1
40
23
-
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Title
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July 2018 List
Text
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July 2018 List
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<a href="http://doi.org/10.1016/j.acap.2017.02.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.acap.2017.02.010</a>
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Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
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Academic Pediatrics
Date
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2017
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Barnert ES; Coller R J; Nelson BB; Thompson LR; Chan V; Padilla C; Klitzner TS; Szilagyi M; Chung P J
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<a href="http://doi.org/10.1016/j.acap.2017.02.010" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2017.02.010</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).
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OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.
2017
Academic Pediatrics
Attitude Of Health Personnel
Barnert ES
Chan V
Child
Child Health Services/organization & administration
Chung P J
Coller R J
Disabled Children/psychology
Female
Health Personnel/psychology
Humans
Interviews As Topic
July 2018 List
Klitzner TS
Male
Needs Assessment
Nelson BB
Padilla C
Patient-centered Care
Population Health
Preschool
Szilagyi M
Thompson LR
Treatment Outcome
-
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2018-315002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2018-315002</a>
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Management of dystonia in paediatric palliative care
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Archives of Disease in Childhood
Date
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2018
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Slater T; Hughes G; Lumsden DE; Laddie J
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<a href="http://doi.org/10.1136/archdischild-2018-315002" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315002</a>
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Dystonia is a challenging neurological symptom found in paediatric palliative care (PPC).1 While well defined as a movement disorder characterised by sustained or intermittent muscle contractions associated with abnormal movement and posturing, dystonia is less well recognised and identified by clinicians.2 A wide range of therapies exist but consensus is often lacking regarding choice of treatment. No studies to date have analysed differences in management of dystonia between palliative care and neurology services. We performed a survey of practice of the PPC database at Evelina London Children’s Hospital, a non-malignant caseload covering southeast England. Specifically with regard to dystonia, documentation over 12 months (preceding July 2017) was retrospectively reviewed to assess …
2018
Archives of Disease in Childhood
Hughes G
July 2018 List
Laddie J
Lumsden DE
Slater T
-
Dublin Core
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Title
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July 2018 List
Text
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July 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318772749" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318772749</a>
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The engagement of young people in their own advance care planning process: A systematic narrative synthesis
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Palliative Medicine
Date
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2018
Creator
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Hughes B; O'Brien MR; Flynn A; K Knighting
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<a href="http://doi.org/10.1177/0269216318772749" target="_blank" rel="noreferrer noopener">10.1177/0269216318772749</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).
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BACKGROUND: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their own advance care plan is important to shape future practice and facilitate young people's wishes. AIM: To identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process. DESIGN: A systematic narrative synthesis according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using a quality assessment framework previously used in similar research. DATA SOURCES: CINAHL Complete, MEDLINE, PubMed and PsycINFO were searched for articles published between 1 January 1990 and 31 October 2017. Grey literature was searched using Google Scholar and Open Grey. RESULTS: Most studies related to the engagement of young people were conducted in hospitals or other institutions. Research reported not only the aim to include young people in their own advance care planning but also potential barriers to engagement. Barriers include poor communication, conflict within relationships of those in the planning process and patchy education and training for healthcare professionals. Some existing studies are characterised by a lack of rigorous, high-quality research, limiting their impact. CONCLUSION: Irrespective of setting, engagement of young people would benefit their advance care planning. More detailed, high-quality research is needed to understand the extent of the barriers to young people's engagement in their own advance care plan and how to facilitate their involvement.
2018
Abdel-All M
BMC Health Serv Res.
Chow CK
Evans RG
Guggilla R
Joshi R
July 2018 List
Kalyanram K
Kartik K
Mahal A
Maulik PK
Mini GK
Oldenburg B
Riddell M
Suresh O
Thankappan KRT
Thomas N
Thrift AG
-
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Title
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July 2018 List
Text
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Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14394</a>
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Low prevalence of palliative care and ethics consultations for children with chronic critical illness
Publisher
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BMC Infectious Diseases
Date
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2018
Creator
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Xu L; Gao H; Zeng J; Liu J; Lu C; Guan X; Qian S; Xie Z
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<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">10.1111/apa.14394</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).
