1
40
29
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<a href="http://doi.org/10.3389/fped.2020.588432" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.588432</a>
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The Neonatal Comfort Care Program: Origin and Growth Over 10 Years
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Frontiers in Pediatrics
Date
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2020
Subject
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life limiting conditions; neonatal palliative care; program development; perinatal palliative care (PPC); interdisciplinary care
Creator
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Wool C; Parravicini E
Description
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The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.
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<a href="http://doi.org/10.3389/fped.2020.588432" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.588432</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
Frontiers in Pediatrics
interdisciplinary care
January 2021 List
life limiting conditions
Neonatal Palliative Care
Parravicini E
perinatal palliative care (PPC)
Program Development
Wool C
-
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<a href="http://doi.org/10.1177/1367493520971426" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493520971426</a>
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Factors influencing nurse retention within children's palliative care
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Journal of Child Health Care
Date
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2020
Subject
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Children; nursing; education; nurse’s role; palliative care nursing
Creator
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Whiting L; O'Grady M; Whiting M; Petty J
Description
An account of the resource
Retention of staff presents major challenges within children's palliative care; this has substantial implications for children, families and the nursing workforce. To address this, a programme was undertaken that provided pathways of professional development for senior nurses working in this field. This study reports the views of nurses completing this programme, the overall project manager (PM) and the day-to-day programme lead (PL) as well as factors that influence nurse retention within children's palliative care nursing. The study drew on an Appreciative Inquiry approach that comprised of interviews with the PM and PL as well as focus groups and questionnaires with senior nurses from the children's palliative care sector, who participated in the training programme. Thematic analysis of data from interviews and focus groups revealed factors influencing nurse retention: speciality, positivity and making a difference, support, provision of adequate resources, tailored education/professional development and resilience. These themes were supported by the questionnaire findings. The programme was perceived as having a positive influence on nurse retention within the children's palliative care workforce. In addition, it was felt to be very beneficial in terms of shared learning and development. Participants highlighted the need for similar opportunities in the future.
Identifier
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<a href="http://doi.org/10.1177/1367493520971426" target="_blank" rel="noreferrer noopener">10.1177/1367493520971426</a>
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2020
Children
Education
January 2021 List
Journal Of Child Health Care
nurse’s role
Nursing
O'Grady M
Palliative Care Nursing
Petty J
Whiting L
Whiting M
-
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Title
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January 2021 List
Text
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January 2021 List
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<a href="http://doi.org/10.1136/archdischild-2020-318978" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-318978</a>
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Survival and causes of death in extremely preterm infants in the Netherlands
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Archives of Disease in Childhood. Fetal and Neonatal Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Mortality; Neonatology
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van Beek PE; Groenendaal F; Broeders L; Dijk PH; Dijkman KP; van den Dungen FAM; van Heijst AFJ; van Hillegersberg JL; Kornelisse RF; Onland W; Schuerman F; van Westering-Kroon E; Witlox RSGM; Andriessen P
Description
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OBJECTIVE: In the Netherlands, the threshold for offering active treatment for spontaneous birth was lowered from 25(+0) to 24(+0) weeks' gestation in 2010. This study aimed to evaluate the impact of guideline implementation on survival and causes and timing of death in the years following implementation. DESIGN: National cohort study, using data from the Netherlands Perinatal Registry. PATIENTS: The study population included all 3312 stillborn and live born infants with a gestational age (GA) between 24(0/7) and 26(6/7) weeks born between January 2011 and December 2017. Infants with the same GA born between January 2007 and December 2009 (N=1400) were used as the reference group. MAIN OUTCOME MEASURES: Survival to discharge, as well as cause and timing of death. RESULTS: After guideline implementation, there was a significant increase in neonatal intensive care unit (NICU) admission rate for live born infants born at 24 weeks' GA (27%-69%, p<0.001), resulting in increased survival to discharge in 24-week live born infants (13%-34%, p<0.001). Top three causes of in-hospital mortality were necrotising enterocolitis (28%), respiratory distress syndrome (19%) and intraventricular haemorrhage (17%). A significant decrease in cause of death either complicated or caused by respiratory insufficiency was seen over time (34% in 2011-2014 to 23% in 2015-2017, p=0.006). CONCLUSIONS: Implementation of the 2010 guideline resulted as expected in increased NICU admissions rate and postnatal survival of infants born at 24 weeks' GA. In the years after implementation, a shift in cause of death was seen from respiratory insufficiency towards necrotising enterocolitis and sepsis.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2020-318978" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-318978</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
Andriessen P
Archives of Disease in Childhood. Fetal and Neonatal Edition
Broeders L
Dijk PH
Dijkman KP
Groenendaal F
January 2021 List
Kornelisse RF
Mortality
Neonatology
Onland W
Schuerman F
van Beek PE
van den Dungen FAM
van Heijst AFJ
van Hillegersberg JL
van Westering-Kroon E
Witlox RSGM
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1080/17453054.2019.1691439" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/17453054.2019.1691439</a>
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Stillbirth memento photography
Publisher
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Journal of Visual Communication in Medicine
Date
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2020
Subject
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Humans; Parents/psychology; Bereavement; stillbirth; Stillbirth/psychology; photography; obstetrics; Death studies; graphic design; health communications; Photography/methods/standards
Creator
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Tovey R; Turner S
Description
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Research into stillbirth memento photography shows the practice to be welcomed by the bereaved. The visual attributes and content of stillbirth memento photographs are yet to be rigorously analysed however, representing a significant gap in current understanding. This study seeks to address this. 51 professionally produced stillbirth memento photographs have been sampled, anonymised and analysed. Using a content analysis methodology, imagery was characterised by aesthetic and semantic properties. The results were then cross-referenced against existing stillbirth scholarship, data from an interview study with people who had experienced pregnancy loss, and against image theories. The content analysis identified four distinctive image tropes in the sample: images of mother, father and baby, with the baby being held and the parents touching; macro photography of the baby; portrait photographs of babies lying alone with little or no physical trauma evident; and images of a parent, usually the mother, cradling the baby. The analysis also identified specific attributes, present across the sample, that appeared significant and distinctive of stillbirth memento photography. These were: (1) stylistic attributes, (2) acknowledgement and validation, (3) identity construction, (4) ambiguity and (5) embodiment.
