Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study
children; young adult; epidemiology; mortality; palliative care
Objective To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital. Design Observational cohort study using linked routinely collected data. Setting England. Patients Children aged 0–25 years who died between 2003 and 2017. Main outcome measures Place of death: hospital, hospice, home. Multivariable multinomial logistic regression models. Results 39 349 children died: 73% occurred in hospital, 6% in hospice and 16% at home. In the multivariable models compared with dying in a hospital: neonates were less likely, and those aged 1–10 years more likely, than those aged 28 days to <1 year to die in hospice. Children from all ethnic minority groups were significantly less likely to die in hospice, as were those in the most deprived group (RR 0.8, 95% CI 0.7 to 0.9). Those who died from 2008 were more likely than those who died earlier to die in a hospice.Children with cancer (RR 4.4, 95% CI 3.8 to 5.1), neurological (RR 2.0, 95% CI 1.7 to 2.3) or metabolic (RR 3.7, 95% CI 3.0 to 4.6) diagnoses were more likely than those with a congenital diagnosis to die in a hospice.Similar patterns were seen for clinical/demographic factors associated with home versus hospital deaths. Conclusions Most children with a life-limiting condition continue to die in the hospital setting. Further research on preferences for place of death is needed especially in children with conditions other than cancer. Paediatric palliative care services should be funded adequately to enable equal access across all settings, diagnostic groups and geographical regions.
Gibson-Smith D; Jarvis SW; Fraser LK
Archives of Disease in Childhood
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2020-319700" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-319700</a>
Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period
palliative care; symptom management; life-limiting condition; perinatal palliative care; Comfort care; medications
INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that includes the standardized management of end-of-life symptoms that are anticipated around the time of birth. AREAS COVERED: A need was identified to develop medication orders for the initial pharmacological management of symptoms at end-of-life for infants with life-limiting conditions intended for use outside of an intensive care setting. The choice of medications was based on a review of the literature, discussion with content experts and guided by their ease of use, accessibility and noninvasive route of delivery. The recommendations can be used as a guide for the initial management of common symptoms encountered in perinatal palliative care. EXPERT OPINION: There are studies looking at many qualitative aspects of perinatal palliative care including perceptions of care, decision-making, and bereavement; however, few specifically focus on symptom management in the delivery room and postpartum ward settings. There is a need for standardization of the medical management of infants born with life-limiting conditions whose parents choose to pursue palliative care.
Veldhuijzen van Zanten S; Ferretti E; MacLean G; Daboval T; Lauzon L; Reuvers E; Vadeboncoeur C
Expert Opinion on Pharmacotherapy
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">10.1080/14656566.2021.1965574</a>
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
Attitude to Health; Decision Making; Fetal Viability; Financial Stress; Parents; periviable delivery; Pilot Projects; Pregnancy; Premature Birth; Qualitative Research; Quality of Life; Religion; Resuscitation Orders; Second Trimester Pregnancy; shared decision making; Social Support; values clarification
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
Tucker EB; Hoffman SM; Laitano T; Bhamidipalli SS; Jeffries E; Fadel W; Kavanaugh K
Paediatric and Perinatal Epidemiology
2020
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<a href="http://doi.org/10.1111/ppe.12590" target="_blank" rel="noreferrer noopener">10.1111/ppe.12590</a>
Potential Heart, Liver, and Kidney Donation after Circulatory Determination of Death in a Neonatal Intensive Care Unit
Donation after circulatory determination death; Neonatal end-of-life care; Neonatal organ donation; Potential organ donor
BACKGROUND: Pediatric organ donation after circulatory determination of death (DCD) has increased in recent years; however, there are few data reporting the number of neonatal potential DCD organ donors and no Canadian-specific reports. OBJECTIVE: The main objective of this study was to estimate the number of patients who may have become actual DCD organ donors from a single, tertiary neonatal intensive care unit (NICU) over 5 years. METHODS: We reviewed all medical charts of newborns ≥2.5 kg, who died in our center's NICU from January 2013 to December 2017. We determined how many could have become actual organ donors after brain death (DBD) or DCD based on 3 sets of organ-specific eligibility criteria defined as conservative, standard, and liberal. RESULTS: Of the 39 deceased patients, none met the criteria for DBD. Twenty-nine (75%) died after the withdrawal of life-sustaining therapies. According to the conservative criteria, 1 patient would have been eligible for kidneys and liver donation. Three patients met standard criteria for kidneys and 1 for liver. Eight patients would have been eligible donors for kidneys, 7 for liver, and 2 for heart according to liberal criteria. Only 2 patients were evaluated for DCD, and no organ donation was performed. CONCLUSIONS: While uncommon, we identified potential DCD organ donors in the NICU population for kidney, heart, and liver transplants. The substantial variability in the number of potential donors depending on the selected eligibility criteria emphasizes the need for a standardized definition adapted to local capacities.
