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Nurse Education in Practice May 2023To synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in... (Review)
Review
AIM
To synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in clinical settings BACKGROUND: Nurses are pivotal in caring for dying patients and families. It has been reported that nursing students feel unprepared in caring for dying patients and handling patient death. Understanding their experiences would better inform how palliative care education can be improved and how students can be better supported in clinical settings.
DESIGN
A qualitative systematic review and meta-synthesis METHODS: PubMed, Embase, CINAHL, PsycINFO, ProQuest and Google Scholar were searched for peer-reviewed articles and theses/dissertations published between 1 January 2012-25 Feb 2023. Qualitative studies of any design reporting nursing students' experiences of patient death, caring for patients under palliative care, at end-of-life, or with time-limiting diseases in clinical settings in English were included. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Data were synthesised using Sandelowski and Barroso's 2-step framework through a meta-summary using thematic analysis, which were then integrated into meta-syntheses using an event timeline.
RESULTS
The review included 71 studies from 26 countries (n = 1586 nursing students). The meta-summary contained 8 themes and 23 subthemes: (1) Communication experience with patients and families, (2) Satisfaction with care provided to patients and families, (3) Impact of the COVID-19 pandemic on death and dying, (4) Perceptions of death and dying, (5) Impact of death, (6) Nursing education on palliative end-of-life care, (7) Support systems and coping methods, (8) Learning outcomes. The meta-synthesis depicted nursing students' experiences before, during and after encountering dying patients, families and patient death. Suggestions for nursing faculty and clinical staff on how they could equip students with necessary skills and knowledge and support them in clinical settings were also provided.
CONCLUSIONS
While caring for dying patients and families was beneficial to nursing students' learning and professional development, they encountered many challenges. Governments, clinical and academic nursing leaders must prioritise the integration of palliative care content into the curricula across nursing schools in face of increasing palliative and end-of-life care needs in patients. Nursing schools should ensure that students are adequately prepared by designing culturally and socioeconomically relevant curricula, integrating theoretical and experiential learning and offering students a thorough understanding of palliative and end-of-life care. Clinical staff and nursing instructors should support students emotionally and guide them in patient care.
Topics: Humans; Students, Nursing; Pandemics; COVID-19; Terminal Care; Palliative Care; Death
PubMed: 37004470
DOI: 10.1016/j.nepr.2023.103625 -
Journal of Pain and Symptom Management May 2021Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness...
CONTEXT
Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.
OBJECTIVE
We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.
METHODS
We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.
RESULTS
We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.
CONCLUSION
SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.
Topics: Child; Hospice and Palliative Care Nursing; Humans; Neoplasms; Palliative Care; Quality of Life; Terminal Care
PubMed: 33348034
DOI: 10.1016/j.jpainsymman.2020.12.003 -
The Cochrane Database of Systematic... Sep 2021Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer, but for more than a decade, there have been calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia. This review is an updated version of a review first published in 2016.
OBJECTIVES
To assess the effect of palliative care interventions in advanced dementia.
SEARCH METHODS
We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialised Register on 7 October 2020. ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), four other databases and two trial registries on 7 October 2020 to ensure that the searches were as comprehensive and as up-to-date as possible.
SELECTION CRITERIA
We searched for randomised (RCTs) and non-randomised controlled trials (nRCTs), controlled before-and-after studies and interrupted time series studies evaluating the impact of palliative care interventions for adults with advanced dementia of any type. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies based on outcomes measured.
DATA COLLECTION AND ANALYSIS
At least two review authors (SW, EM, PC) independently assessed all potential studies identified in the search against the review inclusion criteria. Two authors independently extracted data from eligible studies. Where appropriate, we estimated pooled treatment effects in a fixed-effect meta-analysis. We assessed the risk of bias of included studies using the Cochrane Risk of Bias tool and the overall certainty of the evidence for each outcome using GRADE.