Identifier
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<a href="http://doi.org/10.1080/17453054.2019.1691439" target="_blank" rel="noreferrer noopener">10.1080/17453054.2019.1691439</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
Death studies
graphic design
health communications
Humans
January 2021 List
Journal of Visual Communication in Medicine
obstetrics
Parents/psychology
Photography
Photography/methods/standards
Stillbirth
Stillbirth/psychology
Tovey R
Turner S
-
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Title
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January 2021 List
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January 2021 List
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<a href="http://doi.org/10.1097/njh.0000000000000714" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000714</a>
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Feasibility and Acceptability of Reiki Therapy for Children Receiving Palliative Care in the Home
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Journal of Hospice and Palliative Nursing
Date
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2020
Subject
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acceptability; adolescent; child; feasibility; integrative; palliative care; pediatric; Reiki
Creator
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Thrane SE; Maurer SH; Danford CA
Description
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Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility and acceptability of Reiki therapy as a treatment for children aged 7 to 16 years receiving palliative care. During the study, we recorded recruitment, retention, data collection rates, and percent completion of the intervention. Structured interviews with the mothers and verbal children were conducted to elicit their experience. Qualitative data were analyzed using thematic analysis. Twenty-one parent-child dyads agreed to participate and signed consent, whereas 16 completed the study (including verbal [n = 8] and nonverbal [n = 8] children). Themes included "feeling better," "hard to judge," and "still going on." Mothers and children were generally positive regarding the experience of receiving Reiki therapy. Children reported they "felt really relaxed," and mothers stated, "It was a good experience" and "She was relaxed afterward." The results of this pilot study show that Reiki was feasible, acceptable, and well-tolerated. Most participants reported it was helpful. Reiki therapy may be a useful adjunct with traditional medical management for symptoms in children receiving palliative care.
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000714" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000714</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
acceptability
Adolescent
Child
Danford CA
Feasibility
integrative
January 2021 List
Journal of Hospice and Palliative Nursing
Maurer SH
Palliative Care
Pediatric
Reiki
Thrane SE
-
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Title
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January 2021 List
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January 2021 List
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<a href="http://doi.org/10.1136/archdischild-2020-320353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-320353</a>
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Title
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Consulting with young people: informing guidelines for children's palliative care
Publisher
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Archives of Disease in Childhood
Date
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2020
Subject
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palliative care; qualitative research; adolescent health
Creator
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Taylor J; Murphy S; Chambers L; Aldridge J
Description
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OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people). METHODS: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings. RESULTS: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this. CONCLUSION: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2020-320353" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320353</a>
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2020
Adolescent health
Aldridge J
Archives of Disease in Childhood
Chambers L
January 2021 List
Murphy S
Palliative Care
Qualitative Research
Taylor J
-
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January 2021 List
URL Address
<a href="http://doi.org/10.12968/bjon.2020.29.19.1114" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/bjon.2020.29.19.1114</a>
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End-of-life care in paediatrics
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British Journal of Nursing
Date
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2020
Subject
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bereavement; child; Hospice and Palliative Nursing; Patient care -- In Infancy and Childhood; pediatric nursing -- Education; psychosocial support
Creator
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Rosengarten L; Carr E
Description
An account of the resource
The article provide information on end-of-life care in paediatrics, including the signs that death is imminent, how to manage the care of a dying child or young person and support their family, and how to care for the patient after death. Topics include caring for a child or young person at the end of their life is emotionally challenging and traumatic experiences in practice; and manage unpleasant symptoms, an advance care plan should be developed as soon as this is clinically indicated.
Identifier
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<a href="http://doi.org/10.12968/bjon.2020.29.19.1114" target="_blank" rel="noreferrer noopener">10.12968/bjon.2020.29.19.1114</a>
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2020
Bereavement
British Journal Of Nursing
Carr E
Child
Hospice and Palliative Nursing
January 2021 List
Patient care -- In Infancy and Childhood
pediatric nursing -- Education
psychosocial support
Rosengarten L
-
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January 2021 List
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January 2021 List
URL Address
<a href="http://doi.org/10.1016/j.amepre.2020.08.026" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.amepre.2020.08.026</a>
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Title
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Clinical Correlates of Opioid Prescription Among Pediatric Patients With Chronic Pain
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American Journal of Preventive Medicine
Date
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2020
Subject
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Pain Management; chronic pain; pediatric patients; opioid prescription; clinical presentation
Creator
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Richardson PA; Birnie KA; Goya Arce AB; Bhandari RP
Description
An account of the resource
INTRODUCTION: Up to 17%-20% of pediatric patients with chronic pain are prescribed opioid pharmacotherapy and face an increased risk of opioid misuse in adulthood. Little is known about the way clinical presentation may influence which children with chronic pain are prescribed opioids. This study examines the associations between child's and caregiver's report of child's pain, physical function, and socioemotional indices with opioid prescriptions in pediatric patients initiating treatment for chronic pain. METHODS: Participants were 1,155 pediatric patients (71.26% female, n=823) aged 8-17 years and 1 of their caregivers (89% mothers) who presented for evaluation at a tertiary care pediatric pain clinic. Data were collected from 2015 to 2019 and analyzed in 2020. RESULTS: Binary logistic regression analyses investigated the relative contribution of child's demographic, pain, and Patient-Reported Outcome Measurement Information System measures to opioid prescription status; separate models were conducted for child's and caregiver's report. Across child and caregiver models, findings were that child's age (older), pain duration (longer; child's report only), and increased physical limitations (mobility challenges and pain interference; caregiver's report only) were the most salient clinical correlates of positive opioid status. Contrary to the existing literature on adults with chronic pain, socioemotional indices (anxiety, depression, peer functioning) were nonsignificant. CONCLUSIONS: A greater understanding of how clinical presentation may relate to prescribed opioid pharmacotherapy informs the field's conceptualization of the sequelae of opioid use and misuse in the context of pediatric chronic pain.
