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Palliative Medicine Jan 2024People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care.... (Review)
Review
BACKGROUND
People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered.
AIM
The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers.
DESIGN
A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care.
DATA SOURCES
Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care.
RESULTS
A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early.
CONCLUSIONS
Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.
Topics: Humans; Palliative Care; Parkinson Disease; Caregivers; Quality of Life; Advance Care Planning
PubMed: 38054428
DOI: 10.1177/02692163231214408 -
BMC Palliative Care Mar 2024Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of...
BACKGROUND
Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care.
METHODS
A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values.
RESULTS
We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values.
CONCLUSION
Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.
Topics: Humans; Child; Palliative Care; Quality of Life; Terminal Care; Pain; Family
PubMed: 38481215
DOI: 10.1186/s12904-024-01367-w -
Journal of Pain and Symptom Management May 2018To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was...
CONTEXT
To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts.
OBJECTIVES
This systematic review evaluated palliative care outcome measures, outcomes, and interventions in low-resource countries.
METHODS
After title searches, abstracts and full-text articles were screened for inclusion. Data were extracted to report on intervention models, outcome measures used, and intervention outcomes.
RESULTS
Eighteen papers were reviewed, reporting on interventions conducted across nine low-resource countries. These interventions evaluated home-based palliative care models; a community-managed model; palliative care integrated with hospitals, hospices, or HIV clinics; and models focused on patients' self-management. Three studies were randomized controlled trials. Other studies used nonrandomized trials, cohort studies, mixed methods, pre-post test evaluation, cost-accounting evaluation, and cross-sectional surveys. Thirteen studies measured physical outcomes, 10 using multidimensional instruments. Nine studies measured psychological outcomes, eight using multidimensional instruments. Nine studies measured social outcomes, seven using multidimensional instruments. Nine studies measured outcomes across multiple domains. Across outcomes evaluated, results were reported in the direction of benefit associated with palliative care interventions.
CONCLUSION
Many palliative care intervention models exist to serve patients in low-resource countries. Yet, limited high-quality evidence from low-resource countries is available to document intervention outcomes. Rigorous experimental studies and greater measurement of multidimensional aspects of palliative care are needed to advance the science of palliative care in low-resource settings.
Topics: Developing Countries; Humans; Outcome Assessment, Health Care; Palliative Care; Poverty
PubMed: 29305322
DOI: 10.1016/j.jpainsymman.2017.12.487 -
Journal of Immigrant and Minority Health Feb 2022The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A... (Review)
Review
The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants' access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.
Topics: Communication; Ethnicity; Europe; Humans; Palliative Care; Transients and Migrants
PubMed: 34709528
DOI: 10.1007/s10903-021-01302-8 -
Palliative Medicine Oct 2018Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains...
BACKGROUND
Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice.
AIM
To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them.
DESIGN
Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis.
DATA SOURCES
MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search.
RESULTS
19 papers of 16 studies were included from Australia ( n = 5), the United Kingdom ( n = 5), and United States ( n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'.
CONCLUSION
In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment.
Topics: Australia; Emergency Service, Hospital; Humans; Palliative Care; United Kingdom
PubMed: 30028242
DOI: 10.1177/0269216318783920 -
Palliative & Supportive Care Jun 2017The purpose of our systematic review was to determine whether the introduction of palliative care (PC) teams reduces length of stay and/or mortality for terminally ill... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
The purpose of our systematic review was to determine whether the introduction of palliative care (PC) teams reduces length of stay and/or mortality for terminally ill patients (TIPs) in an intensive care unit (ICU).
METHOD
We hoped to examine studies that compared TIPs in an ICU who received end-of-life care following implementation of a PC team (intervention group) to those who received care where PC teams had not yet been introduced (control group). We searched MEDLINE via PubMed, LILACS, Scopus, Embase, and Cochrane CENTRAL (search conducted in December of 2015) without language restrictions. Our outcome measures were length of stay in an ICU, presented as an average difference with a corresponding 95% confidence interval (CI 95%), and mortality in the ICU, presented as a risk ratio with a corresponding CI 95%. Two of our authors independently extracted all of the data.
RESULTS
Of the 399 publications identified, 27 were selected for full-text analysis and 19 were excluded, leaving 8 articles for inclusion, which involved a total of 7,846 patients. A metaanalysis of mortality in the ICU was conducted with four studies. Lower mortality was found in the intervention group: risk ratio = 0.78 (CI 95% = 0.70-0.87), p < 0.00001, I 2 = 18%. Length of stay in the ICU was presented as a mean and standard deviation in four studies, and the result was a reduction of ~2.5 days in the length of stay with application of the intervention: mean = -2.44 days (CI 95% = -4.41 to -0.48), p = 0.01, I 2 = 86%.
SIGNIFICANCE OF RESULTS
Introduction of palliative care teams can reduce mortality rates in the ICU, and perhaps shorten length of stay in the ICU for terminally ill patients.
Topics: Adult; Humans; Intensive Care Units; Length of Stay; Mortality; Odds Ratio; Palliative Care; Terminally Ill
PubMed: 27460968
DOI: 10.1017/S1478951516000584 -
The American Journal of Hospice &... Nov 2017There is an emerging literature on the physician competencies most meaningful to patients and their families. However, there has been no systematic review on physician... (Review)
Review
BACKGROUND
There is an emerging literature on the physician competencies most meaningful to patients and their families. However, there has been no systematic review on physician competency domains outside direct clinical care most important for patient- and family-centered outcomes in critical care settings at the end of life (EOL). Physician competencies are an essential component of palliative care (PC) provided at the EOL, but the literature on those competencies relevant for patient and family satisfaction is limited. A systematic review of this important topic can inform future research and assist in curricular development.