MAIN RESULTS
Nine studies (2122 participants) met the review inclusion criteria. Two studies were individually-randomised RCTs, six were cluster-randomised RCTs and one was a controlled before-and-after study. We conducted two separate comparisons: organisation and delivery of care interventions versus usual care (six studies, 1162 participants) and advance care planning interventions versus usual care (three studies, 960 participants). Two studies were carried out in acute hospitals and seven in nursing homes or long-term care facilities. For both comparisons, we found the included studies to be sufficiently similar to conduct meta-analyses. Changes to the organisation and delivery of care for people with advanced dementia may increase comfort in dying (MD 1.49, 95% CI 0.34 to 2.64; 5 studies, 335 participants; very low certainty evidence). However, the evidence is very uncertain and unlikely to be clinically significant. These changes may also increase the likelihood of having a palliative care plan in place (RR 5.84, 95% CI 1.37 to 25.02; 1 study, 99 participants; I = 0%; very low certainty evidence), but again the evidence is very uncertain. Such interventions probably have little effect on the use of non-palliative interventions (RR 1.11, 95% CI 0.71 to 1.72; 2 studies, 292 participants; I = 0%; moderate certainty evidence). They may also have little or no effect on documentation of advance directives (RR 1.46, 95% CI 0.50 to 4.25; 2 studies, 112 participants; I = 52%; very low certainty evidence), or whether discussions take place about advance care planning (RR 1.08, 95% CI 1.00 to 1.18; 1 study, 193 participants; I = 0%; very low certainty evidence) and goals of care (RR 2.36, 95% CI 1.00 to 5.54; 1 study, 13 participants; I = 0%; low certainty evidence). No included studies assessed adverse effects. Advance care planning interventions for people with advanced dementia probably increase the documentation of advance directives (RR 1.23, 95% CI 1.07 to 1.41; 2 studies, 384; moderate certainty evidence) and the number of discussions about goals of care (RR 1.33, 95% CI 1.11 to 1.59; 2 studies, 384 participants; moderate certainty evidence). They may also slightly increase concordance with goals of care (RR 1.39, 95% CI 1.08 to 1.79; 1 study, 63 participants; low certainty evidence). On the other hand, they may have little or no effect on perceived symptom management (MD -1.80, 95% CI -6.49 to 2.89; 1 study, 67 participants; very low certainty evidence) or whether advance care planning discussions occur (RR 1.04, 95% CI 0.87 to 1.24; 1 study, 67 participants; low certainty evidence).
AUTHORS' CONCLUSIONS
The evidence on palliative care interventions in advanced dementia is limited in quantity and certainty. When compared to usual care, changes to the organisation and delivery of care for people with advanced dementia may lead to improvements in comfort in dying, but the evidence for this was of very low certainty. Advance care planning interventions, compared to usual care, probably increase the documentation of advance directives and the occurrence of discussions about goals of care, and may also increase concordance with goals of care. We did not detect other effects. The uncertainty in the evidence across all outcomes in both comparisons is mainly driven by imprecision of effect estimates and risk of bias in the included studies.
Topics: Adult; Bias; Dementia; Family; Humans; Neurodegenerative Diseases; Palliative Care; Randomized Controlled Trials as Topic
PubMed: 34582034
DOI: 10.1002/14651858.CD011513.pub3 -
The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.Journal of Palliative Medicine Aug 2019The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Pediatric...
The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
Topics: Adolescent; Adult; Attitude of Health Personnel; Biomedical Research; Child; Child, Preschool; Family; Female; Health Personnel; Humans; Infant; Infant, Newborn; Male; Palliative Care; Pediatrics; Professional-Family Relations; Qualitative Research; Terminal Care
PubMed: 30835596
DOI: 10.1089/jpm.2018.0483 -
Journal of Palliative Medicine May 2021Depression can be quite common in the palliative care population. The estimated prevalence ranges from 24% to 70%. Depression in this population leads to a decreased...
Depression can be quite common in the palliative care population. The estimated prevalence ranges from 24% to 70%. Depression in this population leads to a decreased quality of life and may lead to a desire for an earlier death. We conducted a systematic review to establish a better understanding of the available treatment interventions, both pharmacological and nonpharmacological specific to the palliative population. PubMed, PsycINFO, and CINAHL databases were searched using the MeSH terms: Palliative Care, Palliative Medicine, Terminal Illness, End of Life Care, and Depression or Depressive Disorder, as well as the keywords palliative care, care palliative, and depression. We considered all published peer-reviewed articles written in English and pertaining to humans. Articles were hand searched from citations. The Mixed Methods Appraisal Tool was used for study quality appraisal. Thirty-nine eligible articles were found; 29 articles examined nonpharmacological options, while 10 focused on pharmacological options. The 29 articles discussing nonpharmacological methods discussed 22 interventions. Of the 22 interventions, 10 showed therapeutic benefit. Of the 10 studies focusing on pharmacological interventions, seven showed therapeutic benefit. This is the first systematic review that examined both nonpharmacological and pharmacological methods to treat depression in the palliative setting. There is evidence to indicate that methylphenidate and antidepressants can provide a therapeutic benefit for palliative care patients with depressive symptoms. This benefit may be enhanced when these medications are used in combination. The use of music therapy or future-focused psychotherapy may also be beneficial in the treatment of depression.
