Caring for the Family Caregiver

2020 ◽  
Author(s):  
Elaine Wittenberg ◽  
Joy Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Family Caregiver ◽  
Communication Theory ◽  
Family System ◽  
Interdisciplinary Approach ◽  
Current Data ◽  
Theory And Practice ◽  
The Family ◽  
The Impact

This remarkable work reveals the plight of the family caregiver in chronic illness through the prism of communication. Examining the high cost and poorly addressed exigencies of the caregiver, including health literacy, palliative care, and health outcomes, Elaine Wittenberg, Joy V. Goldsmith, Sandra L. Ragan, and Terri Ann Parnell use an interdisciplinary approach in an effort to identify the impact of communication and its burdens on the caregiver. This team of scholars present four caregiver profiles, the Manager, Carrier, Partner, and Lone caregiver, each emerging from a family system with different patterns of conversational sharing and expectations of conformity. This volume presents a picture of the costs and losses for caregivers that go unseen and remain invisible for stakeholders in the healthcare experience. By synthesizing current data assessing the experiences of caregivers, as well as integrating the narrative experiences of a range of caregivers living through a variety of illnesses and their specific demands, the writers deliver an unflinching gaze at the journey of the caregiver. With an author team comprised of three health communication researchers and a nurse and health literacy expert, this volume integrates literature addressing caregiver needs and burdens, communication theory and practice, and palliative care and health literacy research to present the groundbreaking concept of the caregiver types and an innovative set of support resources to facilitate improved pathways to better care for the caregiver. Their engaging and rigorous writing style integrates the real stories of caregivers across the scope of the book connecting the reader with the people inside the pages and making the book essential for providers, students, clinicians, policymakers, and family caregivers alike.

Book Review: Wittenberg, E., Goldsmith, J. V., Ragan, S. L., & Parnell, T. A. (2020). Caring for the Family Caregiver: Palliative Care Communication and Health Literacy. Oxford University Press

2021 ◽  
pp. 104990912199736
Author(s):  
Maryjo Prince-Paul
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Family Caregiver ◽  
Family Caregiving ◽  
Family System ◽  
Oxford University ◽  
Caregiver Health ◽  
The Family ◽  
Communication Needs ◽  
Oxford University Press

Caring for the Family Caregiver is published by Oxford University Press and introduces the novel framework of the Family Caregiver Communication Typology. The volume offers a close analysis of caregiver health literacy and patient outcomes and invites readers to consider the family system as the driver in shaping how family caregivers deal with chronic illness demands. The expertise of all authors (three health communication scholars and one nurse who is a health literacy expert) in the analysis illuminates the delicate balance between caregivers’ ability to understand and communicate in the context of social determinants of health. The book shares the interwoven challenges of palliative care, family caregiving, and health literacy. Caring for the Family Caregiver establishes the urgent call to address family caregiver information and communication needs and leaves the reader empowered to make changes in their own clinical practice communication and/or develop family caregiving research that addresses cultural and social factors.

A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care

2003 ◽  
Vol 1 (4) ◽  
pp. 353-365 ◽  
Author(s):  
PETER HUDSON
Keyword(s):  
Palliative Care ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Intervention Development ◽  
World Health ◽  
The Family ◽  
Key Variables ◽  
Supportive Interventions ◽  
The Impact

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

The Family Caregiver Communication Typology

2020 ◽  
pp. 77-102
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Chronic Illness ◽  
Health Literacy ◽  
Family Caregiver ◽  
Family System ◽  
Healthcare Providers ◽  
Family Expectations ◽  
The Family ◽  
Tailored Communication ◽  
Tailored Approach ◽  
Communication Needs

Chronic illness in the family can force patterns to change or a create a struggle to maintain existing patterns. When healthcare providers seek to learn what exists before illness for the patient and family caregiver, they are endowed with the knowledge to provide tailored communication to better meet their health literacy needs. This chapter details how the family system influences a caregiver’s communication and caregiving experience, demonstrating the need for an integrated and tailored approach to care for the family caregiver. Family expectations, decisions, roles, and uncertainty figure prominently in setting the stage for the caregiver communication burden incurred in the process of caregiving. The authors present the program and process of research that resulted in the creation of the family caregiver communication typology and detail four family caregiver communication types, which aid in understanding a caregiver’s communication needs and preferences.