Identifier
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<a href="http://doi.org/10.1016/j.amepre.2020.08.026" target="_blank" rel="noreferrer noopener">10.1016/j.amepre.2020.08.026</a>
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2020
American Journal of Preventive Medicine
Bhandari RP
Birnie KA
Chronic Pain
clinical presentation
Goya Arce AB
January 2021 List
opioid prescription
Pain Management
pediatric patients
Richardson PA
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.3389/fped.2020.584334" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.584334</a>
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Long-Term Non-invasive Ventilation in Children: Current Use, Indications, and Contraindications
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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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chronic respiratory failure; Covid-19; neuromuscular disorders; non-invasive ventilation; home ventilation; mouthpiece ventilation
Creator
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Praud JP
Description
An account of the resource
This review focuses on the delivery of non-invasive ventilation-i.e., intermittent positive-pressure ventilation-in children lasting more than 3 months. Several recent reviews have brought to light a dramatic escalation in the use of long-term non-invasive ventilation in children over the last 30 years. This is due both to the growing number of children receiving care for complex and severe diseases necessitating respiratory support and to the availability of LT-NIV equipment that can be used at home. While significant gaps in availability persist for smaller children and especially infants, home LT-NIV for children with chronic respiratory insufficiency has improved their quality of life and decreased the overall cost of care. While long-term NIV is usually delivered during sleep, it can also be delivered 24 h a day in selected patients. Close collaboration between the hospital complex-care team, the home LT-NIV program, and family caregivers is of the utmost importance for successful home LT-NIV. Long-term NIV is indicated for respiratory disorders responsible for chronic alveolar hypoventilation, with the aim to increase life expectancy and maximize quality of life. LT-NIV is considered for conditions that affect respiratory-muscle performance (alterations in central respiratory drive or neuromuscular function) and/or impose an excessive respiratory load (airway obstruction, lung disease, or chest-wall anomalies). Relative contraindications for LT-NIV include the inability of the local medical infrastructure to support home LT-NIV and poor motivation or inability of the patient/caregivers to cooperate or understand recommendations. Anatomic abnormalities that interfere with interface fitting, inability to protect the lower airways due to excessive airway secretions and/or severely impaired swallowing, or failure of LT-NIV to support respiration can lead to considering invasive ventilation via tracheostomy. Of note, providing home LT-NIV during the COVID 19 pandemic has become more challenging. This is due both to the disruption of medical systems and the fear of contaminating care providers and family with aerosols generated by a patient positive for SARS-CoV-2 during NIV. Delay in initiating LT-NIV, decreased frequency of home visits by the home ventilation program, and decreased availability of polysomnography and oximetry/transcutaneous PCO(2) monitoring are observed. Teleconsultations and telemonitoring are being developed to mitigate these challenges.
Identifier
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<a href="http://doi.org/10.3389/fped.2020.584334" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.584334</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 respiratory failure
COVID-19
Frontiers in Pediatrics
home ventilation
January 2021 List
mouthpiece ventilation
Neuromuscular Disorders
Non-invasive ventilation
Praud JP
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1080/15325024.2020.1838778" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/15325024.2020.1838778</a>
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Title
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Interventions for siblings, extended family, and community members after pediatric death
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Journal of Loss and Trauma
Date
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2020
Subject
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perinatal death; efficacy; bereavement; No terms assigned; Pediatric death; support programs
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Pachalla S; Witting C; James K; Michelson KN
Description
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The death of a child is felt by extended family, friends, and community members. Most bereavement care research focuses on programs for parents. Little is known about the efficacy of support programs for other grieving individuals. We conducted a scoping review of the literature describing the efficacy of bereavement support programs for siblings, extended family (other than parents), and community members after pediatric death. We found only four reports describing the efficacy of bereavement support programs for this population. All articles described benefits of the intervention studied. Overall, more rigorous and larger-scale studies are needed. (PsycInfo Database Record (c) 2020 APA, all rights reserved)
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<a href="http://doi.org/10.1080/15325024.2020.1838778" target="_blank" rel="noreferrer noopener">10.1080/15325024.2020.1838778</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
Efficacy
James K
January 2021 List
Journal of Loss and Trauma
Michelson KN
No terms assigned
Pachalla S
Pediatric Death
Perinatal Death
support programs
Witting C
-
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2020-320189" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-320189</a>
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Title
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Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: A longitudinal qualitative investigation
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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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palliative care; healthcare improvement; Healthcare professional; Children and Families; Life-Limiting/Life Threatening Illness
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Mitchell S; Slowther AM; Coad J; Dale J
Description
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Objectives: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care. Design(s): Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis. Setting(s): Community and hospital settings in the West Midlands, UK. Participant(s): Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members. Finding(s): 31 participants from 14 families including10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of a fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach.Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden. Conclusion(s): There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system. Copyright © 2020 Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2020-320189" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320189</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
Archives of Disease in Childhood
Children And Families
Coad J
Dale J
healthcare improvement
Healthcare Professional
January 2021 List
Life-limiting/life Threatening Illness
Mitchell S
Palliative Care
Slowther AM
-
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1002/mds.28381" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mds.28381</a>
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Title
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Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders
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Movement Disorders
Date
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2020
Subject
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pediatrics; neurological disorders; transitional care
Creator
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McGovern E; Pringsheim T; Medina A; Cosentino C; Shalash A; Sardar Z; Fung VSC; Kurian MA; Roze E
Description
An account of the resource
Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the literature on transitional care in chronic neurological disease, exploring key transitional issues and proposed transitional care models. Our aim was to describe the current knowledge and gaps about the transition process of young adults with chronic neurological disorders, paying special attention to childhood onset movement disorders. A total of 64 articles were included in the qualitative synthesis; 56 articles reported on transitional care issues, and 8 articles reported on transitional care models. Only 2 articles included patients with movement disorders. The following 4 main transitional issues were identified following synthesis of the available literature: (1) inadequate preparation for the transition process, (2) inappropriate and inconsistent transition practices, (3) inadequate adult services, and (4) heightened emotional response surrounding transition. Of the reported transitional care models, multidisciplinary ambulatory care was the most common approach. In studies evaluating patient-related outcomes, positive health, educational, and vocational outcomes were found. The available literature provides insights on issues that can arise during transition that should be addressed to improve patient and caregiver comfort and satisfaction with care. Further research is needed to evaluate how transitional care programs affect outcomes and their cost effectiveness. More studies are required to determine the needs and outcomes specific to patients with childhood onset movement disorders. © 2020 International Parkinson and Movement Disorder Society.
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<a href="http://doi.org/10.1002/mds.28381" target="_blank" rel="noreferrer noopener">10.1002/mds.28381</a>
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2020
Cosentino C
Fung VSC
January 2021 List
Kurian MA
McGovern E
Medina A
Movement Disorders
neurological disorders
Pediatrics
Pringsheim T
Roze E
Sardar Z
Shalash A
Transitional Care
-
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January 2021 List
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January 2021 List
URL Address
<a href="http://doi.org/10.3389/fped.2020.574556" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.574556</a>
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Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care
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Frontiers in Pediatrics
Date
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2020
Subject
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decision-making; decisions; pregnancy; life-limiting fetal diagnoses; perinatal palliative care (PPC)
Creator
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Marc-Aurele KL
Description
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When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.