Trottier A; Maitre G; Hébert A; Weiss MJ
Neonatology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1159/000517660" target="_blank" rel="noreferrer noopener">10.1159/000517660</a>
Discharge Communication Practices for Children With Medical Complexity: A Retrospective Chart Review
Attitude of Health Personnel; Child; Communication; Hospitalists; Patient Discharge; Retrospective Studies
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and general pediatric patients. There is a lack of evidence surrounding hospitalist communication practices at discharge for CMC. In this study, we explore hospitalist-to-PCP communication for CMC at hospital discharge. METHODS: A retrospective chart review was performed at a single tertiary care children's hospital. The population included patients with ≥1 complex chronic condition who were discharged from the pediatric hospitalist team. The presence, type, and quality of discharge communication were collected. A descriptive analysis in which we used χ(2), t test, Wilcoxon rank testing, and odds ratios was conducted to identify differences in communication practices in CMC. RESULTS: We identified 368 eligible patients and reviewed their electronic medical records. Discharge communication was documented for 59% of patient encounters. Communication was less likely to occur for patients with technology dependence (P = .01), older patients (P = .02), and those who were admitted to a teaching service (P = .04). The quality of discharge summaries did not change for patients with technology dependence compared with patients without technology dependence. CONCLUSIONS: Communication with the PCP at discharge was less likely to be documented in children with technology dependence. Hospitalists may encounter barriers in completion of appropriate and timely discharge communication with PCPs for CMC. Consistent handoff processes could be used to improve care for our patients with enhanced coordination needs.
Rush M; Herrera N; Melwani A
Hospital Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/hpeds.2020-0021" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0021</a>
Perinatal palliative care: a dedicated care pathway
Child; Hospice and Palliative Care Nursing; Hospice Care; Infant; life-limiting diseases; life-threatening diseases; neonatal mortality; neonatal pain management; Newborn Infant; paediatric palliative care; Palliative Care; Parents; perinatal palliative care; Pregnancy; Terminal Care
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway. SETTING: Maternal-Infant Department of Padua's University Hospital. PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group). INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities. MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care. RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation. CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
Rusalen F; Cavicchiolo ME; Lago P; Salvadori S; Benini F
BMJ Supportive & Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2019-001849" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001849</a>
Care Coordination Program for Children With Complex Chronic Conditions Discharged From a Rural Tertiary-Care Academic Medical Center
Academic Medical Centers; Adolescent; Child; Preschool Child; Chronic Disease; Hospital Emergency Service; Infant; Patient Discharge; Retrospective Studies
OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children in a care coordination program at our center (enrolled after hospital discharge with a tracheostomy or on a ventilator) and children with complex chronic condition discharges who were not enrolled. METHODS: Children ages 1 to 17 years were retrospectively included if they had a hospital discharge in 2017 with an International Classification of Diseases, 10th Revision code meeting complex chronic condition criteria or if they were in active follow-up with the care coordination program. Revisits and total costs of care were compared over 2018 for included patients. RESULTS: Seventy patients in the program were compared with 56 patients in the control group. On bivariate analysis, the median combined number of hospitalizations and ED visits in 2018 was lower among program participants (0 vs 1; P = .033), and program participation was associated with lower median total costs of care in 2018 ($700 vs $3200; P = .024). On multivariable analysis, care coordination program participation was associated with 59% fewer hospitalizations in 2018 (incidence rate ratio: 0.41; 95% confidence interval: 0.23 to 0.75; P = .004) but was not significantly associated with reduced ED visits or costs. CONCLUSIONS: The care coordination program is a robust service spanning the continuum of patient care. We found program participation to be associated with reduced rehospitalization, which is an important driver of costs for children with medical complexity.
Parker CL; Wall B; Tumin D; Stanley R; Warren L; Deal K; Stroud T; Crickmore K; Ledoux M
Hospital Pediatrics
2020
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<a href="http://doi.org/10.1542/hpeds.2019-0323" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0323</a>
Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review
social support; palliative care; nursing; parents; Child health
The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.
