scholarly journals CONDUCTING QUALITATIVE RESEARCH INTERVIEWS WITH PALLIATIVE AND END OF LIFE CARE PATIENTS IN THE HOME SETTING; REFLECTIONS AND RECOMMENDATIONS FROM AN ACADEMIC PALLIATIVE CARE RESEARCH CENTRE

2015 ◽  
Vol 5 (1) ◽  
pp. 117.2-117 ◽  
Author(s):  
S Sivell ◽  
H Prout ◽  
J Baillie ◽  
A Byrne ◽  
M Edwards ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Research Centre ◽  
Life Care ◽  
Home Setting ◽  
Care Research ◽  
Research Interviews

scholarly journals Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper

2015 ◽  
Vol 9 (1) ◽  
pp. e14-e14 ◽  
Author(s):  
Stephanie Sivell ◽  
Hayley Prout ◽  
Noreen Hopewell-Kelly ◽  
Jessica Baillie ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
Qualitative Research ◽  
End Of Life ◽  
Home Environment ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Well Being ◽  
Research Centre ◽  
Life Care ◽  
Home Setting ◽  
Terminally Ill Patients

ObjectivesTo present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.MethodsEight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.ResultsThe main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.ConclusionsThe ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

scholarly journals Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study

2022 ◽  
Vol 19 (2) ◽  
pp. 667
Author(s):  
Helen Yue-Lai Chan ◽  
Cecilia Nim-Chee Chan ◽  
Chui-Wah Man ◽  
Alice Dik-Wah Chiu ◽  
Faith Chun-Fong Liu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hong Kong ◽  
End Of Life ◽  
Delphi Study ◽  
End Of Life Care ◽  
Care Home ◽  
Local Context ◽  
Life Care ◽  
Home Setting ◽  
Modified Delphi

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage.

scholarly journals Assessment of unmet needs and barriers to end-of-life care provision in Kazakhstan

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
L Toleubekova ◽  
B Crape ◽  
K Dauyey ◽  
D Argandykov ◽  
A Bekenova ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Public Awareness ◽  
Computer Assisted ◽  
Care Provision ◽  
Life Care ◽  
Research Project ◽  
Software Analysis

Abstract Introduction Palliative care, a holistic multidisciplinary approach for those persons with terminal diseases, providing relief for physical, emotional, psychosocial and spiritual suffering of both the patients and their families and to support the dignity of all involved in the process of dying. The purpose of this qualitative research project is to identify the barriers for end-of-life care provision in Kazakhstan and to provide recommendations on how to integrate and assure high quality palliative care for patients within the cultural context of Kazakhstan. Methods Our proposed research project employed qualitative research methods, including semi-structured in-depth interviews using grounded theory. We conducted purposive recruiting with content analysis and semi-structured interviews until saturation was achieved. The interviews have been conducted at the University Medical Center (UMC) teaching hospitals, including National Research Center for Maternal and Child Health and the National Children’s Rehabilitation Center. The total number of participants were 65 individuals, of whom 26 were medical doctors, 20 nurses, 7 speech therapists, 6 psychologists, 4 educators and 2 social workers. All participants had experience working with terminally ill patients, family members, and caregivers. The data was then translated into English. Analysis of the interview data have been performed by using the computer assisted software analysis package - NVivo. Institutional review board (IRB) approval of the Nazarbayev University has been received, assuring informed consent and confidentiality safeguards in the research. Results The study findings indicate the evidence of growing demand in training of healthcare professionals, inadequate provision of pain relief and lack of public awareness about palliation as primary obstacles for palliative care development in Kazakhstan. Key messages The findings of the study are very important to help stakeholders to focus on the development of training opportunities for palliative care specialists. The results of the study help to develop milestones and concrete strategy for integration of palliative care services into the national healthcare system of Kazakhstan.

scholarly journals Does the Distinctiveness of Palliative Care Research Require Distinct Ethical Guidelines?

