1
40
26
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December 2021 List
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<a href="http://doi.org/10.1177/08258597211046735" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08258597211046735</a>
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Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
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Journal of Palliative Care
Date
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2021
Subject
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palliative care; perinatal palliative care; comfort care; end of life care; life limiting fetal conditions; vulnerable babies
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Tewani KG; Jayagobi PA; Chandran S; Anand AJ; Thia EWH; Bhatia A; Bujal R; Khoo PC; Quek BH; Tagore S; Chua MC
Description
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Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed 'Lethal' fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.
Identifier
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<a href="http://doi.org/10.1177/08258597211046735" target="_blank" rel="noreferrer noopener">10.1177/08258597211046735</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).
2021
Anand AJ
Bhatia A
Bujal R
Chandran S
Chua MC
Comfort Care
December 2021 List
End Of Life Care
Jayagobi PA
Journal Of Palliative Care
Khoo PC
life limiting fetal conditions
Palliative Care
Perinatal Palliative Care
Quek BH
Tagore S
Tewani KG
Thia EWH
vulnerable babies
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.2147/amep.s334872" target="_blank" rel="noreferrer noopener">http://doi.org/10.2147/amep.s334872</a>
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Ongoing Value and Practice Improvement Outcomes from Pediatric Palliative Care Education: The Quality of Care Collaborative Australia
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Advances in Medical Education and Practice
Date
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2021
Subject
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education outcomes; evaluation; medical education; palliative care; pediatrics; practice improvements
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Slater PJ; Osborne CJ; Herbert AR
Description
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PURPOSE: Novice and experienced professionals who care for children with life limiting conditions throughout Australia were provided with pediatric palliative care (PPC) education through the Quality of Care Collaborative Australia (QuoCCA). Impact evaluation has shown this education to be beneficial. This study examines the longer term outcomes reported by the participants more than 4 months following education. METHODS: An online survey measuring quantitative and qualitative education outcomes was sent to all participants of QuoCCA 2 education throughout Australia, at least 4 months following their education. There were 152 respondents between February 2018 and June 2020. RESULTS: More than 4 months after the QuoCCA education, 98% of respondents rated it as extremely valuable or valuable and 78% of respondents rated it extremely or very helpful in improving clinical practice. Improvements in knowledge, skills or confidence were reported by 90% or more respondents in the areas of PPC referral, responding to psychosocial needs, the benefits of the PPC approach, PPC resources and communication skills. Between 84% and 89% of respondents reported improvements in advance care planning, assessment and intervention, responding to physical needs, supporting spiritual needs and supporting health professionals and self care. Providing bereavement care improved in 85% of responses. The most valuable aspects of the education, changes in practice and barriers to the implementation of learning were discussed. CONCLUSION: The interprofessional QuoCCA education in PPC continued to provide value and clinical practice improvements for the majority of respondents more than four months after the session. Respondents particularly mentioned improvements in awareness of the network of care, the practical management of patients and communication skills. Reflection on clinical practice, in a proactive clinical learning environment, enabled the translation of education into improvements to the quality of PPC.
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<a href="http://doi.org/10.2147/amep.s334872" target="_blank" rel="noreferrer noopener">10.2147/amep.s334872</a>
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2021
Advances in Medical Education and Practice
December 2021 List
education outcomes
Evaluation
Herbert AR
Medical Education
Osborne CJ
Palliative Care
Pediatrics
practice improvements
Slater PJ
-
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December 2021 List
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<a href="http://doi.org/10.1002/pbc.29391" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.29391</a>
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Palliative care is not associated with decreased intensity of care: Results of a chart review from a large children's hospital
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Pediatric Blood & Cancer
Date
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2021
Subject
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children; hospice; oncology; palliative care; pediatrics; treatment intensity
Creator
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Sedig LK; Spruit JL; Southwell J; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R
Description
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BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates "giving up." This study examined if palliative care involvement was associated with a decreased intensity of care at the end of life for children with malignancy at a large academic center with a well-established palliative care program. PROCEDURE: This is a retrospective chart review that measured intensity of care as the number of emergency department visits, hospital days, and intensive care unit days in the last one and three months of life. The data were compared for patients with and without palliative care involvement and with and without hospice involvement. RESULTS: Palliative involvement was not associated with a decrease in the intensity of care in the last three months of life. Hospice care was associated with a decreased intensity of care. These results held true in analyses adjusted for age at death, gender, and type of malignancy. CONCLUSIONS: These data can reassure patients, families, and providers that palliative involvement does not necessitate decreased intensity of care. Patients and families often choose hospice care to decrease the amount of time spent at the hospital and it was associated with meeting that goal.
