1
40
7
-
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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February List 2024
URL Address
<a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/tsaco-2023-001143</a>
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Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients
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Trauma Surgery and Acute Care Open
Date
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2023
Subject
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child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; pediatric intensive care unit; school child; consultation; clinical feature; practice guideline; surgery; adolescent; infant; critically ill patient; intensive care unit; electronic medical record; traumatic brain injury; toddler; child abuse; total quality management; special situation for pharmacovigilance; childhood trauma; injury
Creator
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Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB
Description
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The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patients has not been studied. We sought to identify patients who received the consultation and develop criteria for patients who would benefit from these resources at our institution. Methods: The institutional pediatric trauma registry was queried to identify all admissions age 0-17 years old to the pediatric intensive care unit (PICU) or trauma ICU (TICU) from 2014 to 2021. Demographic and clinical features were obtained from the registry. Electronic medical records were reviewed to identify and review consultations to the ComPASS team. A clinical practice guideline (CPG) for palliative care consultations was developed based on the TQIP guideline and applied retrospectively to patients admitted 2014-2021. The CPG was then prospectively applied to patients admitted from March through November 2022. Results: A total of 399 patients were admitted to the PICU/TICU. There were 30 (7.5%) deaths, 20 (66.7%) within 24 hours of admission. Palliative care consultations were obtained in 21 (5.3%). Of these, 10 (47.6%) patients were infants/toddlers <age 2 years, all had traumatic brain injury, 3 (14.3%) were for suspected child abuse, and many were for "goals of care" or family meetings. When the CPG was applied retrospectively, 109 (27.3%) patients met criteria for consultation. After 8 months of prospective implementation of this CPG, palliative care consultation was obtained in 25% (7 of 28) of pediatric trauma patients admitted to the ICU. Conclusion: Our results demonstrate underused potential of the palliative care team to impact the hospital course of critically ill pediatric trauma patients. Ongoing studies will analyze the utility of CPG implementation for early involvement of palliative services in critically ill pediatric trauma patients. Level of evidence: Level III (retrospective cohort).
Identifier
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<a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a>
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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).
2023
Adolescent
Arteaga GM
Article
Baxter J
Child
Child Abuse
childhood trauma
Clinical Feature
Consultation
Controlled Study
Critically Ill Patient
electronic medical record
Elsbernd TA
February List 2024
Female
Goswami J
Human
Infant
injury
Intensive Care Unit
Klinkner DB
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Practice Guideline
Retrospective Study
Schiltz BM
School Child
special situation for pharmacovigilance
Surgery
toddler
Total Quality Management
Trauma Surgery and Acute Care Open
traumatic brain injury
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jpc.16357</a>
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Siblings and End-Of-Life Decision Making in the NICU
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Journal of Paediatrics and Child Health
Date
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2023
Subject
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decision making; sibling; care behavior; child; clinical article; conference abstract; content analysis; critically ill patient; Decision Making; electronic medical record; female; human; infant; male; neonatal intensive care unit; perception; semi structured interview; wellbeing
Creator
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Power J; Gillam L; Prentice TM
Description
An account of the resource
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the child. In this decision-making process, it is not known whether parents are influenced by the needs of their other children. Method(s): A qualitative two-phase exploratory methodology was chosen to understand how considerations for other children in the family influence parents' decisions. The electronic medical records of children ( n = 20) previously admitted to the Royal Children's Hospital's NICU were analysed for relevant mentions of siblings. Then, families ( n = 3) participated in semi-structured interviews to understand considerations of siblings. Statements and interviews were analysed using inductive content analysis. Result(s): Parents articulate the considerate juggling act of balancing the day-to-day needs of multiple children during the NICU journey. With the wellbeing of siblings in mind, parents made a range of decisions with different degrees of medical impact in the NICU. For end-of-life decisions, parents differed in their perspectives about whether considerations of siblings should be taken into account. Moreover, clinicians were aware of the challenges of caring for multiple children and supported parents with these challenges. Conclusion(s): It is clinically and ethically significant that sibling considerations impact end-of-life decision-making. We suggest clinicians reflect on their own perception of how much siblings should be allowed to influence end-of-life decisions to protect critically ill babies from harm. More research is needed to better understand these influences.
Identifier
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<a href="http://doi.org/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener">10.1111/jpc.16357</a>
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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).
