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Journal of Pain and Symptom Management Feb 2022While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for...
BACKGROUND
While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This research focuses on the safety and feasibility of a home transfusion program.
METHODS
This is a case series of patients between 0 and 18 years diagnosed with advanced malignancy or incurable chronic conditions and eligible to Pediatric Palliative Care who received home platelet or packed red cell transfusions. For all patients, we recorded adverse events such as acute hemolytic reactions, allergic reactions, or any emergency condition requiring hospital admission, equipment failure, blood product transport or storage errors, errors in patient identification, and personnel safety issues. We explored parental satisfaction with a Likert-type questionnaire and short open questions.
RESULTS
We reviewed 101 transfusion procedures for six patients in Pediatric Palliative Care performed by the Regional Pediatric Palliative Care network between 2014 and 2020. We did not report any adverse effects. Families reported satisfaction and a sense of safety and positively evaluated the opportunity of having transfusion at home to minimize the disruption in everyday life. The cost analysis resulted in a consistent saving for the Regional Health System.
CONCLUSION
This study supports the safety and feasibility of home transfusion in Pediatric Palliative Care.
Topics: Blood Transfusion; Child; Feasibility Studies; Home Care Services; Hospice and Palliative Care Nursing; Humans; Neoplasms; Palliative Care
PubMed: 34619325
DOI: 10.1016/j.jpainsymman.2021.09.018 -
CMAJ : Canadian Medical Association... Dec 2019
Topics: Adolescent; Cooking; Family; Female; Humans; Intensive Care Units, Pediatric; Multiple Organ Failure; Palliative Care
PubMed: 31844023
DOI: 10.1503/cmaj.190464 -
Palliative Medicine Jan 2022Coping is essential to manage palliative care professionals' challenges. The focus has been on the effects of coping mechanism; however, little is known about coping... (Review)
Review
BACKGROUND
Coping is essential to manage palliative care professionals' challenges. The focus has been on the effects of coping mechanism; however, little is known about coping itself in palliative care.
AIM
To synthesise evidence of coping strategies in palliative care professionals, and how different strategies play roles over time.
DESIGN
Systematically conducted integrative review.
DATA SOURCES
PubMed; CINAHL; Medline; PsycINFO and B-ON were searched (1996-2021) combining 'coping' AND 'palliative care'. A predefined data extraction sheet was developed to report data. Two researchers performed constant comparative analysis using Nvivo.
RESULTS
Thirty-one studies were included. Four main strategies with recurrent reference to time were found: (a) proactive coping, involving activities to achieve self-confidence and control situations and emotions; (b) self-care based coping, including self-protection and self-awareness activities, with behavioural disconnection; (c) self-transformation coping, involving activities to accept limits; and (d) encountering deep professional meaning, is a coping mechanism based on meaning, frequently considering the deepest meaning of work. The dynamic and influencing factors were training, team interaction, professional motivation and family. They were usually protective factors, though sometimes they represented risk factors. The emotional burden associated with healthcare and systemic stressors were always risk factors. An explanatory model describes a complex and dynamic process, in which everyday strategies and more introspective strategies are combined.
CONCLUSIONS
The model showed a process of adaptation and learning to persevere in palliative care. It changes over time under factors and strategies, and evolves in a personal and professional transformation, parallel to the working life. It would be worth assessing coping in healthcare professionals who chose to leave palliative care and to investigate the reasons they did so and their coping mechanisms.
Topics: Adaptation, Psychological; Education, Continuing; Health Personnel; Humans; Palliative Care
PubMed: 34554042
DOI: 10.1177/02692163211047149 -
Journal of Palliative Medicine Oct 2022Integrating palliative care services in the home health care (HHC) setting is an important strategy to provide care for seriously ill adults and improve symptom burden,... (Review)
Review
Integrating palliative care services in the home health care (HHC) setting is an important strategy to provide care for seriously ill adults and improve symptom burden, quality of life, and caregiver burden. Routine palliative care in HHC is only possible if clinicians who provide this care are prepared and patients and caregivers are well equipped with the knowledge to receive this care. A key first step in integrating palliative care services within HHC is to measure preparedness of clinicians and readiness of patients and caregivers to receive it. The objective of this systematic review was to review existing literature related to the measurement of palliative care-related knowledge, attitudes, and confidence among HHC clinicians, patients, and caregivers. We searched PubMed, CINAHL, Web of Science, and Cochrane for relevant articles between 2000 and 2021. Articles were included in the final analysis if they (1) reported specifically on palliative care knowledge, attitudes, or confidence, (2) presented measurement tools, instruments, scales, or questionnaires, (3) were conducted in the HHC setting, (4) and included HHC clinicians, patients, or caregivers. Seventeen articles were included. While knowledge, attitudes, and confidence have been studied in HHC clinicians, patients, and caregivers, results varied significantly across countries and health care systems. No study captured knowledge, attitudes, and confidence of the full HHC workforce; notably, home health aides were not included in the studies. Existing instruments did not comprehensively contain elements of the eight domains of palliative care outlined by the National Consensus Project (NCP) for Quality Palliative Care. A comprehensive psychometrically tested instrument to measure palliative care-related knowledge, attitudes, and confidence in the HHC setting is needed.