Oakley S; Dunbar H; de Vries K
Journal of Child Health Care
2021
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<a href="http://doi.org/10.1177/13674935211026122" target="_blank" rel="noreferrer noopener">10.1177/13674935211026122</a>
Measuring Financial Burden in Families of Children Living With Life-Limiting Conditions: A Scoping Review of Cost Indicators and Outcome Measures
cost; family; financial burden; life-limiting; pediatric
Objectives: This study aimed to provide a comprehensive overview of cost indicators and outcome measures used to measure financial burden in families of children with life-limiting conditions. Method(s): A scoping review methodology was used to map the existing literature and provide an overview of available cost indicators and outcome measures. Key medical, economic, and scientific databases were systematically searched to identify relevant articles published in 2000 or later. Result(s): The database search yielded 7194 records, including 30 articles eligible for final inclusion. Retrieved cost indicators and outcome measures fell into 3 broad categories: direct costs, indirect costs, and financial support. No study comprehensively assessed all 3 categories. Cost indicators used to measure direct costs were grouped into 5 medical and 11 nonmedical out-of-pocket expenses categories, of which 5 were commonly assessed (ie, treatment and diagnostics, travel and transport, accommodation, food, childcare and home help). Half of the reviewed studies included assessments of indirect costs, most commonly estimating work-related income loss by evaluating employment disruptions. Assessments of opportunity costs arising from informal caregiving and of financial support were rarely included. Conclusion(s): Current estimates of the financial burden faced by families of children with life-limiting conditions are inconsistent and often incomplete, likely resulting in severe underestimations of the costs these families incur. We hope that the framework presented in this article will contribute to a more comprehensive assessment of illness-related financial burden and help guide future policies in this area. Copyright © 2021 ISPOR-The Professional Society for Health Economics and Outcomes Research
Mitterer S; Zimmermann K; Bergstrasser E; Simon M; Gerber AK; Fink G
Value in Health
2021
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<a href="http://doi.org/10.1016/j.jval.2021.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.jval.2021.03.015</a>
Development and validation of pediatric opioid analgesia self-instruction system (pedoasis): An opioid knowledge tool for pediatric clinicians
education; opioids; pediatric pain; pediatric palliative care
Background: Acute pain is common in children and young adults with cancer and sickle cell disease. Current training curricula fail to adequately impart skills for pain management. We sought to develop and validate an education and assessment tool to address the safe effective use of opioids for pain management by pediatrics trainees. Method(s): The first version of the tool contained 10 case-based, multiple-choice questions. It was pilot tested within a medium-sized pediatric residency program using preintervention and postintervention surveys to assess residents' knowledge and comfort related to prescribing opioids. Content validation was performed through an expert panel of physicians. Internal reliability was tested by administering the tool to learners and practitioners with varying levels of training. Result(s): Comfort with choosing and converting between opioids increased significantly in pilot testing (P=0.005). Mean objective knowledge scores increased from 51% to 85.9% (P<0.001). The revised tool showed internal reliability within each group (Cronbach alpha 0.71 to 0.78) and significant differences in mean scores between groups (F ratio=9.45, P=0.0002). Conclusion(s): This tool demonstrates validity and internal reliability. Its use was associated with short-term educational gains and it garnered overall favorable feedback from users. Further testing is needed to assess the duration of these gains. Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.
MacDonell-Yilmaz RE; Anderson A; Hirway P; Welch JG
Journal of Pediatric Hematology/Oncology.
