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.

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.

Distress, Stress and Solidarity in Palliative Care

1993 ◽  
Vol 27 (1) ◽  
pp. 5-15 ◽  
Author(s):  
Johanne De Montigny
Keyword(s):  
Palliative Care ◽  
Clinical Observation ◽  
Terminally Ill ◽  
The Other ◽  
Terminal Cancer ◽  
Physical Energy ◽  
Number Of Patients ◽  
The Family ◽  
Good Number

What does the stoic, silent expression of the terminal cancer patient signify? Clinical observation suggests that this emotional silence is often a physical energy-saving device, essential for survival to the very last breath. Caregivers and survivors may also experience a variety of contradictory and inexpressible emotions in silence. The role of the psychologist on the palliative care unit is to be there for the terminally-ill, as well as for the family/friends, both during the dying and bereavement, and for the caregiver team. This article focuses on the work of decoding ordinary words which for a good number of patients hide a painful past. It also stresses the necessity to remain open to the unexpected and to allow and trust the other to live what happens since there is a constant and unconscious effort to fill the void.

scholarly journals The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Children ◽  
2018 ◽  
Vol 5 (7) ◽  
pp. 97 ◽  
Author(s):  
Wei Chin ◽  
Tiina Jaaniste ◽  
Susan Trethewie
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Pediatric Palliative Care ◽  
Future Research ◽  
Medical Conditions ◽  
Disease Trajectory ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.

scholarly journals Assistance to children in palliative care in the Brazilian scientific literature

2014 ◽  
Vol 32 (1) ◽  
pp. 99-106 ◽  
Author(s):  
Nathalia Rodrigues Garcia-Schinzari ◽  
Franklin Santana Santos
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Scientific Literature ◽  
Target Population ◽  
Study Data ◽  
Pediatric Palliative Care ◽  
Structured Interviews ◽  
Publication Type ◽  
The Family ◽  
Number Of Publications

Objective: To describe what has been published in Brazilian scientific literature regarding pediatric palliative care. Data sources: Bibliographic review with a descriptive approach. In LILACS and SciELO databases, the descriptors "palliative care", "child", "pediatrics", "terminal illness" and "death" were sought, from January 2002 to December 2011. The eight selected articles were analyzed according to year of publication, type of study, data collected, target population, pathology, professionals involved, types of care and main findings. Data synthesis: Regarding the year of publication, there was an increase in the number of publications related to pediatric palliative care. Regarding the type of study, four articles were literature reviews and four were qualitative researches. Data was collected mainly by semi-structured interviews. The participants of the majority of the studies were children's relatives and health professionals. The main pathology addressed was cancer and the nurses were the most frequently cited professionals. The types of care provided were related to physical aspects, general care and psychological, social and spiritual aspects (less emphasis). The main findings were: little emphasis on the children's needs, the importance of including the family in the care provided and the lack of preparation of the health team. Conclusions: Despite the difficulties and the challenges in establishing pediatric palliative care, many articles brought important considerations for the development of this practice in the country.

Supporting Families and Family Caregivers in Palliative Care

2019 ◽  
pp. 405-419
Author(s):  
Kelli I. Stajduhar ◽  
J. Nicholas Dionne-Odom
Keyword(s):  
Palliative Care ◽  
Best Practices ◽  
Family Caregivers ◽  
Healthcare System ◽  
Family Caregiver ◽  
Care Home ◽  
Community Resources ◽  
Vital Part ◽  
The Family ◽  
Specialized Unit

This chapter investigates best practices for nurses who are involved in supporting families and family caregivers in palliative care. It views the family as a specialized unit of care which contributes to the healthcare system in a substantive way. There are significant implications for families and family caregivers in taking on these responsibilities, and nurses play a vital part in maintaining the integrity and health of the family and family caregiver. With a focus on palliative care, specific suggestions are made for nurses’ assessments in identifying needs and providing subsequent interventions. Particular sites of care (home, acute, etc.) and implications arising from a range of disease categories are discussed. The chapter concludes with recommendations for identifying community resources.

Supporting families in palliative care

2015 ◽  
pp. 500-514 ◽  
Author(s):  
Rose Steele ◽  
Betty Davies
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Terminally Ill ◽  
Nursing Interventions ◽  
Family Experience ◽  
The Family ◽  
Centered Care ◽  
The Individual ◽  
Levels Of Functioning ◽  
Family Centered

Family-centered care is a basic tenet of palliative care philosophy, which recognizes that terminally ill patients exist within the family system. The patient’s illness affects the whole family, and, in turn, the family’s responses affect the patient. Supporting families in palliative care means that nurses must plan their care with an understanding not only of the individual patient’s needs but also of the family system within which the patient functions. Families with a member who requires palliative care are in a “transition of fading away,” characterized by seven dimensions that help nurses to understand families’ experiences and to support them. Level of family functioning also plays a role in family experience and serves to guide nursing interventions for families with varying levels of functioning.

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