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Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from pre-mature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child’s life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care. Paediatric intensive care units (ICUs) across the United States (U.S.) report increasing numbers of children with prolonged and recurrent hospitalisations and medical complexity(1). We have suggested that this population be considered ‘chronically critically ill (CCI)’ (2).The CCI designation for adult ICU patients signals to families and clinicians alike that thepatient’s prognosis is poorer than predicted by their primary diagnosis alone. Nelson et al. (3) have argued that palliative care can enhance care planning, communication and quality of life for patients with CCI. The ethical challenges that can arise for these patients, for example, conflicting values and treatment burdens, also highlight an obvious role for ethics consultation.
2018
BMC Infectious Diseases
Gao H
Guan X
July 2018 List
Liu J
Lu C
Qian S
Xie Z
Xu L
Zeng J
-
Dublin Core
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0324-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0324-2</a>
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Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014
Publisher
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BMC Palliative Care.
Date
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2018
Creator
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Friedel M; Brichard B; Fonteyne C; Renard M; Misson JP; Vandecruys E; Tonon C; Verfaillie F; Hendrijckx G; Andersson N; Ruysseveldt I; Moens K; Degryse JM; Aujoulat I
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<a href="http://doi.org/10.1186/s12904-018-0324-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0324-2</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).
Description
An account of the resource
BACKGROUND: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. METHODS: Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. RESULTS: Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. CONCLUSION: PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.
2018
Andersson N
Aujoulat I
BMC Palliative Care.
Brichard B
Degryse JM
Fonteyne C
Friedel M
Hendrijckx G
July 2018 List
Misson JP
Moens K
Renard M
Ruysseveldt I
Tonon C
Vandecruys E
Verfaillie F
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1474285" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1474285</a>
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Title
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Life after Loss: Parent Bereavement and Coping Experiences after Infant Death in the Neonatal Intensive Care Unit
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Bakitas M; Meneses K
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<a href="http://doi.org/10.1080/07481187.2018.1474285" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1474285</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).
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The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement and coping experiences after infant death in the NICU. The Dual Process Model of Coping with Bereavement was used as a conceptual framework to help understand how parents cope with grief after infant death. Living with infant death was a process that resulted in major life changes and a process of oscillating among various coping strategies.
2018
Bakitas M
Christian BJ
Currie ER
Day S
Death studies
Hinds PS
July 2018 List
Meneses K
Perna SJ
Robinson C
-
Dublin Core
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1455765" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1455765</a>
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End-of-life trends and patterns among children in the US foster care system: 2005-2015
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Lindley LC; Slayter EM
Identifier
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<a href="http://doi.org/10.1080/07481187.2018.1455765" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1455765</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).
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Drawing on national, longitudinal Adoption and Foster Care Analysis and Reporting System data (2005-2015), demographic, health, foster care, and geographic characteristics of decedents (N = 3,653) aged 1-17 years were examined. On average, decedents were 6 years old, the highest proportion died as infants, and experienced significant trauma in their short lives either through maltreatment or exposure to parental substance use. A noted increase in Medicaid coverage among decedents over time suggests critical access to concurrent treatment and hospice care, but this is unavailable to children with private insurance. This study has policy implications related to the 2010 Affordable Care Act.
2018
Bakitas M
Christian BJ
Currie ER
Day S
Death studies
Hinds PS
July 2018 List
Meneses K
Perna SJ
Robinson C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2017.1407380" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2017.1407380</a>
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Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Cantwell-Bartl A
Identifier
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<a href="http://doi.org/10.1080/07481187.2017.1407380" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1407380</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).
Description
An account of the resource
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents
2018
Cantwell-Bartl A
Child
Coping
Death studies
Grief
Human
Hypoplastic Left Heart Syndrome -- Diagnosis
Hypoplastic Left Heart Syndrome -- Psychosocial Factors
Hypoplastic Left Heart Syndrome -- Therapy
Interviews
July 2018 List
Models
Parent-child Relations
Parental Attitudes
Psychological
Recovery
Secondary Analysis
Thematic Analysis
-
Dublin Core
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0666" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0666</a>
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Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Chong LA; Chong PH; Chee J
Identifier
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<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0626</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).
Description
An account of the resource
BACKGROUND: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. OBJECTIVE: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused. DESIGN AND SETTING: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused. RESULTS: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations. CONCLUSION: Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.
2018
Clarke E
Dickerson JF
Gilmore M
Goddard KAB
Health Aff (Millwood).