2021
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<a href="http://doi.org/10.1097/MPH.0000000000002275" target="_blank" rel="noreferrer noopener">10.1097/MPH.0000000000002275</a>
Comfort-holding in critically ill children: a scoping review
intensive care unit; pediatrics; critical care; delirium; comfort-holding; non-pharmacological therapy
PURPOSE: To understand and summarize the breadth of knowledge on comfort-holding in pediatric intensive care units (PICUs). SOURCES: This scoping review was conducted using PRISMA methodology. A literature search was conducted in MEDLINE, EMBASE, PsycINFO, CINAHL, and the Cochrane CENTRAL Register of Controlled Trials. Search strategies were developed with a medical librarian and revised through a peer review of electronic search strategies. All databases were searched from inception to 14 April 2020. Only full-text articles available in English were included. All identified articles were reviewed independently and in duplicate using predetermined criteria. All study designs were eligible if they reported on comfort-holding in a PICU. Data were extracted independently and in duplicate. PRINCIPAL FINDINGS: Of 13,326 studies identified, 13 were included. Comfort-holding was studied in the context of end-of-life care, developmental care, mobilization, and as a unique intervention. Comfort-holding is common during end-of-life care with 77.8% of children held, but rare during acute management (51% of children < three years, < 5% of children ≥ three years). Commonly reported outcomes included child outcomes (e.g., physiologic measurements), safety outcomes (e.g., accidental line removal), parent outcomes (e.g., psychological symptoms), and frequency of holding. CONCLUSION: There is a paucity of literature on comfort-holding in PICUs. This scoping review identifies significant gaps in the literature, including assessment of child-based outcomes of comfort-holding or safety assessment of comfort-holding, and highlights core outcomes to consider in future evaluations of this intervention including child-based outcomes, parent-based outcomes, and safety of the intervention.
Lee LA; Moss SJ; Martin DA; Rosgen BK; Wollny K; Gilfoyle E; Fiest KM
Canadian Journal of Anesthesia
2021
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<a href="http://doi.org/10.1007/s12630-021-02090-3" target="_blank" rel="noreferrer noopener">10.1007/s12630-021-02090-3</a>
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
Pediatrics; palliative care; bereavement; end of life care; Health personnel
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. METHODS: Exploratory qualitative research using semi-structured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multi-disciplinary team thematically analyzed the data. RESULTS: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. CONCLUSION: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team.
Kochen EM; Teunissen SCCM; Boelen PA; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Academic Pediatrics
2021
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<a href="http://doi.org/10.1016/j.acap.2021.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.08.015</a>
Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians
palliative care; paediatrics; electronic health records; usability; electronic medical records; participatory design; technology acceptance; user involvement
BACKGROUND: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended consequences that may cause harm to patients. One approach to preventing such harm is the involvement of users in the participatory design to ensure user acceptance and patient safety. Therefore, the aim of this study is to evaluate the acceptance of a novel patient chart module (PCM) as part of an EMR from the perspective of potential users in PPC and to involve these professionals in the design process. METHODS: A qualitative observational study with N = 16 PPC professionals (n = 10 nurses, n = 6 physicians) was conducted, including concurrent think aloud (CTA) and semi-structured interviews. A structured content analysis based on the Unified Theory of Acceptance and Use of Technology was applied. RESULTS: The results can be summarized in terms of general observations, performance expectancy, effort expectancy and facilitating conditions, all of which are likely to have a positive influence on acceptance of the PCM from the user perspective in the context of PPC. CONCLUSIONS: The involvement of users in the development of EMRs is important for meeting the requirements in PPC. Further software adaptations are necessary to implement these requirements.
Kernebeck S; Busse TS; Jux C; Meyer D; Dreier LA; Zenz D; Zernikow B; Ehlers JP
Children
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8080695" target="_blank" rel="noreferrer noopener">10.3390/children8080695</a>
Improving communication with parents: the Neonatal Intensive Care Unit Empathy Workshop
Child; Communication; Empathy; Health Personnel; Neonatal Intensive Care Units; Newborn Infant; Parents
OBJECTIVE: To implement an "Empathy Workshop" focused on improving Neonatal Intensive Care Unit (NICU) health care provider communication skills. METHODS: Staff-led, small group "Empathy Workshops" were conducted over a 2 year period. NICU parents answered a section of the "Picker Institute Parent Experiences of Neonatal Care Survey" in the pre- and post-intervention periods. NICU health care providers completed the "NICU Provider Communication Skills Self-Assessment" at three time points. RESULTS: Parent survey scores significantly improved in two questions: referring to child by first name (p = 0.02) and being offered emotional support from the staff (p = 0.03) or information on parent support groups (p = 0.03). Fifty-seven NICU providers completed all three self-assessments. Following the workshop, providers were significantly more comfortable with daily communication, discussing end of life issues, managing anxiety around difficult conversations, and handling a combative situation. CONCLUSIONS: The "Empathy Workshop" successfully enhanced NICU provider communication skills, thereby improving emotional support demonstrated to NICU parents.