Topics: Adult; Caregivers; Health Knowledge, Attitudes, Practice; Home Care Services; Humans; Palliative Care; Quality of Life
PubMed: 35704053
DOI: 10.1089/jpm.2021.0580 -
Journal of Religion and Health Apr 2022Israel is one of the few countries worldwide with a national policy and defined standards of palliative care (PC); its culture is highly diverse and more traditionally...
Israel is one of the few countries worldwide with a national policy and defined standards of palliative care (PC); its culture is highly diverse and more traditionally oriented in comparison with Western countries. This study describes the current state of PC in Israel through examination of: (1) its current status, self-image and structural factors; (2) its relation to cultural and political characteristics; and (3) the chances, goals and obstacles of advancing PC in Israel. Face-to-face interviews were conducted at all five public medical faculties in Israel from November 2017 to February 2018. The following findings are reported: (1) definition of palliative care, (2) multidisciplinary approach, (3) special role of nurses, (4) personal perceptions of death, (5) understanding the role of medicine, (6) specialty palliative medicine, (7) religious, spiritual and cultural aspects, (8) political and economic aspects, (9) obstacles and weaknesses, and (10) prospects and goals of palliative care. Participants perceive PC as an integrative healthcare service that should be available to all patients, including children and their families, at any stage of illness. They internalize that PC principles apply regardless of ethnic, cultural, and religious background. Utilizing nurses' leadership, enhancing multidisciplinary teamwork, and person-centered approach, supports better PC to more people.
Topics: Child; Delivery of Health Care; Faculty, Medical; Humans; Israel; Palliative Care; Self Concept; Spirituality
PubMed: 35262816
DOI: 10.1007/s10943-022-01522-8 -
Journal of Pain and Symptom Management Mar 2022Palliative care (PC) research has grown over the last 20 years. Yet, the causal components and pathways of PC interventions remain unclear. (Review)
Review
CONTEXT
Palliative care (PC) research has grown over the last 20 years. Yet, the causal components and pathways of PC interventions remain unclear.
OBJECTIVES
To document the prevalence and application of theoretical frameworks in developing and testing PC interventions.
METHODS
We conducted a secondary analysis of previously published systematic reviews of PC randomized clinical trials. Trials were evaluated for explicit mention of a theoretical framework, process or delivery model, or clinical practice guideline that supported the development of the intervention. We used a structured data extraction form to document study population, outcomes, and whether and how authors used a theoretical framework, process/delivery model, or clinical practice guideline. We applied an adapted coding scheme to evaluate use of theoretical frameworks.
RESULTS
We reviewed 85 PC trials conducted between 1984 and 2021. Thirty-eight percent (n = 32) of trials explicitly mentioned a theoretical framework, process or delivery model, or clinical practice guideline as a foundation for the intervention design. Only nine trials included a theoretical framework, while the remaining 23 cited a process/delivery model or clinical practice guideline.
CONCLUSION
Most PC trials do not cite a theoretical foundation for their intervention design. Future work should focus on developing and validating new theoretical frameworks and modifying existing theories and models to better explain the mechanisms of the variety of PC interventions.
Topics: Hospice and Palliative Care Nursing; Humans; Models, Theoretical; Palliative Care; Practice Guidelines as Topic; Process Assessment, Health Care; Randomized Controlled Trials as Topic; Systematic Reviews as Topic
PubMed: 34756957
DOI: 10.1016/j.jpainsymman.2021.10.011 -
Japanese Journal of Clinical Oncology Apr 2021While several small groups in Japan have attempted to conduct prospective studies in the field of supportive and palliative care, development of exploratory research...
BACKGROUND
While several small groups in Japan have attempted to conduct prospective studies in the field of supportive and palliative care, development of exploratory research into multicentre confirmatory studies has been difficult. The main reason for this is the difference in clinical research methodology in supportive and palliative care compared with medical oncology in terms of the style of multidisciplinary approaches, study design and endpoints. Here, we establish a new research policy for cancer supportive and palliative care in Japan.