Himes P
Jarvik GP
July 2018 List
Kauffman TL
Kraft SA
Leo MC
Lutz K
Lynch F L
McMullen C
Porter KM
Punj S
Reiss JA
Richards CS
Rope AF
Schneider JL
Wilfond BS
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2018.0256" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamapediatrics.2018.0256</a>
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Title
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R Package for Pediatric Complex Chronic Condition Classification
Publisher
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JAMA.
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Gordon LB; Shappell H; Massaro J; D'Agostino Sr RB; Brazier J; Campbell SE; Kleinman ME; Kieran MW
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2018.0256" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2018.0256</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).
Description
An account of the resource
Identification of children with complex chronic conditions (CCCs) is necessary to improve health care delivery and perform clinical research, because this patient population uses significant inpatient and outpatient medical resources.1 The original CCC classification was published in 2000.2 A second version was published in 2014 to reflect additions to the International Classification of Diseases system and the US adoption of the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision.3 The CCC classification is widely used in research (currently cited in more than 100 peer-reviewed journal publications). However, the current approach to assigning the CCC categories in health care–related data sets is limited by proprietary software and computational inefficiency. SAS and Stata software to assign CCC categories were published as appendices to the 2014 update,3 but not all investigators have access to these statistical packages. In addition, increasingly large data sets are available to investigators. Although the data processing capability of individual computers continues to improve, the SAS and Stata software can take significant time to run on data sets with millions of observations. The objective of this project was to develop computationally efficient software to generate the CCC categories using R, a free, open-source statistical environment.4 We then compared the SAS, Stata, and R software with respect to accuracy and speed of classification on a typical desktop system.
0 (Enzyme Inhibitors)
0 (Lamin Type A)
0 (Piperidines)
0 (prelamin A)
0 (Pyridines)
2018
Adolescent
Adult
Brazier J
Campbell SE
Cause Of Death
Child
Cohort Studies
D'Agostino Sr RB
EC 2.7.4.- (farnesyl phosphate kinase)
EC 2.7.4.- (Phosphotransferases (Phosphate Group Acceptor))
Enzyme Inhibitors/therapeutic use
Female
Gordon LB
Humans
IOW153004F (lonafarnib)
JAMA.
July 2018 List
Kaplan-Meier Estimate
Kieran MW
Kleinman ME
Lamin Type A/biosynthesis/metabolism
Male
Massaro J
Phosphotransferases (Phosphate Group Acceptor)/antagonists & inhibitors
Piperidines/therapeutic use
Post-Translational
Progeria/drug therapy/genetics/mortality
Protein Processing
Pyridines/therapeutic use
Shappell H
Young Adult
-
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Title
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July 2018 List
Text
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July 2018 List
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<a href="http://doi.org/10.1080/15325024.2018.1446271" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/15325024.2018.1446271</a>
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Child’s Play: The Role of Play in Mitigating the Fear of Death Among Pediatric Palliative Care Team Patients, Families, and Caregivers
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Journal of Loss & Trauma
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2018
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Crane JL; Davis CS
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<a href="http://doi.org/10.1080/15325024.2018.1446271" target="_blank" rel="noreferrer noopener">10.1080/15325024.2018.1446271</a>
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Terror Management Theory (TMT), derived from Ernest Becker’s The Denial of Death (1974), maintains that humans are motivated by the desire to overcome our fear of death by constructing meaning and significance in our lives in various ways, including making light of our mortality. In this paper, we examine the role of play as seriously ill children involved with a hospital-based palliative care team live out what may be the remainder of their lives. We question the function that play has, if any, in mitigating the fear of death among dying children and their caregivers. We explore formal and informal manners of therapeutic play among children and adults occurring in moments of terrible stress, pain, and the looming threat of death. We draw on playful representations of death from popular culture and from extended field research conducted with a pediatric palliative care team in a large regional children’s hospital caring for seriously ill children and their families, as patients, families, and caretakers struggle to make sense of their suffering, fear and loss.
