1
40
15
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Title
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September 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</a>
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My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; controlled study; female; human; male; preschool child; emotion; clinical article; interview; Only Child; human experiment; human tissue; malignant neoplasm; thematic analysis; conference abstract; health status; literature; language; ambivalence; discourse analysis
Creator
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Bristowe K; Braybrook D; Scott HM; Coombes L; Harardottir D; Roach A; Ellis-Smith C; Fraser L; Downing J; Murtagh FE; Harding R
Description
An account of the resource
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language children use to describe their condition and its impact on their life, to inform strategies for engaging children about their priorities. <br/>Method(s): Semi-structured, qualitative interviews with purposively sampled children with life-limiting and life-threatening conditions. Data were analysed using thematic analysis, discourse analysis and the discourse dynamics approach to identify figurative language. <br/>Result(s): Participants: 26 children (6 cancer; 20 non-cancer) aged 5-17. <br/>Finding(s): Children as young as five provided rich descriptions of their condition, including: diverse negative emotions often contextualised by what they 'can't do' ('can't do anything', 'can't go anywhere'), and comparisons to healthy ('normal', 'usual') peers, with their condition singling them out ('the one that has something,' 'the sick one'). Others expressed ambivalence ('doesn't bother me', 'not really fussed') or acceptance using idiomatic phrases ('I can live with that', 'you're still you, you haven't gone anywhere'). Metaphor were common, including familiar journey and battle metaphors, and novel usages related to zombies, gaming, superheroes, toys and animals. Children used medical jargon related to their condition, combined with preferred words for their body ('tummy', 'belly', 'butt') and had capacity to create comparatives and superlatives to describe symptom severity (no hurt, hurt a bit, a whole lot, like crazy, really hurt, worse, better). <br/>Conclusion(s): Children make deliberate language choices when describing their condition, and can express holistic needs, and changes in health status. Clinicians should observe and mirror children's language to enhance discussions about priorities.
Identifier
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
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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).
2023
ambivalence
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Controlled Study
Coombes L
discourse analysis
Downing J
Ellis-Smith C
Emotion
Female
Fraser L
Harardottir D
Harding R
Health Status
Human
Human Experiment
Human Tissue
Interview
Language
literature
Male
Malignant Neoplasm
Murtagh FE
Only Child
Palliative Medicine
Preschool Child
Roach A
Scott HM
September List 2027
Thematic Analysis
-
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231180926</a>
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Title
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"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; United States; Bereavement; adult; article; human; palliative therapy; grief; young adult; sibling; quality of life; epistemology; qualitative research; language; phenomenology; caregiver; perception; genetic transcription; semi structured interview; ritual; altruism
Creator
An entity primarily responsible for making the resource
Jones MT; Albanese E; Boles JC
Description
An account of the resource
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6months-18years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. <br/>RESULT(S): Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. <br/>CONCLUSION(S): Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Albanese E
Altruism
Article
August List 2035
Bereavement
Boles JC
Caregiver
Child
epistemology
genetic transcription
Grief
Human
Jones MT
Language
Palliative Medicine
Palliative Therapy
Perception
Phenomenology
Qualitative Research
Quality Of Life
ritual
Semi Structured Interview
Sibling
United States
Young Adult
-
Dublin Core
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Title
A name given to the resource
November 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.09.003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2022.09.003</a>
Dublin Core
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Title
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A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity
Publisher
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The Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Antenatal Consultation; Language; Periviability; Shared Decision Making
Creator
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Sullivan A; Arzuaga B; Luff D; Young V; Schnur M; Williams D; Cummings C
Description
An account of the resource
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated gestation participated in post antenatal-counseling semi-structured interviews to explore preferred language and decision-making approaches of their antenatal counseling session. Interviews were audio-recorded and transcribed, and thematic analysis of the data was performed. RESULTS: Thirty-nine interviews were conducted representing 28 total prenatal consults. Analysis identified two overarching themes impacting the whole counseling experience: the need for reassurance and compassionate communication, while parents traveled along a dynamic decision-making journey they described as fluid and ever-changing. Related themes included: 1) Finding Balance: parents reported the importance of balancing positivity and negativity as well as tailoring the amount of information, 2) The Unspoken: parents described assumptions and inferences surrounding language, resuscitation options and values that can cloud the counseling process, 3) Making the Intangible Tangible: parents reported the importance of varied communication strategies, for example visuals to better anticipate and prepare, and 4) Team Synergism: Parents expressed desire for communication and consistency among and between teams which increased trust. CONCLUSIONS: parents facing extremely premature delivery generally did not report remembering specific terminology used during prenatal consultation, but rather how the language and counseling approach made them feel and affected the decision-making process. These findings have implications for further research and educational intervention design to improve clinicians' counseling practices to better reflect parental preferences and ultimately improve counseling outcomes.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2022.09.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.09.003</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).