Identifier
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<a href="http://doi.org/10.1002/pbc.29391" target="_blank" rel="noreferrer noopener">10.1002/pbc.29391</a>
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2021
Children
Cousino MK
December 2021 List
Hospice
Hutchinson R
McCaffery H
Oncology
Palliative Care
Paul TK
Pediatric Blood & Cancer
Pediatrics
Pituch K
Sedig LK
Southwell J
Spruit JL
treatment intensity
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December 2021 List
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<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738211045238</a>
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Neuropalliative Care for Neonates
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Journal of Child Neurology
Date
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2021
Subject
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infant; neonate; neuropalliative care; pediatric; preterm; quality of life
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Rent SM; Bidegain M; Bost MH; Hornik C; Lemmon ME
Description
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Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.
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<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">10.1177/08830738211045238</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).
2021
Bidegain M
Bost MH
December 2021 List
Hornik C
Infant
Journal of Child Neurology
Lemmon ME
Neonate
neuropalliative care
Pediatric
preterm
Quality Of Life
Rent SM
-
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.1055/a-1682-2798" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/a-1682-2798</a>
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The Role of Perinatal Palliative Care in Fetal Neurology
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American Journal of Perinatology
Date
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2021
Subject
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fetal; fetal neurology; neonatal; neurology; Palliative Care; perinatal palliative care
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Rent SM; Lemmon ME; Ellestad S; Bidegain M
Description
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Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex clinical neurologic clinical scenarios. The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should all prompt involvement of a fetal palliative care team to work alongside obstetric and neonatal providers. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions, which have a wide range of severity and difficult to predict short and long-term outcomes. While many of these conditions will lead to the birth of an infant with neurodevelopmental challenges, few will result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help guide and support families through pre- and postnatal decision making and through bereavement care in the setting of fetal or neonatal death. Early involvement of a tailored palliative care team can provide a more holistic approach to the counseling process, facilitate planning and conversations, and ensure that the family's goals and wishes are acknowledged throughout the infant's care trajectory.
Identifier
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<a href="http://doi.org/10.1055/a-1682-2798" target="_blank" rel="noreferrer noopener">10.1055/a-1682-2798</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).
2021
American Journal of Perinatology
Bidegain M
December 2021 List
Ellestad S
fetal
fetal neurology
Lemmon ME
Neonatal
Neurology
Palliative Care
Perinatal Palliative Care
Rent SM
-
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Title
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.3390/children8100902" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8100902</a>
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Pediatric Palliative Care Pharmacy Pearls-A Focus on Pain and Sedation
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Children
Date
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2021
Subject
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pediatrics; palliative care; pain; pharmacology; opioids
Creator
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Placencia J; Madden K
Description
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Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the absorption, distribution, metabolism, and elimination of medications are commonly used in palliative care. Adding to that complexity, certain medications have different effects in the pediatric patient compared to the adult patient. Being aware of the pharmacokinetic changes, impact on neurodevelopment and unique medication factors that are present in pediatric patients helps clinicians treat the pediatric palliative care patient in the best and safest way possible.
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<a href="http://doi.org/10.3390/children8100902" target="_blank" rel="noreferrer noopener">10.3390/children8100902</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).
2021
Children
December 2021 List
Madden K
Opioids
Pain
Palliative Care
Pediatrics
pharmacology
Placencia J
-
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.1016/j.jpeds.2021.09.062" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2021.09.062</a>
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Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness: A Study Using the RAND/UCLA Appropriateness Method
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The Journal of Pediatrics
Date
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2021
Subject
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End-of-life care; pediatric palliative care; pediatrics; quality indicators; quality of life
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Piette V; Deliens L; van der Werff Ten Bosch J; Beernaert K; Cohen J
Description
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OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. STUDY DESIGN: Modified RAND/University of California at Los Angeles (RAND/UCLA) appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n=19), neurology (n=21), and genetic/congenital (n=17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with Interpercentile Range Adjusted for Symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice. RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurological conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurological conditions, and 23 for genetic/congenital conditions. CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2021.09.062" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2021.09.062</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).
2021
Beernaert K
Cohen J
December 2021 List
Deliens L
End-of-life Care
Pediatric Palliative Care
Pediatrics
Piette V
Quality Indicators
Quality Of Life
The Journal Of Pediatrics
van der Werff Ten Bosch J
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Title
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.3390/children8100905" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8100905</a>
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Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study
Publisher
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Children
Date
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2021
Subject
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pediatric; prospective study; palliative care; multicenter study; validation; factor analysis; patient-centered outcome measures
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Pelke S; Wager J; Claus BB; Stening K; Zernikow B; Reuther M
Description
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Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool's sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.
Identifier
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<a href="http://doi.org/10.3390/children8100905" target="_blank" rel="noreferrer noopener">10.3390/children8100905</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).