2018
Attitude To Death
Caregivers -- Psychosocial Factors
Child
Crane JL
Critically Ill Patients -- Psychosocial Factors -- In Infancy and
Davis CS
Family Attitudes
Fear
Human
Journal of Loss & Trauma
July 2018 List
Pain
Palliative Care -- In Infancy and Childhood
Role Playing
-
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July 2018 List
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July 2018 List
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<a href="http://doi.org/10.1111/jan.13701" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jan.13701</a>
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Critical care nurses' experiences of caring for a dying child: A qualitative evidence synthesis
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Journal of Nursing Scholarship
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2018
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Thomas R; Phillips M; Hamilton RJ
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<a href="http://doi.org/10.1111/jan.13701" target="_blank" rel="noreferrer noopener">10.1111/jan.13701</a>
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AIM: To synthesise qualitative research examining the experience of critical care nurses caring for a dying child. BACKGROUND: Caring for a dying child remains one of the most difficult aspects of nursing, potentially leading to personal and professional distress. A thorough understanding of this experience for critical care nurses allows for improved delivery of care and support for the nurse. DESIGN: A qualitative evidence synthesis was undertaken, informed by Thomas and Harden's thematic synthesis methodology. DATA SOURCES: Studies were retrieved from CINAHL Plus, Scopus, OVID Medline and Embase, alongside hand-searching reference lists in February 2016. REVIEW METHODS: Two reviewers independently assessed each study using a multi-step screening process and performed critical appraisal of each included study. Data were extracted onto a pre-developed tool and analysed using thematic analysis. RESULTS: There is a blurred line between the role of the nurse as a person or a professional while caring for the child and family throughout hospitalisation and during and after the death. Each stage of care involves tasks and emotions that highlight the changing dominance of the nurse as either a person or professional. CONCLUSION: Personal, interpersonal and contextual factors affect delivery of care and impact of the death of the child on the critical care nurse. Reviewing individual and institutional practices could improve provision of care, inter-professional collaboration and support provided to staff involved. This article is protected by copyright. All rights reserved.
2018
Hamilton RJ
Journal Of Nursing Scholarship
July 2018 List
Phillips M
Thomas R
-
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July 2018 List
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July 2018 List
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<a href="http://doi.org/10.1089/jpm.2017.0307" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0307</a>
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Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients
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Journal of Palliative Medicine
Date
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2018
Creator
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Marsac ML; Kindler C; Weiss D; Ragsdale L
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<a href="http://doi.org/10.1089/jpm.2017.0307" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0307</a>
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Description
An account of the resource
BACKGROUND: Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. OBJECTIVE: This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. DESIGN: Systematic review. RESULTS: Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. CONCLUSIONS: Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.
2018
Journal of Palliative Medicine
July 2018 List
Kindler C
Marsac ML
Ragsdale L
Weiss D
-
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Title
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July 2018 List
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July 2018 List
URL Address
<a href="http://doi.org/10.1055/s-0037-1605369" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/s-0037-1605369</a>
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Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?
Publisher
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Journal of Pediatric Intensive Care
Date
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2018
Creator
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Rusalen F; Agosto C; Brugnaro L; Benini F
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<a href="http://doi.org/10.1055/s-0037-1605369" target="_blank" rel="noreferrer noopener">10.1055/s-0037-1605369</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).
Description
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The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
2018
Agosto C
Benini F
Brugnaro L
Home
Hospice
Intensive Care
Journal of Pediatric Intensive Care
July 2018 List
life-limiting disease
long-term ventilation
Mechanical Ventilation
Outcomes
Pediatric Palliative Care
Pediatrics
Rusalen F
-
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Title
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July 2018 List
Text
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Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1111/jnu.12389" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jnu.12389</a>
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Pain Management in the Pediatric Palliative Care Population
Publisher
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Journal of Pediatric Surgery
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Nordin A; Coleman A; Shi J; Wheeler K; Xiang H; Kenney B
Identifier
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<a href="http://doi.org/10.1111/jnu.12389" target="_blank" rel="noreferrer noopener">10.1111/jnu.12389</a>
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Description
An account of the resource
PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. METHODS: The literature was searched for the terms palliative, pediatric, and pain in PubMed, PsycINFO, Cumulative Index to Nursing and Allied HeALTH LITERATUre (CINAHL) Complete, and Google Scholar. The search was limited to papers in English that had been published from January 1, 2005, to December 31, 2016. RESULTS: These searches resulted in 918 articles, of which 29 met inclusion criteria. These 29 articles were reviewed and reported. Four broad themes emerged: patient and family experience, pain assessment, pharmacological pain management, and nonpharmaceutical interventions. CONCLUSIONS: Gaps in current research have been identified, such as investigating pediatric pain scales for the palliative care population and new complementary and alternative medical therapy and other interventions. More research is needed to bring innovative pain management interventions to the attention of pediatric caregivers.