JAHR ◽  
2017 ◽  
Vol 8 (1) ◽  
pp. 31-57
Author(s):  
Daniel J. Hurst
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Care ◽  
Improve Quality ◽  
Life Care ◽  
Ethical Guidelines ◽  
Care Research ◽  
Rigorous Research

Palliative and end of life care is changing, becoming more widespread and improving for patients. Yet, the current literature in the field suggests that the evidence for palliative and end of life care is somewhat limited. Research on treatment decisions, family care, and advance directions are just a few of the areas that need rigorous research efforts. Palliative care research is essential in order to continue providing effective treatments to those suffering in the last stages of life. Indeed, the goal of good palliative care research is to relieve suffering and to improve quality of life. Similar to any other field, palliative care programs must develop on a research base, and patient care will suffer if it is not backed by sound research. However, weighted against this need are some who maintain that the ethical and practical challenges of palliative care research are unique and insurmountable. This analysis considers if distinct ethical guidelines are needed for palliative care research.

scholarly journals Pan-Canadian Framework for Palliative and End-of-Life Care Research

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 175s-175s
Author(s):  
J. Bray ◽  
S. Robbins ◽  
D. Dudgeon ◽  
K. Badovinac ◽  
R. Urquhart ◽  
...  
Keyword(s):  
Cancer Research ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Research Funding ◽  
Data Access ◽  
Research Network ◽  
Successful Implementation ◽  
Life Care ◽  
Care Research

Background and context: Ongoing advances have been made in the conceptualization and operationalization of palliative and end-of-life care (PEOLC) (e.g., palliative approaches to care, early identification of people who would benefit from palliative care). In addition, Canada has been a leader in PEOLC research and continues to have an internationally recognized research community. However, many Canadians continue to experience unnecessary pain and suffering at the end of life and receive care inconsistent with their goals and preferences. Within this context, the Canadian Cancer Research Alliance (CCRA) sought to develop a national research framework to guide Canada's cancer research funders in response to their strategic priority to improve the patient experience and quality of life for all cancer patients. Aim: To develop and implement a national framework and recommendations to enable funders to capitalize on existing research strengths and build capacity to address unmet needs to advance the field and broaden the scope, beyond its historical affiliation with advanced cancer, to include PEOLC for all those living and dying with life-limiting conditions. Strategy/Tactics: The framework's development was informed by multiple approaches, including: a strategic literature review; an analysis of PEOLC research funding in Canada from 2005-13; and an online survey and key informant interviews from the broader stakeholder community. Program/Policy process: A working group of CCRA member representatives and palliative care experts met regularly to provide guidance and feedback to a consultant who synthesized the data and formulated recommendations. In total, > 200 stakeholders (e.g., patients, caregivers, researchers, volunteers, practitioners, decision-makers, and policy-makers) provided input through the survey and interviews. Outcomes: The Pan-Canadian Framework for Palliative and End-of-Life Research was released March 2017. It emphasizes priorities for research funding across three broad themes: 1) Transforming models of care; 2) Patient and family centredness; and 3) Ensuring equity. The identified research priorities are underpinned by four building blocks: capacity building; knowledge, synthesis, exchange, and implementation; data access and standardization; and research network development. What was learned: Successful implementation of the framework's recommendations requires strong leadership from champions within the community. The formation of the Pan-Canadian Palliative Care Research Collaborative led by palliative care clinician-researchers, in response to the identified need for a research network, is an example of an early success resulting from release of the framework. Continued efforts are needed to ensure ongoing uptake of the framework's recommendations. CCRA members have commenced planning to identify next steps for joint action.

scholarly journals Trends in Pediatric Palliative Care Research (TPPCR) 2021; Issue #9: Commentary on Rapoport & Gupta

2021 ◽  
Author(s):  
Katherine Ketchum ◽  
- TPPCR
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
End Of Life ◽  
End Of Life Care ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Care Research

This TPPCR commentary discusses the 2021 paper by Rapoport & Gupta, “Children and adolescents with hematologic cancers deserve better end-of-life care” published in Cancer.

scholarly journals Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multivariate Logistic Regression ◽  
Comfort Care ◽  
Lower Odds ◽  
Medicare Data ◽  
Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

scholarly journals Association between high cost user status and end-of-life care in hospitalized patients: A national cohort study of patients who die in hospital

2021 ◽  
pp. 026921632110020
Author(s):  
Kieran L Quinn ◽  
Amy T Hsu ◽  
Christopher Meaney ◽  
Danial Qureshi ◽  
Peter Tanuseputro ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Major Surgery ◽  
Life Care ◽  
Healthcare Use ◽  
National Cohort ◽  
Acute Healthcare ◽  
Invasive Intervention

Background: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. Aim: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. Settings and participants: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person’s hospitalization in which they died. Results: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. Conclusions: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.

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