Shared Decision Making
2022
antenatal consultation
Arzuaga B
Cummings C
Language
Luff D
November 2022 List
periviability
Schnur M
Sullivan A
The Journal Of Pediatrics
Williams D
Young V
-
Dublin Core
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Title
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August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1177/0825859720933112" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0825859720933112</a>
Dublin Core
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Title
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Translating Pediatric Hospital Interpreters' Feedback From Difficult Conversations into Improved Communication
Publisher
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Journal of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
communication; language; medical interpretation; pediatric palliative care
Creator
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Weaver M S; Roeth A; Navaneethan H; Shostrom V K; Contreras-Nourse M
Description
An account of the resource
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical interpreters to palliative care teams as to how to effectively incorporate medical interpreters into end-of-life conversations. SUBJECTS AND METHOD: Participants included pediatric hospital-based medical interpreters who had interpreted for at least 1 end-of-life conversation in the pediatric hospital setting. A total of 11 surveys were completed by medical interpreters. The study consisted of a written 12-item survey with a follow-up focus group to further explore survey themes. RESULTS: The translation of cultural contexts, awareness of the mixed messages the family received from health care teams, and the emotional intensity of the interactions were depicted as the most challenging aspects of the medical interpreter's role. Despite these challenges, 9 interpreters reported they would willingly be assigned for interpreting "bad news" conversations if given the opportunity (82%). Medical interpreters recognized their relationship with the family and their helping role for the family as meaningful aspects of interpreting even in difficult conversations. Medical interpreters shared 7 thematic suggestions for improved communication in language-discordant visits: content review, message clarity, advocacy role, cultural understanding, communication dynamics, professionalism, and emotional support. CONCLUSIONS: As experts in cultural dynamics and message transmission, the insights of medical interpreters can improve communication with families.
Identifier
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<a href="http://doi.org/10.1177/0825859720933112" target="_blank" rel="noreferrer noopener">10.1177/0825859720933112</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
August 2020 List
Communication
Contreras-Nourse M
Journal Of Palliative Care
Language
medical interpretation
Navaneethan H
Pediatric Palliative Care
Roeth A
Shostrom V K
Weaver M S
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1002/ajmg.a.36573" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.36573</a>
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Title
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Autism traits in children and adolescents with Cornelia de Lange syndrome
Publisher
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American Journal of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Communication; adolescent; Autism; emotion; age; verbal communication; communication disorder; priority journal; interpersonal communication; skill; intellectual impairment; human; article; child; female; male; adult; diagnosis; clinical article; daily life activity; disease severity; autism; Cornelia de Lange syndrome; phenotype; compulsion; language; stereotypy; adaptive behavior; socialization; Aberrant Behavior Checklist; behavior disorder; Behavioral phenotype; checklist; Childhood Autism Rating Scale; de Lange syndrome; hyperactivity; lethargy; limb; maladjustment; psychological rating scale; rating scale; Repetitive behaviors; rigidity; social cognition; Social cognition; Vineland Adaptive Behaviors Scales; behavioral problems; De Lange syndrome; trajectory; characteristics; irritability
Creator
An entity primarily responsible for making the resource
Srivastava S; Landy-Schmitt C; Clark B; Kline A D; Specht M; Grados M A
Description
An account of the resource
Cornelia de Lange syndrome (CdLS) is a cohesinopathy causing delayed growth and limb deficits. Individuals with CdLS have mild to profound intellectual disability and autistic features. This study characterizes the behavioral phenotype of children with CdLS, focusing on autistic features, maladaptive behaviors, and impact of age. Children with CdLS (5-18 years) were administered normed instruments to characterize autism features (Childhood Autism Rating Scale, CARS), maladaptive behaviors (Aberrant Behavior Checklist), and adaptive skills (Vineland Adaptive Behaviors Scales). CdLS features and severity were rated with Diagnostic Criteria for CdLS. Forty-one children with CdLS (23 females, 18 males) were classified as having "no autism" (n=7; 17.1%), "mild autism" (n=17; 41.4%), and "severe autism" (n=17; 41.4%), using CARS scores. Characteristic items were abnormal emotional response, stereotypies, odd object use, rigidity, lack of verbal communication, and low intellectual functioning. Verbal communication deficits and repetitive behaviors were higher compared to sensory, social cognition, and behavior abnormalities (P<0.0001). Maladaptive behaviors associated with autism traits were stereotypies (P=0.003), hyperactivity (P=0.01), and lethargy (P=0.03). Activities of daily living were significantly affected; socialization adaptive skills were a relative strength. However, with advancing age, both socialization (P<0.0001) and communication (P=0.001) domains declined significantly. CdLS is characterized by autistic features, notably excessive repetitive behaviors and expressive language deficits. While other adaptive skills are impacted, socialization adaptive skills are less affected. Advancing age can worsen communication and socialization deficits relative to neurotypical peers. © 2014 Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.36573" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.36573</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).
