1
40
28
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Title
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December 2020 List
Text
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December 2020 List
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<a href="http://doi.org/10.1186/s12904-020-00672-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00672-4</a>
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Family experiences with palliative care for children at home: a systematic literature review
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BMC Palliative Care
Date
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2020
Subject
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Child; Family; Family centred care; Home care; Life limiting condition; Life threatening condition; Parents; Pediatric palliative care; Ppc; Sibling
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Winger A; Kvarme LG; Løyland B; Kristiansen C; Helseth S; Ravn IH
Description
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BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.
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<a href="http://doi.org/10.1186/s12904-020-00672-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00672-4</a>
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2020
BMC Palliative Care
Child
December 2020 List
Family
Family centred care
Helseth S
Home Care
Kristiansen C
Kvarme LG
Life limiting condition
Life threatening condition
Løyland B
Parents
Pediatric Palliative Care
Ppc
Ravn IH
Sibling
Winger A
-
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December 2020 List
Text
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December 2020 List
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<a href="http://doi.org/10.1007/s00431-020-03824-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-020-03824-z</a>
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Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals
Publisher
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European Journal of Pediatrics
Date
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2020
Subject
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Advance care planning; Communication; Goals of care; Pediatric palliative care
Creator
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Verberne LM; Fahner JC; Sondaal SFV; Schouten-van Meeteren AYN; de Kruiff CC; van Delden JJM; Kars MC
Description
An account of the resource
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: • Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: • Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. • Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
Identifier
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<a href="http://doi.org/10.1007/s00431-020-03824-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03824-z</a>
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2020
Advance Care Planning
Communication
de Kruiff CC
December 2020 List
European Journal of Pediatrics
Fahner JC
Goals Of Care
Kars MC
Pediatric Palliative Care
Schouten-Van Meeteren AYN
Sondaal SFV
van Delden JJM
Verberne LM
-
Dublin Core
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000002585" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000002585</a>
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Title
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Therapeutic Alliance Between Bereaved Parents and Physicians in the PICU
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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bereavement; child; parent; Pediatric intensive care unit; physician; race; therapeutic alliance
Creator
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Suttle M; Hall MW; Pollack MM; Berg RA; McQuillen PS; Mourani PM; Sapru A; Carcillo JA; Startup E; Holubkov R; Dean JM; Notterman DA; Meert KL
Description
An account of the resource
OBJECTIVES: Therapeutic alliance is the collaborative bond that develops between patients/families and healthcare providers. Our objective is to determine the extent of therapeutic alliance bereaved parents perceive to have occurred with their child's physicians during their child's PICU stay, and associated factors. DESIGN: Multicenter observational study. SETTING: Eight children's hospitals affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Parents greater than or equal to 18 years old whose child died in a PICU (including cardiac ICU). INTERVENTIONS: Bereaved parents completed the Human Connection Scale, a 16-item measure of therapeutic alliance, 6 months after their child's death. Human Connection Scale scores range from 16 to 64 with higher scores indicating greater alliance. Parents provided sociodemographic data, and medical records were reviewed for the child's clinical characteristics. MEASUREMENTS AND MAIN RESULTS: Two-hundred and thirty-three parents of 157 deceased children responded to the Human Connection Scale with greater than or equal to 80% item completion. Among parents, 146 (62.7%) were female, 155 (66.5%) were White and 46 (19.7%) were Black, 175 (75.1%) were married, and 209 (89.7%) had at least a high-school education. Among children, median age at the time of death was 5.9 years (interquartile range, 0.64-13.9 yr) and 114 (72.6%) died after limitation or withdrawal of life support. Mean Human Connection Scale score was 51.4 ± 11.1 for all parents, 52.6 ± 9.0 for White parents, and 47.0 ± 13.7 for Black parents. In multivariable modeling predicting Human Connection Scale scores, race was the only parent or child characteristic in the final model. Human Connection Scale scores were significantly different (-4.56; 95% CI, -8.53 to -0.6; p = 0.025) between the Black and White parents with items about trust, care, and honest communication showing the greatest mean difference. CONCLUSIONS: Among parents bereaved in the PICU, therapeutic alliance with physicians is moderately high. Future research should identify strategies to strengthen therapeutic alliance with Black parents and examine the role of alliance on bereaved parents' health outcomes.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000002585" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002585</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).
