scholarly journals End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

2020 ◽  
pp. 026921632097426
Author(s):  
Michael Toze ◽  
Mo Ray ◽  
Thomas George ◽  
Kelly Sisson ◽  
David Nelson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Premature Death ◽  
Qualitative Studies ◽  
Future Research ◽  
Neurological Conditions ◽  
Informal Carers ◽  
The Right ◽  
Models Of Service Delivery

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions

2011 ◽  
Vol 9 (4) ◽  
pp. 377-385 ◽  
Author(s):  
Eleanor Wilson ◽  
Jane Seymour ◽  
Aimee Aubeeluck
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Small Body ◽  
Outpatient Service ◽  
Inpatient Service ◽  
Life Care ◽  
Care Needs ◽  
Long Term Conditions ◽  
Neurological Conditions

AbstractObjective:This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC).Method:Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus groups and 3 individual interviews. Sites included six long-term residential neurological care centers, an inpatient service at an urban hospice, and a multi-disciplinary outpatient service for people with Huntington's disease.Results:Findings show a concordance between the views of staff from across the three types of participating services. Staff placed particular emphasis on teamwork, support from community-based resources, and developing rapport with patients in order to provide high quality palliative and end-of-life care. All staff perceived that identifying the dying phase was a particular challenge, sometimes resulting in patients being admitted to hospital at the end of life in contravention of their expressed advance wishes for place of death.Significance of results:This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.

scholarly journals Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

2017 ◽  
Vol 2017 ◽  
pp. 1-17 ◽  
Author(s):  
Shevaun Nadin ◽  
Mohammed Ali Miandad ◽  
Mary Lou Kelley ◽  
Jill Marcella ◽  
Daren K. Heyland
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Family Members ◽  
Face Validity ◽  
Future Research ◽  
Life Care ◽  
Term Care ◽  
New Instrument

Rationale. Improving end-of-life care (EOLC) in long-term care (LTC) homes requires quality measurement tools that assess families’ satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire) for use in LTC to measure families’ perceptions of the EOLC experience and to be self-administered.Methods and Results.Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added.Phase 2. The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered.Phase 3. The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach’s alpha coefficients (range: .88–.94) indicated internal consistency.Conclusion. This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC) that can be used to measure families’ perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning.

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

scholarly journals Cost of shifting from healthcare to long-term care in later life across major diseases: analysis of end-of-life care during the last 24 months of life

2018 ◽  
Vol 13 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Tomoko Terada ◽  
Keiko Nakamura ◽  
Kaoruko Seino ◽  
Masashi Kizuki ◽  
Naohiko Inase
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Later Life ◽  
Life Care ◽  
Term Care

Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in CKD

2014 ◽  
Vol 63 (6) ◽  
pp. 913-927 ◽  
Author(s):  
Allison Tong ◽  
Katharine L. Cheung ◽  
Sumi Sukumaran Nair ◽  
Manjula Kurella Tamura ◽  
Jonathan C. Craig ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Studies ◽  
Life Care ◽  
Thematic Synthesis

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

Patient and Family Engagement in THE Conversation

2017 ◽  
pp. 93-113
Author(s):  
Jennifer Freytag ◽  
Richard L. Street Jr.
Keyword(s):  
Health Outcomes ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Engagement ◽  
Future Research ◽  
Life Care ◽  
Patient Centered ◽  
Communication Framework ◽  
Communicative Functions ◽  
Main Ideas

This chapter uses a patient-centered communication framework to examine observational studies of patient and family engagement in communication about end-of-life care. It analyzes how the literature has connected communication with health outcomes in end-of-life care. Within this analysis, it brings together three main ideas. First, family plays an important and overlooked role in communication about end-of-life care. Second, the literature describes communication that serves multiple functions, and it describes the special challenges presented by end-of-life care communication. Finally, it links these communicative functions with health outcomes and outlines directions for future research.

Advance directives: the emerging body of research

1999 ◽  
Vol 8 (1) ◽  
pp. 514-519 ◽  
Author(s):  
BB Ott
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Demographic Data ◽  
The Body ◽  
Future Research ◽  
Computer Search ◽  
Life Care ◽  
Study Selection ◽  
New Procedures

BACKGROUND: With the passage of the Patient Self-Determination Act in 1990, new procedures and documents became available for planning end-of-life care. These new procedures and documents are now being examined scientifically. OBJECTIVE: To review existing research on the use of advance directives. DATA SOURCES: Computer search using Grateful Med software from the National Library of Medicine with MEDLINE and BIOETHICSLINE databases. STUDY SELECTION: Studies that showed an emerging consensus or reported vastly differing results were selected. Selected studies examined these specific areas: demographic data on patients with advance directives, completion rates, capacity to complete, patients' preferences, stability of patients' decisions over time, treatment choices, proxy decision makers, treatment provided, and cost. RESULTS: The body of important research about advance directives is growing. A profile of their clinical utility is emerging. CONCLUSIONS: The research done so far can stimulate future research and can begin to suggest possible changes in practice. However, the body of research is not yet large enough or well controlled enough to answer conclusively many of the questions about planning of end-of-life care.

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