Identifier
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<a href="http://doi.org/10.3389/fped.2020.574556" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574556</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
Decision-making
Decisions
Frontiers in Pediatrics
January 2021 List
life-limiting fetal diagnoses
Marc-Aurele KL
perinatal palliative care (PPC)
Pregnancy
-
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Title
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January 2021 List
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January 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15681" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15681</a>
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Title
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No impact of previous evidence advocating openness to talk to children about their imminent death
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Acta Paediatrica
Date
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2020
Subject
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Communication; palliative care; child death; imminent death; psychological morbidity
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Kreicbergs U; Pohlkamp L; Sveen J
Description
An account of the resource
Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided (1,2). As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need (3).
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<a href="http://doi.org/10.1111/apa.15681" target="_blank" rel="noreferrer noopener">10.1111/apa.15681</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
Acta Paediatrica
Child Death
Communication
Imminent Death
January 2021 List
Kreicbergs U
Palliative Care
Pohlkamp L
psychological morbidity
Sveen J
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1177/0030222820971880" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222820971880</a>
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Title
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Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death
Publisher
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Omega
Date
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2020
Subject
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death; neonatal intensive care; nurse; emotions; dying baby
Creator
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Köktürk Dalcalı B; Can Ş; Durgun H
Description
An account of the resource
The study was planned as a descriptive qualitative study to determine the emotional responses of neonatal intensive care nurses to work in the neonatal unit and to neonatal deaths. The sample of the study consisted of 7 nurses who work at the neonatal intensive care unit since data saturation was achieved. The data were collected using the "Semi-Structured In-Depth Interview Guide for Nurses". The data were analyzed using the content analysis method. Following codes were reached as a result of the study: 'happiness-sadness', 'professional satisfaction-exhaustion', 'empathy', 'responsibility-guilt', 'hope-despair' under the theme of being a nurse at neonatal unit'; 'unforgettable first loss', 'professionalism in intervention-and then: sadness, 'mature-premature difference', 'difficulty in giving hurtful news-inability to associate with death' and 'attachment-burnout' under the theme of experiencing neonatal loss.It was seen that nurses' emotions about working at neonatal intensive care unit were generally positive; however, these emotions changed to negative after neonate's relapsing and death.
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<a href="http://doi.org/10.1177/0030222820971880" target="_blank" rel="noreferrer noopener">10.1177/0030222820971880</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
Can Ş
Death
Durgun H
dying baby
Emotions
January 2021 List
Köktürk Dalcalı B
neonatal intensive care
Nurse
Omega
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.11.001</a>
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Health care professionals' experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators
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Journal of Pain and Symptom Management
Date
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2020
Subject
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Bereavement; palliative care; end-of-life; Health Personnel; Terminal Care; Child Loss
Creator
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Kochen EM; Boelen PA; Teunissen SCCM; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Description
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CONTEXT: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into the health care professionals' (HCPs) intentions and strategies in pre-loss care during the end-of-life is still lacking. OBJECTIVES: To create a starting point for improvement of pre-loss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end-of-life. METHODS: Exploratory qualitative research using individual semi-structured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team. RESULTS: Nineteen HCPs participated. HCPs tried to ensure that (1) parents could reflect on the care received as concordant to their preferences and (2) were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While employing these strategies, HCPs faced several difficulties: uncertainty about the illness-course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues and making joint decisions with colleagues. CONCLUSIONS: HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and wellbeing during the end-of-life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence and training is needed to improve pre-loss care in pediatrics.
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.001</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
Boelen PA
Child Loss
de Jonge RR
end-of-life
Grootenhuis MA
Health Personnel
January 2021 List
Jenken F
Journal of Pain and Symptom Management
Kars MC
Kochen EM
Palliative Care
Terminal Care
Teunissen SCCM
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.5334/ijic.5545" target="_blank" rel="noreferrer noopener">http://doi.org/10.5334/ijic.5545</a>
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Title
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Understanding Young People and Their Care Providers' Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis
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International Journal of Integrated Care
Date
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2020
Subject
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paediatrics; healthcare providers; family-centred care; integrated care; patient experience; person-centred care; Person-Driven Care Special Collection.
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Johnson H; Simons M; Newcomb D; Borkoles E
Description
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INTRODUCTION: Benefits of integrated care include improved health outcomes and more satisfaction with experiences of care for consumers. For children and young people with chronic and complex health conditions, their care may be fragmented due to the multitude of healthcare providers involved. This paper describes the experiences of integrated care in a paediatric tertiary hospital. THEORY AND METHODS: Using an Interpretive Phenomenological Analysis approach, semi-structured interviews were conducted with children and young people, their parents and healthcare providers to explore stakeholders' integrated care experiences. RESULTS: Nineteen interviews were completed (6 children and young people, 7 parents and 6 healthcare providers) and transcribed verbatim. Two recurrent themes were applicable across the three cohorts: 'agency and empowerment' and 'impact of organisational systems, supports and structures'. DISCUSSION AND CONCLUSION: Stakeholders' experiences of integrated care highlighted the need to examine the discrepancies between healthcare strategies, policies and service delivery within a complex, and often inflexible organisational structure. Power imbalance and family agency (including directly with children and young people) needs to be addressed to support the implementation of integrated care.
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<a href="http://doi.org/10.5334/ijic.5545" target="_blank" rel="noreferrer noopener">10.5334/ijic.5545</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
Borkoles E
Family-centred Care
Healthcare Providers
integrated care
International Journal Of Integrated Care
January 2021 List
Johnson H
Newcomb D
Paediatrics
Patient experience
person-centred care
Person-Driven Care Special Collection.