2021
Children
Claus BB
December 2021 List
Factor Analysis
Multicenter Study
Palliative Care
patient-centered outcome measures
Pediatric
Pelke S
Prospective Study
Reuther M
Stening K
VALIDATION
Wager J
Zernikow B
-
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December 2021 List
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December 2021 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2020-0066" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2020-0066</a>
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Point-of-Care Complexity Screening Algorithm to Identify Children With Medical Complexity
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Hospital Pediatrics
Date
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2021
Subject
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Algorithms; Child; Child Health Services; Chronic Disease; Disabled Children; Humans; Point-of-Care Systems
Creator
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Parente V; Parnell L; Childers J; Spears T; Jarrett V; Ming D
Description
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OBJECTIVES: For pediatric complex care programs to target enhanced care coordination services to the highest-risk patients, it is critical to accurately identify children with medical complexity (CMC); however, no gold standard definition exists. The aim of this study is to describe a point-of-care screening algorithm to identify CMC with high health care use, a group that may benefit the most from improved care coordination. METHODS: From July 1, 2015, to June 30, 2016 (fiscal year 2016 [FY16]), a medical complexity screening algorithm was implemented by a pediatric complex care program at a single tertiary care center for hospitalized patients at the time of admission. Using the screening algorithm, we categorized inpatients into 1 of 3 groups: CMC, children with special health care needs (CSHCN), or previously healthy (PH) children. Inpatient resource use for FY16 and FY17 encounters was extracted for children screened in FY16. RESULTS: We categorized 2187 inpatients in FY16 into the 3 complexity groups (CMC = 77; CSHCN = 1437; PH children = 673). CMC had more complex chronic conditions (median = 6; interquartile range [IQR] 4-11) than CSHCN (median = 1; IQR 0-2) and PH children (median = 0; IQR 0-0). CMC had greater per-patient and per-encounter hospital use than CSHCN and PH children. CMC and children with ≥4 complex chronic conditions had comparable levels of resource use. CONCLUSIONS: By implementation of a point-of-care screening algorithm, we identified CMC with high health care use. By using this algorithm, it was feasible to identify hospitalized CMC that could benefit from care coordination by a pediatric complex care program.
Identifier
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<a href="http://doi.org/10.1542/hpeds.2020-0066" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0066</a>
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2021
algorithms
Child
Child Health Services
Childers J
Chronic Disease
December 2021 List
Disabled Children
Hospital Pediatrics
Humans
Jarrett V
Ming D
Parente V
Parnell L
Point-of-Care Systems
Spears T
-
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December 2021 List
Text
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December 2021 List
URL Address
<a href="http://doi.org/10.1186/s12909-021-02982-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12909-021-02982-4</a>
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Children's palliative care education and training: developing an education standard framework and audit
Publisher
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BMC Medical Education
Date
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2021
Subject
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Child; Children; Clinical Competence; Curriculum; Education; End of life care; Learning; nursing education; Paediatric; Palliative care; Teaching; Training
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Neilson S; Randall D; McNamara K; Downing J
Description
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BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations the need for a revised children's palliative care competency framework was recognized. A Children's Palliative Care Education and Training Action Group, comprising champions in the field, was formed across UK and Ireland in 2019 to take this work forward. Their aim was to agree core principles of practice in order to standardize children's palliative care education and training. METHODS: Over four meetings the Action Group reviewed sources of evidence and guidance including palliative care competency documents and UK and Ireland quality and qualification frameworks. Expected levels of developing knowledge and skills were then agreed and identified competencies mapped to each level. The mapping process led to the development of learning outcomes, local indicative programme content and assessment exemplars. RESULTS: Four sections depicting developing levels of knowledge and skills were identified: Public Health, Universal, Core, Specialist. Each level has four learning outcomes: Communicating effectively, Working with others in and across various settings, Identifying and managing symptoms, Sustaining self-care and supporting the well-being of others. An audit tool template was developed to facilitate quality assurance of programme delivery. The framework and audit tool repository is on the International Children's Palliative Care Network website for ease of international access. CONCLUSIONS: The framework has received interest at UK, Ireland and International launches. While there are education programmes in children's palliative care this is the first international attempt to coordinate education, to address lay carer education and to include public health.