2020
Bereavement
Berg RA
Carcillo JA
Child
Dean JM
December 2020 List
Hall MW
Holubkov R
McQuillen PS
Meert KL
Mourani PM
Notterman DA
Parent
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Physician
Pollack MM
race
Sapru A
Startup E
Suttle M
therapeutic alliance
-
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Title
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-0818L</a>
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Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Publisher
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Pediatrics
Date
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2020
Subject
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Clinical Decision-Making/ethics; patient advocacy; patient transfer/ethics; withholding treatment
Creator
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Ross LF
Description
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Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States. Copyright © 2020 by the American Academy of Pediatrics
Identifier
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<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-0818L</a>
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2020
Clinical Decision-Making/ethics
December 2020 List
Patient Advocacy
patient transfer/ethics
Pediatrics
Ross LF
Withholding Treatment
-
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.10.022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.10.022</a>
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Title
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Spanish Adaptation of the Pediatric Memorial Symptom Assessment Scale for Children, Teens, and Caregivers
Publisher
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Journal of Pain and Symptom Management
Date
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2020
Subject
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cancer; Memorial Symptom Assessment Scale; Msas; patient reported outcomes; pediatrics; symptom assessment; symptom distress; validity
Creator
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Requena ML; Orellana L; Cordeiro V; Luna F; Bevilacqua MS; Gomez K; Wolfe J; Dussel V
Description
An account of the resource
CONTEXT: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument. OBJECTIVES: To validate Pediatric-MSAS-Spanish (MSAS-Child, MSAS-Teen, and MSAS-Caregiver versions) in cancer patients treated in two public hospitals in Buenos Aires, Argentina. METHODS: Cross-sectional study, classical psychometric theory. We recruited a convenience sample of 148 caregivers of children ≥2 years old, 51 young children (7 to 12 years) and 48 adolescents (≥13 years). We assessed feasibility, comprehensibility, internal consistency, and convergent and known-groups validity. RESULTS: Pediatric-MSAS-Spanish was feasible, acceptable and comprehensible. Reliability of MSAS-total and subscale scores was satisfactory (Cronbach alpha: 0.90, 0.89, 0.71 respectively for caregiver, teen, and child MSAS-total score). MSAS-total caregiver, teen, and child scores met a priori criteria for convergent validity correlating with Pediatric Quality of Life Inventory total scores (Spearman correlation (r(s))=-0.59, -0.66, and -0.32, respectively) and visual-analogue-wellbeing scores (r(s)=-0.63, -0.46, and -0.4, respectively). Caregiver-teen correlation was strong for total (r(s)=0.78) and physical (r(s)=0.85) scores, and moderate for global distress index (GDI) (r(s)=0.64) and psychological (r(s)=0.45) scores. MSAS-total caregiver-child correlation was moderate (r(s)=0.30) and Kappa analysis showed poor agreement. All MSAS-Caregiver scores and MSAS-Teen total and physical scores differentiated inpatients/outpatients and patients on/off-treatment, while MSAS-Teen psychological and GDI subscales or MSAS-Child scores did not. CONCLUSION: Pediatric-MSAS-Spanish is feasible and reliable for assessing symptom burden in children with cancer. Validity of MSAS-Caregiver and MSAS-Teen was largely supported. Further work on MSAS-Child is warranted.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.10.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.10.022</a>
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2020
Bevilacqua MS
Cancer
Cordeiro V
December 2020 List
Dussel V
Gomez K
Journal of Pain and Symptom Management
Luna F
Memorial Symptom Assessment Scale
Msas
Orellana L
Patient Reported Outcomes
Pediatrics
Requena ML
Symptom Assessment
symptom distress
Validity
Wolfe J
-
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000002603" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000002603</a>
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Variation in Pediatric Palliative Care Allocation Among Critically Ill Children in the United States
Publisher
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Pediatric Critical Care Medicine
Date
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2020
Subject
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critical care; morbidity; palliative care; pediatrics; quality of life; screening
Creator
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O'Keefe S; Maddux AB; Bennett KS; Youngwerth J; Czaja AS
Description
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OBJECTIVES: The objectives are as follows: 1) estimate palliative care consult rates and trends among critically ill children and 2) characterize which children receive palliative care consults, including those meeting previously proposed ICU-specific palliative care screening criteria. DESIGN: Retrospective cohort. SETTING: Fifty-two United States children's hospitals participating in the Pediatric Health Information Systems database. PATIENTS: Hospitalized children with nonneonatal ICU admissions from 2007 to 2018. MEASUREMENTS: The primary outcome was palliative care consultation, as identified by the palliative care International Classification of Disease code. Patient characteristics and outcomes were compared between those with and without palliative care. We used a mixed-effects multivariable model to estimate the independent association between the palliative care and patient characteristics accounting for institution and subject clustering. Hospitalizations were categorized into three mutually exclusive groups for comparative analyses: 1) meeting ICU-specific palliative care criteria, 2) presence of a complex chronic condition not in ICU-specific palliative care criteria, or 3) not meeting ICU-specific palliative care or complex chronic condition criteria. Rates and trends of palliative care consultation were estimated including variation among institutions and variation among subcategories of ICU-specific palliative care criteria. RESULTS: The study cohort included 740,890 subjects with 1,024,666 hospitalizations. About 1.36% of hospitalizations had a palliative care consultation. Palliative care consult was independently associated with older age, female sex, government insurance, inhospital mortality, and ICU-specific palliative care or complex chronic condition criteria. Among the hospitalizations, 30% met ICU-specific palliative care criteria, 40% complex chronic condition criteria, and 30% neither. ICU-specific palliative care patients received more mechanical ventilation and cardiopulmonary resuscitation, had longer hospital and ICU lengths of stay, and had higher inhospital mortality (p < 0.001). Palliative care utilization increased over the study period with considerable variation between the institutions especially in the ICU-specific palliative care cohort and its subgroups. CONCLUSIONS: Palliative care consultation for critically ill children in the United States is low. Palliative care utilization is increasing but considerable variation exists across institutions, suggesting inequity in palliative care allocation among this vulnerable population. Future studies should evaluate factors influencing allocation of palliative care among critically ill children in the United States and the drivers of differences between the institutional practices.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000002603" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002603</a>
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2020
Bennett KS
Critical Care
Czaja AS
December 2020 List
Maddux AB
Morbidity
O'Keefe S
Palliative Care
Pediatric Critical Care Medicine
Pediatrics
Quality Of Life
Screening
Youngwerth J
-
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2020.1836070</a>
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Parents experience of using "cold" facilities at a children's hospice after the death of their baby: A qualitative study
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Cold cot; death; hospice; qualitative study
Creator
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Norton EA; Mastroyannopoulou K; Rushworth I
Description
An account of the resource
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three fathers). Our thematic analysis identified six themes: being able to care for my baby in a way that I never had, space and time to adjust to the loss, time as a family, having my baby close, creating memories, and awareness of societal perceptions. The authors conclude that these facilities provided memories, strengthened legacy, and were a valuable experience.