2023
care behavior
Child
Clinical Article
conference abstract
Content Analysis
Critically Ill Patient
Decision Making
electronic medical record
Female
Gillam L
Human
Infant
Journal of Paediatrics and Child Health
July List 2023
Male
Neonatal Intensive Care Unit
Perception
Power J
Prentice TM
Semi Structured Interview
Sibling
Wellbeing
-
Dublin Core
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Title
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May 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2022 List
URL Address
<a href="http://doi.org/10.3390/ijerph19063637" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/ijerph19063637</a>
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Evaluation of an Electronic Medical Record Module for Nursing Documentation in Paediatric Palliative Care: Involvement of Nurses with a Think-Aloud Approach
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International Journal of Environmental Research and Public Health
Date
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2022
Subject
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Documentation; Electronic medical record; Nurses; Nursing; Palliative care; Pediatrics; Think-aloud
Creator
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Kernebeck S; Busse TS; Jux C; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
Description
An account of the resource
Background: Paediatric palliative care (PPC) is a noncurative approach to the care of children and adolescents with life-limiting and life-threatening illnesses. Electronic medical records (EMRs) play an important role in documenting such complex processes. Despite their benefits, they can introduce unintended consequences if future users are not involved in their development. Aim(s): The aim of this study was to evaluate the acceptance of a novel module for nursing documentation by nurses working in the context of PPC. Method(s): An observational study employing concurrent think-aloud and semi-structured qualitative interviews were conducted with 11 nurses working in PPC. Based on the main determinants of the unified theory of acceptance and use of technology (UTAUT), data were analysed using qualitative content analysis. Result(s): The main determinants of UTAUT were found to potentially influence acceptance of the novel module. Participants perceived the module to be self-explanatory and intuitive. Some adaptations, such as the reduction of fragmentation in the display, the optimization of confusing mouseover fields, and the use of familiar nursing terminology, are reasonable ways of increasing software adoption. Conclusion(s): After adaptation of the modules based on the results, further evaluation with the participation of future users is required. Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/ijerph19063637" target="_blank" rel="noreferrer noopener">10.3390/ijerph19063637</a>
2022
Busse TS
Documentation
Dreier LA
Ehlers JP
electronic medical record
International Journal of Environmental Research and Public Health
Jux C
Kernebeck S
May 2022 List
Meyer D
Nurses
Nursing
Palliative Care
Pediatrics
think-aloud
Zenz D
Zernikow B
-
Dublin Core
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Title
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December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.3390/children8100839" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8100839</a>
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Title
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Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatrics; palliative care; electronic medical record; codesign; electronic health record; participatory design; shared health record; software development; think-aloud
Creator
An entity primarily responsible for making the resource
Busse TS; Jux C; Kernebeck S; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
Description
An account of the resource
BACKGROUND: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. METHODS: To evaluate potential users' perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi-structured qualitative interview. RESULTS: Twenty PPC professionals (nurses, physicians) from specialized outpatient PPC teams, a PPC unit, and medical offices rated the ECHR system as a helpful tool to improve the exchange and collection of information, communication between PPC professionals, and treatment planning. From the user's point of view, the basic logic of the ECHR system should be further adapted to improve the interaction of data remirrored from patient records of outpatient and inpatient care with those entered via the system. The users wished for further functions (text search) and content (information on therapies). Some content, such as the treatment process, needs to be further adapted. CONCLUSION: The developed ECHR system needs to be more specific in some features by offering all available information; while for other features, be less specific to offer a quick overview. The ability to share information promptly and automatically was seen as a tremendous improvement to the quality of care for PPC patients.
Identifier
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<a href="http://doi.org/10.3390/children8100839" target="_blank" rel="noreferrer noopener">10.3390/children8100839</a>
Rights
Information about rights held in and over the resource
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).