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<a href="http://doi.org/10.1186/s12909-021-02982-4" target="_blank" rel="noreferrer noopener">10.1186/s12909-021-02982-4</a>
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2021
BMC medical education
Child
Children
Clinical Competence
Curriculum
December 2021 List
Downing J
Education
End Of Life Care
Learning
McNamara K
Neilson S
nursing education
Paediatric
Palliative Care
Randall D
Teaching
Training
-
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December 2021 List
Text
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December 2021 List
URL Address
<a href="http://doi.org/10.1007/s40124-021-00254-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s40124-021-00254-9</a>
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Title
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True Resilience: A Look Inside COVID's Effect on Children with Medical Complexity and Their Families
Publisher
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Current Pediatrics Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Children with medical complexity; Covid-19; family impact; pediatrics; Technology dependence
Creator
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Mitchell SM
Description
An account of the resource
PURPOSE OF REVIEW: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant difficulties already experienced by these patients and their families. Increased awareness will lead to improvement in the disparities experienced by this population and improve the ability of healthcare providers to care for them. RECENT FINDINGS: The number of children living with medical complexity is rapidly increasing. They face unique circumstances which can lead to compromise in care. This population is especially at risk for complications related to COVID, so may have a more prolonged admission with more morbidities. Children of ethnic minorities are also more impacted by severe illness and death. Finally, access to palliative care has been limited, which is a huge part in caring for these children who have life-long medical care needs. SUMMARY: Children with medical complexity have unique circumstances and the entirety of the effect of the coronavirus pandemic on this group is unknown. While the medical world has found ways to adapt, these changes can increase disparities for this population. Given the increase in number of children with medical complexity living in the USA, it is important to continue to consider the unique challenges they face in the current pandemic and improve the care delivery for both the child and his or her family.
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<a href="http://doi.org/10.1007/s40124-021-00254-9" target="_blank" rel="noreferrer noopener">10.1007/s40124-021-00254-9</a>
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2021
Children With Medical Complexity
COVID-19
Current Pediatrics Reports
December 2021 List
family impact
Mitchell SM
Pediatrics
Technology dependence
-
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.1177/00302228211048667" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/00302228211048667</a>
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Attitudes and Experiences Towards Death of Healthcare Professionals Working in Neonatal Intensive Care Units
Publisher
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Omega
Date
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2021
Subject
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death; neonatal intensive care units; experiences; healthcare professionals; attitudes
Creator
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Metallinou D; Bardo S; Kitsonidou I; Sotiropoulou N
Description
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BACKGROUND: Death is an integral part of neonatal intensive care units' (NICUs) environment and little it is known about NICU's staff death concepts. AIM: To investigate attitudes and experiences towards death of healthcare professionals (HPs) working in NICUs. DESIGN: Totally 131 participants from six hospitals were included in the study. Research instruments were a questionnaire designed by the authors and the scale Death Attitude Profile-Revised. RESULTS: Gender, marital and educational status, frequent contact with end of life neonates and provision of neonatal end of life care during the research period correlated significantly with dimensions of DAP-R. Impact of NICU neonatal deaths on personal life correlated negatively with fear of death and positively with escape acceptance. CONCLUSION: Evaluating the interrelationships among personal characteristics, attitudes and experiences towards death among NICU HPs may increase our understanding concerning working with dying neonates and provide direction for educational intervention and continuing professional support.
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<a href="http://doi.org/10.1177/00302228211048667" target="_blank" rel="noreferrer noopener">10.1177/00302228211048667</a>
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2021
Attitudes
Bardo S
Death
December 2021 List
Experiences
Healthcare Professionals
Kitsonidou I
Metallinou D
Neonatal Intensive Care Units
Omega
Sotiropoulou N
-
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December 2021 List
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Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1097/jnn.0000000000000615" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/jnn.0000000000000615</a>
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End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
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Journal of Neuroscience Nursing
Date
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2021
Subject
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concurrent hospice care; healthcare services; infants; latent class analysis; neurological conditions; nursing; pediatric hospice care; pediatrics
Creator
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Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Fortney CA
Description
An account of the resource
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.
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<a href="http://doi.org/10.1097/jnn.0000000000000615" target="_blank" rel="noreferrer noopener">10.1097/jnn.0000000000000615</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).