2014
Aberrant Behavior Checklist
adaptive behavior
Adolescent
Adult
Age
American Journal of Medical Genetics Part A
Article
Autism
behavior disorder
Behavioral phenotype
behavioral problems
characteristics
Checklist
Child
Childhood Autism Rating Scale
Clark B
Clinical Article
Communication
communication disorder
compulsion
Cornelia de Lange syndrome
daily life activity
De Lange syndrome
Diagnosis
Disease Severity
Emotion
Female
Grados M A
Human
hyperactivity
Intellectual Impairment
Interpersonal Communication
Irritability
Kline A D
Landy-Schmitt C
Language
lethargy
limb
maladjustment
Male
Phenotype
Priority Journal
psychological rating scale
Rating Scale
Repetitive behaviors
rigidity
Skill
social cognition
Socialization
Specht M
Srivastava S
stereotypy
Trajectory
Verbal Communication
Vineland Adaptive Behaviors Scales
-
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 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2018.24.7.351" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.12968/ijpn.2018.24.7.351</a>
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Title
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Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience
Publisher
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International journal of palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
article; child; female; human; major clinical study; male; palliative therapy; Children; E-learning; Education; human experiment; language; learning; mandarin; nonhuman; nurse; Paediatrics; Palliative; pediatrics; skill; writing
Creator
An entity primarily responsible for making the resource
Daniels A; Downing J
Description
An account of the resource
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC. A review of ICPCN's e-learning programmes was undertaken in April/May 2018. At the time of writing, there are seven courses available, with more scheduled to be released in the near future. All courses are available in English, with some available in other languages, including Mandarin, Czech and Dutch. Between May 2016 and April 2018, 1501 individuals accessed the courses from 96 countries (39% nurses, 28% doctors). English was the prevalent language used (74%), followed by Spanish (8.5%). To date, over 3106 participants have accessed the e-learning programme from 124 countries. An evaluation in 2015/16 found that \textgreater80% of respondents said the courses were clear, understandable, rated them highly and found them useful. Some 75% of respondents reported improved knowledge, skills and change in attitude, while 61% reported a change in practice. The ICPCN e-learning platform is an innovative way of improving knowledge and understanding of CPC, thereby increasing the accessibility and availability of CPC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2018.24.7.351" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.351</a>
2018
Article
Child
Children
Daniels A
Downing J
E-learning
Education
Female
Human
Human Experiment
International Journal of Palliative Nursing
July 2019 List
Language
Learning
Major Clinical Study
Male
mandarin
Nonhuman
Nurse
Paediatrics
Palliative
Palliative Therapy
Pediatrics
Skill
writing
-
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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May 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2019 List
URL Address
<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951518000172</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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Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; child; human; pain; female; male; palliative therapy; article; adult; qualitative research; caregiver; life; systematic review; pediatric palliative care; Cinahl; Medline; PsycINFO; pediatric patient; neoplasm; children's voice; language; Meta-summary; publication; voice
Creator
An entity primarily responsible for making the resource
Ghirotto L; Busani E; Salvati M; Di Marco V; Caldarelli V; Artioli G
Identifier
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<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">10.1017/S1478951518000172</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
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. METHOD(S): A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.