2018
Coleman A
Journal Of Pediatric Surgery
July 2018 List
Kenney B
Nordin A
Shi J
Wheeler K
Xiang H
-
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.30" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.30</a>
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Children's outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit
Publisher
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Journal of Perinatology
Date
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2017
Creator
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de Boer JC; Gennissen L; Williams M; van Dijk M; Tibboel D; Reiss I; Naghib S; Sol J
Identifier
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<a href="http://doi.org/10.1038/jp.2017.30" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.30</a>
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OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's outcomes at 2-year follow-up. STUDY DESIGN: In an explorative observational study, 61 cases were evaluated. The children involved had been discussed in such a structured way from 2009 to 2012 in a level III-D neonatal intensive care unit. RESULTS: Decisions made were: full treatment (n=6), earlier restriction cancelled (n=3), treatment restriction (n=30) and palliative care (n=22). Parents of six children disagreed with the decision proposed. Thirteen (54%) of the 24 children who survived (39%) had moderate to severe neurological problems; 8 (33%) had additional sequelae; only one 2-year-old child was healthy. CONCLUSIONS: Decisions made varied to a large extent. The poor outcomes should be disseminated among decision makers. Future studies must explore new ways to improve outcome prediction, extend follow-up periods and consider what living with severe handicaps really means for both child and family.
2017
Child
Clinical Decision-Making/ethics
Critical Illness/mortality/therapy
de Boer JC
Female
Follow-up Studies
Gennissen L
Humans
Infant
Intensive Care Units
Journal Of Perinatology
July 2018 List
Male
Naghib S
Neonatal
Netherlands
Newborn
Palliative Care
Parents/psychology
Preschool
Prospective Studies
Reiss I
Sol J
Survival Analysis
Tibboel D
van Dijk M
Williams M
Withholding Treatment/ethics/standards
-
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1007/s40615-016-0224-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s40615-016-0224-1</a>
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Title
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Nursing Unit Environment Associated with Provision of Language Services in Pediatric Hospices
Publisher
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Journal of Racial & Ethnic Health Disparities
Date
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2017
Creator
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Lindley LC; Held ML; Henley KM; Miller KA; Pedziwol KE; Rumley LE
Identifier
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<a href="http://doi.org/10.1007/s40615-016-0224-1" target="_blank" rel="noreferrer noopener">10.1007/s40615-016-0224-1</a>
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Description
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Background Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use corresponds with improved patient comprehension of illness and care options, we lack an understanding of how the nurse work environment affects the provision of these services.
Methods Data were obtained from the 2007 National Home and Hospice Care Survey and included a study sample of 1251 pediatric hospice agencies. Variable selection was guided by structural contingency theory, which posits that organizational effectiveness is dependent upon how well an organization’s structure relates to its context. Using multivariate logistic regression, we analyzed the extent to which nursing unit environment predicted provision of translation services and interpreter services.
2017
Communication Barriers
Held ML
Henley KM
Hospice And Palliative Care Nursing
Hospice Care/og Organization & Administration
Hospice Care/sn Statistics & Numerical Data
Humans
Journal of Racial & Ethnic Health Disparities
July 2018 List
Leadership
Lindley LC
Miller KA
Nurses
Organizational Culture
Patient Safety
Pediatric Nursing
Pedziwol KE
Rumley LE
Translating
-
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1093/pch/pxy054.079" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/pch/pxy054.079</a>
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Is it a surprise? Shocking sub-optimal medication safety in children with medical complexity
Publisher
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Paediatrics & Child Health
Date
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2018
Creator
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Patel Hema; Bourassa M; Huth K; Vandecruys P
Identifier
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<a href="http://doi.org/10.1093/pch/pxy054.079" target="_blank" rel="noreferrer noopener">10.1093/pch/pxy054.079</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).
Description
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There are increasing numbers of children with medical complexity (CMC) worldwide. CMC make multiple transitions between healthcare settings and providers; frequently receiving multiple medications. While the risk of medication error in children is recognized, data on CMC, perhaps one of the most vulnerable groups, is lacking. OBJECTIVES To explore parental knowledge, perceptions and behaviours around medication safety and to identify and describe recalled medication errors in order to guide future efforts in quality and safety
2018
Bourassa M
Huth K
July 2018 List
Paediatrics & Child Health
Patel Hema
Vandecruys P
-
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer noopener">http://doi.org/10.11124/jbisrir-2015-2413</a>
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Title
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Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Identifier
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<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer noopener">10.11124/jbisrir-2015-2413</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).
