Pediatric Palliative Telehealth Care from Hospital to Hospital: A Pilot Project (QI653)
child; clinical article; comfort; community hospital; conference abstract; consensus; education; feasibility study; female; follow up; human; human experiment; Likert scale; male; palliative therapy; primary health care; program feasibility; questionnaire; satisfaction; telehealth; tertiary care center; total quality management
Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.
Evan E; Sandesara A; Mock K O
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.262" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.262</a>
Pediatric Resident's Knowledge and Attitudes Towards Spiritual Assessment and Care: An Educational Intervention. (FR408C)
attitude; Caucasian; child; clinical article; comfort; conference abstract; controlled study; female; human; Likert scale; palliative therapy; pediatric patient; resident; role playing; Wilcoxon signed ranks test
Objectives: * Recognize the importance of religious/spiritual assessment and care in pediatric patients with serious illness. * Identify the elements of a spiritual assessment. * Assess the needs of pediatric residents in religious and spiritual assessment in children with serious illness.
Delaney C; Moehling K; Maurer S
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.120" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.120</a>
Improving pediatric palliative care in a community-based setting through an ongoing education series
administrative personnel; checklist; child; clergy; comfort; community hospital; conference abstract; conversation; do not resuscitate order; dying; education; female; hospice care; human; Likert scale; major clinical study; male; needs assessment; nurse; palliative therapy; pharmacist; simulation; social worker; Texas
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hospital staff have varying experience in PPC and are unfamiliar with available resources. Absence of focused training on PPC and relative paucity of exposure to PPC necessitates an urgent need for improvement. Objective(s): 1. To understand baseline comfort of TCH-TW staff members in delivering PPC in a community-based setting and identify areas of improvement and knowledge gaps. 2. To pilot a campus wide ongoing education series that improves overall comfort and knowledge of TCH-TW staff members in delivering PPC in a community-based setting. Design/Method: An electronic survey (using a 5 point Likert scale) was sent to 350 staff members including physicians, mild-level providers, nurses, social workers, child life specialists, chaplains, pharmacists, and administrators to conduct a needs assessment. Results were analyzed to design a quarterly education series, utilizing didactic presentations, simulations, and small group discussions. Feedback tools included pre- and post-assessment questions, audience response system, and competency checklists. Result(s): One-hundred forty three participants (40%) completed the survey. Staff members reported an average score ~3.16 when asked if they felt the campus was 'palliative care friendly.' They reported a comfort level ~2.90 with regards to having end-of-life discussions with patients and their families, and a rating ~2.33 when it came to placing 'do-not-resuscitate' orders. An average comfort level ~3.28 was reported when caring for an actively dying patient and acute symptom management. Additional areas of improvement included understanding essential differences between palliative, concurrent, and hospice care (average score~3.39), as well as logistics and information accessibility to identify PPC resources within the campus (average score ~2.85 and ~2.93, respectively). The inaugural lecture- 'Hospice 101: Providing Palliative Care in the Community Hospital Setting: An Interprofessional Approach-' was launched in October 2018, with 37 participants reporting an overall activity quality score ~4.53. Additional lectures planned over the academic year include: having difficult conversations; logistics of when a patient dies at TCH-TW; and management of an actively dying patient. Conclusion(s): Community hospitals have a unique opportunity to provide PPC services due their closer proximity to a patient's own home. Through an ongoing campus wide educational series initiative, we aim to provide a high-quality palliative care experience that better serves our patient population.
Moonat H; Nguyen L
Pediatric Blood and Cancer
2019
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/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Parental knowledge and opinions on palliative care for children
ambulatory care; analysis of variance; awareness; Caucasian; child; conference abstract; controlled study; convenience sample; data analysis software; ethnic group; female; high school; human; Illinois; institutional review; legal guardian; Likert scale; major clinical study; male; New York; palliative therapy; physician; randomized controlled trial; terminal care
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
Zawistowski C A; Black C; Spruill T M; Granowetter L
Pediatrics
2018
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).