Kasat K; Stoffels G; Ellington M
Journal of Perinatology
2020
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<a href="http://doi.org/10.1038/s41372-020-0742-x" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0742-x</a>
Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review
Children; decision-making; communication; medical complexity; parents
CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nuanced. OBJECTIVES: To review the literature specifically related to the parent experience of medical decision-making for CMC from the parent perspective. METHODS: A comprehensive, systematic approach was undertaken with the goal of identifying emergent themes in the existing literature as well as implications for clinical practice and future research. PubMed and PsycInfo databases were searched for English-language articles published between 1995-2020 that focused on parent experiences/perspectives using the search terms: children with medical complexity, children with serious illness, parent decision-making, parent experience, goals of care, parental priorities, advance care planning, and shared decision-making. RESULTS: The search yielded 300 unique manuscripts; including 32 empirical articles incorporated in this review. The synthesized findings were broken down into three main sections: 1. types of decisions that parents of CMC face, 2. key factors that influence parental decision-making for CMC, and 3. reasons that the decision-making process for parents of CMC is unique. The findings suggest that parents should be considered experts in their child's care and should be incorporated in shared decision-making in a culturally appropriate manner. CMC should have their personhood valued and providers require specialized training in communication. CONCLUSIONS: Parents of CMC have unique needs in their decision-making process and benefit from shared decision-making, continuity of care, collaborative communication and tailored, individualized care.
Jonas D; Scanlon C; Bogetz JF
Journal of Pain and Symptom Management
2021
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.029" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.029</a>
Patient-reported outcome measures in pediatric palliative care-a protocol for a scoping review
Pediatric palliative care; Scoping review; Health and psychosocial instruments; Patient-reported outcome measures; Symptom assessment
BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. METHODS: We propose a scoping review following the framework by Arksey and O'Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. DISCUSSION: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. SYSTEMATIC REVIEW REGISTRATION: https://osf.io/yfch2/ .
Holmen H; Winger A; Steindal SA; Castor C; Kvarme LG; Riiser K; Mariussen KL; Lee A
Systematic Reviews
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s13643-021-01791-6" target="_blank" rel="noreferrer noopener">10.1186/s13643-021-01791-6</a>
COMPLETE (Communication Plan Early Through End of Life): Development of a research program to diminish suffering for children at end of life
Communication; Goals of care; Palliative; Hospice; Pediatric cancer
While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).
Hendricks-Ferguson V; Newman AR; Brock KE; Haase JE; Raybin JL; Saini S; Moody KM
Journal of Pediatric Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2021.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2021.08.010</a>
Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic
Challenges; Covid-19; Paediatric intensive care unit; Paediatric palliative care
BACKGROUND: The integration of paediatric palliative care into the Iranian health system is essential. AIMS: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. METHODS: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. FINDINGS: Ten main categories were extracted from data analysis, including 'caring in COVID-19', 'communication and family centre care', 'breaking bad news', palliative care training', 'pain and symptom management', 'support of the child, family and clinical team', 'physical environment', 'guidelines', 'specialised staff' and 'home based palliative care'. CONCLUSION: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.
Hasanpour M; Pouraboli B; Mohammadpour M; Tahmasebi M; Sabeti F
International Journal of Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2021.27.6.303" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.6.303</a>
Children's visits to the paediatric intensive care unit from the nurses' experience
Child; Child advocacy; Family Nursing; Paediatric Intensive Care Units
BACKGROUND: Family process disruption is one of the main consequences of the hospitalization of a critically ill child in a Paediatric Intensive Care Unit (PICU). Children's visits to PICU may help improve family coping. However, this is not standard practice and nurses' experiences in facilitating children's visits to units where it is encouraged is unknown. AIM: To explore nurses' experience related to promoting the visits of siblings to PICU. METHODS: An interpretative phenomenological study was carried out through in-depth interviews in two PICUs belonging to third level public hospitals in Madrid. Twelve nurses with more than two years of experience in PICU were interviewed. They were all were working in PICU during the study. Furthermore, a PICU psychologist with an experience of four years was interviewed and this was considered shadowed data. Data analysis followed a thematic discourse analysis. RESULTS: Nurses' experience of facilitating children's visits to PICU can be condensed into four themes: emerging demand for visits, progressive preparation, decision-making through common consensus and creating intimate spaces. CONCLUSIONS: The experience of nurses in facilitating visits is mainly in response to the demand of families going through prolonged hospitalisation or end-of-life situations. The role of the nurse is one of accompaniment, recognising the major role of parents in the preparation of children and in developing the visit. Nurses feel insecure and lack resources for emotional support and demand action protocols to guide intervention and decision making.