Identifier
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<a href="http://doi.org/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1836070</a>
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2020
Cold cot
Death
Death studies
December 2020 List
Hospice
Mastroyannopoulou K
Norton EA
Qualitative Study
Rushworth I
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/medlaw/fwz011</a>
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Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Publisher
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Medical Law Review
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Decision Making; Terminally Ill; Child; Children; Decision-Making; End-of-Life; Ethics of Care; Female; Gillick Competence; Guidelines as Topic; Humans; Informed Consent By Minors/ethics/legislation & jurisprudence; Mental Competency/legislation & jurisprudence; Palliative Care/ethics; Parents; Personal Autonomy; Terminal Care/ethics; Treatment Refusal; Treatment Refusal/ethics/legislation & jurisprudence; United Kingdom
Creator
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Moreton KL
Description
An account of the resource
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
Identifier
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<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">10.1093/medlaw/fwz011</a>
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2020
Child
Children
December 2020 List
Decision Making
Decision-making
end-of-life
Ethics of Care
Female
Gillick Competence
Guidelines As Topic
Humans
Informed Consent By Minors/ethics/legislation & jurisprudence
Medical Law Review
Mental Competency/legislation & jurisprudence
Moreton KL
Palliative Care/ethics
Parents
Personal Autonomy
Terminal Care/ethics
Terminally Ill
Treatment Refusal
Treatment Refusal/ethics/legislation & jurisprudence
United Kingdom
-
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Title
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December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1177/0193945919867266" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0193945919867266</a>
Dublin Core
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Title
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Pediatric Complex Chronic Conditions: Evaluating Two Versions of the Classification System
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Western journal of nursing research
Date
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2020
Subject
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complex chronic conditions; hcup kid; infants; positive predictive value; sensitivity; specificity
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Lindley LC; Cozad MJ; Fortney CA
Description
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The original pediatric complex chronic conditions (CCC) classification system developed in 2000/2001 is the gold standard in classifying children with life-limiting illnesses. It was significantly modified in 2014; yet the two systems have not been evaluated. The objective of this study was to evaluate the agreement and validity of the original versus the modified CCC classification systems. Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID) data from 2012 was used with a sample of infant decedents less than 1 years. The agreement (i.e., Cohen's Kappa Statistic) and validity (i.e., sensitivity, specificity, and positive predictive value [PPV]) statistics were calculated. Among the 10,175 infants that were classified, the modified system performed well in identifying infants who had a CCC, and it captured infants that the original classification did not. The modified system represents an improvement over the original, but additional testing is warranted.
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<a href="http://doi.org/10.1177/0193945919867266" target="_blank" rel="noreferrer noopener">10.1177/0193945919867266</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).
2020
Complex Chronic Conditions
Cozad MJ
December 2020 List
Fortney CA
hcup kid
Infants
Lindley LC
positive predictive value
sensitivity
specificity
Western Journal of Nursing Research
-
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December 2020 List
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<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2020.08.002</a>
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Title
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Characterization of Death in Infants With Neonatal Seizures
Publisher
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Pediatric Neurology
Date
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2020
Subject
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epilepsy; hospice; neonate; neurocritical care; neurology; palliative care; preterm
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Lemmon ME; Bonifacio SL; Shellhaas RA; Wusthoff CJ; Greenberg RG; Soul JS; Chang T; Chu CJ; Bates S; Massey SL; Abend NS; Cilio MR; Glass HC
Description
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Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at seven sites of the Neonatal Seizure Registry. We characterized the mode of death, evaluated the association between infant characteristics and mode of death, and evaluated predictors of death or transfer to hospice. Result(s): We enrolled 611 consecutive neonates with seizures, and 90 neonates (15%) died before hospital discharge at a median age of 11 days (range: 1 to 163 days); 32 (36%) died in the first postnatal week. An additional 19 neonates (3%) were transferred to hospice. The most common mode of in-hospital death was death after extubation amidst concerns for poor neurological prognosis, in the absence of life-threatening physiologic instability (n = 43, 48%). Only one infant died while actively receiving cardiopulmonary resuscitation. In an adjusted analysis, premature birth (odds ratio: 3.06, 95% confidence interval 1.59 to 5.90) and high seizure burden (odds ratio: 4.33, 95% confidence interval 1.88 to 9.95) were associated with increased odds of death or transfer to hospice. Conclusion(s): In a cohort of neonates with seizures, death occurred predominantly after decisions to withdraw or withhold life-sustaining intervention(s). Future work should characterize how these decisions occur and develop optimized approaches to support families and clinicians caring for newborns with seizures. Copyright © 2020 Elsevier Inc.
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<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2020.08.002</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).