Peer-designed parents' bereavement panel: Exposing first-year medical students to pediatric end-of-life care
Bereavement; care behavior; child; clinical article; comfort; conference abstract; controlled study; curriculum; female; human; human experiment; learning; Likert scale; male; medical school; medical student; pediatric oncologist; pediatrics; preclinical study; terminal care
Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and standardization across medical schools is lacking. Furthermore, very little effort has focused on the incorporation of pediatric-specific end-of-life care education into the preclinical years. The purpose of this study is to determine whether a bereavement panel consisting of parents who had a child pass away from a life threatening condition: (1) improved first-year medical students' self-reported ability to interact with children suffering from life-threatening conditions and their families, and (2) changed students' opinions about pediatric end-of-life care curriculum. Evaluation: A total of 23 first-year medical students attended a two-hour panel consisting of four parents who had a child pass away from a life threatening condition. The panel was part of a weeklong, peer-designed elective focused on exposing students to various aspects of pediatrics. It consisted of a question-and-answer discussion facilitated by a pediatric oncologist, with a focus on the parents' positive and negative experiences with different aspects of health care throughout their child's illness. Pre-panel and post-panel surveys were administered, asking students to report agreement with various statements using a 10- point Likert scale.
Rolfes M; Sunde K; Jones A; Starr S
Pediatrics
2018
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).
Communicating death and dying through simulation: A project with pediatric residents
acute disease; child; clergy; comfort; communication skill; conference abstract; conversation; curriculum; emergency treatment; human; Likert scale; pain; palliative therapy; residency education; resident; simulation; teaching; terminal care
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014, during this author's chief resident academic year, many residents expressed feelings of frustration and inadequacy when caring for children at end-of-life, and also reported a lack of opportunities to process their patients' deaths. To address these needs, we partnered with an interdisciplinary team to create an end-of-life communications-based curriculum that was integrated into our existing resident simulation program. We aimed to provide communication opportunities for our residents in a safe, structured, and directly observed environment where they could practice communication skills and reflect on their experiences. We hypothesized that residents would value these simulations as part of their residency training, and would feel more comfortable communicating difficult news after practicing such skills. Evaluation The end-of-life simulation curriculum was developed by an interdisciplinary team of ICU and hospitalist physicians, pediatric palliative care professionals, child life specialists, and hospital chaplains. Over two years, all residents participated in simulations that focused on communicating with parents (standardized actors) in pediatric death and dying situations. Three pausing points were included during the simulation, offering residents the unique opportunity to discuss together how best to approach the next conversation with the standardized parent-actor. Following the simulations, the interdisciplinary team debriefed with the residents, allowing opportunity for reflection and addressing questions and concerns. After each simulation/debriefing cycle, educational resources were provided through an electronic teaching file, as well as opportunities to meet oneon- one with members of the interdisciplinary team for further processing. Pre-tests and post-tests were used to evaluate residents comfort with end-of-life communication and pediatric palliative care provision. A 5-point Likert scale was used to evaluate residents' level of comfort with a variety of skills/topics, including: discussing end-of-life care options with parents, limiting emergency treatment, managing pain/symptoms, pronouncing death, and coping with one's own responses to a child's death. Discussion Pediatric residents feel unprepared to communicate with families in end-of-life situations. Through this innovated simulation curriculum, we have been able to better understand the needs of our resident trainees and by providing exposure to these complex situations in a safe, empowering environment. Following our first year of data collection, we found that 92% of residents reported feeling more comfortable communicating with families in end-of-life situations after participating in a two hour simulation. The residents reported benefitting from these experiences; 100% of residents requested additional training in palliative care. We anticipate having second cycle data available for presentation in Fall, 2016 to further demonstrate the how this innovative simulation enhances pediatric resident education.
Greening H G; Havalad V; Kobler K
Pediatrics
2018
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).
Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses
article; Belgium; burnout; controlled study; counseling; decision making; human; Likert scale; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; questionnaire; terminal care
Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. Aim: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. Design/participants: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. Results: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. Conclusion: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
Dombrecht L; Cohen J; Cools F; Deliens L; Goossens L; Naulaers G; Beernaert K; Chambaere K; Laroche S; Theyskens C; Vandeputte C; Cornette L; Van de Broek H
Palliative Medicine
2019
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/10.1177/0269216319888986" target="_blank" rel="noreferrer noopener">10.1177/0269216319888986</a>
Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
child; female; human; major clinical study; male; palliative therapy; controlled study; emergency ward; cancer patient; respiratory distress; conference abstract; decision making; human tissue; perception; clinician; spinal muscular atrophy; data analysis software; advanced cancer; brain disease; cancer resistance; deterioration; disease exacerbation; e-mail; hypoplastic left heart syndrome; leukemia; Likert scale; nonparametric test; pediatrician; vignette
BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore the perceptions of pediatric specialists involved in the care of children with life-threatening illnesses with regards to GOC discussions and management during acute unexpected clinical deteriorations. DESIGN/METHODS: This single center survey study used 4 scenarios of children with advanced life-threatening illnesses, presenting to the emergency department (ED) with respiratory distress. Scenarios included patients with hypoplastic left heart syndrome (HLHS), static encephalopathy, spinal muscular atrophy (SMA), refractory leukemia. Questions following each vignette were identical. Physicians from the specialties most involved in these scenarios completed the survey by email or in person. Data analysis used SPSS v.20 (IBM Inc.). Related samples non-parametric tests compared participants' Likert scale answers to the different scenarios. RESULT(S): Between May 2015 and May 2016, 60 participants completed the study; 14 were excluded (>60% missing answers). Most (80.4%) participants reported an interest in pediatric palliative care; 71.7% had 0-3 formal trainings. Participants believed GOC were best discussed before an acute deterioration (Table 1). Acute deteriorations were not seen as an opportune moment to initiate discussions about GOC. However, validating GOC was necessary, given that not discussing GOC was unacceptable. Pediatric specialists were seen as the most suitable teams to initiate these discussions, while the ED's role was unclear. Several management options were less acceptable for the patient with static encephalopathy. CONCLUSION(S): Discussing GOC in the ED during exacerbations is complex, involving many stakeholders, who may not always be available to help in decision making processes. Advanced care planning with these families is essential to prepare them for acute heath events. (Table Presented).
Cote A J; Gaucher N; Payot A
Paediatrics and Child Health (Canada)
2019
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).
Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
human; terminal care; female; male; palliative therapy; emergency ward; major clinical study; resuscitation; article; adult; patient care; intensive care; health care access; priority journal; follow up; risk factor; physician attitude; personal experience; cross-sectional study; tracheostomy; disability; spinal muscular atrophy; Likert scale; clinical decision making; childhood disease/ep [Epidemiology]; neurologic disease/ep [Epidemiology]; noninvasive ventilation; patient comfort; pediatric rehabilitation; profound intellectual and multiple disability; rehabilitation center; risk; Swiss
Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.
Wosinski B; Newman C J
Developmental Neurorehabilitation
2019
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/10.1080/17518423.2018.1461946" target="_blank" rel="noreferrer noopener">10.1080/17518423.2018.1461946</a>
Challenges in assessing the need for beds in palliative care-The example of inpatient hospice care for children, adolescents and young adults
human; child; female; male; palliative therapy; diagnosis; death; Likert scale; psychosocial care; adult; home care; major clinical study; conference abstract; young adult; artificial ventilation; Germany; occupation; semi structured interview; long term care; resident; quantitative analysis; disabled person; funding; hospital patient; mortality; statistics; prevalence; hospice care; calculation; length of stay; politics