2021
Busse TS
Children
codesign
December 2021 List
Dreier LA
Ehlers JP
electronic health record
electronic medical record
Jux C
Kernebeck S
Meyer D
Palliative Care
participatory design
Pediatrics
shared health record
software development
think-aloud
Zenz D
Zernikow B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/671" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/671</a>
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Title
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Improving the frequency of symptom assessment in pediatric palliative care patients
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; child; clinical evaluation; comfort; conference abstract; e-mail; electronic medical record; hospital patient; human; human cell; information technology; outpatient; Palliative therapy; quality of life; root cause analysis; stem cell; symptom assessment; total quality management
Creator
An entity primarily responsible for making the resource
Mark M S; McKenna L; Thienprayoon R
Description
An account of the resource
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document symptoms in the electronic medical record (EMR) using a symptoms assessment tool modified from the Memorial Symptom Assessment Scale (MSAS). Our specific aim was to increase the percentage of MSAS evaluations completed and properly documented at the time of consult completion and at least weekly thereafter by PACT providers from 20% to 90% over six months. This project utilized standard quality improvement methodology. We began with a process map, documented process failures using a PARETO chart, and subsequently performed root cause analysis for each failure. Multiple tests of change were run for the following interventions: an initial educational session, MSAS badge reminder cards, adding MSAS awareness to our morning patient huddle, notification of individual completion rates via email, public posting of individual completion rates, a visual reminder with a colorful stamp on daily patient list, modification to the EMR patient list view and EMR flowsheet interface where MSAS is documented. We also performed in-depth reviews of any failures that were identified. Within 4 months of implementation the aim was exceeded and a median of 100% of patients had documented MSAS evaluations. This was considered a significant improvement based on the Institute for Healthcare Improvement Scale. These results have been sustained for an additional 8 months. Factors that impacted success included active engagement of all team members in the improvement process, frequent recognition and treatment of new symptoms, and ongoing updates regarding individual completion rates. Our dependence on the EMR was a limiting factor in sustainability as not all parts of the process were able to be automated and some steps still depend on human factors. Improving existing structure of team communication became critical as we implemented tests of change. Next steps for this project include utilizing the weekly MSAS data available on all patients to study those symptoms experienced specifically by children undergoing stem cell transplant. We will continue to work with our hospital information technology staff to further develop sustainability via process changes in the EMR. In addition we will expand our symptom assessment to include all outpatient consults. Finally, as we have standardized, reliable method to measure symptoms for all inpatients, we intend to design interventions targeting improving symptom management and health-related quality of life in children receiving palliative care in our institution.
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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).
2018
April 2020 List
Awareness
Child
clinical evaluation
Comfort
conference abstract
E-mail
electronic medical record
Hospital Patient
Human
human cell
information technology
Mark M S
McKenna L
Outpatient
Palliative Therapy
Pediatrics
Quality Of Life
root cause analysis
stem cell
Symptom Assessment
Thienprayoon R
Total Quality Management
-
Dublin Core
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijrobp.2019.06.1497</a>
Dublin Core
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Title
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Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
Publisher
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International Journal of Radiation Oncology Biology Physics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; anesthesia; Asia; cancer radiotherapy; central nervous system tumor; child; conference abstract; controlled study; death; electronic medical record; employer; female; follow up; fraud; housing; human; immigration; lowest income group; major clinical study; male; medical record review; mental stress; neuroblastoma; organization; pain; poverty; race; radiation oncologist; radiotherapy; retrospective study; rhabdomyosarcoma; school child; South and Central America; terminal care; vulnerable population; young adult
Creator
An entity primarily responsible for making the resource
Wong K; Hwang L; Liu K X; Lee H J; Olch A J
Description
An account of the resource
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month of life with a focus on vulnerable and underserved pediatric patients. Materials/Methods: A retrospective chart review of patients treated from 2008-2017 identified patients treated with radiotherapy with palliative intent. Demographic, diagnosis, and treatment parameters were collected from the electronic medical records. Vital status was recorded at date of death or last follow-up. Vulnerable patients were defined as belonging to a minority, adolescent and young adult (AYA), special needs, or low income population. Result(s): Of the 1092 patients treated with RT, 108 were identified as having received 227 treatments with palliative intent. Forty-five patients (42%) were female and 63 (58%) were male. The median age at the time of the first course of radiation was 11 years (range 0-25). Central nervous system (CNS) disturbance was the most common indication (n=50, 46%) followed by pain (n=44, 41%). Top primary diagnoses included CNS neoplasm (n=30, 37%), neuroblastoma (n=20, 19%), and rhabdomyosarcoma or other sarcoma (n=11, 10%). Forty-four percent were treated with anesthesia for at least one course of radiation. The median time from last course of RT to date of last follow-up was 3 months (range 0-105), and 25 patients (23%) received radiation in the last month of life. Eighty-two (76%) patients were deceased at time of review. The vulnerable constituted the overwhelming majority of the 108, only 13 (11.5%) were not. Patients were classified in the following individual categories: minority (n=90, 83.3%), AYA (n=34, 30%), special needs (n=10, 8.8%), or low income (n=70, 62%). Eight patients initially came seeking cancer treatment not available in Asia or Latin America. Latinos (n=66, 61%) were numerous and diverse, 12% were mixed race, and 18% had employer-based coverage. The most common vulnerable patients were Latin children from low income families (n=40, 35%). Obstacles to care included the immigration system, limited English, discrimination, cultural barriers, and poverty with job, transportation, and housing insecurity. Safety net and charitable organizations had scarce resources and rules intended to reduce fraud and abuse further limited access. Parents reported these challenges amplified the great psychological distress felt after the death of a child. Conclusion(s): This is the first report to document the vulnerable pediatric and AYA population receiving palliative radiation therapy at a large urban hospital. Almost a quarter of patients received treatment in the last month of life. Most commonly, a vulnerable child was Latinx from a low income family. Further investigation is needed to guide radiation oncologists on the delivery of optimal end-of-life care and address barriers to care in this population. Copyright © 2019
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">10.1016/j.ijrobp.2019.06.1497</a>
Rights
Information about rights held in and over the resource
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).