Topics: Depression; Hospice and Palliative Care Nursing; Humans; Music Therapy; Palliative Care; Quality of Life
PubMed: 33720758
DOI: 10.1089/jpm.2020.0659 -
BMC Oral Health Mar 2020High incidence of treatable oral conditions has been reported among palliative patients. However, a large proportion of palliative patients lose their ability to...
BACKGROUND
High incidence of treatable oral conditions has been reported among palliative patients. However, a large proportion of palliative patients lose their ability to communicate their sufferings. Therefore, it may lead to under-reporting of oral conditions among these patients. This review systematically synthesized the published evidence on the presence of oral conditions among palliative patients, the impact, management, and challenges in treating these conditions.
METHODS
An integrative review was undertaken with defined search strategy from five databases and manual search through key journals and reference list. Studies which focused on oral conditions of palliative patients and published between years 2000 to 2017 were included.
RESULTS
Xerostomia, oral candidiasis and dysphagia were the three most common oral conditions among palliative patients, followed by mucositis, orofacial pain, taste change and ulceration. We also found social and functional impact of having certain oral conditions among these patients. In terms of management, complementary therapies such as acupuncture has been used but not well explored. The lack of knowledge among healthcare providers also posed as a challenge in treating oral conditions among palliative patients.
CONCLUSIONS
This review is first in its kind to systematically synthesize the published evidence regarding the impact, management and challenges in managing oral conditions among palliative patients. Although there is still lack of study investigating palliative oral care among specific group of patients such as patients with dementia, geriatric or pediatric advanced cancer patients, this review has however provided baseline knowledge that may guide health care professionals in palliative settings.
Topics: Aged; Child; Humans; Mouth Diseases; Oral Health; Oral Ulcer; Palliative Care; Terminally Ill; Xerostomia
PubMed: 32188452
DOI: 10.1186/s12903-020-01075-w -
Nurse Education Today Dec 2022To synthesize nursing students' knowledge and attitudes about end-of-life care and to identify strategic directions for optimizing end-of-life care education. (Meta-Analysis)
Meta-Analysis Review
OBJECTIVES
To synthesize nursing students' knowledge and attitudes about end-of-life care and to identify strategic directions for optimizing end-of-life care education.
DESIGN
A meta-analysis of observational studies.
DATA SOURCES
PubMed, Web of Science, EMBASE, CINAHL, PsycINFO, MEDLINE, CNKI, and WANFANG 8 electronic databases in English and Chinese were systematically searched from inception until 10 April 2022.
REVIEW METHODS
Two reviewers independently screened literature and extracted data using structured tables. The Agency for Healthcare Research and Quality (AHRQ) was used to appraise the methodological quality of included studies. The study outcomes were synthesized using a meta-analysis.
RESULTS
26 cross-sectional studies of medium or high quality from 13 countries met the eligibility criteria, involving 9749 nursing students. In our review, nursing students demonstrated insufficient knowledge about end-of-life care, with a pooled mean score of 7.50 (95 % CI: 6.55-8.45); of these, knowledge about philosophy and principles, psychosocial and spiritual care, and pain and symptom management were all deficient, with pooled mean scores of 1.49 (95 % CI: 0.78-2.21), 1.00 (95 % CI: 0.35-1.65), and 3.44 (95 % CI: 2.25-4.63), respectively. Conversely, nursing students showed positive attitudes toward end-of-life care, with a pooled mean score of 102.97 (95 % CI: 99.43-106.51). The subgroup analysis revealed that male nursing students had lower pooled mean scores for end-of-life care knowledge and attitudes.
CONCLUSION
There is a mismatch between nursing students' knowledge and attitudes about end-of-life care, they have a positive attitude but lack the necessary knowledge. Male nursing students seem to have a greater deficit of knowledge and a relatively conservative attitude toward end-of-life care. These findings may provide a significant reference for nursing educators to adjust educational strategies promptly.
