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Palliative Medicine Sep 2017The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. (Review)
Review
BACKGROUND
The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care.
AIM
To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care.
DESIGN
A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE.
DATA SOURCES
Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting.
RESULTS
A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'.
CONCLUSION
Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.
Topics: Decision Making; Delphi Technique; Evidence-Based Practice; Humans; Palliative Care
PubMed: 28190381
DOI: 10.1177/0269216317690685 -
Journal of Pain and Symptom Management Nov 2018The aim of palliative care is to improve quality of life for patients with serious illnesses by treating their symptoms and adverse effects. Hospice care also aims for...
CONTEXT
The aim of palliative care is to improve quality of life for patients with serious illnesses by treating their symptoms and adverse effects. Hospice care also aims for this for patients with a life expectancy of six months or less. When conventional therapies do not provide adequate symptom management or produce their own adverse effects, patients, families, and caregivers may prefer complementary or alternative approaches in their care.
OBJECTIVES
The objectives of this study were to evaluate the available evidence on the use of complementary or alternative medicine (CAM) in hospice and palliative care and to summarize their potential benefits.
METHODS
A defined search strategy was used in reviewing literature from major databases. Searches were conducted using base terms and the symptom in question. Symptoms included anxiety, pain, dyspnea, cough, fatigue, insomnia, nausea, and vomiting. Studies were selected for further evaluation based on relevancy and study type. References of systematic reviews were also assessed. After evaluation using quality assessment tools, findings were summarized and the review was structured based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
RESULTS
Out of 4682 studies, 17 were identified for further evaluation. Therapies included acupressure, acupuncture, aromatherapy massage, breathing, hypnotherapy, massage, meditation, music therapy, reflexology, and reiki. Many studies demonstrated a short-term benefit in symptom improvement from baseline with CAM, although a significant benefit was not found between groups.
CONCLUSION
CAM may provide a limited short-term benefit in patients with symptom burden. Additional studies are needed to clarify the potential value of CAM in the hospice or palliative setting.
Topics: Complementary Therapies; Hospice Care; Humans; Palliative Care
PubMed: 30076965
DOI: 10.1016/j.jpainsymman.2018.07.016 -
Journal of Medical Internet Research Mar 2023Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has... (Review)
Review
BACKGROUND
Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth in home-based palliative care.
OBJECTIVE
In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients' use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients.
METHODS
This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis.
RESULTS
This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth.
CONCLUSIONS
The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.
Topics: Humans; Palliative Care; Telemedicine; Health Personnel; Home Care Services; Ethnicity
PubMed: 36912876
DOI: 10.2196/43684 -
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 -
The American Journal of Hospice &... Aug 2018To present the findings of a systematic review on the use of simulation-based learning experiences (SBLEs) to teach communication skills to nursing students and... (Review)
Review
OBJECTIVES
To present the findings of a systematic review on the use of simulation-based learning experiences (SBLEs) to teach communication skills to nursing students and clinicians who provide palliative and end-of-life care to patients and their families.
BACKGROUND
Palliative care communication skills are fundamental to providing holistic patient care. Since nurses have the greatest amount of direct exposure to patients, building such communication competencies is essential. However, exposure to patients and families receiving palliative and end-of-life care is often limited, resulting in few opportunities to learn these skills in the clinical setting. Simulation-based learning experiences can be used to supplement didactic teaching and clinical experiences to build the requisite communication skills.
METHODS
Searches of CINAHL, MEDLINE, PsychINFO, ERIC, and Web of Science electronic databases and Grey Literature returned 442 unique records. Thirty articles met the established criteria, including the SBLE must contain a nursing role.
RESULTS
Simulation-based learning experience are being used to teach palliative and end-of-life communication skills to nursing students and clinicians. Lack of standardization, poor evaluation methods, and limited exposure to the entire interprofessional team makes it difficult to identify and disseminate validated best practices.
CONCLUSION
While the need for further research is acknowledged, we recommend this evidence be augmented by training programs that utilize SBLEs through (1) applying standards, (2) clearly specifying goals and objectives, (3) integrating externally validated scenarios, and (4) employing rigorous evaluation methods and measures that link the SBLE to the training objectives and desired clinician practice behaviors and patient outcomes.
Topics: Clinical Competence; Communication; Education, Nursing; Formative Feedback; Humans; Nurse's Role; Palliative Care; Simulation Training; Terminal Care
PubMed: 29514480
DOI: 10.1177/1049909118761386 -
BMJ (Clinical Research Ed.) Jul 2017To assess the effect of specialist palliative care on quality of life and additional outcomes relevant to patients in those with advanced illness. Systematic review... (Meta-Analysis)
Meta-Analysis Review
Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis.