2020
Abend NS
Bates S
Bonifacio SL
Chang T
Chu CJ
Cilio MR
December 2020 List
Epilepsy
Glass HC
Greenberg RG
Hospice
Lemmon ME
Massey SL
Neonate
Neurocritical care
Neurology
Palliative Care
Pediatric Neurology
preterm
Shellhaas RA
Soul JS
Wusthoff CJ
-
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Title
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.2196/22329" target="_blank" rel="noreferrer noopener">http://doi.org/10.2196/22329</a>
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Title
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eHealth and mHealth psychosocial interventions for youths with chronic illnesses: A systematic review
Publisher
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JMIR Pediatrics and Parenting
Date
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2020
Subject
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chronic illness; eHealth; mental health; mHealth; pediatrics; psychosocial interventions
Creator
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Lau N; Waldbaum S; Parigoris R; O'Daffer A; Walsh C; Colt SF; Yi-Frazier JP; Palermo TM; McCauley E; Rosenberg AR
Description
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BACKGROUND: An estimated 12.8% of children and adolescents experience chronic health conditions which lead to poor quality of life, adjustment and coping issues, and concurrent mental health problems. Digital health deployment of psychosocial interventions to support youth with chronic illness has become increasingly popular with the advent of the technological advances in the Digital Age. OBJECTIVE: To (1) systematically review published efficacy studies of eHealth (internet-based) and mHealth (mobile health) psychosocial interventions for youths with chronic illnesses; and, (2) review intervention theory and treatment components. METHODS: PubMed, Embase, Web of Science, PsychInfo, and Cochrane Database of Systematic reviews were searched for studies published from 2008-2019 of eHealth and mHealth psychosocial interventions designed for children and adolescents with chronic illnesses in which efficacy outcomes were reported. We excluded studies of interventions for caregivers, healthy youth, disease and medication management, and telehealth interventions that function solely as a platform to connect patients to providers via phone, text, or videoconference. RESULTS: We screened 2,551 articles, and 133 relevant full-text articles. Sixteen efficacy studies with psychosocial and health outcomes met inclusion criteria, which represented 12 unique interventions. Of the included studies, 12 were randomized controlled trials and four were prospective cohort studies with no comparison group. Most interventions were based in cognitive-behavioral theory and designed as eHealth interventions; only 2 were designed as an mHealth intervention. All but two interventions provided access to support staff via text, phone, email, or discussion forums. The significant heterogeneity in intervention content, intervention structure, medical diagnoses, and outcomes precluded meta-analysis. For example, measurement timepoints ranged from immediately post-completion of the mHealth program to 18-months later, and we identified 39 unique outcomes of interest. The majority of included studies (11/16, 68.75%) reported significant changes in measured health and/or psychosocial post-treatment outcomes, with small to large effect sizes. CONCLUSIONS: Although the available literature on the efficacy of eHealth and mHealth psychosocial interventions for youth with chronic illnesses is limited, preliminary research suggests some evidence of positive treatment responses. Future studies should continue to evaluate whether digital health platforms may be a viable alternative model of delivery to traditional face-to-face approaches.
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<a href="http://doi.org/10.2196/22329" target="_blank" rel="noreferrer noopener">10.2196/22329</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).
2020
Chronic Illness
Colt SF
December 2020 List
eHealth
JMIR Pediatrics and Parenting
Lau N
McCauley E
Mental Health
mHealth
O'Daffer A
Palermo TM
Parigoris R
Pediatrics
psychosocial interventions
Rosenberg AR
Waldbaum S
Walsh C
Yi-Frazier JP
-
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Title
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-0529-z</a>
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Title
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When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
Publisher
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BMC Palliative Care
Date
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2020
Subject
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Attitude to Death; Grief; Adaptation; Bereavement; Hospice Care/methods/psychology/standards; Humans; Interventions; Models theoretical; Paediatrics; Parenting/psychology; Parents; Parents/psychology; Psychological; Psychological Theory; Social Support; Systematic review
Creator
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Kochen EM; Jenken F; Boelen PA; Deben LMA; Fahner JC; van den Hoogen A; Teunissen SCCM; Geleijns K; Kars MC
Description
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BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
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<a href="http://doi.org/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-0529-z</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).
2020
Adaptation
Attitude To Death
Bereavement
BMC Palliative Care
Boelen PA
Deben LMA
December 2020 List
Fahner JC
Geleijns K
Grief
Hospice Care/methods/psychology/standards
Humans
Interventions
Jenken F
Kars MC
Kochen EM
Models Theoretical
Paediatrics
Parenting/psychology
Parents
Parents/psychology
Psychological
Psychological Theory
Social Support
Systematic Review
Teunissen SCCM
van den Hoogen A
-
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Title
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2020-0075</a>
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Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives
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Hospital Pediatrics
Date
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2020
Subject
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parent perspectives; provider perspectives; qualitative analysis; shared decision-making
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Hoang K; Halpern-Felsher B; Brooks M; Blankenburg R
Description
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OBJECTIVES: Shared decision-making (SDM) is the pinnacle of patient-centered care and has been shown to improve health outcomes, especially for children with chronic medical conditions. However, parents perceive suboptimal involvement during hospitalization. The objective was to explore the perspectives of parents of hospitalized children and their hospital providers on facilitators and barriers to SDM in the hospital and identify strategies to increase SDM. METHODS: A qualitative study was conducted by using semistructured interviews with parents of hospitalized children with and without complex chronic conditions and their pediatric hospital medicine faculty. Parents and faculty were matched and individually interviewed on the same day. Two investigators iteratively coded transcripts and identified themes using modified grounded theory, with an additional author reviewing themes. RESULTS: Twenty-seven parents and 16 faculty participated in the interviews. Four themes emerged: (1) parents and providers value different components of SDM; (2) providers assume SDM is easier with parents of children with medical complexity; (3) factors related to providers, parents, patients, and family-centered rounds were identified as barriers to SDM; and (4) parents and providers identified strategies to facilitate SDM in the hospital. CONCLUSIONS: There is a discrepancy between parents' and providers' understanding of SDM, with parents most valuing their providers' ability to actively listen and explain the medical issue and options with them. There are many barriers that exist that make it difficult for both parties to participate. Several strategies related to family-centered rounds have been identified that can be implemented into clinical practice to mitigate these barriers.