2021
concurrent hospice care
December 2021 List
Fortney CA
healthcare services
Infants
Journal of Neuroscience Nursing
Latent Class Analysis
Lindley LC
Mendola A
Mooney-Doyle K
Naumann WC
Neurological Conditions
Nursing
Pediatric Hospice Care
Pediatrics
Svynarenko R
-
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December 2021 List
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December 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.10.005</a>
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Factors associated with quality of life in children receiving pediatric palliative care
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Journal of Pain and Symptom Management
Date
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2021
Subject
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caregiver depression; children; life-limiting condition; Pediatric palliative care; quality of life; underlying disease
Creator
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Lee J; Kim MS; Kim CH; Moon YJ; Choi YH
Description
An account of the resource
CONTEXT: Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. OBJECTIVES: To examine the clinical and family factors associated with HRQoL of children with LLC METHODS: This was a cross-sectional study of 136 pediatric patients with LLC who were enrolled in the PPC services at Seoul National University Hospital in South Korea. Patients' HRQoL was measured using the Pediatric Quality of Life 4.0. Clinical and family characteristics were gathered from the medical records and PPC registry database. RESULTS: Most children with LLC have a poor HRQoL at their enrollment for PPC services with significant variation in their total HRQoL scores according to the diagnostic categories. Patients with nonmalignant conditions showed significantly lower HRQoL scores than patients with malignancy. Lower HRQoL scores were associated with more caregiver depressive symptoms. In a multivariable regression model, total HRQoL scores of patients were significantly associated with diagnostic categories and caregiver's depressive symptoms after controlling for other clinical and family variables. Physical health summary scores were significantly associated with diagnostic categories and caregiver depressive symptoms. Psychosocial health summary scores were significantly associated with patient location and caregiver's depressive symptoms. CONCLUSION: The HRQoL of children with LLC receiving PPC differed among underlying disease categories. Lower HRQoL was associated with more caregiver depressive symptoms. These findings suggest the needs for optimized intervention in palliative care for children with nonmalignant conditions and family-centered intervention to address caregivers' psychosocial problems.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.10.005</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).
2021
caregiver depression
Children
Choi YH
December 2021 List
Journal of Pain and Symptom Management
Kim CH
Kim MS
Lee J
Life-limiting Condition
Moon YJ
Pediatric Palliative Care
Quality Of Life
underlying disease
-
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Title
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December 2021 List
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December 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.09.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.09.013</a>
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Participatory development of a modular advance care planning program in pediatric palliative care (MAPPS)
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Advance care planning; advance directives; decision-making; end-of-life; palliative care; pediatric
Creator
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Knochel K; Zaimovic V; Gatzweiler B; Hein KK; Heitkamp N; Monz A; Reimann D; Borasio GD; Führer M
Description
An account of the resource
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals. METHODS: Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analysed, systematized and translated these results into a pedACP program draft, which was revised by the participants. RESULTS: The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility. CONCLUSION: Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.09.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.09.013</a>
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2021
Advance Care Planning
Advance Directives
Borasio GD
December 2021 List
Decision-making
end-of-life
Führer M
Gatzweiler B
Hein KK
Heitkamp N
Journal of Pain and Symptom Management
Knochel K
Monz A
Palliative Care
Pediatric
Reimann D
Zaimovic V
-
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Title
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December 2021 List
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Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-049968</a>
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Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships
Publisher
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Pediatrics
Date
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2021
Subject
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Hospice; Medicaid; Palliative care; Palliative Medicine; Pediatrics
Creator
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Johnson KA; Morvant A; James K; Lindley LC
Description
An account of the resource
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .
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<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-049968</a>
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2021
December 2021 List
Hospice
James K
Johnson KA
Lindley LC
Medicaid
Morvant A
Palliative Care
Palliative Medicine
Pediatrics
-
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.1111/jspn.12360" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jspn.12360</a>
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Utilizing high-fidelity simulation to improve newly licensed pediatric intensive care unit nurses' experiences with end-of-life care
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Journal for Specialists in Pediatric Nursing
Date
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2021
Subject
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end-of-life; pediatric intensive care; high-fidelity simulation; new nurses
Creator
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Hillier MM; DeGrazia M; Mott S; Taylor M; Manning MJ; O'Brien M; Schenkel SR; Cole A; Hickey PA
Description
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PURPOSE: New pediatric intensive care unit (PICU) nurses face distinct challenges in transitioning from the protected world of academia to postlicensure clinical practice; one of their greatest challenges is how to support children and their caregivers at the end-of-life (EOL). The purpose of this quality improvement project was to create, implement, and assess the efficacy of a high-fidelity EOL simulation, utilizing the "Debriefing with Good Judgment" debriefing model. DESIGN AND METHODS: Participants were nurses with 4 years or less of PICU experience from a 404-bed quaternary care, free-standing children's hospital in the northeastern United States. Data were collected with the Simulation Effectiveness Tool-Modified (SET-M) and the PICU EOL Simulation Evaluation Survey. RESULTS: Twenty-four nurses participated; the majority (54%) were 25-29 years of age. The SET-M results indicate that the EOL simulation was beneficial to their learning and increased nurse confidence in delivering EOL care. Responding to the EOL Simulation Survey, participants rated high levels of confidence with tasks such as utilizing unit and hospital-based supports, self-care, ability to listen and support families, and medicating their patients at the EOL. PRACTICE IMPLICATIONS: This high-fidelity EOL simulation is a robust teaching tool that serves to support the unmet needs of the PICU nurses who care for dying children. Nurse participants had a unique opportunity to practice procedural and communication skills without risk for patient or family harm. Findings from this project can serve to guide curriculum changes at the undergraduate level as well as provide direction for new nurse orientation classes.