González-Gil MT; Alcolea-Cosín MT; Pérez-García S; Luna-Castaño P; Torrent-Vela S; Piqueras-Rodríguez P; Gil-Domínguez S; Alonso-Lloret F; Belda-Holfheinz S; Sánchez-Díaz JI; Espinosa-Bayal MÁ
Enfermería Intensiva (English Edition)
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.enfie.2020.06.002" target="_blank" rel="noreferrer noopener">10.1016/j.enfie.2020.06.002</a>
Complexity of Medication Regimens for Children With Neurological Impairment
children with neurologic impairment; complex medication regimens; Cross-Sectional Studies; Parent support
IMPORTANCE: Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs. OBJECTIVE: To measure the complexity and potentially modifiable aspects of CMRs using the Medication Regimen Complexity Index (MRCI) and to examine the association between MRCI scores and subsequent acute visits. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional study was conducted between April 1, 2019, and December 31, 2020, at a single-center, large, hospital-based, complex care clinic. Participants were children with SNI aged 1 to 18 years and 5 or more prescribed medications. EXPOSURE: Home medication regimen complexity was assessed using MRCI scores. The total MRCI score is composed of 3 subscores (dosage form, dose frequency, and specialized instructions). MAIN OUTCOMES AND MEASURES: Patient-level counts of subscore characteristics and additional safety variables (total doses per day, high-alert medications, and potential drug-drug interactions) were analyzed by MRCI score groups (low, medium, and high score tertiles). Associations between MRCI score groups and acute visits were tested using Poisson regression, adjusted for age, complex chronic conditions, and recent health care use. RESULTS: Of 123 patients, 73 (59.3%) were male with a median (interquartile range [IQR]) age of 9 (5-13) years. The median (IQR) MRCI scores were 46 (35-61 [range, 8-139]) overall, 29 (24-35) for the low MRCI group, 46 (42-50) for the medium MRCI group, and 69 (61-78) for the high MRCI group. The median (IQR) counts for the subscores were 6 (4-7) dosage forms per patient, 7 (5-9) dose frequencies per patient, and 5 (4-8) instructions per patient, with counts increasing significantly across higher MRCI groups. Similar trends occurred for total daily doses (median [IQR], 31 [20-45] doses), high-alert medications (median [IQR], 3 [1-5] medications), and potential drug-drug interactions (median [IQR], 3 [0-6] interactions). Incidence rate ratios of 30-day acute visits were 1.26 times greater (95% CI, 0.57-2.78) in the medium MRCI group vs the low MRCI group and 2.42 times greater (95% CI, 1.10-5.35) in the high MRCI group vs the low MRCI group. CONCLUSIONS AND RELEVANCE: Higher MRCI scores were associated with multiple dose frequencies, complicated by different dosage forms and instructions, and associated with subsequent acute visits. These findings suggest that clinical interventions to manage CMRs could target various aspects of these regimens, such as the simplification of dosing schedules.
Feinstein JA; Friedman H; Orth LE; Feudtner C; Kempe A; Samay S; Blackmer AB
JAMA Network Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2021.22818" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.22818</a>
Perceptions of nurses caring for children with life-limiting conditions in an acute setting in the Republic of Ireland
Life-limiting conditions; nurse perceptions; Paediatric nursing; Paediatric palliative care
BACKGROUND: Despite international developments in paediatric palliative care (PPC), nurses continue to report feeling unprepared, anxious and overwhelmed when caring for patients with palliative care needs. There is an identified need throughout the literature for improved education in the area of PPC, as well as the need to improve the support available to families and health professionals in order to provide this specialised care effectively. AIM: To examine the insights of nurses within the acute setting who are caring for children with life-limiting conditions, who have complex and/or palliative care needs in Ireland. METHOD: This was a qualitative study which used purposive, convenience sampling to gain participants (N=14) and semi-structured interviews to gather data. Thematic analysis was used to discuss the material under five core themes. FINDINGS: Results are discussed under the five core themes of: 'nurses' emotive journey when caring for children with life-limiting conditions', 'the barriers faced in caring for children with life-limiting conditions in the acute setting', 'the facilitators to caring for children with life-limiting conditions in the acute setting', 'education and training', and, 'how nurses cope when a child dies'. CONCLUSION: Each participant of this study described a particular affection towards caring for children with complex healthcare needs within the acute setting. However, many of the obstacles faced by nurses in the acute setting when providing this care were reported upon, these included inefficient training, education and support, an inadequate nursing environment to provide the desired level of care and the emotional toll of providing such an intense level of care.