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<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0075</a>
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2020
Blankenburg R
Brooks M
December 2020 List
Halpern-Felsher B
Hoang K
Hospital Pediatrics
parent perspectives
provider perspectives
Qualitative Analysis
Shared Decision-making
-
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.3389/fped.2020.574180" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.574180</a>
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Title
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End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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end-of-life care; neonatal; neonatal hospice; neonatal pain; neonatal palliative care
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Haug S; Dye A; Durrani S
Description
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One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal palliative care should include identifying and relieving distressing symptoms. Symptoms to manage at neonatal EOL may include pain using both non-pharmacologic and pharmacologic comfort measures, respiratory distress, secretions, agitation and neurologic symptoms, nutrition and gastrointestinal distress, and skin care. Also of equal importance is communication surrounding familial existential distress and psychosocial care (1, 5-7). Institutions should implement a guideline for neonatal EOL care as guidelines have been shown to decrease variability of interventions and increase use of pharmacologic symptom management (4). Providers should consult with palliative care teams if available for added multidisciplinary support for family and staff, which has been shown to enhance EOL care in neonates (8, 9).
Identifier
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<a href="http://doi.org/10.3389/fped.2020.574180" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574180</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).
2020
December 2020 List
Durrani S
Dye A
End-of-life Care
Frontiers in Pediatrics
Haug S
Neonatal
neonatal hospice
neonatal pain
Neonatal Palliative Care
-
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.3389/fped.2020.571335" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.571335</a>
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Assessment of Healthcare Professionals' Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course
Publisher
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Frontiers in Pediatrics
Date
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2020
Subject
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competence; neonatal; palliative care; perinatal; training course
Creator
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Hammond J; Wool C; Parravicini E
Description
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Background: Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but training for clinicians has not kept pace. Therefore, an interdisciplinary team developed a 3-day intensive PNPC training course for physicians, nurses, and other healthcare professionals at Columbia University Irving Medical Center (CUIMC). Objective: The aim of this study was to assess the efficacy of a PNPC training course in improving the self-reported competence of participants. Study Design: A cross-sectional survey design was used to obtain data from 88 healthcare professionals who attended the PNPC training course. Data was collected using a validated questionnaire. The questionnaire included 32 items that queried participants about their self-assessed competence using a forced 1-4 Likert scale. The 32 items, which served as the outcome variables, were clustered into the eight domains of palliative care. The survey was administered through a web-based tool at the beginning and the conclusion of the course. Results: Results from two-sample t-tests comparing pre-test and post-test self-assessed competence were statistically significant for each item across disciplines. Additional analysis revealed that after participation in the training course, the statistically significant differences between physicians' and nurses' pre-course self-reported competence disappeared. Conclusion: The development of an evidence-based curriculum improved the self-reported competence of participants across disciplines, filled a specific gap in nurses' self-reported competence and addressed a global training need.
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<a href="http://doi.org/10.3389/fped.2020.571335" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.571335</a>
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2020
Competence
December 2020 List
Frontiers in Pediatrics
Hammond J
Neonatal
Palliative Care
Parravicini E
Perinatal
training course
Wool C
-
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December 2020 List
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<a href="http://doi.org/10.1186/s12913-020-05754-w" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12913-020-05754-w</a>
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Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study
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BMC Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Children and families; Delphi study; Life-limiting neurodevelopmental disability; Services
Creator
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Guerin S; Kiernan G; Courtney E; McQuillan R; Ryan K
Description
An account of the resource
BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Identifier
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<a href="http://doi.org/10.1186/s12913-020-05754-w" target="_blank" rel="noreferrer noopener">10.1186/s12913-020-05754-w</a>
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2020
BMC Health Services Research
Children And Families
Courtney E
December 2020 List
Delphi Study
Guerin S
Kiernan G
Life-limiting neurodevelopmental disability
McQuillan R
Ryan K
Services
-
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Title
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December 2020 List
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December 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216320967593" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320967593</a>
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The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review
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Palliative Medicine
Date
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2020
Subject
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cancer; children; health professionals; life-limiting illness; non-cancer; Paediatric palliative care; parents; support needs
Creator
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Gill FJ; Hashem Z; Stegmann R; Aoun SM
Description
An account of the resource
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
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<a href="http://doi.org/10.1177/0269216320967593" target="_blank" rel="noreferrer noopener">10.1177/0269216320967593</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).
2020
Aoun SM
Cancer
Children
December 2020 List
Gill FJ
Hashem Z
health professionals
life-limiting illness
non-cancer
paediatric palliative care
Palliative Medicine
Parents
Stegmann R
support needs
-
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.1111/jspn.12311" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jspn.12311</a>
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"This is the worst that has happened to me in 86 years": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
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Journal for Specialists in Pediatric Nursing.
Date
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2020
Subject
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bereavement; child; death; grandparents; pediatric palliative care
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Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Description
An account of the resource
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end-of-life care and after the death of a grandchild. Design and Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Result(s): Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child. Practice Implications: These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family. Copyright © 2020 Wiley Periodicals LLC
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<a href="http://doi.org/10.1111/jspn.12311" target="_blank" rel="noreferrer noopener">10.1111/jspn.12311</a>
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2020
Becker G
Bereavement
Bergstrasser E
Child
Death
December 2020 List
Flury M
Grandparents
Journal for Specialists in Pediatric Nursing.
Orellana-Rios C
Pediatric Palliative Care
-
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.1136/archdischild-2020-318855" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-318855</a>
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Withholding or withdrawing life-sustaining treatment in extremely low gestational age neonates
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Archives of disease in childhood. Fetal and neonatal edition.
