers? Research and literature on African-American older males as informal, primary caregivers of demented or impaired family members, particularly spouses, are negligible. Male caregivers in general have been called “hidden” caregivers. Thus, we named the elderly African-American male caregivers we interviewed for this book “the hidden among the hidden.” We asked the experts—a group of 13 African-American male caregivers—to discuss the concrete and nonmaterial aspects of giving care to an impaired loved one. Our book addresses the knowledge gap about African-American male caregivers by revealing, in case-study form, their experiences of caregiving in the context of their personal biography and cohort history. Our focus is the practical and existential meaning of daily life as a caregiver. The men discussed in this book are over 60 years of age, most are long married, and they have been caregivers in their homes for at least 5 years and as long as 25 years. Their loved ones, particularly wives, suffered from a variety of illnesses and debilities that necessitated hands-on care. The book examines varied aspects of the caregiving experience, the unique generativity of men who give care, and the emotions and conflicts about decision making that emerge in day-to-day caregiving.
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16

Pestieau, Pierre, and Mathieu Lefebvre. Long-Term Care. Oxford University Press, 2018. http://dx.doi.org/10.1093/oso/9780198817055.003.0012.

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This chapter is concerned with the rise in long-term care needs. Long-term care concerns individuals who are no longer able to carry out basic daily activities. Most of the care is currently provided by informal caregivers, mainly the family, while the role of formal care provided by the state or the market remains small. The chapter explains, however, why informal care is expected to decline and analyses the low private insurance development, the so-called long-term care insurance puzzle. These two factors, the decreasing role of the family and a thin insurance market, plead for the development of a full fledge social insurance for long-term care. The chapter then looks at the optimal design of such an insurance.
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17

Foroughe, Mirisse. Emotion Focused Family Therapy with Children and Caregivers: A Trauma-Informed Approach. Taylor & Francis Group, 2018.

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18

Emotion Focused Family Therapy with Children and Caregivers: A Trauma-Informed Approach. Taylor & Francis Group, 2018.

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19

Epstein-Lubow, Gary, and Elizabeth Tobin-Tyler. Forensic Issues and Caregivers of the Elderly. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199374656.003.0011.

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Providing patient-centered care for an elderly individual with a mental health condition requires clinicians and family caregivers to work together. This chapter provides a description of a mental health treatment model, the triadic model of caregiving, in which service delivery for a patient includes clinicians communicating with family members or caregivers. Description of the mental health workforce to support patient-centered care is provided along with laws and policies that support family caregivers in their aid of patients. The associated legal responsibilities and ethical issues related to working with patients who have impaired decision-making capacity due to a mental health or substance use condition are explained, including capacity, competence, informed consent, advance care planning, guardianship, fiduciary responsibilities, and ethical concerns.
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20

Rothausen, Teresa J. Organizational Dependent Care Support. Edited by Tammy D. Allen and Lillian T. Eby. Oxford University Press, 2015. http://dx.doi.org/10.1093/oxfordhb/9780199337538.013.20.

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This chapter reviews, synthesizes, and builds on organizational dependent care support (ODCS) research, resulting in the development of a need-based model of ODCS use. Important unanswered questions remain, including, among others, the meaning to employees of having dependents; determinants of ODCS use and of need for ODCS; differences in need for nurturance, coordination, and financial caregivers in different combinations and profiles; differences in formal and informal ODCS; the mechanisms in play when organizations offer availability, but block, ODCS use; family and community moderators of ODCS use; and explicit consideration of different stakeholders. In the United States, dependent care is generally privatized to families and employing organizations; therefore how families and organizations handle dependent care becomes how U.S. society treats its dependents, making research on this topic vital to helping individuals, families, and organizations manage dependent care with efficiency and compassion.
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21

Sayles-Cross, Sandra. APPRAISAL, SOCIAL DISTANCE AND THE INFORMAL CAREGIVER'S MULTIDIMENSIONAL COST OF CARING FOR AN ELDER FAMILY MEMBER. 1989.

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22

Herridge, Margaret S., and Jill I. Cameron. Models of Rehabilitative Care after Critical Illness. Oxford University Press, 2014. http://dx.doi.org/10.1093/med/9780199653461.003.0050.

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Critical illness is transformative. Patients and caregivers are traumatized and acquire new mood disorders and disability. These are costly and consequential. Knowledge of current rehabilitation theory may help to inform emerging models of care for our critically ill patients and families. The International Classification of Functioning, Disability, and Health (ICF) model is presented as a candidate construct for patients and families after critical illness. It highlights the complexity and interdependence of factors that determine outcome and incorporates multiple facets of the individual experience. ICF may facilitate the development of a novel framework of aetiologically neutral clinical phenotypes with distinct recovery trajectories after critical illness. This informs tailored interventions for distinct patient and family groupings, independent of initial diagnostic groups, and acknowledges the similar themes of ICUAW, cognitive dysfunction, and mood disorders following complex critical illness.
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23

Chapman, Nancy J., Berit Ingersoll-Dayton, Margaret B. Neal, and Arthur C. Emlen. Balancing Work and Caregiving for Children, Adults, and Elders. SAGE Publications, Incorporated, 2012.

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24

Chapman, Nancy J., Berit Ingersoll-Dayton, and Margaret B. Neal. Balancing Work and Caregiving for Children, Adults, and Elders. SAGE Publications, Incorporated, 1993.