2019
Adolescent
Adult
Article
Artioli G
Busani E
Caldarelli V
Caregiver
Child
children's voice
Cinahl
Di Marco V
Female
Ghirotto L
Human
Language
Life
Male
May 2019 List
Medline
Meta-summary
Neoplasm
Pain
Palliative & Supportive Care
Palliative Therapy
Pediatric Palliative Care
pediatric patient
Psycinfo
publication
Qualitative Research
Salvati M
Systematic Review
Voice
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 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
December 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1002/pbc.27455</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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A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
United States; death; education; palliative therapy; retrospective study; cancer patient; language; complication; malignant neoplasm; patient referral; conference abstract; medical record review; human; child; female; male; controlled study; adult; pediatric patient; child psychology; biological product; social care; speech
Creator
An entity primarily responsible for making the resource
Schneider N; Steinberg D; Karfunkle B
Description
An account of the resource
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to identify how cultural and language factors may influence whether psychology is involved in a patient and family's care. Preliminary literature in adult-focused research suggests that a vast majority of those referred to psychology are English speaking. Design/Methods: The medical records of Pediatric patients who died from cancer or its complications over a consecutive 18 month-period were examined via retrospective chart review. Patients' demographic information was collected, along with information about whether their medical team requested a psychology consultation. Details about consultations and subsequent intervention were collected. Results: Eighty-nine charts were reviewed. Patients ranged from age 3 months to 25 years. Data indicated that non-English speaking families were referred to psychology at nearly half the rate of English-speaking families (i.e., 16% of patients as compared to 31% of patients). There did not appear to be any statistically significant differences between the referred and non-referred groups aside from the family's primary language. There was a wide range of when patients were referred (4-3168 days before death). Conclusions: Results indicate that, though the comprehensive biological-psychological-social care of children is widely recognized as important, there is a clear disparity in the services offered to families that speak languages other than English. Further research should be conducted to understand referral barriers and missed opportunities to utilize Pediatric psychology, particularly as hospitals in the United States continue to diversify. Finally, offering providers education about how to identify common psychological concerns, particularly in those hailing from different cultural backgrounds, may be particularly valuable in closing the identified referral gap; our poster will make culturally-informed recommendations for such a training.
Identifier
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<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adult
biological product
Cancer Patient
Child
Child Psychology
Complication
conference abstract
Controlled Study
Death
December 2018 List
Education
Female
Human
Karfunkle B
Language
Male
Malignant Neoplasm
Medical Record Review
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric patient
Retrospective Study
Schneider N
Social Care
Speech
Steinberg D
United States
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 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
December 2018 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000001213" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1097/PCC.0000000000001213</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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Speaking a different language: Communication patterns of palliative care and pediatric intensive care unit providers during family conferences
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
quality of life; palliative therapy; retrospective study; thematic analysis; language; human experiment; health care personnel; genetic transcription; pediatric intensive care unit; speech; conference abstract; human; controlled study; medical information; uncertainty; audio recording; hopelessness
Creator
An entity primarily responsible for making the resource
Ciriello A G; October TW
Description
An account of the resource
Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care providers to help navigate the conversation. We do not know how communication differs between conferences with and without the palliative care team. The objective of this study was to compare the language used by the palliative care (PC) team and the critical care team during decisionmaking family conferences. Methods: We conducted a qualitative retrospective review of 18 family conferences that were audio-recorded and transcribed. Nine conferences included both the PC team and PICU physicians, while 9 included only PICU physicians. Statements made by the PC team were collected and compared to statements made by the PICU team. Thematic analysis was performed to categorize the statements. Results: In 9 audio-recordings of PICU only conferences, we identified 526 PICU statements generating 15 thematic categories. The most common theme was medical information giving with 215/526 (41%) statements followed by discussing medical options (65/526, 12%). Other PICU themes included, "healthcare provider challenges (14/526, 3%)," hopelessness (30/526, 6%), and insensitivity (18/526, 3%). Among the 9 audio-recordings with the PC team present, there were 282 PC statements, which generated 11 thematic categories. The most common theme was support, compromising 78/282 (28%) statements. Other common PC themes included quality of life (35/282, 12%) and medical information giving (47/282, 17%). Overlapping themes used by both PICU and PC teams were encouraging consulting services, giving medical information, presenting medical options, normalizing emotions, praising the family, providing support, and discussing uncertainty. Both PICU and PC teams promoted family engagement by soliciting parent questions; however the PC team was more likely to use open-ended questions. Conclusions: Palliative care team language appears different from that of PICU physicians in that PICU physicians spend more time giving medical information while the palliative care team more commonly offers supportive statements and encourages parental involvement. Each provider serves a different role during family conferences. The addition of the palliative care team to PICU family conferences may offer a balanced approach to communication where the medical team provides important medical information while simultaneously offering support for the family.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000001213" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001213</a>
2017
audio recording
Ciriello A G
conference abstract
Controlled Study
December 2018 List
genetic transcription
Health Care Personnel
hopelessness
Human
Human Experiment
Language
Medical Information
October TW
Palliative Therapy
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Quality Of Life
Retrospective Study
Speech
Thematic Analysis
Uncertainty
-
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
April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117700101" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117700101</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
Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child; Communication; Critical Care; Female; Human; Inpatients; Intensive Care Units; Language; Male; Palliative Care; Pediatric; Physicians; Support; Preschool; Retrospective Design; Descriptive Statistics; In Infancy and Childhood; Audiorecording; child; human; female; male; Content Analysis; Field Notes; Fisher's Exact Test; Funding Source; Kappa Statistic; Mann-Whitney U Test; Patient-Family Conferences; Record Review; Psychosocial
Creator
An entity primarily responsible for making the resource
Ciriello AG; Dizon Zoelle B; October Tessie W
Description
An account of the resource
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU physicians during family conferences. Design: A retrospective cohort review of ICU family conferences with and without the PC team. Setting: Forty-four bed pediatric ICU in a tertiary medical center. Participants: Nine ICU physicians and 4 PC providers who participated in 18 audio-recorded family conferences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117700101" target="_blank" rel="noreferrer noopener">10.1177/1049909117700101</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).
