Research Cooperative Groups in Pediatric Palliative Care Research.
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ABSTRACT:
SUBMITTER: Akard TF
PROVIDER: S-EPMC8241338 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.
| S-EPMC5532395 | biostudies-other
Project description:Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
| S-EPMC5915160 | biostudies-literature
Project description:The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.
| S-EPMC5198905 | biostudies-literature
Project description:ImportancePediatric palliative care (PPC) is an interdisciplinary collaboration that focuses on the prevention and relief of patient suffering. PPC has emerged as a critical field of medical expertise and practice. However, no information is available regarding the progress of PPC in the Chinese mainland.ObjectiveThis study investigated the geographic distribution, team structure, and services of PPC teams in the Chinese mainland. It also investigated the level of understanding and implementation among pediatric oncologists regarding PPC.MethodsThe PPC subspecialty group of the Pediatrics Society of the Chinese Medical Association included 45 PPC teams. The team structure and services were investigated using questionnaires mailed to the team leader of each PPC team. In addition, we sent questionnaires regarding the level of PPC understanding and implementation of PPC practices to 170 pediatric oncologists in 11 hospitals.ResultsThe geographical distribution of PPC teams is uneven in China. Most PPC teams are concentrated in the eastern provincial capital of China. Most PPC teams had limited staff and services. The level of PPC understanding was considerably limited across all demographics; most pediatric oncologists reported "some understanding" (n = 71, 41.8%) or "poor understanding" (n = 50, 29.4%). Only 62.9% of pediatric oncologists had experience providing advice to family members regarding PPC matters.InterpretationChina is currently experiencing a critical shortage of PPC resources. Most pediatric oncologists had a limited understanding of PPC and reported limited practical implementation of PPC, which leads to underutilization of PPC resources.
| S-EPMC8666946 | biostudies-literature
Project description:BACKGROUND:Activity participation may support clients in palliative care to maintain dignity and quality of life. Literature and policy documents state that occupational therapists should be part of the team in palliative care but provide limited guidance on how interventions should be employed. Thus, the aim was to describe occupational therapists' experiences of enabling activity for seriously ill and dying clients. METHODS:In a descriptive, qualitative study, three focus groups with occupational therapists (n?=?14) were conducted. The data were analysed using qualitative content analysis. RESULTS:The findings showed that occupational therapists enabled activity in clients in palliative care while considering the client's individual preferences. Motivation was seen to facilitate activity, while environmental restrictions were thought to act as barriers. The occupational therapists wanted to bring activities physically closer to the clients and felt a need for more client contact to enable activity. CONCLUSIONS:Occupational therapists' interventions in palliative care include prioritizing and planning activities according to clients' preferences and capacities. The individual nature of these activities makes it impossible to create standardized protocol for interventions, but the study results can be used to describe occupational therapists' strategies and to guide their work, especially for occupational therapists without experience in palliative care.
| S-EPMC6367774 | biostudies-literature
Project description:Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.
| S-EPMC8393700 | biostudies-literature
Project description:ContextSpecialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed.ObjectiveThe objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes.MethodsWe performed a Systematic Review following Cochrane methods.Data sourcesMedline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018.Study selection/data extractionWe included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria.ResultsTwenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency.ConclusionReceiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed.
| S-EPMC6989377 | biostudies-literature
Project description:Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared to other regions of the world. A crucial step in developing pediatric palliative care (PPC) programs is delineating quality indicators; however, no consensus has been reached on the outcomes or how to measure the impact of PPC. Additionally, Latin America has unique sociocultural characteristics that impact the perception, acceptance, enrollment and implementation of palliative care services. To date, no defined set of quality indicators has been proposed for the region. This article explores the limitations of current available quality indicators and describes the Latin American context and how it affects PPC development. This information can help guide the creation of standards of care and quality indicators that meet local PPC needs while considering the sociocultural landscape of Latin America and its population.
| S-EPMC8004984 | biostudies-literature
Project description:ContextMost children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation.ObjectivesDescription of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics.MethodsFunded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children.ResultsThe curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions.ConclusionEPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
| S-EPMC6754756 | biostudies-literature
Project description:Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care Modules (CCMs) address pediatric palliative care (PPC) topics of breaking bad news, dyspnea, anxiety, pain management, and the dying child. We also evaluated a scoring system and gathered qualitative data. Methods. The CCMs are part of the University of California San Diego pediatric residency's second-year curriculum. Comparisons were made for statistical trends between residents exposed to the modules (n = 15) and those not exposed (n = 4). Results. Nineteen of 36 residents (52%) completed surveys to self-rate their preparedness, knowledge, and confidence about PPC before and after the intervention. Resident scores increased in all areas. All improvements reached statistical significance except confidence when breaking bad news. Overall, the resident feedback about the CCMs was positive. Conclusions. This study demonstrates that the CCMs can be performed effectively in an academic setting and can benefit residents' self-perception of preparedness, confidence, and knowledge about pediatric palliative care. In the future, we plan to implement the modules on a larger scale. We encourage their use in interprofessional settings and across institutions.
| S-EPMC5329665 | biostudies-literature