Topics: Male; Humans; Students, Nursing; Cross-Sectional Studies; Terminal Care; Palliative Care; Health Knowledge, Attitudes, Practice; Education, Nursing, Baccalaureate
PubMed: 36182790
DOI: 10.1016/j.nedt.2022.105570 -
Nutrients May 2021Nutritional management of patients under palliative care can lead to ethical issues, especially when Enteral Nutrition (EN) is prescribed by nasogastric tube (NGT). The...
Nutritional management of patients under palliative care can lead to ethical issues, especially when Enteral Nutrition (EN) is prescribed by nasogastric tube (NGT). The aim of this review is to know the current status in the management of EN by NG tube in patients under palliative care, and its effect in their wellbeing and quality of life. The following databases were used: PubMed, Web of Science (WOS), Scopus, Scielo, Embase and Medline. After inclusion and exclusion criteria were applied, as well as different qualities screening, a total of three entries were used, published between 2015 and 2020. In total, 403 articles were identified initially, from which three were selected for this review. The use of NGT caused fewer diarrhea episodes and more restrictions than the group that did not use NG tubes. Furthermore, the use of tubes increased attendances to the emergency department, although there was no contrast between NGT and PEG devices. No statistical difference was found between use of tubes (NGT and PEG) or no use, with respect to the treatment of symptoms, level of comfort, and satisfaction at the end of life. Nevertheless, it improved hospital survival compared with other procedures, and differences were found in hospital stays in relation to the use of other probes or devices. Finally, there are not enough quality studies to provide evidence on improving the health status and quality of life of the use of EN through NGT in patients receiving palliative care. For this reason, decision making in this field must be carried out individually, weighing the benefits and damages that they can cause in the quality of life of the patients.
Topics: Adult; Enteral Nutrition; Female; Humans; Intubation, Gastrointestinal; Length of Stay; Male; Palliative Care; Quality of Life; Treatment Outcome
PubMed: 34066386
DOI: 10.3390/nu13051562 -
BMC Palliative Care Apr 2020Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with... (Meta-Analysis)
Meta-Analysis
Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families.
BACKGROUND
Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families.
METHODS
A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.
RESULTS
Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs).
CONCLUSIONS
To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.
Topics: Family; Health Personnel; Humans; Neoplasms; Palliative Care; Patient Acceptance of Health Care; Patients; Qualitative Research
PubMed: 32284064
DOI: 10.1186/s12904-020-00556-7 -
BMJ Supportive & Palliative Care Sep 2020To examine the effects of nurse-led interventions on the health-related quality of life, symptom burden and self-management/behavioural outcomes in women with breast...
OBJECTIVES
To examine the effects of nurse-led interventions on the health-related quality of life, symptom burden and self-management/behavioural outcomes in women with breast cancer.
METHODS
Cochrane Controlled Register of Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and Embase databases were searched (January 1999 to May 2019) to identify randomised controlled trials (RCTs) and controlled before-and-after studies of interventions delivered by nurses with oncology experience for women with breast cancer. Risk of bias was evaluated using the . Intervention effects were synthesised by cancer trajectory using .
RESULTS
Thirty-one RCTs (4651 participants) were included. All studies were at risk of bias mainly due to inherent limitations such as lack of blinding and self-report data. Most studies (71%; n=22) reported at least one superior intervention effect. There were no differences in all outcomes between those who receive nurse-led care versus those who received physical led or usual discharge care. Compared with control interventions, there were superior (63%) and (100%) intervention effects on symptom burden during treatment and survivorship. Effects of these interventions on health-related quality of life and symptom self-management/behavioural outcomes were inconsistent.
DISCUSSION
There is consistent evidence from RCTs that nurse-led interventions are as safe and effective as physician-led care and strong evidence that nurse-led and interventions are effective for symptom management. Future studies should ensure the incorporation of health-related quality of life and self-management/behavioural outcomes and consider well-designed attentional placebo controls to blind participants for self-report outcomes.
PROTOCOL REGISTRATION
The International Prospective Register of Systematic Reviews (PROSPERO): CRD42020134914).
Topics: Breast Neoplasms; Disease Management; Female; Hospice and Palliative Care Nursing; Humans; Palliative Care; Practice Patterns, Nurses'; Quality of Life; Randomized Controlled Trials as Topic; Treatment Outcome
PubMed: 32499405
DOI: 10.1136/bmjspcare-2019-002120