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<a href="http://doi.org/10.1111/jspn.12360" target="_blank" rel="noreferrer noopener">10.1111/jspn.12360</a>
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2021
Cole A
December 2021 List
DeGrazia M
end-of-life
Hickey PA
high-fidelity simulation
Hillier MM
Journal for Specialists in Pediatric Nursing
Manning MJ
Mott S
new nurses
O'Brien M
Pediatric Intensive Care
Schenkel SR
Taylor M
-
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December 2021 List
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December 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2020-002627" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2020-002627</a>
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Primary palliative care integrated model in paediatric ICU: an international cross-sectional study
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BMJ Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
communication; cultural issues; education and training; hospital care; paediatrics; pediatrics; service evaluation
Creator
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Grunauer M; Mikesell C; Bustamante Callejas G
Description
An account of the resource
OBJECTIVES: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary paediatric palliative care (PPC), in which either approach varies depending on the disease trajectory and is provided by the critical care team, might be a fundamental component of the best available standard of care for patients with life-threatening conditions. The objective of this study is to assess how PICUs around the world, implement an IMOC. METHODS: International multicentre cross-sectional observational study. Data was gathered from 34 PICUs from 18 countries in the Americas, Europe, Asia and Africa. Provision of primary PPC was studied for each child admitted at the PICU. We evaluated score differences in each domain of the Initiative for Paediatric Palliative Care (IPPC) curriculum with multilevel generalised linear models. RESULTS: High-income country (HIC) units made up 32.4% of the sample, upper-middle income countries (UMICs) 44.1%, lower-middle income/lower income countries (LMIC/LICs) 23.5%. HICs had four statistically significantly higher IPPC scores compared with UMICs (domains: 1 holistic care; 2 family support, 3B family involvement; 6B grief/bereavement healthcare provider support) and two compared with LMIC/LICs (domains: 6A grief/bereavement family support; 6B grief/bereavement healthcare provider support).HICs had a statistically significant overall higher IPPC score than UMICs. Adjusting for patient/centre characteristics, shorter shifts and multiple comorbidities were associated with higher IPPC scores. CONCLUSIONS: All centres offered some PPC provision and partially applied an IMOC. These results are encouraging, however, differences related to income and patients/unit evidence opportunities for improvement. TRIAL REGISTRATION NUMBER: ISRCTN12556149.
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<a href="http://doi.org/10.1136/bmjspcare-2020-002627" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002627</a>
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2021
BMJ Supportive & Palliative Care
Bustamante Callejas G
Communication
cultural issues
December 2021 List
Education And Training
Grunauer M
Hospital care
Mikesell C
Paediatrics
Pediatrics
Service Evaluation
-
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Title
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December 2021 List
Text
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December 2021 List
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<a href="http://doi.org/10.1111/1471-0528.16976" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/1471-0528.16976</a>
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Title
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The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study
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Bjog
Date
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2021
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advance care planning; fetal anomaly; incurable anomaly; life-limiting fetal diagnosis; perinatal palliative care
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de Barbeyrac C; Roth P; Noël C; Anselem O; Gaudin A; Roumegoux C; Azcona B; Castel C; Noret M; Letamendia E; Stirnemann J; Ville Y; Lapillonne A; Viallard ML; Kermorvant-Duchemin E
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OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal Diagnosis of the Paris-Ile-de-France region. POPULATION: All cases of major and incurable fetal anomaly where limitation of life-sustaining treatments for the neonate was discussed in the prenatal period between 2015 and 2016. METHODS: Cases of congenital defects amenable to perinatal palliative care were prospectively included in each centre. Prenatal diagnosis, decision-making process, type of birth plan, birth characteristics, pregnancy and neonatal outcome were collected prospectively and anonymously. MAIN OUTCOME MEASURE: Final decision reached following discussions in the antenatal period. RESULTS: We identified 736 continuing pregnancies with a diagnosis of a severe fetal condition eligible for TOP. Perinatal palliative care was considered in 102/736 (13.9%) pregnancies (106 infants); discussions were multidisciplinary in 99/106 (93.4%) cases. Prenatal birth plans involved life-sustaining treatment limitation and comfort care in 73/736 (9.9%) of the pregnancies. The main reason for planning palliative care at birth was short-term inevitable death in 39 cases (53.4%). 76/106 (71.7%) infants were born alive. 18/106 (17%) infants were alive at last follow-up, including 4 with a perinatal palliative care birth plan. CONCLUSIONS: Only a small proportion of severe and incurable fetal disorders were potentially amenable to limitation of life-sustaining interventions. Perinatal palliative care may not be considered as an universal alternative to termination of pregnancy.