Devitt A; Hara MO
International Journal of Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2021.27.6.281" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.6.281</a>
Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach
pediatrics; palliative care; innovation; palliative medicine; digital health; design thinking; user-centered design; health information technology; process model
BACKGROUND: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. METHODS: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. RESULTS: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants' desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. CONCLUSIONS: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC.
Busse TS; Jux C; Kernebeck S; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
Children
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8070602" target="_blank" rel="noreferrer noopener">10.3390/children8070602</a>
Pediatric palliative care parents' distress, financial difficulty, and child symptoms
Parents; Pediatric Palliative Care; Psychological Distress; Financial Difficulty; Patient Symptoms
CONTEXT: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty. OBJECTIVES: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress. METHODS: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score. RESULTS: The majority of parents were moderately distressed (52%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone. CONCLUSIONS: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.
Boyden JY; Hill DL; Nye R; Bona K; Johnston EE; Hinds P; Friebert S; Kang TI; Hays R; Hall M; Wolfe J; Feudtner C
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.08.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.08.004</a>
Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature
adolescents and young adults; advance directives; goals of care; neuromuscular disease; palliative care
The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced health outcomes, yet it is not routinely offered to adolescents/young adults living with neuromuscular disease. An integrative review of the literature was conducted to examine the evidence related to the use of advance directives with adolescents/young adults living with neuromuscular disease and to identify reasons why they are not being used and how this can be improved. Three-hundred-seven studies were retrieved from PubMed, CINAHL, and EMBASE. Five studies met the final inclusion search criteria and were included in the analysis. Four themes emerged from the literature: conversations about advance directives with adolescents/young adults with neuromuscular disease are not being conducted, only a small number of patients have documented advance directives, patients want to have conversations about goals of care and want to have them sooner, and there is a lack of evidence in this area. These findings may influence neuromuscular clinicians' practice surrounding the use of advance directives and increase their knowledge regarding the need for discussions regarding goals of care. Copyright © 2021 by The Hospice and Palliative Nurses Association.
Battista V; Baker DJ; Trimarchi T; Sabri B; D'Aoust RF; Wright R
Journal of Hospice and Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000786</a>
Impact of educational programs on nurses' knowledge and attitude toward pediatric palliative care
Child; Educational program; Jordan; Nurse; Pediatric palliative care; PPC
OBJECTIVE: This study aims to assess the knowledge and attitude of nurses toward pediatric palliative care (PPC) and examine the impact of an educational program on pediatric nurses' knowledge and attitude regarding PPC for children facing life-threatening illnesses or chronic diseases in Jordan. METHOD: A quasi-experimental design was used. Exactly 120 pediatric nurses participated in the study, of which 60 were in the intervention group and 60 in the control group. RESULTS: The results of the study showed that nurses had a low score in knowledge and attitude toward PPC. The mean knowledge score of PPC for the control group is 6.88 (SD = 2.26), while that of the intervention group was 7.92 (SD = 1.99; p = 0.052). The mean attitude for PPC score for the control group was 95.88 (SD = 7.90), while that of the intervention group was 100 (SD = 10.95; p = 0.009). Also, the educational intervention had a significant positive effect on the knowledge and attitude toward PPC among nurses. SIGNIFICANCE OF THE RESULTS: Based on the result of this study, the authors found strong evidence of the effectiveness of the PPC educational program when it came to improving the nurses' knowledge and attitude toward PPC services and offer us an effective educational program.
Abuhammad S; Almasri R
Palliative & Supportive Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951521001139" target="_blank" rel="noreferrer noopener">10.1017/s1478951521001139</a>
Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions
parental perception; Healthcare communication; Neonatal medicine; Patient centred care; Shared decision making
Objectives Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation. Methods Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised. Results Searches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement. Conclusion The highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making. Practice Implications Complex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant.