METHODS
Review of qualitative and quantitative empirical studies of the impact of physician competencies on patient- and family-reported outcomes conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines for systematic reviews. The data sources used were PubMed, MEDLINE, Web of Science, and Google Scholar.
RESULTS
Fifteen studies (5 qualitative and 10 quantitative) meeting inclusion and exclusion criteria were identified. The competencies identified as critical for the delivery of high-quality PC in critical care settings are prognostication, conflict mediation, empathic communication, and family-centered aspects of care, the latter being the competency most frequently acknowledged in the literature identified.
CONCLUSION
Prognostication, conflict mediation, empathic communication, and family-centered aspects of care are the most important identified competencies for patient- and family-centered PC in critical care settings. Incorporation of education on these competencies is likely to improve patient and family satisfaction with EOL care.
Topics: Clinical Competence; Communication; Critical Care; Empathy; Humans; Negotiating; Palliative Care; Patient Satisfaction; Patient-Centered Care; Physician-Patient Relations; Prognosis; Terminal Care
PubMed: 27582376
DOI: 10.1177/1049909116667071 -
Palliative Medicine Jun 2020Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for...
BACKGROUND
Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer.
AIM
To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access.
DESIGN
A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874).
DATA SOURCES
Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool.
RESULTS
An evidence base of mainly low- and moderate-quality studies ( = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services.
CONCLUSION
Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life.
Topics: Adolescent; Canada; Child; Child, Preschool; Cross-Sectional Studies; Humans; Infant; Neoplasms; Palliative Care; Pediatrics; Prospective Studies; Quality of Life; Retrospective Studies; Young Adult
PubMed: 32362212
DOI: 10.1177/0269216320908490 -
Annals of Palliative Medicine Oct 2022People receiving palliative care have complex, wide-ranging, and changing needs, not just physical distress, but also psychosocial, practical, and spiritual. Influences...
BACKGROUND
People receiving palliative care have complex, wide-ranging, and changing needs, not just physical distress, but also psychosocial, practical, and spiritual. Influences on complexity in palliative care are different among healthcare providers and may depend on diverse aspects of the patient's condition, time, and environment. Therefore, this study aimed to integrate and describe the perspective of complexity in palliative care.
METHODS
We used an integrative review, which is a method of compiling, summarizing, and analyzing existing insights from previous studies. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO (EBSCOhost), Web of Science Core Collection, and CINAHL (EBSCOhost), examining literature from May 1972 to September 2020 and updated in December 2020. Subsequently, synthesis without meta-analysis of the findings was completed.
RESULTS
We identified 32 peer-reviewed articles published in English. The included literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We identified 29 that influenced complexity in palliative care, 25 perceptions of the patient, including background and physical, psychological, social, and spiritual; two perceptions in the healthcare setting; and two perceptions in the socio-cultural setting. Above all, the perceptions of complexity in palliative care included younger age, prognosis, and spirituality. In addition, we added the identified perceptions of complexity with references to the complexity model in palliative care.
CONCLUSIONS
Although this review was limited in its search strategy and some data sources may have been overlooked, it still provided perceptions that influenced complexity in palliative care. These complex influencing perceptions are necessary for patients to receive appropriate palliative care at the right time and for health care providers to conduct a multi-disciplinary team approach. Furthermore, longitudinal prospective data are needed to examine the changes and relationships among complexity over time.
Topics: Humans; Palliative Care; Prospective Studies; Hospice and Palliative Care Nursing; Qualitative Research; Spirituality
PubMed: 36226646
DOI: 10.21037/apm-22-623 -
Pain Research & Management 2021Palliative care is a multidisciplinary team-based care for patients facing life-threatening illness and their families which addresses their physical, psychological,... (Meta-Analysis)
Meta-Analysis
BACKGROUND
Palliative care is a multidisciplinary team-based care for patients facing life-threatening illness and their families which addresses their physical, psychological, social, and spiritual needs to improve the quality of care. There is a strategy for an increase in palliative care services by integrating with the healthcare system. Therefore, this systematic review and meta-analysis was aimed to assess the overall pooled prevalence of nurses' knowledge towards palliative care in Ethiopia.
METHOD
PubMed/MEDLINE, HINARI, EMBASE, Scopus, Google Scholar, and African Journals OnLine (AJOL) were the databases used to search for articles. Cochrane statistics and Egger's test were done to check heterogeneity and publication bias, respectively. Subgroup analysis by region, study period, and sample size was done due to the presence of heterogeneity. Sensitivity analysis was also done to detect the presence or absence of an influential study.
RESULT
Nine studies with a total of 2709 study participants were included in the final analysis. The overall pooled prevalence of nurses' knowledge towards palliative care was 45.57% (95% CI: 35.27-55.87). Educational status and palliative care training were significantly associated factors with the level of nurses' knowledge towards palliative care. B.S. degree holder nurses (AOR = 3.01; 95% CI: 1.50-6.02) and nurses who had palliative care training (AOR = 4.64; 95% CI: 2.37-9.08) were found to be significantly associated factors with the nurses' level of knowledge.
CONCLUSION
More than half of nurses had poor knowledge of palliative care. Educational status of nurses and palliative care training were significantly associated factors with the nurses' level of knowledge about palliative care. Therefore, palliative care training and improving nurses' careers through continuous professional development should be focused on regularly to improve nurses' knowledge about palliative care.
Topics: Clinical Competence; Ethiopia; Female; Health Knowledge, Attitudes, Practice; Humans; Male; Nurses; Palliative Care
PubMed: 33986898
DOI: 10.1155/2021/5557947