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<a href="http://doi.org/10.1111/1471-0528.16976" target="_blank" rel="noreferrer noopener">10.1111/1471-0528.16976</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).
2021
Advance Care Planning
Anselem O
Azcona B
Bjog
Castel C
de Barbeyrac C
December 2021 List
fetal anomaly
Gaudin A
incurable anomaly
Kermorvant-Duchemin E
Lapillonne A
Letamendia E
life-limiting fetal diagnosis
Noël C
Noret M
Perinatal Palliative Care
Roth P
Roumegoux C
Stirnemann J
Viallard ML
Ville Y
-
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Title
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December 2021 List
Text
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December 2021 List
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<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2021.27.8.386</a>
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Title
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Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
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International Journal of Palliative Nursing
Date
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2021
Subject
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Care coordinator; Case Management; Curriculum; Delivery of Health Care; Family; Fetal diagnosis; Grief; Newborn Infant; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Qualitative Research
Creator
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Côté-Arsenault D; Denney-Koelsch E; Elliott G
Description
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BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. AIMS: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. METHODS: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. FINDINGS: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. CONCLUSIONS: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.
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<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.8.386</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).
2021
Care coordinator
Case Management
Côté-Arsenault D
Curriculum
December 2021 List
Delivery of Health Care
Denney-Koelsch E
Elliott G
Family
Fetal Diagnosis
Grief
International Journal of Palliative Nursing
Newborn Infant
Palliative Care
Perinatal Care
Perinatal Palliative Care
Pregnancy
Qualitative Research
-
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Title
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December 2021 List
Text
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December 2021 List
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<a href="http://doi.org/10.3390/children8100839" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8100839</a>
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Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study
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Children
Date
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2021
Subject
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pediatrics; palliative care; electronic medical record; codesign; electronic health record; participatory design; shared health record; software development; think-aloud
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Busse TS; Jux C; Kernebeck S; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
Description
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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.
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<a href="http://doi.org/10.3390/children8100839" target="_blank" rel="noreferrer noopener">10.3390/children8100839</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).
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
-
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.1007/s00520-021-06623-w" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-021-06623-w</a>
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Title
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Pediatric palliative care at home by Home Care Unit: how home nurses feel?
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Supportive Care in Cancer
Date
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2021
Subject
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Pediatrics; Palliative care; Home-based care services; Primary nursing care
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Bertrand A; Veyet V; Goy F; Cervos M; Schell M
Description
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PURPOSE: Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. METHODS: This was a retrospective, observational, single-center study. Home nurses who had provided palliative pediatric care in the past 16 months were included. RESULTS: Fifty-six questionnaires were sent out (response rate of 44.6%). Eight home nurses had never provided pediatric palliative care. Three-quarters of the home nurses (76%) acknowledged having misgivings accepting these duties. The factors that facilitated providing this care were the availability of the HCU doctor and nurses, the proactiveness of the HCU team, and house calls. In 76% of cases, the involvement of the home nurses exceeded the strictly professional setting. Forty-six percent of the home nurses were amenable to undertaking another pediatric palliative care engagement, although 48% deemed the remuneration to be somewhat lacking. CONCLUSION: The analysis allowed us to identify several prerequisites for these care engagements: the availability and the proactiveness of the HCU team, communication, and planning. This study showed the pronounced personal involvement of home nurses in complex situations, with both the child and their entire family. Home nurses appear to be skilled at using the resources available to manage the exhaustion that can arise with such an engagement. Facilitating and respecting the choice to stay home of the child and their family was meaningful to them. The personal and professional enrichment were a source of motivation despite certain limitations (availability, remuneration).
