Transitions during end-of-life care from the perspective of informal caregivers – A concept analysis using Rodgers’ (2000) evolutionary approach

2021 ◽  
Vol 51 ◽  
pp. 101899
Author(s):  
Brid McCarthy ◽  
Kevin Connaire ◽  
Fiona Timmins
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Informal Caregivers ◽  
Concept Analysis ◽  
Evolutionary Approach ◽  
Life Care

Informal Caregivers’ Perceptions of Needs From Hospice Providers: An Integrative Review

2019 ◽  
Vol 36 (12) ◽  
pp. 1114-1123
Author(s):  
Ruth Anne Engbers
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Interpersonal Skills ◽  
Hospice Care ◽  
Informal Caregivers ◽  
The United States ◽  
Easy Access ◽  
Life Care ◽  
The United Kingdom ◽  
Formal Services

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers. Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases. Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills. Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC’s transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.

scholarly journals OLDER ADULTS WITH ADVANCED HIV/AIDS AND THEIR INFORMAL CAREGIVERS’ COMMUNICATION ON END-OF-LIFE CARE

2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 503-503 ◽  
Author(s):  
V.H. Raveis ◽  
M. Carrero ◽  
D. Karus ◽  
P.A. Selwyn
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
Informal Caregivers ◽  
Life Care ◽  
Hiv Aids

scholarly journals Talking about end-of-life care in a timely manner

Breathe ◽  
2017 ◽  
Vol 13 (4) ◽  
pp. e95-e102 ◽  
Author(s):  
Frank W.J.M. Smeenk ◽  
Laurien A. Schrijver ◽  
Hennie C.J. van Bavel ◽  
Eric F.J. van de Laar
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Informal Caregivers ◽  
Death And Dying ◽  
Training Session ◽  
Second Phase ◽  
List Type ◽  
Life Care ◽  
Timely Manner ◽  
Frail Elderly People

In 2014, a group of physicians of the Catharina Hospital in Eindhoven (The Netherlands) started a project called “Talking about end-of-life care in a timely manner”. Just like others in the country, the Eindhoven group noticed that regularly, very frail elderly people were admitted to hospital in acute situations without there ever having been conversations about their wishes concerning treatment options at the end of life. The project aimed to prevent unnecessary admissions and treatments for these frail patients by stimulating physicians, patients and informal caregivers to start conversations about end-of-life care together at an earlier stage. The first phase of the project consisted of research: a study of the relevant literature on previous projects on the matter and a small empirical study in the Eindhoven region. This yielded as the most important causes of the delay of these conversations: the factors of timing (when is the right moment?), reserve (because of the potential emotional despair of the patient) and hope (who am I to rob a patient of their hope?).In the second phase of the project, several approaches were developed to help caregivers, patients and informal caregivers with the planning and execution of conversations about 
end-of-life care. Meetings were organised for patients and informal caregivers to foster awareness and to provide information. For caregivers, information was provided (via symposia and an app) and specifically designed training sessions were developed. The training sessions consist of reflection on the caregivers’ personal choices with regard to end-of-life care (research has shown that caregivers choose less intensive medical treatments at the end of life) and of practising with the known complicating factors of timing, reserve and hope, and the different ways of thinking and talking about death and dying (typology of death and dying).Educational aimsTo understand the importance of discussing end-of-life care preferences with your patients at the appropriate time.To become aware of the possible interfering factors of timing, reserve and hope in talking about end-of-life care.Key pointsUsing the Surprise Question may be a useful tool in determining the appropriate moment to discuss this with your patients.By talking with your patients about end-of-life care in a timely manner, unnecessary and unwanted treatment can be prevented.Constraints of doctors to implement this in their practice can be overcome by implementing a training session as described in this article.Collaboration between primary and secondary care on this issue is strongly recommended in order to assure the care continuum maximally.

End of Life Care: The Experience of Seniors and Informal Caregivers

2002 ◽  
Vol 21 (1) ◽  
pp. 137-146 ◽  
Author(s):  
Margaret M. Ross ◽  
Michael J. MacLean ◽  
Roy Cain ◽  
Scott Sellick ◽  
Rory Fisher
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Informal Caregivers ◽  
Life Care ◽  
Care Providers ◽  
Research Attention ◽  
Life Threatening Illness ◽  
Life Issues ◽  
End Of Life Issues

ABSTRACTAs Canada's elderly population grows, an increasing number of seniors will require care as they face the end of life. Relatively little research attention, however, has been given to end-of-life issues, including those related to treatment and care for persons who are both old and dying. Families and health care providers have little direction and guidance to ensure an optimum quality of life for seniors prior to death and during the period of bereavement. This article presents an abbreviated summary of the literature regarding end-of-life issues and challenges for seniors who face a life threatening illness and are at, or near, the end of their lives. The article is also informed by a series of focus groups with elderly and other informal caregivers regarding the giving of help and getting support while caring for persons who are dying. It concludes with a response to this evidence by making a series of recommendations aimed at ensuring optimal end-of-life care for seniors who are dying and their families.

scholarly journals End of life care: A concept analysis

2021 ◽  
Vol 7 (2) ◽  
pp. 1
Author(s):  
Hodan Ibrahim ◽  
Jessie Johnson ◽  
Fadi Khraim
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Death And Dying ◽  
Concept Analysis ◽  
Systematic Search ◽  
Good Death ◽  
Life Care ◽  
Evolutionary Method ◽  
Care Approach

Background: End of life care is crucial to preserve a dying patient’s values and dignity. This type of care also works towards fulfilling any last wishes the dying person may have.Aim: The aim of this paper is to analyze the concept of end of life care using Rodgers’ evolutionary method as a guide.Methods: A systematic search of the literature was conducted in CINAHL, PsycINFO, and Medline databases. After reviewing the literature from 2006 to 2019, 14 articles were selected to be included in this analysis.Results: The consequences of this concept include a good death, peaceful death, and dying with dignity.Conclusions: This concept analysis provides attributes that could help to develop a standardized end of life care approach to patients who are dying.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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