Simons M
-
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Title
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January 2021 List
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January 2021 List
URL Address
<a href="http://doi.org/10.1002/14651858.CD002271.pub3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/14651858.CD002271.pub3</a>
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Title
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Continuous positive airway pressure (CPAP) for respiratory distress in preterm infants
Publisher
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Cochrane Database of Systematic Reviews
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Humans; Infant Newborn; Treatment Failure; Infant Premature; Randomized Controlled Trials as Topic; Selection Bias; Infant Low Birth Weight; Pneumothorax/etiology; Outcome Assessment Health Care; Bronchopulmonary Dysplasia/etiology; Continuous Positive Airway Pressure/adverse effects/methods; Intermittent Positive-Pressure Ventilation/adverse effects; Pulmonary Surfactants/therapeutic use; Respiratory Insufficiency/prevention & control; Respiratory Distress Syndrome Newborn/mortality/therapy
Creator
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Ho JJ; Subramaniam P; Davis PG
Description
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BACKGROUND: Respiratory distress, particularly respiratory distress syndrome (RDS), is the single most important cause of morbidity and mortality in preterm infants. In infants with progressive respiratory insufficiency, intermittent positive pressure ventilation (IPPV) with surfactant has been the usual treatment, but it is invasive, potentially resulting in airway and lung injury. Continuous positive airway pressure (CPAP) has been used for the prevention and treatment of respiratory distress, as well as for the prevention of apnoea, and in weaning from IPPV. Its use in the treatment of RDS might reduce the need for IPPV and its sequelae. OBJECTIVES: To determine the effect of continuous distending pressure in the form of CPAP on the need for IPPV and associated morbidity in spontaneously breathing preterm infants with respiratory distress. SEARCH METHODS: We used the standard strategy of Cochrane Neonatal to search CENTRAL (2020, Issue 6); Ovid MEDLINE and Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Daily and Versions; and CINAHL on 30 June 2020. We also searched clinical trials databases and the reference lists of retrieved articles for randomised controlled trials and quasi-randomised trials. SELECTION CRITERIA: All randomised or quasi-randomised trials of preterm infants with respiratory distress were eligible. Interventions were CPAP by mask, nasal prong, nasopharyngeal tube or endotracheal tube, compared with spontaneous breathing with supplemental oxygen as necessary. DATA COLLECTION AND ANALYSIS: We used standard methods of Cochrane and its Neonatal Review Group, including independent assessment of risk of bias and extraction of data by two review authors. We used the GRADE approach to assess the certainty of evidence. Subgroup analyses were planned on the basis of birth weight (greater than or less than 1000 g or 1500 g), gestational age (groups divided at about 28 weeks and 32 weeks), timing of application (early versus late in the course of respiratory distress), pressure applied (high versus low) and trial setting (tertiary compared with non-tertiary hospitals; high income compared with low income) MAIN RESULTS: We included five studies involving 322 infants; two studies used face mask CPAP, two studies used nasal CPAP and one study used endotracheal CPAP and continuing negative pressure for a small number of less ill babies. For this update, we included one new trial. CPAP was associated with lower risk of treatment failure (death or use of assisted ventilation) (typical risk ratio (RR) 0.64, 95% confidence interval (CI) 0.50 to 0.82; typical risk difference (RD) -0.19, 95% CI -0.28 to -0.09; number needed to treat for an additional beneficial outcome (NNTB) 6, 95% CI 4 to 11; I(2) = 50%; 5 studies, 322 infants; very low-certainty evidence), lower use of ventilatory assistance (typical RR 0.72, 95% CI 0.54 to 0.96; typical RD -0.13, 95% CI -0.25 to -0.02; NNTB 8, 95% CI 4 to 50; I(2) = 55%; very low-certainty evidence) and lower overall mortality (typical RR 0.53, 95% CI 0.34 to 0.83; typical RD -0.11, 95% CI -0.18 to -0.04; NNTB 9, 95% CI 2 to 13; I(2) = 0%; 5 studies, 322 infants; moderate-certainty evidence). CPAP was associated with increased risk of pneumothorax (typical RR 2.48, 95% CI 1.16 to 5.30; typical RD 0.09, 95% CI 0.02 to 0.16; number needed to treat for an additional harmful outcome (NNTH) 11, 95% CI 7 to 50; I(2) = 0%; 4 studies, 274 infants; low-certainty evidence). There was no evidence of a difference in bronchopulmonary dysplasia, defined as oxygen dependency at 28 days (RR 1.04, 95% CI 0.35 to 3.13; I(2) = 0%; 2 studies, 209 infants; very low-certainty evidence). The trials did not report use of surfactant, intraventricular haemorrhage, retinopathy of prematurity, necrotising enterocolitis and neurodevelopment outcomes in childhood. AUTHORS' CONCLUSIONS: In preterm infants with respiratory distress, the application of CPAP is associated with reduced respiratory failure, use of mechanical ventilation and mortality and an increased rate of pneumothorax compared to spontaneous breathing with supplemental oxygen as necessary. Three out of five of these trials were conducted in the 1970s. Therefore, the applicability of these results to current practice is unclear. Further studies in resource-poor settings should be considered and research to determine the most appropriate pressure level needs to be considered.
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<a href="http://doi.org/10.1002/14651858.CD002271.pub3" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD002271.pub3</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
Bronchopulmonary Dysplasia/etiology
Cochrane Database of Systematic Reviews
Continuous Positive Airway Pressure/adverse effects/methods
Davis PG
Ho JJ
Humans
Infant Low Birth Weight
Infant Newborn
Infant Premature
Intermittent Positive-Pressure Ventilation/adverse effects
January 2021 List
Outcome Assessment Health Care
Pneumothorax/etiology
Pulmonary Surfactants/therapeutic use
Randomized Controlled Trials as Topic
Respiratory Distress Syndrome Newborn/mortality/therapy
Respiratory Insufficiency/prevention & control
Selection Bias
Subramaniam P
Treatment Failure
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1213/ane.0000000000004585" target="_blank" rel="noreferrer noopener">http://doi.org/10.1213/ane.0000000000004585</a>
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Title
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Adverse Events During Intrahospital Transport of Critically Ill Children: A Systematic Review
Publisher
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Anesthesia & Analgesia
Date
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2020
Subject
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Infant; Adolescent; Child; Humans; Child Preschool; Pediatrics; Infant Newborn; Critical Illness/therapy; Critical Care/methods; Transportation of Patients
Creator
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Haydar B; Baetzel A; Elliott A; MacEachern M; Kamal A; Christensen R
Description
An account of the resource
Intrahospital transport of a critically ill patient is often required to achieve a diagnostic and/or therapeutic objective. However, clinicians who recommend a procedure that requires transport are often not fully aware of the risks of transport. Clinicians involved in the care of critically ill children may therefore benefit from a clear enumeration of adverse events that have occurred during transport, risk factors for those events, and guidance for event prevention. The objective of this review was to collect all published harm and adverse events that occurred in critically ill children in the context of transport within a medical center, as well as the incidence of each type of event. A secondary objective was to identify what interventions have been previously studied that reduce events and to collect recommendations for harm prevention from study authors. Ovid MEDLINE, Cochrane Central Register of Controlled Trials, Embase, and CINAHL were searched in January 2018 and again in December 2018. Terms indicating pediatric patients, intrahospital transport, critical illness, and adverse events were used. Titles and abstracts were screened and full text was reviewed for any article meeting inclusion criteria. If articles included both children and adults, incidence data were collected only if the number of pediatric patients could be ascertained. Of 471 full-text articles reviewed, 40 met inclusion criteria, of which 24 included only children, totaling 4104 patient transports. Heterogeneity was high, owing to a wide range of populations, settings, data collection methods, and outcomes. The incidence of adverse events varied widely between studies. Examples of harm included emergent tracheostomy, pneumothorax, and cardiac arrest requiring chest compressions. Respiratory and airway events were the most common type of adverse event. Hypothermia was common in infants. One transport-associated death was reported. When causation was assessed, most events were judged to have been preventable or potentially mitigated by improved double-checks and usage of checklists. Prospective studies demonstrated the superiority of mechanical ventilation over manual ventilation for intubated patients. Risk of adverse events during critical care transport appears to relate to the patient's underlying illness and degree of respiratory support. Recommendations for reducing these adverse events have frequently included the use of checklists. Other recommendations include optimization of the patient's physiological status before transport, training with transport equipment, double-checking of equipment before transport, and having experienced clinicians accompany the patient. All available recommendations for reducing transport-associated adverse events in included articles were collated and included.