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various data to assess the need for IHC for ACA in North Rhine-Westphalia (NRW; 17.6 million inhabitants). Methods: Quantitative: All local hospices (n=5; 52 beds) and the single palliative care unit (PCU) for ACA were asked to contribute data on service provision, e.g. patient numbers and characteristics, occupation rate (OcR), length of stay. All local specialist palliative home care teams (n=6) (SAPV) for ACA were asked to estimate the percentage of ACA for whom they arranged IHC and in which timely manner (6-point Likert scale). Qualitative semi-structured interviews (hospices; SAPV; PCU) covering aspects such as access, barriers to access, needs coverage, impact of newly implemented SAPV on need, unmet demand for other services, funding politics and networking. Further data (reference year 2015): a) mortality statistics-% of all ACA in NRW dying from cancer (< 20 years)/non-cancer diseases according to the 4 ACT disease groups (< 25 years); b) prevalence estimates. Results: The 4 responding hospices had cared for 81-127 patients; average stay: 8-10 days, OcR: 60-90%. Cancer accounted for 1-20% of admissions, severe multi-handicapped ACA were 29-80%, 0-15% had no clear diagnosis. Hospices, SAPV and PCU teams saw no need for further hospice beds for ACA in NRW. They reported a lack of short and long-term care facilities for ACA in need of intensive medical care (and/or invasive ventilation) as well as of ambulatory psychosocial care and care management. Of the 1383 deaths (0-24 years) 47.1% were >1 year old, 62.3% of those < 20 years and 33.4% of those from 20-24 years had diseases according to the ACT groups and were probably in need of IHC. Different calculation models for prevalence will be discussed. Conclusion: Estimating the need for hospice beds for ACA remains difficult for various reasons: a) lack of valid prevalence statistics of relevant diseases, b) mortality statistics underestimate palliative care need, c) data protection regulations prohibit data exchange between hospices, d) local data do not capture the fact that residents from all German States are entitled to use IHC in NRW, and e) therefore an estimation would have to triangulate data from all relevant services for ACA across Germany.
Jaspers B; Jansky M; Nauck F
Palliative Medicine
2018
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
palliative therapy; Child; Clinical Article; cohort analysis; comfort; communication skill; Curriculum; Death; Human; Intensive Care; legal aspect; Likert scale; maturation; prospective study; role playing; simulation; spike
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life (2-4). Pediatric Critical Care fellows (PCCF) report deficiencies in PC education and knowledge (5-7). This study measured PC knowledge, attitudes, and skills of PCCF at one center assessing how maturation impacts those indices. Methods: Prospective cohort study of PCCF surrounded a series of PC workshops. Two validated adapted tools evaluated endpoints; a survey of PCCFs' comfort, knowledge and experience (8) and a Communication Assessment (CA) using SPIKES methodology (9). Graduating fellows (GF, n = 4) and a current fellow cohort (CF, n = 11) completed the survey. In a simulation workshop, faculty (n = 2) used the CA to rate fellows' communication skills (n = 15). A CF cohort (n = 11) completed the post-curriculum survey. Results: Assessed PCCF's knowledge, attitudes and skills show maturation alone inadequately instructs PC, reflecting national data (5-9). Maturation did not alter self-appraised comfort providing PC in 6 (Likert scale 1-5)(composite scores by year; 1st 3.6, 2nd 3.3; 3rd; 3.5). With training, comfort managing conflict and emotion (1st 3.2; 3rd 3), symptoms at EOL (1st 3.7; 2nd 3.6; 3rd 4.1), and legal aspects of PC (1st 3.6; 3rd 3.7) did not change. Nor, did it improve objective knowledge scores (by year; 1st 54%; 2nd 46%; 3rd 51%; GF 65% p> 0.05) or communication skills by CA (scale 0-4)(1st 2.2; 2nd 2.6; 3rd 2). PC exposure, gauged by care conferences (cc) led and recalled deaths on clinical duty (cc 1-25; M= 8.5; deaths 5-36; M 13.5), did not correlate with comfort, communication skills, or knowledge. Post-workshop, more PCCF found PC education helpful (90 v 60%) with new openness to workshops, online modules, and role-play versus didactics and observation pre-workshop. Conclusions: This study demonstrates knowledge gaps and a lack of communication skills commiserate with self-reported comfort in PC among PCCF. Maturation did not improve these endpoints. Fellows are also open to and request more PC education after exposure to a multi-modal educational intervention. Findings indicate that PCCF want and need specific curricula to affect PC knowledge and skills.
2018
Short SR; Poynter-Wong S; Flint H
Critical Care Medicine
2018
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/10.1097/01.ccm.0000528417.25863.42" target="_blank" rel="noreferrer">10.1097/01.ccm.0000528417.25863.42</a>