Date
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2020
Subject
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ethics; neonatology; palliative care; race and health
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Dworetz AR; Natarajan G; Langer J; Kinlaw K; James JR; Bidegain M; Das A; Poindexter B; Bell EF; Cotten CM; Kirpalani H; Shankaran S; Stoll BJ
Description
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OBJECTIVE: To identify sociodemographic and clinical factors associated with withholding or withdrawing life-sustaining treatment (WWLST) for extremely low gestational age neonates. DESIGN: Observational study of prospectively collected registry data from 19 National Institute of Child Health and Human Development Neonatal Research Network centres on neonates born at 22-28 weeks gestation who died >12hours through 120 days of age during 2011-2016. Sociodemographic and clinical factors were compared between infants who died following WWLST and without WWLST. RESULT(S): Of 1168 deaths, 67.1% occurred following WWLST. Withdrawal of assisted ventilation (97.4%) was the primary modality. WWLST rates were inversely proportional to gestational age. Life-sustaining treatment was withheld or withdrawn more often for non-Hispanic white infants than for non-Hispanic black infants (72.7% vs 60.4%; 95%CI 1.00 to 1.92) or Hispanic infants (72.7% vs 67.2%; 95%CI 1.32 to 3.72). WWLST rates varied across centres (38.6-92.6%; p<0.001). The centre with the highest rate had adjusted odds 4.89 times greater than the average (95%CI 1.18 to 20.18). The adjusted odds of WWLST were higher for infants with necrotiing enterocolitis (OR 1.77, 95%CI 1.21 to 2.59) and severe brain injury (OR 1.98, 95%CI 1.44 to 2.74). CONCLUSION(S): Among infants who died, WWLST rates varied widely across centres and were associated with gestational age, race, ethnicity, necrotiing enterocolitis, and severe brain injury. Further exploration is needed into how race, centre, and approaches to care of infants with necrotiing enterocolitis and severe brain injury influence WWLST. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
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<a href="http://doi.org/10.1136/archdischild-2020-318855" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-318855</a>
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2020
Archives of disease in childhood. Fetal and neonatal edition.
Bell EF
Bidegain M
Cotten CM
Das A
December 2020 List
Dworetz AR
Ethics
James JR
Kinlaw K
Kirpalani H
Langer J
Natarajan G
Neonatology
Palliative Care
Poindexter B
race and health
Shankaran S
Stoll BJ
-
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1111/nicc.12567" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/nicc.12567</a>
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Improving mealtimes for paediatric intensive care children and families: A quality improvement initiative
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Critical Care Nurse
Date
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2020
Subject
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burn out; family-centred care; meal service; post-intensive care syndrome; quality improvement; rehabilitation
Creator
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De Monte M; Marty Petit EML; Baudin F; Zamor J; Ford-Chessel C; Tume LN; Bordet F; Valla FV
Description
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INTRODUCTION: Many critically ill children can be fed orally at some point during their paediatric intensive care (PICU) stay, but reduced appetite and other factors may impact their intake. At home, oral feeding is usually delivered by parents, so involving parents more actively during mealtimes in the PICU may contribute to improved patient/family satisfaction. We aimed to assess the impact of a new "room service" initiative involving parents on mealtime quality and on both family and health care professional (HCP) satisfaction. METHODS: A prospective, single-centre, before-and-after intervention study was designed as part of a PICU quality-of-care improvement programme in 2013 to 2016. Two questionnaires assessing oral nutrition practices and family/HCP overall satisfaction were disseminated among the parents of critically ill children capable of oral feeding during their PICU admission and among the whole PICU HCP team (nurses, nurse assistants, and medical doctors). Categorical variables were compared using the chi-square test, and Likert scales were compared between groups with the Mann-Whitney-Wilcoxon test. RESULTS: the pre-intervention surveys were completed by 97 of 130 (75%) HCPs and 52 families and the post-intervention surveys by 74 of 130 (57%) HCPs and 54 families. After the intervention, a marked improvement was observed in the overall quality of meal service rating by both HCPs and families (medians and IQR: 5 (5-7) to 7 (7, 8) and 6 (6-8) to 8 (7-9), respectively; P < .01) and also in parents' involvement; in children's, families', and HCP satisfaction; in meal-dedicated facilities and equipment; and in perception that oral nutrition is an important aspect of PICU care. CONCLUSIONS: Implementation of an improved "room service" initiative in the PICU was feasible and improved the perceived quality of care and satisfaction around oral feeding. This family-centred care initiative can be integrated in an overall quality improvement strategy.
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<a href="http://doi.org/10.1111/nicc.12567" target="_blank" rel="noreferrer noopener">10.1111/nicc.12567</a>
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2020
Baudin F
Bordet F
burn out
Critical Care Nurse
De Monte M
December 2020 List
Family-centred Care
Ford-Chessel C
Marty Petit EML
meal service
post-intensive care syndrome
Quality Improvement
Rehabilitation
Tume LN
Valla FV
Zamor J
-
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December 2020 List
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December 2020 List
URL Address
<a href="http://doi.org/10.15766/mep_2374-8265.10991" target="_blank" rel="noreferrer noopener">http://doi.org/10.15766/mep_2374-8265.10991</a>
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Teaching Pediatric Palliative Care Communication Skills to Fourth-Year Medical Students Through Role-Play
Publisher
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MedEdPORTAL
Date
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2020
Subject
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Case-Based Learning; Communication; End of Life; Goals of Care; Hospice & Palliative Medicine; Palliative Care; Pediatric Critical Care Medicine; Pediatrics; Resident Facilitators; Role-Play; Virtual Learning
Creator
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Cowfer B; McGrath C; Trowbridge A
Description
An account of the resource
INTRODUCTION: Despite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals of care conversations with their patients, particularly in pediatrics. METHODS: We created a 3-hour session featuring an introductory lecture on pediatric palliative care, communication drills on responding to emotion, and small-group case-based discussions utilizing role-play, targeting fourth-year medical students as the primary learners. Senior residents were also given the opportunity to develop skills by role-playing the patient parent and cofacilitating case discussions alongside palliative care faculty. Students evaluated session utility and their own confidence through pre- and postsession surveys using a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree). RESULTS: Twenty-six students were included in the analysis over 3 years. All agreed that the session was useful (M = 4.9). Students showed significant improvement in confidence in explaining pediatric palliative care (presession M = 3.2, postsession M = 4.1, p < .001), understanding the family experience (presession M = 2.7, postsession M = 4.1, p < .001), and eliciting goals and values from families whose children face serious illnesses (presession M = 3.1, postsession M = 4.1, p < .001). Pediatric resident cofacilitators also felt the session benefited their own teaching and communication skills. DISCUSSION: This 3-hour interactive session on pediatric palliative care utilizing communication drills and role-play was effective in improving fourth-year medical students' confidence in communicating with families of children facing life-threatening illnesses.