Support interventions for families of people with terminal cancer in palliative care

2020 ◽  
Vol 18 (5) ◽  
pp. 580-588 ◽  
Author(s):  
Neide P. Areia ◽  
José N. Góngora ◽  
Sofia Major ◽  
Vivianne D. Oliveira ◽  
Ana P. Relvas
Keyword(s):  
Palliative Care ◽  
Systematic Reviews ◽  
Family Caregiver ◽  
Terminal Illness ◽  
Family System ◽  
Meta Analysis ◽  
Care Plan ◽  
Terminal Phase ◽  
Terminal Cancer ◽  
The Family

AbstractObjectiveThe terminal phase of cancer represents a major crisis for the family system. Regardless of the caregiving role they undertake, family members are forced to address multiple impacts when facing the approaching death of their terminally ill loved one. International guidelines recognize the importance of integrating the family into a care plan. However, more needs to be known about how to deliver optimal family support. The purpose of this study is to review the current state of the art in family/caregiver-focused interventions of people with terminal cancer in palliative care.MethodFor this purpose, an overview of the literature's systematic reviews on the topic was conducted to select Randomized Controlled Trials (RCTs) on family/caregiver-focused interventions.ResultsNine interventions were found in the systematic reviews of literature and meta-analysis. These family/caregiver-focused interventions were then thoroughly and critically analyzed. Despite the heterogeneity with regard to their characteristics, the interventions commonly focused on caregiving matters, were brief in duration, and delivered by non-mental health experts. The efficacy of such interventions was seen as modest.Significance of resultsFamily/caregiver-focused interventions in palliative care remain a matter of concern and more research is needed to identify adequate and effective ways of helping families that face the crisis of terminal illness in the system.

Validation of a model of family caregiver communication types and related caregiver outcomes

2016 ◽  
Vol 15 (1) ◽  
pp. 3-11 ◽  
Author(s):  
Elaine Wittenberg ◽  
Kate Kravits ◽  
Joy Goldsmith ◽  
Betty Ferrell ◽  
Rebecca Fujinami
Keyword(s):  
Quality Of Life ◽  
Psychological Distress ◽  
Family Communication ◽  
Family Caregiver ◽  
Family System ◽  
Future Research ◽  
Outcomes Measures ◽  
The Family ◽  
The Impact

AbstractObjective:Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types—Manager, Carrier, Partner, Lone—each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes.Method:This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains.Results:Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life.Significance of results:This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

Family Estrangement

2013 ◽  
Author(s):  
Kylie Agllias
Keyword(s):  
Family System ◽  
Family Systems Theory ◽  
Structural Factors ◽  
Bowen Family Systems Theory ◽  
Political Awareness ◽  
Parental Alienation ◽  
Factors Affecting ◽  
The Family ◽  
Grief Responses ◽  
The Impact

Family estrangement—a concept similar to emotional cutoff in Bowen family systems theory—is the unsatisfactory physical or emotional distancing between at least two family members. It is attributed to a number of biological, psychological, social, and structural factors affecting the family, including attachment disorders, incompatible values and beliefs, unfulfilled expectations, critical life events and transitions, parental alienation, and ineffective communication patterns. Family estrangement is often experienced as a considerable loss; its ambiguous nature and social disenfranchisement can contribute to significant grief responses, perceived stigma, and social isolation in some cases. The social-work profession has a role to play in raising social and political awareness of the prevalence of, contributors to, and effects of estrangement on the intergenerational family, with clinicians working to assess and address the impact of estrangement on individuals and the family system.

The Impact of Intrafamilial Homicide on the Family System

2021 ◽  
Author(s):  
Corrie L. Jackson ◽  
Sam Margolius ◽  
Julie Stout ◽  
Scott Browning
Keyword(s):  
Family System ◽  
The Family ◽  
The Impact
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