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25

Family Care in HIV/AIDS: Exploring Lived Experience. Sage Publications Pvt. Ltd, 2004.

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26

D'Cruz, Premilla. Family Care in HIV/AIDS: Exploring Lived Experience. Sage Publications, 2004.

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27

Ceci, Christine, and Mary Ellen Purkis. Care at Home for People Living with Dementia. Policy Press, 2021. http://dx.doi.org/10.1332/policypress/9781447359289.001.0001.

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This book is an account of an ethnographic study designed to learn more about how families handle everyday life in the context of dementia, with the idea that if what families were already doing was better understood, their own efforts could be better supported. By following, and learning from, family arrangements for care, the question of what makes care for a family member living with dementia possible or impossible, easier or more difficult, is foregrounded. This question is also traced beyond the specific site of home to consider the ways that health and social care services and policy orientations are organized to support and/or hinder family arrangements. The book contributes to theorizing the intersections between what often seem unrelated: the formal care policies that articulate strategies to ‘manage’ populations of older people living with a diagnosis of dementia, the care practices of those at the frontlines who are responding to what often seem like overwhelming needs, and the care practices of families working to make everyday life liveable. The methodological approach and theoretical lens taken locates this work in a growing field of care practices research that is informed by the relational logic of material semiotics. This lens shifts the reader’s gaze from the isolated caregiver-care recipient dyad, and draws attention to the practical arrangements of bodies, objects, discourses, spaces and relations that constitute everyday living for persons living with dementia and their carers.
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28

1948-, Kendig Hal, Hashimoto Akiko 1952-, and Coppard Larry C, eds. Family support for the elderly: The international experience. Oxford [England]: Oxford University Press, 1992.

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29

Family Support for the Elderly: The International Experience (Oxford Medical Publications). Oxford University Press, USA, 1992.

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30

Fine, Perry G. The Hospice Companion. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780190456900.001.0001.

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The Hospice Companionis a guide to best practices in end-of-life care, informed by the most current evidence-based literature in the field. It is intended to be used “at the bedside” and during interdisciplinary team meetings to efficiently and effectively improve patient care and provide useful family and caregiver support. It should be thought of as a “decision support tool” to be used by all members of the hospice interdisciplinary team, including nurses, physicians, counselors, and social workers. This is the third edition of this clinical guide and it includes forty chapters allotted into three sections (General Processes; Personal, Social, and Environmental Processes; Clinical Processes and Symptom Management) plus five appendices. The symptom management chapters are arranged alphabetically, covering the gamut of common and highly burdensome problems encountered in caring for patients with far-advanced illness, from agitation and anxiety to xerostomia. Chapters are concise, averaging 1,000 to 1,500 words (the exception is the chapter on pain, in view of its complexity). Each is organized around the specific clinical issue of concern by defining the problem and its usual causes, findings, and differential diagnosis. This is followed by outlining salient features of assessment and management according to practical, psychosocial, biomedical, and spiritual categories. Each chapter concludes with a list of goals that should be defined in establishing a plan of care and what should be documented in the clinical record as well as a list of recommended readings from the contemporary literature.
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31

Sabat, Steven R. Alzheimer's Disease and Dementia. Oxford University Press, 2018. http://dx.doi.org/10.1093/wentk/9780190603106.001.0001.

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Alzheimer’s is swiftly on the rise: it is estimated that every 67 seconds, someone develops the disease. For many, the words ‘Alzheimer’s disease’ or ‘dementia’ immediately denote severe mental loss and, perhaps, madness. Indeed, the vast majority of media coverage of Alzheimer’s disease (AD) and other types of dementia focuses primarily on the losses experienced by people diagnosed and the terrible burden felt by care partners yearning for a "magic bullet" drug cure. Providing an accessible, question-and-answer-format primer on what touches so many lives, and yet so few of us understand, Alzheimer’s Disease and Dementia: What Everyone Needs to Know® contributes what is urgently missing from public knowledge: unsparing investigation of their causes and manifestations, and focus on the strengths possessed by people diagnosed. Steven R. Sabat mines a large body of research to convey the genetic and biological aspects of Alzheimer’s disease, its clinical history, and, most significantly, to reveal the subjective experience of those with Alzheimer’s or dementia. By clarifying the terms surrounding dementia and Alzheimer’s, which are two distinct conditions, Sabat corrects dangerous misconceptions that plague our understanding of memory dysfunction. People diagnosed with AD retain awareness, thinking ability, and sense of self; crucially, Sabat demonstrates that there are ways to facilitate communication even when the person with AD has great difficulty finding the words he or she wants to use. From years spent exploring and observing the points of view and experiences of people diagnosed, Sabat strives to inform as well as to remind readers of the respect and empathy owed to those diagnosed and living with dementia. Alzheimer’s Disease and Dementia conveys this type of information and more, which, when applied by family and professional caregivers, will help improve the quality of life of those diagnosed as well as of those who provide support and care.
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32

Blum, Arthur, and David E. Biegel. Aging and Caregiving: Theory, Research, and Policy (SAGE Focus Editions). Sage Publications, Inc, 1990.

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33

Blum, Arthur, and David E. Biegel. Aging and Caregiving: Theory, Research, and Policy (SAGE Focus Editions). Sage Publications, Inc, 1990.

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