METHODS
The first draft was developed by a policy working group within the Japanese Supportive, Palliative and Psychosocial Care Study Group. A provisional draft was subsequently developed after review by nine Japanese scientific societies (Japanese Association of Supportive Care in Cancer, Japanese Society of Medical Oncology, Japanese Society of Clinical Oncology, Japanese Society of Palliative Medicine, Japanese Society of Cancer Nursing, Japanese Society of Pharmaceutical Oncology (JASPO), Japan Cancer Association (JCA), Japanese Society of Therapeutic Radiation Oncology and Japanese Cancer Association) and receipt of public comments. The final research policy in the area of supportive and palliative care in Japan (Ver1.0) was completed in December 2018 and underwent its first revision (Ver1.1) in February, 2020.
RESULTS
The policy includes the following components of clinical research: (i) objective of the research policy in the areas of supportive and palliative care; (ii) definitions of supportive care and palliative care; (iii) characteristics of supportive and palliative care research; (iv) target population for research; (v) research design; (vi) endpoints and assessment measures; (vii) handling of the deaths of subjects and (viii) operational structure and quality management.
CONCLUSIONS
We hope that studies conducted according to this policy will play important roles in the future development of the supportive and palliative field.
Topics: Endpoint Determination; Humans; Japan; Neoplasms; Palliative Care; Policy; Prospective Studies; Research; Survival Analysis
PubMed: 33561254
DOI: 10.1093/jjco/hyab008 -
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 -
Journal of Pain and Symptom Management Jan 2022Interest in implementing palliative care for adults living with progressive central nervous system diseases (PCNSD) and their caregivers is increasing. (Review)
Review
CONTEXT
Interest in implementing palliative care for adults living with progressive central nervous system diseases (PCNSD) and their caregivers is increasing.
OBJECTIVES
To inform evidence-based practice and future research by critically evaluating randomized clinical trials (RCTs) investigating palliative care interventions (PCIs) for adults living with PCNSD and their caregivers using self-reported outcomes and the patient- and caregiver-reported outcome measures employed.
METHODS
A systematic search using PRISMA methods of EMBASE, PubMed, Scopus, Web of Science databases using index and keyword methods for articles published from inception through February 28, 2021 was performed. RCTs investigating PCI as their primary aim using patient- and/or caregiver-reported outcomes to assess PCI effectiveness in adults living with PCNSD and their caregivers were included for qualitative synthesis.
RESULTS
Five RCTs met criteria and used 21 unique outcome measures. Pooled patient diagnoses included multiple sclerosis, motor neuron disease and movement disorders, primarily Parkinson's Disease. All five RCTs assessed PCI effectiveness on patient symptom burden and caregiver burden, and three RCTs used patient QOL as a primary outcome. Overall risk of bias was low. Pooled positive findings were limited to very modest changes in patient QOL, specific physical symptoms and caregiver burden. Most outcome measures lacked clinimetric responsiveness to detect change whether caused by disease or an intervention to the patient or caregiver.
CONCLUSION
Sparse, low-certainty evidence for PCI impact on patient QOL, symptom burden and caregiver burden indicate future research should consider refining study populations, interventions, outcomes assessed and outcome measures to detect any change due to PCI.
Topics: Adult; Caregivers; Central Nervous System Diseases; Hospice and Palliative Care Nursing; Humans; Palliative Care
PubMed: 34147576
DOI: 10.1016/j.jpainsymman.2021.06.010 -
American Society of Clinical Oncology... Jun 2024Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including... (Review)
Review
Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including improved quality of life, reduced physical and psychological symptom burden, enhanced prognostic awareness, and reduced health care utilization at the end of life. Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. More research is needed to identify mechanisms to distribute palliative care optimally and equitably. Simultaneously, the transformation of the oncology treatment landscape has led to shifts in the supportive care needs of patients and caregivers, who may experience longer, uncertain trajectories of cancer. Now, palliative care also plays a clear role in the care of patients with hematologic malignancies and may be beneficial for patients undergoing phase I clinical trials and their caregivers. Further research and clinical guidance regarding how to balance the risks and benefits of opioid therapy and safely manage cancer-related pain across this wide range of settings are urgently needed. The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.
Topics: Humans; Palliative Care; Neoplasms; Precision Medicine; Quality of Life
PubMed: 38815187
DOI: 10.1200/EDBK_100038