Providing End-of-Life Care: Increased Empathy and Self-efficacy Among Student Caregivers in Residential Homes for the Dying

2018 ◽  
Vol 36 (6) ◽  
pp. 538-545 ◽  
Author(s):  
Carol S. Weisse ◽  
Kelly Melekis ◽  
Bailey Hutchins
Keyword(s):  
End Of Life ◽  
Self Efficacy ◽  
End Of Life Care ◽  
Skills Training ◽  
Community Action ◽  
Life Care ◽  
Care Providers ◽  
Residential Homes ◽  
Reflective Journals ◽  
Hospice Patients

Background: Health-care providers report a lack of training in end-of-life care and limited opportunities exist to learn about the dying process in home settings where most prefer to die. Aim: To evaluate the effectiveness of a Community Action, Research, and Education (CARE) program designed to promote empathy and self-efficacy communicating with and caring for terminally ill patients. Methods: This mixed-methods study collected pre–post data from 18 undergraduates (7 men≤ 11 women) in a 8-week immersive program where they served as primary caregivers in residential homes for the dying providing 200 hours of bedside care to hospice patients during their final days. Quantitative measures assessed empathy using the Jefferson Scale of Empathy-Health Professions (JSE-HPS) version and self-efficacy using a 20-question palliative care skill assessment. Qualitative analyses were conducted on reflective journals to further assess knowledge, skill, and value development. Results: Paired t tests revealed significant increases in empathy ( P < .05) and self-efficacy ( P < .001) to provide end-of-life care. Thematic analysis of reflective journals further demonstrated specific instances of empathy and self-efficacy. Conclusions: Community-run residential homes for the dying offer a unique opportunity for skills training in end-of-life care. The opportunity to serve as a caregiver for the dying improved students’ confidence and ability to provide empathic patient- and family-centered end-of-life care to hospice patients in their final days.

Self-Efficacy in End-of-Life Care Survey--Unregulated Care Providers Version

2016 ◽  
Author(s):  
Katherine Kortes-Miller ◽  
Kristen Jones-Bonofiglio ◽  
Stephanie Hendrickson ◽  
Mary Lou Kelley
Keyword(s):  
End Of Life ◽  
Self Efficacy ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Care Survey

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

scholarly journals RESIDENTIAL HOMES FOR THE DYING: AN UNTAPPED RESOURCE FOR TEACHING PATIENT- AND FAMILY-CENTERED END-OF-LIFE CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S728-S728
Author(s):  
Chantelle Sharpe ◽  
Carol Weisse
Keyword(s):  
End Of Life ◽  
Undergraduate Students ◽  
End Of Life Care ◽  
Care Program ◽  
Professional School ◽  
Life Care ◽  
Formal Curriculum ◽  
Residential Homes ◽  
Family Centered ◽  
And Training

Abstract Clinical training opportunities in end-of-life care are lacking, especially in home settings where death is expected and supported as a natural process. The Community Action, Research and Education (CARE) program provides students who are interested in healthcare a better understanding the challenges of providing end-of-life care. Over 8 weeks, undergraduate students serve as surrogate family members providing care to hospice patients in residential homes for the dying. Additionally, students engage with a formal curriculum by completing online learning modules each emphasizing different skills for providing end-of-life care. This study analyzed data from three cohorts of undergraduate students (n = 21) who participated in the CARE Program. Analyses from assessment surveys revealed that students reported improved knowledge and skills, including enhanced bedside education and training and increased ability to care for someone at the end-of-life after completion of the program. Also, 95% (n = 20) of students over the three cohorts reported that the formal coursework enhanced skills and training related to bedside care. Previous research has examined end of life training in a professional school setting, but the focus was on care in an institutional or facility setting (Billings et al., 2010; Supiano, 2013). The CARE program is a model for experiential learning in a home setting that provides a special lens to the dying experience in a holistic, patient and family centered way.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

scholarly journals Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Nursing Support ◽  
Respiratory Problems ◽  
The Uk ◽  
The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

scholarly journals Family Behaviors as Unchanging Obstacles in End-of-Life Care: 16-Year Comparative Data

2020 ◽  
Vol 29 (4) ◽  
pp. e81-e91
Author(s):  
Renea L. Beckstrand ◽  
Jasmine B. Jenkins ◽  
Karlen E. Luthy ◽  
Janelle L. B. Macintosh
Keyword(s):  
Intensive Care Unit ◽  
Critical Care ◽  
Intensive Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Critical Care Nurses ◽  
Life Care ◽  
Care Providers ◽  
Over Time

Background Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined. Objective To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time. Methods In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999. Results Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient’s end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design. Conclusions The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.

Cannabis in End-of-Life Care: Examining Attitudes and Practices of Palliative Care Providers

2018 ◽  
Vol 50 (4) ◽  
pp. 348-354 ◽  
Author(s):  
Rachel Luba ◽  
Mitch Earleywine ◽  
Stacey Farmer ◽  
Melissa Slavin
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Attitudes And Practices

Palliative Care and End-of-Life Care

2019 ◽  
pp. 201-210
Author(s):  
Carole Bouleuc ◽  
Christine Langenaeken
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Skills Training ◽  
Prognostic Scores ◽  
Life Care ◽  
Prognostic Assessment ◽  
Referral Criteria ◽  
The Individual ◽  
Staffing Requirements

Abstract: Quality palliative care requires the integration of palliative care into standard oncological care, an educated workforce, and access to essential drugs. Referral criteria for specialist palliative care include time- and needs-based criteria. Prognostic scores have been constructed to assist in prognostic assessment but remain inaccurate in the individual patient. Patient–clinician communication is essential; guidelines for effective communication have been developed, and communication skills training and early exposure are important. Advanced care planning is of paramount importance for patients and families, since it can reduce aggressiveness of end-of-life care. Barriers to the development of palliative care need to be addressed; a resource-stratified practice guideline has been developed making recommendations for model of care, staffing requirements, roles, and training needs of members. Quality indicators have been developed as well, and these focus mainly on outcome indicators. The movement to legalize assisted dying has met with much controversy, yet this may also be an opportunity for communication, transparency, and accountability.

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