2019
Adult
Anesthesia
Asia
cancer radiotherapy
Central Nervous System Tumor
Child
conference abstract
Controlled Study
Death
electronic medical record
employer
Female
Follow Up
fraud
housing
Human
Hwang L
immigration
International Journal Of Radiation Oncology Biology Physics
Lee H J
Liu K X
lowest income group
Major Clinical Study
Male
Medical Record Review
Mental Stress
Neuroblastoma
Olch A J
Oncology 2019 List
Organization
Pain
Poverty
race
radiation oncologist
Radiotherapy
Retrospective Study
Rhabdomyosarcoma
School Child
South and Central America
Terminal Care
vulnerable population
Wong K
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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June 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2019 List
URL Address
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/jim-2018-000974.461</a>
Dublin Core
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Title
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Development and integration of a perinatal palliative care program at a tertiary care center
Publisher
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Journal of Investigative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
hospice; newborn; anencephalus; intensive care; clergy; nurse; social worker; comfort; practice guideline; neonatologist; tertiary care center; conference abstract; human; child; female; controlled study; perinatal care; palliative therapy; abortion; electronic medical record; fetus malformation; Oklahoma; prenatal diagnosis
Creator
An entity primarily responsible for making the resource
Shah B A; May R; White L; Wlodaver A
Description
An account of the resource
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law stating 'it is the duty of the physician to inform the woman who carries a fetus with anomalies that perinatal hospice services are available and that this is an alternative to abortion'. We aim to describe the process of developing a perinatal palliative care (PPC) program for newborns with prenatal diagnoses of life-limiting conditions. Methods used Focus groups were conducted with responsible parties. Existing resources were identified. Implementation approaches were discussed. Summary of results The need for a PPC team was identified. Nurses, neonatologists, chaplains, social workers and child life specialists were integrated into this service with the support of an existing pediatric palliative care team. A new PPC program was introduced. Prenatal consults initiated by maternal-fetal medicine are an integral part of the prenatal care. Options of intensive care versus comfort care are offered. A neonatologist attends all these deliveries. The newborn stays with the mother. Special nurses were assigned for comfort care in the mother's room. Guidelines and specific PPC orders are now available in the electronic medical record. Examples are listed in the table 1. A website was created to inform referring physicians about this new program. Conclusions PPC was successfully established at a regional tertiary center. Parents of newborns diagnosed with lethal conditions have the choice of often non-beneficial intensive care or care focused on comfort after birth. This specialized care allows parents to celebrate the limited life of their precious newborns. Providers across the state have now access to a referral center offering perinatal neonatal palliative care. (Table Presented).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">10.1136/jim-2018-000974.461</a>
2019
Abortion
anencephalus
Child
Clergy
Comfort
conference abstract
Controlled Study
electronic medical record
Female
Fetus Malformation
Hospice
Human
Intensive Care
Journal Of Investigative Medicine
June 2019 List
May R
Neonatologist
Newborn
Nurse
Oklahoma
Palliative Therapy
Perinatal Care
Practice Guideline
Prenatal Diagnosis
Shah B A
Social Worker
tertiary care center
White L
Wlodaver A