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<a href="http://doi.org/10.15766/mep_2374-8265.10991" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10991</a>
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2020
Case-Based Learning
Communication
Cowfer B
December 2020 List
End Of Life
Goals Of Care
Hospice & Palliative Medicine
McGrath C
MedEdPORTAL
Palliative Care
Pediatric Critical Care Medicine
Pediatrics
Resident Facilitators
Role-Play
Trowbridge A
Virtual Learning
-
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Title
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1111/jan.14602" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jan.14602</a>
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Title
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Experiences of new nurses dealing with death in a paediatric setting: A descriptive qualitative study
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Journal of Advanced Nursing
Date
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2020
Subject
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death; experiences; novice nurse; nurses; paediatric
Creator
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Chew YJM; Ang SLL; Shorey S
Description
An account of the resource
AIMS: To explore and describe the experiences, challenges and coping strategies of new nurses dealing with paediatric death in a clinical setting. DESIGN: A descriptive qualitative study design was used. METHODS: Semi-structured interviews were conducted to explore the experiences of 12 new paediatric nurses from a tertiary public hospital in Singapore. Data were collected from September 2019-December 2019. A thematic analysis was performed for data analysis. RESULTS: Four themes were generated: (a) a spectrum of emotions; (b) the 'blame' game; (c) getting through the grief; and (d) new nurses' wish list. The new nurses tended to be emotionally affected by their first death experience. They felt anxious and personally responsible for the death but eventually controlled their emotions. Colleagues, religion and self-actualization were key in overcoming grief. CONCLUSION: The experiences nurses go through at the early stages of their profession shape future workplace attitudes. Additional training and support should be provided to new nurses to build their confidence in managing end-of-life care. Training should include cultural awareness and communication skills to equip nurses with the necessary skills. IMPACT: This research will have an impact on institutions, which develop culturally congruent training and support platforms that prepare new nurses for nursing practice. This research will drive future investigations on the long-term effects of paediatric death on new nurses.
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<a href="http://doi.org/10.1111/jan.14602" target="_blank" rel="noreferrer noopener">10.1111/jan.14602</a>
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2020
Ang SLL
Chew YJM
Death
December 2020 List
Experiences
Journal Of Advanced Nursing
novice nurse
Nurses
Paediatric
Shorey S
-
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Title
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December 2020 List
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-318398" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-318398</a>
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Title
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Breaking Bad News: What Parents Would Like You to Know
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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comm child health; palliative care; patient perspective; qualitative research
Creator
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Brouwer MA; Maeckelberghe ELM; van der Heide A; Hein IM; Verhagen EAA
Description
An account of the resource
OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of communication of bad news. DESIGN: A qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents. SETTING: The Netherlands. PARTICIPANTS: Sixty-four parents-bereaved and non-bereaved-of 44 children (aged 1-12 years, 61% deceased) with a life-threatening condition. INTERVENTIONS: None. RESULTS: Based on parents' experiences, the following 10 barriers to the communication of bad news were identified: (1) a lack of (timely) communication, (2) physicians' failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (4) a lack of clarity about future treatment, (5) physicians' failure to voice uncertainties, (6) physicians' failure to schedule follow-up conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents' misunderstanding of medical terminology. CONCLUSIONS: This study shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns practical aspects of communication. The results provide practical pointers on how the communication of bad news can be improved to better suit the needs of parents. From the parents' perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place.
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<a href="http://doi.org/10.1136/archdischild-2019-318398" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-318398</a>
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2020
Archives of Disease in Childhood
Brouwer MA
comm child health
December 2020 List
Hein IM
Maeckelberghe ELM
Palliative Care
Patient Perspective
Qualitative Research
van der Heide A
Verhagen EAA
-
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December 2020 List
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December 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2020-002449" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2020-002449</a>
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Title
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Analysis of health administration data to inform health service planning for paediatric palliative care
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BMJ Supportive & Palliative Care
Date
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2020
Subject
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chronic conditions; hospital care; paediatrics
Creator
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Bowers AP; Bradford N; Chan RJ; Herbert A; Yates P
Description
An account of the resource
BACKGROUND: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services. AIM: To quantify health service usage by children and young people aged 0-21 years with a life-limiting condition admitted to hospital and health service facilities in Queensland, Australia during the 2011 and 2016 calendar years, and describe the clinical and demographic characteristics associated with health services usage. DESIGN: Retrospective health administrative data linkage of clinical and demographic information with hospital admissions was extracted using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision Australian Modification (ICD-10-AM) diagnostic codes. Data were analysed using descriptive statistics. SETTING/PARTICIPANTS: Individuals aged 0-21 years with a life-limiting condition admitted to a Queensland Public Hospital and Health Service or private hospital. RESULTS: Hospital admissions increased from 17 955 in 2011 to 23 273 in 2016, an increase of 5318 (29.6%). The greatest percentage increase in admissions were for those aged 16-18 years (58.1%, n=1050), and those with non-oncological conditions (36.2%, n=4256). The greatest number of admissions by ICD-10-AM chapter for 2011 and 2016 were by individuals with neoplasms (6174, 34.4% and 7206, 31.0% respectively). Overall, the number of admissions by Indigenous children and young people increased by 70.2% (n=838). CONCLUSIONS: Administrative data are useful to describe clinical and demographic characteristics and quantify health service usage. Available data suggest a growing demand for health services by children eligible for palliative care that will require an appropriate response from health service planners.
