Mapping palliative and end of care research in Australia (2000–2018)

2020 ◽  
Vol 18 (6) ◽  
pp. 713-721
Author(s):  
H. Khalil ◽  
A. Downie ◽  
E. Ristevski
Keyword(s):  
Palliative Care ◽  
Physical Symptoms ◽  
Future Research ◽  
Care Research ◽  
Spirituality And Health ◽  
After Hours Care ◽  
Palliative Care Setting ◽  
Comprehensive Search ◽  
Number Of Publications ◽  
End Of Life Decision

AbstractObjectiveThe objective of this study is to map the existent research undertaken in Australia into broad thematic areas and identify the characteristics of the studies and areas of future research in the literature.MethodsA scoping review methodology was employed to map the current areas of research undertaken in Australia since January 2000 until the end of December 2018 according to years of publications, types of studies, populations studied, research themes, and areas of focus.ResultsOur review identified 1,405 Australian palliative care research publications between January 2000 and December 2018. Nearly 40% of the studies were quantitative (39%) and a third were qualitative studies (31%). The remainder of the studies were reviews, mixed methods, quality improvement projects, and others. One-third (30%) of the research was done with carers' participants followed by nurses (22%) and doctors and physicians (18%). The most frequently reported diagnosis in the studies was cancer with 42% of the publication total. The most frequently explored theme was physical symptoms (such as pain, breathlessness, nausea, delirium, and dyspnea) with a total of 16% of all articles followed by communication (15%). There was a large gap to the next most frequently explored theme with service delivery (9%) and coordination of care (8%). Assessment of patients (7%), end-of-life decision-making (6%), and rural/regional (6%) all produced a similar number of publications. Very few studies addressed topics such as quality of life, E-Health, after-hours care, spirituality, and health economics. Moreover, there were only 15 (1%) studies focused on the last days of life.Significance of the resultsThe current review presented a comprehensive search of the literature across almost two decades in Australia in the palliative care setting. It has covered a breadth of research topics and highlighted urgent areas for further research.

Development of an Abstraction Tool to Assess Palliative Care Components

2021 ◽  
pp. 104990912110617
Author(s):  
Meredith A. MacMartin ◽  
Amber E. Barnato
Keyword(s):  
Palliative Care ◽  
Qualitative Content Analysis ◽  
Medical Center ◽  
Clinical Care ◽  
Academic Medical Center ◽  
Physical Symptoms ◽  
Future Research ◽  
Clinical Documentation ◽  
Cohen’S Kappa ◽  
Cohen's Kappa

Background: Little is known regarding the fidelity of delivery of guideline-recommended components of palliative care in “real world” encounters. Objective: To develop a qualitative coding framework to identify components of clinical palliative care in clinical documentation across care settings. Design: Retrospective review of palliative care clinical documentation from medical providers, with directed qualitative content analysis to identify components of clinical care documented. Setting/Subjects: Purposively sampled deceased patients seen by palliative care at a US academic medical center between 7/1/2011–7/1/2018. Main Outcomes and Measures: The outcome of this work is a coding framework for use in future research. We assessed the robustness of the framework using Cohen’s kappa. Results: We reviewed sixty-two encounters from twenty-six patients. We identified 7 major themes in documentation: (1) addressing physical symptoms, (2) addressing psychological symptoms, (3) establishing illness understanding, (4) supporting decision making, (5) end-of-life planning, (6) understanding psychosocial context, and (7) care coordination. Interrater reliability varied widely between components, with Cohen’s kappa ranging from −.51 to 1. Conclusions: This pilot study provides a coding framework to measure documentation of clinical palliative care components. Several components could not be reliably identified using this framework, suggesting the need for additional measurement strategies.

scholarly journals Academic Palliative Care Research in Portugal: Are We on the Right Track?

Healthcare ◽  
2018 ◽  
Vol 6 (3) ◽  
pp. 97 ◽  
Author(s):  
Alexandra Pereira ◽  
Amélia Ferreira ◽  
José Martins
Keyword(s):  
Palliative Care ◽  
Underserved Populations ◽  
Research Priorities ◽  
Care Research ◽  
Academic Production ◽  
Practice Based Research ◽  
Academic Publications ◽  
Number Of Publications ◽  
The Right ◽  
Care Development

Background: The narrow link between practice, education, and research is essential to palliative care development. In Portugal, academic postgraduate publications are the main booster for palliative care research. Methods: This is a bibliometric study that aims to identify Portuguese palliative care postgraduate academic work published in electronic academic repositories between 2000 and 2015. Results: 488 publications were identified. The number of publications has increased, especially in the last five years. The most frequently used method was quantitative, healthcare professionals were the most studied participants, and psychological and psychiatric aspects of care comprised the most current theme. Practice-based priorities are financial costs and benefits of palliative care, awareness and understanding of palliative care, underserved populations, best practices, communication, and palliative care in nonhospital settings. Conclusion: The number of palliative care postgraduate academic publications has increased in Portugal in the past few years. There is academic production in the eight domains of quality palliative care and on the three levels of recommendation for practice-based research priorities. The major research gaps in Portugal are at the system and societal context levels.