Description
An account of the resource
The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, “healthcare users” will be taken to include children who have life-limiting conditions and their families. The question to be addressed is: Review question/objective What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? Background The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide.1-15 This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive.5-8,15 Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children.11,16-18 Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care. Background In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions.9,15,19-23 These are conditions for which no cure is available and for which the probable outcome is premature death.24 Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood24 Although pediatric palliative care is underpinned by the same philosophy as adult palliative care,9,24 children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care.15 For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell.9,15,25 The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care.15,26-29 Such factors warrant considering pediatric palliative care as distinct from palliative care more generally
2018
Gomes T
July 2018 List
Juurlink DN
Khuu W
Mamdani MM
Pain
Pasricha S V
Paterson JM
Tadrous M
-
Dublin Core
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Title
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July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1017/S1478951514000054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951514000054</a>
Dublin Core
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Title
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Opening end-of-life discussions: how to introduce Voicing My CHOiCESTM, an advance care planning guide for adolescents and young adults
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Zadeh S; Pao M; Wiener L
Identifier
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<a href="http://doi.org/10.1017/S1478951514000054" target="_blank" rel="noreferrer noopener">10.1017/S1478951514000054</a>
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Description
An account of the resource
OBJECTIVE: Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions. METHOD: We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCESTM. RESULTS: Voicing My CHOiCESTM: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers. SIGNIFICANCE OF RESULTS: Successful use of Voicing My CHOiCESTM will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCESTM and on how to work through each section alongside the patient are provided
2015
Adolescent
Advance Care Planning/ut Utilization
Communication
Health Planning Guidelines
Hiv
Humans
July 2018 List
Palliative & Supportive Care
Pao M
Physician-patient Relations
Terminal Care/mt Methods
Wiener L
Young Adult
Zadeh S
-
Dublin Core
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Title
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July 2018 List
Text
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Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1017/S1478951511001027" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951511001027</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Cultural and religious considerations in pediatric palliative care
Publisher
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Palliative & Supportive Care
Date
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2013
Creator
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Wiener L; McConnell DG; Latella L; Ludi E
Identifier
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<a href="http://doi.org/10.1017/S1478951511001027" target="_blank" rel="noreferrer noopener">10.1017/S1478951511001027</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).
Description
An account of the resource
OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. SIGNIFICANCE OF RESULTS: The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
2013
Attitude to Death/eh Ethnology
Child
Cultural Diversity
Decision Making
Humans
Infant
July 2018 List
Latella L
Ludi E
McConnell DG
Newborn
Palliative & Supportive Care
Palliative Care
Pediatrics
Preschool
Religion and Medicine
Spirituality
Terminal Care
Wiener L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.24490" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.24490</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
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Wiener L; Zadeh S; Wexler LH; Pao M
Identifier
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<a href="http://doi.org/10.1002/pbc.24490" target="_blank" rel="noreferrer noopener">10.1002/pbc.24490</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for themselves [1], providers feeling unprepared or without adequate skills to guide EoL discussions, or parental concern that discussing plans, including life support options or presenting an EoL planning document may send the message that the medical team wishes to withdraw care or that death is imminent. Data suggest that allowing AYA involvement in EoL planning can help parents and healthcare providers make informed decisions, alleviate distress, avoid decisional regret, and perhaps improve the patient’s quality of life (QoL) by respecting their values, beliefs ,and preferences [2–4]. This commentary addresses recent progress in the field and focuses on how healthcare professionals can approach advance care planning (ACP) with AYA, involve their family members, and engage the entire health care team.
2013
Adolescent
Advance Care Planning
Family
Humans
July 2018 List
Pao M
Pediatric Blood & Cancer
Physician-patient Relations
Quality Of Life
Terminal Care
Terminal Care/px Psychology
Wexler LH
Wiener L
Young Adult
Zadeh S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0698" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0698</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Personalize the Patient Initiative: A Demedicalized Medical Chart Cover Page for Children Receiving Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Woolfe A; Walker N; Wichman C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0698" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0698</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Andreolio C
Carvalho PRA
July 2018 List
Piva JP
Rev Bras Ter Intensiva.
Rocha TSD
Serena K