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<a href="http://doi.org/10.1136/bmjspcare-2020-002449" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002449</a>
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2020
BMJ Supportive & Palliative Care
Bowers AP
Bradford N
Chan RJ
chronic conditions
December 2020 List
Herbert A
Hospital care
Paediatrics
Yates P
-
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Title
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1177/1534650120964869" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1534650120964869</a>
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CBT for Anxiety Related to Parenting a Child with a Life-Limiting Neuromuscular Condition: A Single Case Study
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Clinical Case Studies.
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
anxiety; CBT; Duchenne muscular dystrophy; neuromuscular condition; parent
Creator
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Birdsey N
Description
An account of the resource
Caring for a child with a neuromuscular condition such as Duchenne muscular dystrophy (DMD) presents many challenges, including managing the emotional impact of the diagnosis, managing extended periods of profound uncertainty, navigating the complexities of the healthcare system, managing the child's physical symptoms, and supporting their emotional needs. Although it is encouraging that there is a growing body of research seeking to better understand the medical and treatment needs of those with DMD, the psychosocial needs of individuals and their families have traditionally been considered as ancillary to the child's physical health needs. Consequently, there is limited research investigating the psychological wellbeing of those with DMD, and even less is known about the psychological wellbeing and needs of caregivers, who play a critical role in supporting their child. Caregivers experience multiple stressors and often encounter caring burden and high prevalence rates of anxiety and depression. This paper aims to explore the use of cognitive behavioral therapy (CBT) for comorbid anxiety and low mood in a parent of a child with DMD using a single case design. Results suggest that in the context of multiple stressors and significant life events, CBT was effective in improving mood and reducing symptoms of anxiety. This case highlights the value in offering support to parents of children with DMD and may have clinical implications for other neuromuscular and life-limiting conditions. Copyright © The Author(s) 2020.
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<a href="http://doi.org/10.1177/1534650120964869" target="_blank" rel="noreferrer noopener">10.1177/1534650120964869</a>
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2020
anxiety
Birdsey N
CBT
Clinical Case Studies.
December 2020 List
Duchenne Muscular Dystrophy
neuromuscular condition
Parent
-
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Title
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1177/1049909120965949" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120965949</a>
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Title
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Caring for Dying Infants: A Systematic Review of Healthcare Providers' Perspectives of Neonatal Palliative Care
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American Journal of Hospice and Palliative Care
Date
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2020
Subject
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attitudes; end-of life care; neonatal; palliative
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Beltran SJ; Hamel MN
Description
An account of the resource
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate's life. This paper seeks to systematically summarize healthcare providers' perspectives related to end of life, in order to identify needs and inform future directions. METHODS: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States. RESULTS: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy). CONCLUSION: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.
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<a href="http://doi.org/10.1177/1049909120965949" target="_blank" rel="noreferrer noopener">10.1177/1049909120965949</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).
2020
American Journal Of Hospice And Palliative Care
Attitudes
Beltran SJ
December 2020 List
end-of life care
Hamel MN
Neonatal
Palliative
-
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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December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1177/1359104520961431" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1359104520961431</a>
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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Clinical Supervision for Support Workers in Paediatric Palliative Care: A Literature Review
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Clinical Child Psychology and Psychiatry
Date
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2020
Subject
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burnout; Clinical supervision; complex health; health psychology; paediatric palliative care; staff wellbeing; support worker
Creator
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Beavis J; Davis L; McKenzie S
Description
An account of the resource
Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-registered staff (support workers). Provision of clinical supervision for nurses working in palliative care is increasing, however, supervision needs of support workers are commonly neglected. This paper sought to synthesise what is known about clinical supervision practices for support workers in paediatric palliative care (PPC). A literature review was conducted in accordance with integrative review guidelines. 315 papers were identified initially, 15 studies were included in this review. Four commonalities were identified: importance of team cohesion, varying degrees of formality, self-awareness and practicalities. Support workers received varying forms of supervision and some facilitators faced organisational difficulties involving staff in supervision. Support workers who received staff support generally appreciated it in recognition that their work is complex and emotionally difficult. This paper highlighted that further research should investigate the efficacy of clinical supervision as a method of reducing stress and burnout for support workers. Any implementation of supervision should involve a considered approach to training and supervision to ensure fidelity.
Identifier
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<a href="http://doi.org/10.1177/1359104520961431" target="_blank" rel="noreferrer noopener">10.1177/1359104520961431</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).
2020
Beavis J
Burnout
Clinical Child Psychology And Psychiatry
Clinical supervision
complex health
Davis L
December 2020 List
Health Psychology
McKenzie S
paediatric palliative care
staff wellbeing
support worker
-
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
A name given to the resource
December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/jgc4.1353</a>
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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Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences
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Journal of Genetic Counseling
Date
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2020
Subject
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Decisional regret; genetic counseling; genome-wide sequencing; lived experience; neonates
Creator
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Aldridge CE; Osiovich H; Siden H; Elliott AM
Description
An account of the resource
Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women's Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child's admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child's care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant's condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit.
Identifier
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<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">10.1002/jgc4.1353</a>
Rights
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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).
2020
Aldridge CE
December 2020 List
Decisional regret
Elliott AM
Genetic Counseling
genome-wide sequencing
Journal of Genetic Counseling
lived experience
Neonates
Osiovich H
Siden H