Informal Caregivers: From Hidden Heroes to Integral Part of Care

Description:

This book builds on the current trends in informal caregivers’ role in the supportive care of cancer patients (as well as other diseases) across the care continuum covering topics from the healthcare professionals and the users’ perspectives. Informal caregivers are a critical resource to their care recipients and an essential component of the health care system. The book introduces a comprehensive view of the topic and acknowledges the importance and the complexity of caregiving. Here lays one of the uniqueness of this book, which highlights the areas and the ways that for example interventions in specific settings/groups of patients can actually facilitate the caregiving process.
The increasing number of care-dependent people, the adoption of the principle “outpatient before inpatient”, the shift of care from inpatient to outpatient and the preference for home care (i.e. majority) are only some of the reasons that contributed to Informal caregiving becoming a central feature of the health care landscape and will become even more prominent in the decades ahead.
The book draws on the experts’ high-end, current systematic research evidence and real-life examples on these topics to provide an insightful perspective on undertaking research within this context, and to demonstrate informal caregivers’ impact on patients’ outcomes. The structure of the book provides multiple perspectives to the topic and makes it appealing to a wide range of recipients including the nursing community, clinicians, social workers, researchers, policy makers, technology experts as well as postgraduate students especially to those practicing specifically in supportive care in cancer.
The book fills a gap in this field of expertise not only by familiarizing the reader with a wide range of topics to be considered but it also emphasizes on what the developments in the field in the future would need to take into consideration. Finally, current and future studies can be informed from the practices of preceding studies that are incorporated in the book.

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Table of contents :