scholarly journals Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicholas J. Hulbert-Williams ◽  
Sabrina F. Norwood ◽  
David Gillanders ◽  
Anne M. Finucane ◽  
Juliet Spiller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
Advanced Cancer ◽  
Psychological Intervention ◽  
Qualitative Interviews ◽  
Future Research ◽  
Study Results ◽  
Palliative Care Setting

Abstract Objectives Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. Methods Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. Results At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. Conclusions This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations—including recruiting non-cancer diagnoses, and earlier in the treatment trajectory—likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).

scholarly journals Resilience in inpatient palliative care nursing: a qualitative systematic review

2019 ◽  
Vol 10 (1) ◽  
pp. 79-90 ◽  
Author(s):  
Martin J Powell ◽  
Katherine Froggatt ◽  
Sabir Giga
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Data Extraction ◽  
Relevant Literature ◽  
Death And Dying ◽  
Future Research ◽  
Inpatient Setting ◽  
Thematic Synthesis ◽  
Palliative Care Setting ◽  
Care Nursing

BackgroundNurses in inpatient palliative care are frequently exposed to death and dying in addition to common stressors found in other nursing practice. Resilience may mitigate against stress but remains ill-defined and under-researched in the specialist palliative care setting.ObjectiveThe aim of this systematic review was to understand resilience from the perspectives of inpatient palliative care nurses.DesignA thematic synthesis of qualitative studies was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sourcesAcademic Search Ultimate, Cumulative Index to Nursing and Allied Health Literature, Medline Complete, PsycINFO and Scopus.Review methodsThe review stages were searching for relevant literature, selecting relevant papers, data extraction, critical appraisal and thematic synthesis.ResultsEight studies revealed 10 subthemes, 3 descriptive themes and 1 analytical theme: resilience occurs when nurses incorporate stressful aspects of their personal or professional lives into a coherent narrative that enhances their ability to cope with the demands of their role.ConclusionPalliative care nursing is more stressful if patients or situations remind nurses of personal experiences. Nurses cope better with adequate support; however, coping does not necessarily imply increased resilience. Resilience occurs when nurses cognitively process their experiences, articulate their thoughts and feelings into a coherent narrative, and construct a sense of meaning or purpose. Future research could explore how nurses understand resilience and how it could be enhanced in the palliative care inpatient setting. With resilience, nurses may remain in the profession longer and improve the quality of care when they do.

scholarly journals Home hospitalization for palliative cancer care: factors associated with unplanned hospital admissions and death in hospital

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Vincent Gamblin ◽  
Chloé Prod’homme ◽  
Adrien Lecoeuvre ◽  
André -Michel Bimbai ◽  
Joël Luu ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Hospital Admissions ◽  
Physical Symptoms ◽  
Factors Associated ◽  
Palliative Care Consultation ◽  
Palliative Care Setting ◽  
Unplanned Hospital Admissions ◽  
At Home

Abstract Background Home hospitalization at the end of life can sometimes be perturbed by unplanned hospital admissions (UHAs, defined as any admission that is not part of a preplanned care procedure), which increase the likelihood of death in hospital. The objectives were to describe the occurrence and causes of UHAs in cancer patients receiving end-of-life care at home, and to identify factors associated with UHAs and death in hospital. Methods A retrospective, single-center study (performed at a regional cancer center in the city of Lille, northern France) of advanced cancer patients discharged to home hospitalization between January 2014 and December 2017. We estimated the incidence of UHA over time using Kaplan-Meier method and Kalbfleish and Prentice method. We investigated factors associated with the risk UHA in cause-specific Cox models. We evaluated factors associated with death in hospital in logistic regressions. Results One hundred and forty-two patients were included in the study. Eighty-two patients (57.7 %) experienced one or more UHAs, a high proportion of which occurred within 1 month after discharge to home. Most UHAs were related to physical symptoms and were initiated by the patient’s family physician. A post-discharge palliative care consultation was associated with a significantly lower incidence of UHAs. Sixty-five patients (47.8 % of the deaths) died in hospital. In a multivariate analysis, living alone and the presence of one or more children at home were associated with death in hospital. Conclusions More than 40 % of cancer patients receiving end of life home hospitalization were not readmitted to hospital, reflecting the effectiveness of this type of palliative care setting. However, over half of the UHAs were due to an acute intercurrent event. Our results suggest that more efforts should be focused on anticipating these events at home – primarily via better upstream coordination between hospital physicians and family physicians.

scholarly journals Reflective insights from developing a palliative care children and young people’s advisory group

2021 ◽  
pp. 026921632097603
Author(s):  
Anna Roach ◽  
Debbie Braybrook ◽  
Steve Marshall
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Health Research ◽  
School Health ◽  
Public Involvement ◽  
After School ◽  
Advisory Group ◽  
Research Projects ◽  
Children And Young People ◽  
Care Research

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

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