scholarly journals A conceptual analysis of the meaning of comfort at the end-of-life using the Walker and Avant (2014) Framework

2021 ◽  
Vol 8 (2) ◽  
pp. 91-97
Author(s):  
Yong-Chao Hou ◽  
Fiona Timmins ◽  
Qian Zhou ◽  
Ju-Zi Wang
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Nursing Care ◽  
Conceptual Analysis ◽  
Concept Analysis ◽  
Home Life ◽  
Integrated Intervention ◽  
Cultural Support ◽  
Physical Comfort

Abstract Objective The aim of the authors is to clarify the concept of comfort at the end-of-life in order to support understandings of fundamental nursing care needed at this stage of healthcare. Methods The Walker and Avant framework was applied to develop a deeper understanding of the concept of comfort at the end of life. Results Five defining attributes of comfort in the end-of-life were identified and they are having a peaceful home-life environment, trust and consolation, proximity and social-cultural support, alleviation of suffering, and a process of integrated intervention by nurses. Conclusions At the end-of-life patients commonly experience physical, psychological, social-cultural, and environmental discomfort. Patients’ families also encounter significant challenges. However, their comfort needs are often secondary to that of the patient. Additionally, a lack of clarity exists regarding the holistic meaning of comfort at the end-of-life, which can largely be confined to understandings of physical comfort for the patient, with a limited understanding of addressing family/caregivers’ needs. Therefore, this concept analysis may provide some guidance in this regard and also provides support toward a more integrated understanding of the concept.

scholarly journals End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Kristin Levoy ◽  
Elise Tarbi ◽  
Joseph De Santis
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Concept Analysis ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Abstract Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research.

Ethical advocacy in the end‐of‐life nursing care: A concept analysis

Nursing Forum ◽  
2021 ◽  
Author(s):  
Nasim Hatefimoadab ◽  
Mohammad A. Cheraghi ◽  
David C. Benton ◽  
Shahzad Pashaeypoor
Keyword(s):  
End Of Life ◽  
Nursing Care ◽  
Concept Analysis

scholarly journals FAMILY CAREGIVERS’ COMMUNICATION NEEDS AT THE END OF LIFE OF OLDER PATIENTS AT GERIATRIC FACILITIES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S54-S55
Author(s):  
Rinat Cohen ◽  
Gal Maydan ◽  
Shai Brill ◽  
Jiska Cohen-Mansfield
Keyword(s):  
Qualitative Analysis ◽  
End Of Life ◽  
Family Caregivers ◽  
Nursing Care ◽  
Information Needs ◽  
Assisted Ventilation ◽  
Skilled Nursing ◽  
Language And Culture ◽  
Communication Needs

Abstract Current literature on end-of-life communication (EOLC) between family caregivers (FCs) and health professionals (HPs) lacks reference to FCs’ communication needs and primarily addresses its formal aspects of communication such as offering advance directives. We explored FC’s communication needs and developed a questionnaire to evaluate the quality of EOLC. Interviews were conducted with 152 Israeli FCs of patients from nursing care, skilled nursing care, assisted ventilation, and dementia units within four facilities (nursing homes and geriatric medical centers). Most participants were women (61%), married (78%), and were children of the patients (77%), with a mean age of 57.5 (S.D.=12.01, range: 29-88). Qualitative analysis yielded several themes: FCs’ concerns about the availability and accessibility of all types of HPs, information needs (e.g., the need for regular updates initiated by HPs), FCs’ need for emotional support, and difficulties stemming from differences in language and culture. The need for improved communication in these spheres extended to all stages of hospitalization. Based on these needs, we developed a questionnaire to evaluate the quality of EOLC. Reliability was measured in a different sample, and ranged from Cronbach alpha of .916 (41 items; 41 FCs) to .937 (41 items with discrimination index greater than .3; 78 FCs). Factor analysis yielded factors similar to the themes that emerged from the qualitative analysis. The findings highlight aspects of EOLC between FCs and HPs which should be addressed and improved. Thus, this study is a crucial first step toward improving the quality of care at the end-of-life.

Smart technology-assisted Home Nursing Care Program for Persons with Dementia or Hip Fracture: Implementation Difficulties: Thematic Analysis (Preprint)

2020 ◽  
Author(s):  
Yea-Ing Shyu ◽  
Chung-Chih Lin ◽  
Ching-Tzu Yang ◽  
Pei-Ling Su ◽  
Jung-Ling Hsu
Keyword(s):  
Hip Fracture ◽  
Family Caregivers ◽  
Nursing Care ◽  
Care Program ◽  
Wearable Devices ◽  
Elderly Persons ◽  
Home Nursing ◽  
Smart Technology ◽  
Smart Clothing ◽  
Home Nursing Care

BACKGROUND Wearable devices have been developed and implemented to improve data collection in remote health care and smart care. Wearable devices have the advantage of always being with individuals, enabling easy detection of their movements. In this study, we developed and implemented a smart-care system using smart clothing for persons with dementia and with hip fracture. We conducted a preliminary study to understand family caregivers’ and care receivers’ experiences of receiving a smart technology-assisted (STA) home-nursing care program. OBJECTIVE This paper reports the difficulties we encountered and strategies we developed during the feasibility phase of studies on the effectiveness of our STA home-nursing care program for persons with dementia and hip fracture. METHODS Our care model, a STA home-nursing care program for persons with dementia and those with hip fracture included a remote-monitoring system for elderly persons wearing smart clothing was used to facilitate family caregivers’ detection of elderly persons’ movements. These movements included getting up at night, staying in the bathroom for more than 30 minutes, not moving more than 2 hours during the day, leaving the house, and daily activities. Participants included 13 families with 5 patients with hip fracture and 7 with dementia. Research nurses documented the difficulties they encountered during the process. RESULTS Difficulties encountered in this smart-care study were categorized into problems setting up the smart-care environment, problems running the system, and problems with participant acceptance/adherence. These difficulties caused participants to drop out, the system to not function or delayed function, inability to collect data, extra costs of manpower, and financial burden. Strategies to deal with these problems are also reported. CONCLUSIONS During the implementation of smart care at home for persons with dementia or hip fracture, different aspects of difficulties were found and strategies were taken. The findings of this study can provide a reference for future implementation of similar smart-home devices.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

scholarly journals Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
Bregje D. Onwuteaka-Philipsen ◽  
Cécile R.L. Boot ◽  
Allard J. van der Beek ◽  
Hanna T. Klop ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Family Care ◽  
Work And Family ◽  
Similar Process ◽  
Paid Work ◽  
Health And Wellbeing ◽  
Care Situation ◽  
At Home

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

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