2017
American Journal of Hospice & Palliative Medicine
April 2018 List
Audiorecording
Child
Ciriello AG
Communication
Content Analysis
Critical Care
Descriptive Statistics
Dizon Zoelle B
Female
field notes
Fisher's Exact Test
Funding Source
Human
In Infancy and Childhood
Inpatients
Intensive Care Units
Kappa Statistic
Language
Male
Mann-Whitney U Test
October Tessie W
Palliative Care
Patient-Family Conferences
Pediatric
Physicians
Preschool
psychosocial
Record Review
Retrospective Design
Support
-
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
March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1111/dmcn.13623" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.13623</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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Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
Publisher
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Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Music Therapy; neuronal ceroid lipofuscinosis; speech; Child; cohort analysis; endogenous compound; Female; Human; Language; Male; Mood; Perception; singing; Teaching
Creator
An entity primarily responsible for making the resource
Ockelford A; Atkinson R
Description
An account of the resource
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness, epilepsy, hallucinations, memory loss, the decline of speech, language and swallowing abilities, and the catastrophic deterioration of fine and gross motor skills (Bills et al., 1998). In a recent European research initiative led by Bengt Elmerskog (National Resource Centre for VI, Norway), exploring educational and therapeutic strategies for children with Batten disease, parents reported that music plays an increasingly significant role in their children's lives as the disease progresses. Evidence investigating the effects of music on neurological conditions has highlighted important links between music perception and speech, language, cognition and movement (Zatorre, 2013, Magee, 2017). This presentation will illustrate initial findings from two studies currently in train at the Applied Music Research Centre at the University of Roehampton. The first is following a cohort of 12 children and young people with Batten disease (CLN2, CLN3, CLN5, CLN 6 and CLN8) over a period of three years, to ascertain the extent to which weekly musical interventions and music therapy may have the capacity to regulate speech, control movement, enhance mood and promote social interac-tion. The second, doctoral study, which focuses on CLN3, the juvenile form of Batten disease, explores how singing may facilitate the production of expressive language when speech is in decline through (a) encouraging patients to learn the benefits of melodic intonation and rhythmic speaking techniques, and (b) teaching patients a repertoire of 'micro-songs', that embody key functional language. It is proposed that techniques may help scaffold language and everyday speech and, subsequently, maintain functional speech and communication for longer.
2017
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.13623" target="_blank" rel="noreferrer">10.1111/dmcn.13623</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).
2017
Atkinson R
Child
Cohort Analysis
Developmental Medicine and Child Neurology
Endogenous Compound
Female
Human
Language
Male
March 2018 List
Mood
Music Therapy
neuronal ceroid lipofuscinosis
Ockelford A
Perception
singing
Speech
Teaching
-
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
Backlog
URL Address
<a href="http://doi.org/10.1001/jama.2009.396" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.2009.396</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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Communicating with seriously ill patients: better words to say
Publisher
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Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; Terminal Care; Physician-Patient Relations; Prognosis; Language; advance care planning
Creator
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Pantilat SZ
Identifier
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<a href="http://doi.org/10.1001/jama.2009.396" target="_blank" rel="noreferrer">10.1001/jama.2009.396</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2009
2009
Advance Care Planning
Backlog
Humans
JAMA
Journal Article
Language
Pantilat SZ
Physician-patient Relations
Prognosis
Terminal Care
-
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
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073809340922" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073809340922</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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ABRV (or Abbrevobabble Revisited)
Publisher
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Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Interdisciplinary Communication; Language; Research/standards; Biomedical Research/standards; Peer Review; Abbreviations as Topic; Periodicals as Topic/standards
Creator
An entity primarily responsible for making the resource
Brumback RA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073809340922" target="_blank" rel="noreferrer">10.1177/0883073809340922</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).