Forward
Contents
Caregiving and Caregivers: Concepts, Caregiving Models, and Systems
1 Introduction
2 The Concept of Caregiving
3 What Is an Informal Caregiver or a Family Caregiver?
4 The Scale of Caregiving
5 The Financial Impact of Caregiving
6 Informal Caregiving During the COVID-19 Pandemic
7 Family Caregiving Models
8 Tasks Performed by Informal Caregivers
9 Conclusion
References
Caregiving Burden and Other Psychosocial Considerations
1 Introduction
2 Cancer Caregivership Burden
2.1 Physical and Sleep Burden
2.2 Psychosocial and Spiritual Burden
2.3 Financial Burden and Caregiver Guilt
2.4 Long-Term and Quality-of-Life-Related Burden
2.5 Bereavement Burden
3 Interventions for the Management of Caregivers’ Burden
3.1 Good Examples
3.2 eHealth Options
3.3 Policy Action Needed
4 Conclusion and Outlook
References
Caregiving Within the Context of Elder Care
1 Introduction
2 Origins of Global Aging
2.1 Extension of Life Expectancy
2.2 The “Baby Boomer” Generation
2.3 The “Silver Tsunami”
3 Prominent Themes in Elder Caregiving
3.1 Caregiver Burden
3.2 Co-morbidity
3.3 Problematic Healthcare Navigation
3.4 Ageism
3.4.1 Choosing Geriatrics as a Specialty
4 Major Illnesses in the Elderly
4.1 Cancer
4.1.1 Distinguishing Characteristics
4.1.2 Themes in Elder Cancer Caregiving
Fear
New Caregiving Expectations
4.2 Dementia
4.2.1 Caregiver Characteristics
4.2.2 Emotional Sequelae
4.3 Heart Failure
4.3.1 The Female Caregiver Imperative
4.3.2 Demands Over Time
4.4 Stroke
5 10 Intervention Caveats and Advocacy Targets
6 Elder Caregiving Research
7 The Healthy Aging Agenda
8 Conclusion
References
Informal Caregivers in Care Efficiency
1 Introduction
2 The Concept of Efficiency
3 Efficiency in the Context of Cancer
4 Informal Caregivers as Means of Efficiency
4.1 Putting Patients at the Centre of the Care…and Delivering Care That Really Matters to Patients
4.2 Efficient Cancer Care Delivers the Best Possible Health Outcomes (e.g. Continuation of Care)
4.3 Efficient Cancer Care… with a Focus on What Really Matters to (Patients) and Society
5 Conclusion
References
Caring for the Informal Carer: Coping in Caregiving
1 Introduction
2 Caring for the Carer: A Comprehensive Approach
3 Start by Carrying out a Holistic Carers Assessment
4 Self-Care for the Carer
5 Coping Strategies
5.1 Maximizing the Positives and Minimizing the Negatives
5.2 Information Seeking and Provision, Accepting Help from Others
5.3 Planning Ahead
6 Conclusion
References
Informal Caregivers and Health Literacy
1 Introducing Health Literacy and eHealth Literacy
1.1 eHealth Literacy
2 Health Literacy Levels Among Informal Caregivers
3 Why Health Literacy Is Important: Health Literacy and Caregiving Variables
3.1 Health Literacy and Self-Efficacy Among Informal Caregivers
3.2 Health Literacy and Coping Strategies Among Informal Caregivers
3.3 Health Literacy and Social Support Among Informal Caregivers
3.4 Interventions to Enhance Health and eHealth Literacy of Informal Caregivers and Health Care Professionals Working with Older People and Their Families
4 Conclusion
References
The Use of Information and Communication Technology Among Informal Caregivers
1 Introduction
2 Information and Communication Technology and Informal Caregivers
2.1 Information and Communication Technology and Informal Caregivers in the Dementia Context
3 Informal Caregivers and Internet Use
4 Scoping Review on the Dementia Informal Caregivers Internet Use
4.1 Review Methodology
4.2 Characteristics of the Studies Reviewed
5 Results of the Scoping Review
5.1 The Profile of the Caregivers Who Use the Internet for Caregiving
5.2 How Do Informal Caregivers Use the Internet?
5.3 What Do Informal Caregivers Post Online?
6 Conclusions of the Internet Use Among Informal Caregivers Systematic Scoping Review
References
Family Caregivers in Palliative Care in the Hospital Setting
1 Introduction
2 Family-Centred Care in the Palliative Care Context
3 Factors Associated with Family Involvement in Palliative Inpatient Care
4 Family Participation in Palliative Inpatient Care
4.1 Providing Emotional Support for the Patient
4.2 Participation in the Patient’s Physical Care
4.3 Participation in the Decision-Making Process
5 Psychosocial Support for Families in Palliative Hospital Care
5.1 Psychosocial Support
5.2 Psychosocial Support in Relation to Family Caregivers’ Needs in Palliative Hospital Care
5.3 Implementing Support During Palliative Inpatient Care
6 Consequences of Family Involvement
7 Conclusion
References
Supporting Caregivers of Patients with Childhood Malignancies
1 Introduction
1.1 Epidemiology of Cancer in Children
2 Childhood Cancer Burden for Caregivers
2.1 Concept of Caregiving Burden (CB)
2.2 Attributes Associated with CB
2.2.1 Self-Perception (Perceived by an Individual)
2.2.2 Multifaceted Strain
2.2.3 Over Time Attributes of CB
3 Support Needs of Caregivers of Patients of Childhood Malignancies Across the Cancer Continuum
3.1 Diagnosis: Initial Phase of Treatment
3.2 During Treatment
3.3 Post Therapy Needs: Remission Phase
4 Interventions Described in the Literature for Supporting Caregiver’s Needs
4.1 Education and Information
4.2 Emotional Support
4.3 Spiritual and Religious Support
4.4 Social and Financial Support
4.5 Support with the Use of Technology
5 Conclusions
References
Informal Caregivers: The Advocacy and Policy Perspective
1 Introduction
2 The Carers Movement(s) and Their Advocacy Role
3 A Shift in the Policy Environment Concerning Carers
3.1 Step 1 Define and Acknowledge Carers
3.2 Step 2 Identify Your Carers
3.3 Step 3 Assess the Needs of Your Carers
3.4 Step 4 Support Multisectoral Partnerships for Integrated and Community-Based Care Services
3.5 Step 5 Facilitate Carers’ Access to Information and Advice About Care, Caring and Care-Life Balance
3.6 Step 6 Pay Attention to Carers’ Health and Prevent Negative Health Outcomes
3.7 Step 7 Give Carers a Break
3.8 Step 8 Provide Carers with Access to Training and Recognise Their Skills
3.9 Step 9 Prevent Carers’ Poverty and Allow Them to Maintain an Active Professional/Educational Life
3.10 Step 10 Adopt the Carers’ Perspective in All Relevant Policies
4 Conclusions
References
Health Behavioral Change Interventions in Caregivers: The Prolepsis Project
1 Introduction
2 The Nature of Behavioral Interventions
3 Health Belief Model
4 Behavior Change and Health Promotion
5 eHealth Literacy
6 The Prolepsis Project: An Example of a HBM Intervention
7 Apps in Health Literacy Programs
8 Conclusion
References
Future Directions
1 Introduction
2 The “Invisible” or “Hidden” Role of Informal Caregivers
3 Models of Informal Caregivers’ Involvement in Care: Not All Models Were Created Equal
4 Supporting Informal Caregivers in Their Role
5 Policy Strategies to Support Informal Caregivers
6 Conclusion
References