Identifier
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<a href="http://doi.org/10.1213/ane.0000000000004585" target="_blank" rel="noreferrer noopener">10.1213/ane.0000000000004585</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
Adolescent
Anesthesia & Analgesia
Baetzel A
Child
Child Preschool
Christensen R
Critical Care/methods
Critical Illness/therapy
Elliott A
Haydar B
Humans
Infant
Infant Newborn
January 2021 List
Kamal A
MacEachern M
Pediatrics
Transportation of Patients
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.3389/fped.2020.572933" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.572933</a>
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Title
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Fostering Vicarious Resilience for Perinatal Palliative Care Professionals
Publisher
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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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grief; ethical; burnout; perinatal; palliative; self-care; compassion; resiliency
Creator
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Grauerholz KR; Fredenburg M; Jones PT; Jenkins KN
Description
An account of the resource
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions. Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency. Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals. Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.
Identifier
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<a href="http://doi.org/10.3389/fped.2020.572933" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.572933</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
Burnout
compassion
ethical
Fredenburg M
Frontiers in Pediatrics
Grauerholz KR
Grief
January 2021 List
Jenkins KN
Jones PT
Palliative
Perinatal
resiliency
self-care
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1016/j.ctim.2020.102402" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ctim.2020.102402</a>
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Title
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Safety and pharmacokinetics of medical cannabis preparation in a monocentric series of young patients with drug resistant epilepsy
Publisher
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Complementary Therapies in Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adolescent; Adult; Child; Female; Humans; Male; Child Preschool; Dose-Response Relationship Drug; Young Adult; Prospective Studies; Cannabidiol (CBD); Childhood; Delta-9-tetrahydrocannabinol (THC); Drug-resistant epilepsy; Medical cannabis galenic preparation; Drug Resistant Epilepsy/drug therapy; Medical Marijuana/administration & dosage/adverse effects/pharmacokinetics
Creator
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Gherzi M; Milano G; Fucile C; Calevo MG; Mancardi MM; Nobili L; Astuni P; Marini V; Barco S; Cangemi G; Manfredini L; Mattioli F; De Grandis E
Description
An account of the resource
OBJECTIVES: To evaluate safety and pharmacokinetic parameters (PK) of medical cannabis in add-on for children and young adults with drug-resistant epilepsy. DESIGN, SETTING: Ten patients (4 females, 6 males, age 2.5-23.2 years) were enrolled in a prospective open trial with a galenic preparation (decoction) of Italian cannabis (FM2, ratio THC:CBD = 3:5, range THC 5.2-7.2 %; CBD 8.2-11.1 %). Patients received the first dose in Hospital, progressively augmented by CBD dose titration (from 1 to 4 mg/kg/day). OUTCOME MEASURES: In order to assess safety, blood parameters, heart rates and electrocardiograms (ECGs) were evaluated before the enrollment and during the follow up. The PK study was performed measuring THC and CBD concentrations by UHPLC-MS/MS in plasma samples collected during the first administration and at each follow-up visit. RESULTS: Two out of ten patients stopped the treatment for adverse events (detected in 6/10: gastroenteric, sleep or behavioral disorders) and difficulties in drug supply. We observed minor ECG alterations in two patients and asymptomatic transient reductions of fibrinogen after 6 months of therapy. The PK study during follow-up revealed statistically significant correlations between THC-CBD blood concentrations and: volumes of decoction, FM2 and THC-CBD daily dosages. CONCLUSIONS: The present study, although with some limitations, shows a good safety profile of medical cannabis in children and young patients with drug-resistant epilepsy and encourages the possibility of further studies with oral cannabis-based drugs. The correlations between THC-CBD plasma concentrations and their administered dosages underline the need of a therapeutic drug monitoring for cannabinoids therapy.
Identifier
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<a href="http://doi.org/10.1016/j.ctim.2020.102402" target="_blank" rel="noreferrer noopener">10.1016/j.ctim.2020.102402</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
Adolescent
Adult
Astuni P
Barco S
Calevo MG
Cangemi G
Cannabidiol (CBD)
Child
Child Preschool
childhood
Complementary Therapies in Medicine
De Grandis E
Delta-9-tetrahydrocannabinol (THC)
Dose-Response Relationship Drug
Drug Resistant Epilepsy/drug therapy
Drug-resistant epilepsy
Female
Fucile C
Gherzi M
Humans
January 2021 List
Male
Mancardi MM
Manfredini L
Marini V
Mattioli F
Medical cannabis galenic preparation
Medical Marijuana/administration & dosage/adverse effects/pharmacokinetics
Milano G
Nobili L
Prospective Studies
Young Adult
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000707" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000707</a>
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Title
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Changing the Culture of Pediatric Palliative Care at the Bedside
Publisher
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Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatrics; palliative care; quality of life; clinical practice; nursing education; palliative nursing; curriculum development; continuing education
Creator
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Drach LL; Cook M; Shields S; Burger KJ
Description
An account of the resource
The benefits of palliative care services have been widely documented; however, many organizations are unable to financially support the number of professionals needed to meet the growing demand. Nurses receive minimal training in palliative care, and the resulting knowledge gap can lead to a lack of confidence when providing the essential aspects of palliative care. Recognizing the needs of patients and staff, one organization created a Palliative Care Champions Program to support and educate bedside staff. The Champions received initial and ongoing education, allowing them to function as liaisons to the Palliative Care Team while providing education and mentorship to staff. A program evaluation tool measuring Champion comfort and confidence in the provision of palliative care has shown positive results. Champions reported an increase in confidence in their ability to identify appropriate consults and mentor staff, as well as an increase in comfort in being considered an expert in palliative care. Consults to the Palliative Care service increased by 28% within the first 12 months of program implementation. The Palliative Care Champions Program framework can be easily adapted to fit the needs of other organizations.