Type
The nature or genre of the resource
Journal Article
2009
Abbreviations as Topic
Backlog
Biomedical Research/standards
Brumback RA
Interdisciplinary Communication
Journal Article
Journal of Child Neurology
Language
Peer Review
Periodicals as Topic/standards
Research/standards
-
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
Backlog
URL Address
<a href="http://doi.org/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">http://doi.org/10.1080/13607863.2010.543658</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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The Spanish version of the dementia quality of life questionnaire: a validation study
Publisher
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Aging & Mental Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Female; Humans; Male; Aged; Middle Aged; Severity of Illness Index; European Continental Ancestry Group; Sensitivity and Specificity; Reproducibility of Results; Spain; Diagnostic and Statistical Manual of Mental Disorders; Language; 80 and over; Quality of Life/psychology; Questionnaires/standards; Dementia/diagnosis/physiopathology/psychology; Psychometrics/instrumentation; Translations
Creator
An entity primarily responsible for making the resource
Lucas-Carrasco R; Gomez-Benito J; Rejas J; Brod M
Description
An account of the resource
BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled version, and then a back translation were completed and subjected to expert review. A total of 112 patients with dementia, diagnosed according to DSM-IV criteria, from six centres providing care for persons with dementia in Spain participated in the study. The following patient-reported information was obtained by interview: demographics, subjective perception of health, depressive symptoms (Geriatric Depression Scale-15; GDS-15), functional ability (Barthel Index), and both generic (World Health Organization Quality of Life; WHOQOL-BREF) and dementia-specific quality of life (DQoL). RESULTS: The Spanish version of the DQoL showed acceptable psychometric properties. Internal consistency (Cronbach's alpha) was acceptable for most of the DQoL scales. As expected, associations were found between DQoL scales and the WHOQOL-BREF psychological domain and the GDS-15, indicating good validity. Neither functional status nor severity of dementia was associated with QoL; but depressive symptoms and self-reported feeling ill had a negative association on QoL. CONCLUSIONS: The results showed that the Spanish version of the DQoL has comparable psychometric properties to the US version. The DQoL appears to be a reliable and valid instrument intended to be administered to patients with mild/moderate dementia who are living at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">10.1080/13607863.2010.543658</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).
Type
The nature or genre of the resource
Journal Article
2011
80 And Over
Aged
Aging & Mental Health
Backlog
Brod M
Dementia/diagnosis/physiopathology/psychology
Diagnostic and Statistical Manual of Mental Disorders
European Continental Ancestry Group
Female
Gomez-Benito J
Humans
Journal Article
Language
Lucas-Carrasco R
Male
Middle Aged
Psychometrics/instrumentation
Quality Of Life/psychology
Questionnaires/standards
Rejas J
Reproducibility of Results
Sensitivity and Specificity
Severity Of Illness Index
Spain
Translations
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2017 List
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
End-of-life Decisions For Extremely Preterm Infants - A Matter Of Language, Gender And Education?
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Education; Ethical Decision Making; Gender; Language; Prematurity; Prematurity/dm [disease Management]; Terminal Care; Artificial Ventilation; Editorial; Education; Female; France; Gender; Germany; Human; Human Experiment; Infant; Italy; Language; Male; Physician Attitude; Priority Journal; Quality Of Life; Shared Decision-making; Switzerland
Creator
An entity primarily responsible for making the resource
Buhrer C
Identifier
An unambiguous reference to the resource within a given context
10.1111/apa.13717
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).
2017
Acta Paediatrica
April 2017 List
Artificial Ventilation
Bührer C
Editorial
Education
Ethical Decision Making
Female
France
Gender
Germany
Human
Human Experiment
Infant
Italy
Language
Male
Physician Attitude
Prematurity
Prematurity/dm [disease Management]
Priority Journal
Quality Of Life
Shared Decision-making
Switzerland
Terminal Care