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<a href="http://doi.org/10.1007/s00520-021-06623-w" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06623-w</a>
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2021
Bertrand A
Cervos M
December 2021 List
Goy F
Home-based care services
Palliative Care
Pediatrics
Primary nursing care
Schell M
Supportive Care In Cancer
Veyet V
-
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Title
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December 2021 List
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December 2021 List
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<a href="http://doi.org/10.1002/cnr2.1551" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cnr2.1551</a>
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Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer
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Cancer Reports
Date
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2021
Subject
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pediatrics; cancer; symptom control; cannabidiol; cannabis; tetrahydrocannabinol
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Oberoi S; Protudjer JLP; Rapoport A; Rassekh SR; Crooks B; Siden H; Decker K; Ananth P; Chapman S; Balneaves LG; Vanan MI; Kelly LE
Description
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Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for medical purposes among children with cancer. Methods A self-administered, voluntary, cross-sectional, deidentified online survey was sent to all pediatric oncologists and palliative care physicians in Canada between June and August 2020. Survey domains included education, knowledge, and concerns about cannabis, views on its effectiveness, and the importance of cannabis-related research. Data were analyzed using descriptive statistics. Results In total, 122/259 (47.1%) physicians completed the survey. Although 62.2% of the physicians completed some form of training about medical cannabis, nearly all (95.8%) desired to know more about the dosing, side effects, and safety of cannabis. Physicians identified a potential role of cannabis in the management of nausea and vomiting (85.7%), chronic pain (72.3%), cachexia/poor appetite (67.2%), and anxiety or depression (42.9%). Only four (0.3%) physicians recognized cannabis to be potentially useful as an anticancer agent. Nearly all physicians reported that cannabis-related research for symptom relief is essential (91.5%) in pediatric oncology, whereas 51.7% expressed that future studies are necessary to determine the anticancer effects of cannabis. Conclusions Our findings indicate that most pediatric oncologists and palliative care physicians recognize a potential role for cannabis in symptom control in children with cancer. Well-conducted studies are required to create evidence for cannabis use and promote shared decision making with pediatric oncology patients and their caregivers.
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<a href="http://doi.org/10.1002/cnr2.1551" target="_blank" rel="noreferrer noopener">10.1002/cnr2.1551</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).
2021
Ananth P
Balneaves LG
Cancer
Cancer Reports
Cannabidiol
Cannabis
Chapman S
Crooks B
December 2021 List
Decker K
Kelly LE
Medicinal Cannabis
Oberoi S
Pediatrics
Protudjer JLP
Rapoport A
Rassekh SR
Siden H
Symptom Control
tetrahydrocannabinol
Vanan MI
-
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Title
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December 2021 List
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December 2021 List
URL Address
<a href="http://doi.org/10.1503/cmaj.202169" target="_blank" rel="noreferrer noopener">http://doi.org/10.1503/cmaj.202169</a>
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Title
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Improving the regulation of medical cannabis in Canada to better serve pediatric patients
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CMAJ
Date
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2021
Subject
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Canada; Cannabis; Drug regulation; Health policy; Pediatrics
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Huntsman RJ; Kelly LE; Alcorn J; Appendino JP; Bélanger RE; Crooks B; Finkelstein Y; Gilpin A; Lewis E; Litalien C; Jacobs J; Moore-Hepburn C; Oberlander T; Rassekh SR; Repetski AE; Rieder MJ; Shackelford A; Siden H; Szafron M; ‘t Jong GW; Vaillancourt R
Description
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Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware of evidence that suggests medical cannabis provides
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<a href="http://doi.org/10.1503/cmaj.202169" target="_blank" rel="noreferrer noopener">10.1503/cmaj.202169</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).
‘t Jong GW
2021
Alcorn J
Appendino JP
Bélanger RE
Canada
Cannabis
CMAJ
Crooks B
December 2021 List
Drug regulation
Finkelstein Y
Gilpin A
Health Policy
Huntsman RJ
Jacobs J
Kelly LE
Lewis E
Litalien C
Moore-Hepburn C
Oberlander T
Pediatrics
Rassekh SR
Repetski AE
Rieder MJ
Shackelford A
Siden H
Szafron M
Vaillancourt R
-
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Title
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December 2021 List
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December 2021 List
URL Address
<a href="http://doi.org/10.1515/jtm-2021-0005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1515/jtm-2021-0005</a>
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The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol
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Journal of Transition Medicine
Date
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2021
Subject
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adolescents; transition; young adults; case study; complex care; qualitative research; transfer
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Li L; Carter N; Ploeg J; Gorter JW; Strachan PH
Description
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Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.
Identifier
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<a href="http://doi.org/10.1515/jtm-2021-0005" target="_blank" rel="noreferrer noopener">10.1515/jtm-2021-0005</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).
2021
Adolescents
Carter N
Case Study
complex care
December 2021 List
Gorter JW
Journal of Transition Medicine
Li L
Ploeg J
Qualitative Research
Strachan PH
Transfer
Transition
Young Adults
-
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Title
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December 2021 List
Text
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Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2021.27457</a>
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Title
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Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness
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JAMA network open
Date
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2021
Subject
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challenges; children; hospice; nurse perspectives; serious illness
Creator
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Porter AS; Zalud K; Applegarth J; Woods C; Gattas M; Rutt E; Williams K; Baker JN; Kaye EC
Description
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Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.27457</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).
2021
Applegarth J
Baker JN
challenges
Children
December 2021 List
Gattas M
Hospice
JAMA Network Open
Kaye EC
nurse perspectives
Porter AS
Rutt E
Serious Illness
Williams K
Woods C
Zalud K