Parish O; Williams D; Odd D; Joseph-Williams N
Patient Education and Counseling
2021
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<a href="http://doi.org/10.1016/j.pec.2021.08.033" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2021.08.033</a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
adolescent; cannabis; children; anxiety; autism spectrum disorder; behaviour; communication; hyperactivity
Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. Objective The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. Methods Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0–18 years old and (4) any study design (published or unpublished). Results We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. Conclusions Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data
parent reported data; pediatric; Pediatric palliative care; Poly-Symptomatology
Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report.To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children’s hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites.Analyses were stratified by patients’ demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non–mutually exclusive complex chronic condition categories.Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score.Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13).In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.
Feudtner C; Nye R; Hill DL; Hall M; Hinds P; Johnston EE; Friebert S; Hays R; Kang TI; Wolfe J
JAMA Network Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2021.19730" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.19730</a>
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries
stillbirth; parents; bereavement care; high-income countries; middle-income countries
BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high-income and middle-income countries. METHODS: An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high-income and middle-income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high-income and middle-income countries. RESULTS: Over three thousand parents (3041) with a self-reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high-income countries (HICs) compared with women in middle-income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0-5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. CONCLUSIONS: Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision-making, and follow-up care.
Horey D; Boyle FM; Cassidy J; Cassidy PR; Erwich JJHM; Gold KJ; Gross MM; Heazell AEP; Hopkins Leisher S; Murphy M; Ravaldi C; Siassakos D; Storey C; Vannacci A; Wojcieszek A; Flenady V
Birth
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/birt.12546" target="_blank" rel="noreferrer noopener">10.1111/birt.12546</a>
Predictive Ability of an Illness Severity Measure: Implications for Nursing Research
pediatric; end-of-life; complex chronic conditions; infant; illness severity; measurement testing
BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories. METHODS: Discrimination, calibration, accuracy, and validation tests were used to examine the predictive performance of the measures. RESULTS: Among the 10,175 infants in the analysis, both measures poorly discriminated-palliative care consultation (C-statistics 0.6396 vs. C-statistics 0.5905) and any inpatient procedure (C-statistics 0.6101 vs. C-statistics 0.5160). The Hosmer-Lemeshow goodness-of-fit tests revealed good calibration for both measures. The original measure was more accurate in predicting end-of-life outcomes-palliative care consultation (Brier Score 0.3892 vs. 0.7787) and any inpatient procedures (Brier Score 0.3115 vs. 0.4738). CONCLUSIONS: The revised measure did not perform any better than the original in predicting end-of-life outcomes among infants.
Lindley LC; Fortney CA; Cozad MJ
Journal of Nursing Measurement
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1891/JNM-D-19-00106" target="_blank" rel="noreferrer noopener">10.1891/JNM-D-19-00106</a>
Future roles of artificial intelligence in early pain management of newborns
neonatal intensive care unit; neonatal pain assessment; neonatal pain prediction; newborn pain management; opioid-based pain management
The advent of increasingly sophisticated medical technology, surgical interventions, and supportive healthcare measures is raising survival probabilities for babies born premature and/or with life-threatening health conditions. In the United States, this trend is associated with greater numbers of neonatal surgeries and higher admission rates into neonatal intensive care units (NICU) for newborns at all birth weights. Following surgery, current pain management in NICU relies primarily on narcotics (opioids) such as morphine and fentanyl (about 100 times more potent than morphine) that lead to a number of complications, including prolonged stays in NICU for opioid withdrawal. In this paper, we review current practices and challenges for pain assessment and treatment in NICU and outline ongoing efforts using Artificial Intelligence (AI) to support pain- and opioid-sparing approaches for newborns in the future. A major focus for these next-generation approaches to NICU-based pain management is proactive pain mitigation (avoidance) aimed at preventing harm to neonates from both postsurgical pain and opioid withdrawal. AI-based frameworks can use single or multiple combinations of continuous objective variables, that is, facial and body movements, crying frequencies, and physiological data (vital signs), to make high-confidence predictions about time-to-pain onset following postsurgical sedation. Such predictions would create a therapeutic window prior to pain onset for mitigation with non-narcotic pharmaceutical and nonpharmaceutical interventions. These emerging AI-based strategies have the potential to minimize or avoid damage to the neonate's body and psyche from postsurgical pain and opioid withdrawal.
Salekin MS; Mouton PR; Zamzmi G; Patel R; Goldgof D; Kneusel M; Elkins SL; Murray E; Coughlin ME; Maguire D; Ho T; Sun Y
Paediatric and Neonatal Pain
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pne2.12060" target="_blank" rel="noreferrer noopener">10.1002/pne2.12060</a>