To assess the effect of specialist palliative care on quality of life and additional outcomes relevant to patients in those with advanced illness. Systematic review with meta-analysis. Medline, Embase, Cochrane Central Register of Controlled Trials, PsycINFO, and trial registers searched up to July 2016. Randomised controlled trials with adult inpatients or outpatients treated in hospital, hospice, or community settings with any advanced illness. Minimum requirements for specialist palliative care included the multiprofessional team approach. Two reviewers independently screened and extracted data, assessed the risk of bias (Cochrane risk of bias tool), and evaluated the quality of evidence (GRADE tool). Primary outcome was quality of life with Hedges' g as standardised mean difference (SMD) and random effects model in meta-analysis. In addition, the pooled SMDs of the analyses of quality of life were re-expressed on the global health/QoL scale (item 29 and 30, respectively) of the European Organization for Research and Treatment of Cancer QLQ-C30 (0-100, high values=good quality of life, minimal clinically important difference 8.1). Of 3967 publications, 12 were included (10 randomised controlled trials with 2454 patients randomised, of whom 72% (n=1766) had cancer). In no trial was integration of specialist palliative care triggered according to patients' needs as identified by screening. Overall, there was a small effect in favour of specialist palliative care (SMD 0.16, 95% confidence interval 0.01 to 0.31; QLQ-C30 global health/QoL 4.1, 0.3 to 8.2; n=1218, six trials). Sensitivity analysis showed an SMD of 0.57 (-0.02 to 1.15; global health/QoL 14.6, -0.5 to 29.4; n=1385, seven trials). The effect was marginally larger for patients with cancer (0.20, 0.01 to 0.38; global health/QoL 5.1, 0.3 to 9.7; n=828, five trials) and especially for those who received specialist palliative care early (0.33, 0.05 to 0.61, global health/QoL 8.5, 1.3 to 15.6; n=388, two trials). The results for pain and other secondary outcomes were inconclusive. Some methodological problems (such as lack of blinding) reduced the strength of the evidence. Specialist palliative care was associated with a small effect on QoL and might have most pronounced effects for patients with cancer who received such care early. It could be most effective if it is provided early and if it identifies though screening those patients with unmet needs. PROSPERO CRD42015020674.
Topics: Adult; Caregivers; Decision Making; Hospices; Humans; Outcome Assessment, Health Care; Palliative Care; Quality of Life; Randomized Controlled Trials as Topic; Terminally Ill
PubMed: 28676557
DOI: 10.1136/bmj.j2925 -
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 -
Cancer Medicine Jan 2019Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC... (Review)
Review
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.
Topics: Child; Humans; Medical Oncology; Neoplasms; Palliative Care; Pediatrics
PubMed: 30525302
DOI: 10.1002/cam4.1907 -
The Cochrane Database of Systematic... Jun 2013Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies,... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world.
OBJECTIVES
1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness.
SEARCH METHODS
We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data.
SELECTION CRITERIA
We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both.
DATA COLLECTION AND ANALYSIS
One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home).
MAIN RESULTS
We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi(2) = 20.57, degrees of freedom (df) = 6, P value = 0.002; I(2) = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive.
AUTHORS' CONCLUSIONS
The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.
Topics: Adult; Attitude to Death; Caregivers; Cost-Benefit Analysis; Critical Illness; Female; Home Care Services; Humans; Male; Palliative Care; Patient Preference; Randomized Controlled Trials as Topic; Treatment Outcome
PubMed: 23744578
DOI: 10.1002/14651858.CD007760.pub2 -
Journal of Clinical Nursing Jan 2018To explore how nurses, across various health systems, describe their role in providing palliative care for patients with life-threatening illnesses. (Meta-Analysis)
Meta-Analysis Review
AIMS AND OBJECTIVES
To explore how nurses, across various health systems, describe their role in providing palliative care for patients with life-threatening illnesses.
BACKGROUND
Despite the fact that nurses make up the largest group of healthcare professionals, little is known about their role in palliative care, across health services.
DESIGN
A qualitative systematic review of studies.
METHODS
A search was made for relevant articles, published between January 2000-June 2016. Twenty-eight articles were selected and analysed using thematic synthesis.
RESULTS
The themes that emerged from the analysis were as follows: Being available, which gave nurses a pivotal role in palliative care and paved the way for Being a coordinator of care for patients and relatives, as well as for other health personnel. Doing what's needed was to handle an enormous breadth of activities, always in a holistic framework of understanding. Being attentively present and dedicated as well as using flexible and nontraditional methods was essential in the role. Standing in demanding situations dealt with lack of time and resources, limited legitimacy, handling ethical dilemmas and being in need of support and knowledge.
CONCLUSION
Being available as well as a coordinator characterises the nurse's role across healthcare systems. The nurse acts as a link between different levels of health care, between different professions and between patient and family, which contribute to ensuring the quality of care to the individual patient. The review illuminates that the basic tenets of care in nursing are also fundamental to the nurse's role in palliative care. To be able to give individually tailored palliative care to patients with life-threatening illnesses and their relatives, the nurses need all their knowledge of basic nursing. Situations challenge nurses in practical, relational and moral dimensions of care and make demands on their role in a comprehensive way.
RELEVANCE TO CLINICAL PRACTICE
Nurses need knowledge and training, guidance and support to fulfil their role.
Topics: Adult; Attitude of Health Personnel; Female; Humans; Male; Middle Aged; Nurse's Role; Nursing Staff; Palliative Care; Qualitative Research
PubMed: 28695651
DOI: 10.1111/jocn.13912