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000707</a>
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2020
Burger KJ
Clinical Practice
continuing education
Cook M
curriculum development
Drach LL
January 2021 List
Journal of Hospice and Palliative Nursing
nursing education
Palliative Care
palliative nursing
Pediatrics
Quality Of Life
Shields S
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1111/sjop.12690" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/sjop.12690</a>
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Title
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Enhancing the care of children with chronic diseases through the narratives of patient, physician, nurse and carer
Publisher
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Scandinavian Journal of Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children; chronic disease; qualitative research; bio-psycho-social model; Narrative medicine
Creator
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Continisio GI; Nunziata F; Coppola C; Bruzzese D; Spagnuolo MI; Guarino A
Description
An account of the resource
We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers, physicians, and nurses. By a textual analysis, narratives were classified on their predominant focus as disease (biological focus), illness (psychologic focus), or sickness (social focus). Sixty-one percent of narrative' text were classified as illness, 28% as disease and 11% as sickness. All narratives had a degree of illness focus. Narratives by patients and physicians on the one hand, and nurses' and mothers' on the other were disease focused. Narratives were also evaluated with respect to the type of medical condition: Illness was largely prevalent in all but Crohn's disease and HIV infection, the latter having a predominance of sickness most probably related to stigma. Narrative exploration proved a valuable tool for understanding and addressing the needs of children with complex conditions. Narrative approaches allow identification of the major needs of different patients according to health conditions and story tellers. In the narratives, we found a greater illness and disease focus and surprisingly a low sickness focus, except with HIV stories. Narrative medicine provides a tool to strengthen the BPS model in health care.
Identifier
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<a href="http://doi.org/10.1111/sjop.12690" target="_blank" rel="noreferrer noopener">10.1111/sjop.12690</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
bio-psycho-social model
Bruzzese D
Children
Chronic Disease
Continisio GI
Coppola C
Guarino A
January 2021 List
narrative medicine
Nunziata F
Qualitative Research
Scandinavian Journal Of Psychology
Spagnuolo MI
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.11.007</a>
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Title
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Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children; life-threatening condition; pediatric palliative care; child abuse; Maltreatment
Creator
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Cleveland RW; Ullrich C; Slingsby B; Keefer P
Description
An account of the resource
CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPT). More information is needed to inform and optimize collaborative care. OBJECTIVES: Define and describe the population of children with PPC involvement for whom there was concern for maltreatment. METHODS: Single-center, retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables. RESULTS: Among 1,804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics. CONCLUSION: PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be are aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.007</a>
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2020
Child Abuse
Children
Cleveland RW
January 2021 List
Journal of Pain and Symptom Management
Keefer P
Life-threatening Condition
Maltreatment
Pediatric Palliative Care
Slingsby B
Ullrich C
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1186/s12910-020-00555-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12910-020-00555-6</a>
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Physicians' attitudes in relation to end-of-life decisions in Neonatal Intensive Care Units: a national multicenter survey
Publisher
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BMC Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
End-of-life care; Attitude; Neonates; Withdrawing treatment; Neonatal Intensive Care Units; Withholding treatment
Creator
An entity primarily responsible for making the resource
Chatziioannidis I; Iliodromiti Z; Boutsikou T; Pouliakis A; Giougi E; Sokou R; Vidalis T; Xanthos T; Marina C; Iacovidou N
Description
An account of the resource
BACKGROUND: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians' profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. METHODS: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians' attitude and views ranging from value of life to quality of life approach (scale 1-5). RESULTS: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians' educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score. CONCLUSIONS: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.
Identifier
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<a href="http://doi.org/10.1186/s12910-020-00555-6" target="_blank" rel="noreferrer noopener">10.1186/s12910-020-00555-6</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
Attitude
Bmc Medical Ethics
Boutsikou T
Chatziioannidis I
End-of-life Care
Giougi E
Iacovidou N
Iliodromiti Z
January 2021 List
Marina C
Neonatal Intensive Care Units
Neonates
Pouliakis A
Sokou R
Vidalis T
Withdrawing Treatment
Withholding Treatment
Xanthos T
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000694" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000694</a>
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Title
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COVID-19 Pandemic Restrictions and the Use of Technology for Pediatric Palliative Care in the Acute Care Setting
Publisher
An entity responsible for making the resource available
Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Female; Humans; Parents; Intensive Care Units Pediatric; Hospice and Palliative Care Nursing; Terminally Ill; Palliative Care; Videoconferencing; Infection Control; Pandemics; Betacoronavirus; Visitors to Patients; Coronavirus Infections/epidemiology; Pneumonia Viral/epidemiology
Creator
An entity primarily responsible for making the resource
Bettini EA
Description
An account of the resource
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical condition or is terminally ill. These situations have necessitated the use of technology such as the Zoom platform to have difficult conversations concerning complex medical decision-making and goals of care. In cases where the child is deemed at immediate end of life, many facilities will allow both parents to be at the bedside, but no other family or friends that may be integral support to the parents or child. These situations have compelled the use of FaceTime, Zoom, or Skype technology to facilitate real-time support at end of life for these young patients and their caregivers. This article presents a case where technologies such as these were utilized to assist a family in goals-of-care discussions and at end of life for an infant in the intensive care unit at a large urban pediatric care facility during the COVID-19 pandemic.
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<a href="http://doi.org/10.1097/njh.0000000000000694" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000694</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
Betacoronavirus
Bettini EA
Coronavirus Infections/epidemiology
Female
Hospice And Palliative Care Nursing
Humans
Infant
Infection Control
Intensive Care Units Pediatric
January 2021 List
Journal of Hospice and Palliative Nursing
Palliative Care
Pandemics
Parents
Pneumonia Viral/epidemiology
Terminally Ill
Videoconferencing
Visitors to Patients
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Title
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January 2021 List
Text
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January 2021 List
URL Address
<a href="http://doi.org/10.1055/s-0040-1719071" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/s-0040-1719071</a>
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Shifting Provider Attitudes and Institutional Resources Surrounding Resuscitation at the Limit of Gestational Viability
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American Journal of Perinatology
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2020
Subject
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resuscitation; provider perspectives; gestational viability; periviable infants
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Arbour K; Lindsay E; Laventhal N; Myers P; Andrews B; Klar A; Dunbar AE
Description
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Objective This study aimed to provide contemporary data regarding provider perceptions of appropriate care for resuscitation and stabilization of periviable infants and institutional resources available to providers. Study Design A Qualtrics survey was emailed to 672 practicing neonatologists in the United States by use of public databases. Participants were asked about appropriate delivery room care for infants born at 22 to 26 weeks gestational age, factors affecting decision-making, and resources utilized regarding resuscitation. Descriptive statistics were used to analyze the dataset. Results In total, 180 responses were received, and 173 responses analyzed. Regarding preferred course of care based on gestational age, the proportion of respondents endorsing full resuscitation decreased with decreasing gestational age (25 weeks = 99%, 24 = 64%, 23 = 16%, and 22 = 4%). Deference to parental wishes correspondingly increased with decreasing gestational age (25 weeks = 1%, 24 = 35%, 23 = 82%, and 22 = 46%). Provision of comfort care was only endorsed at 22 to 23 weeks (23 weeks = 2%, 22 = 50%). Factors most impacting decision-making at 22 weeks gestational age included: outcomes based on population data (79%), parental wishes (65%), and quality of life measures (63%). Intubation with a 2.5-mm endotracheal tube (84%), surfactant administration in the delivery room (77%), and vascular access (69%) were the most supported therapies for initial stabilization. Availability of institutional resources varied; the most limited were obstetric support for cesarean delivery at the limit of viability (37%), 2.0-mm endotracheal tube (45%), small baby protocols (46%), and a consulting palliative care teams (54%). Conclusion There appears to be discordance in provider attitudes surrounding preferred actions at 23 and 22 weeks. Provider attitudes regarding decision-making at the limit of viability and identified resource limitations are nonuniform. Between-hospital variations in outcomes for periviable infants may be partly attributable to lack of provider consensus and nonuniform resource availability across institutions. Key Points Within the past decade, there has been a shift in the gray zone from 23-24 to 22-23 weeks gestation. Attitudes around resuscitation of infants are nonuniform despite perceived standardized approaches. Institutional variability in resources may contribute to variation in outcomes of periviable infants. Copyright © 2020 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA.
Identifier
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<a href="http://doi.org/10.1055/s-0040-1719071" target="_blank" rel="noreferrer noopener">10.1055/s-0040-1719071</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 Perinatology
Andrews B
Arbour K
Dunbar AE
gestational viability
January 2021 List
Klar A
Laventhal N
Lindsay E
Myers P
periviable infants
provider perspectives
Resuscitation
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Dublin Core
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Title
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January 2021 List
Text
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URL Address
<a href="http://doi.org/10.2147/jmdh.s282108" target="_blank" rel="noreferrer noopener">http://doi.org/10.2147/jmdh.s282108</a>
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Use of a Mortality Prediction Model in Children on Mechanical Ventilation: A 5-Year Experience in a Tertiary University Hospital
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Journal of Multidisciplinary Healthcare
Date
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2020
Subject
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pediatric intensive care unit; mortality; pediatric risk of mortality score; ventilation
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Albuali WH; Algamdi AA; Hasan EA; Al-Qahtani MH; Yousef AA; Al Ghamdi MA; Bubshait DK; Alshahrani MS; AlQurashi FO; Bou Shahmah TA; Awary BH
Description
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PURPOSE: Currently, several scoring systems for predicting mortality in severely ill children who require treatment in a pediatric intensive care unit (PICU) have been established. However, despite providing high-quality care, children might develop complications that can cause rapid deterioration in health status and can lead to death. Hence, this study aimed to establish a simple early predictive mortality (SEPM) model with high specificity in identifying severely ill children who would possibly benefit from extensive mechanical ventilation during PICU admission. PATIENTS AND METHODS: This is a retrospective longitudinal study that included pediatric patients aged older than two weeks who were on mechanical ventilation and were admitted to the PICU of King Fahd Hospital of the University from January 2015 to December 2019. RESULTS: In total, 400 pediatric patients were included in this study. The mortality rate of children on mechanical ventilation was 28.90%, and most deaths were associated with respiratory (n = 124 [31%]), cardiovascular (n = 76 [19%]), and neurological (n = 68 [17%]) causes. The SEPM model was reported to be effective in predicting mortality, with an accuracy, specificity, and sensitivity of 92.5%, 97.31%, and 66.15%, respectively. Moreover, the accuracy, specificity, and sensitivity of the Pediatric Risk of Mortality (PRISM) III score in predicting mortality was 95.25%, 98.51%, and 78.46%, respectively. CONCLUSION: The SEPM model had a high specificity for mortality prediction. In this model, only six clinical predictors were used, which might be easily obtained in the early period of PICU admission. The ability of the SEPM model and the PRISM III score in predicting mortality in severely ill children was comparable. However, the accuracy of the newly established model in other settings should be validated, and a prospective longitudinal study that considers the effect of the treatment on the model's predictive ability must be conducted.
Identifier
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<a href="http://doi.org/10.2147/jmdh.s282108" target="_blank" rel="noreferrer noopener">10.2147/jmdh.s282108</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
Al Ghamdi MA
Al-Qahtani MH
Albuali WH
Algamdi AA
AlQurashi FO
Alshahrani MS
Awary BH
Bou Shahmah TA
Bubshait DK
Hasan EA
January 2021 List
Journal of Multidisciplinary Healthcare
Mortality
Pediatric Intensive Care Unit
pediatric risk of mortality score
ventilation
Yousef AA
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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January 2021 List
URL Address
<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1178632920972655</a>
Dublin Core
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Title
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Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Publisher
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Health Services Insights
Date
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2020
Subject
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child; Family caregivers; Informal caregivers; needs assessment; pediatric; self report; Surveys and questionnaires
Creator
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Stochitoiu IA; Vadeboncoeur C
Description
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Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.
Identifier
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<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">10.1177/1178632920972655</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
Child
Family Caregivers
Health Services Insights
Informal caregivers
January 2021 List
Needs Assessment
Pediatric
Self Report
Stochitoiu IA
Surveys And Questionnaires
Vadeboncoeur C