1
40
32
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Dublin Core
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Title
A name given to the resource
March 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935231225714</a>
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Title
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Evaluation of paediatric palliative care ambulance plans: A retrospective study
Publisher
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Journal of Child Health Care
Date
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2024
Subject
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ambulance; palliative therapy; article; Australia; child; data completeness; drug therapy; drug use; human; male; New South Wales; Palliative Care; paramedical personnel; Retrospective Studies; retrospective study; scope of practice; special situation for pharmacovigilance; terminal care
Creator
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Wan J; Vaughan A; Shepherd E; Coombs S; Trethewie S; Jaaniste T
Description
An account of the resource
Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.
Identifier
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<a href="http://doi.org/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener">10.1177/13674935231225714</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).
2024
ambulance
Article
Australia
Child
Coombs S
data completeness
Drug Therapy
Drug Use
Human
Jaaniste T
Journal Of Child Health Care
Male
March List 2024
New South Wales
Palliative Care
Palliative Therapy
paramedical personnel
Retrospective Studies
Retrospective Study
Scope Of Practice
Shepherd E
special situation for pharmacovigilance
Terminal Care
Trethewie S
Vaughan A
Wan J
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935030074001</a>
Dublin Core
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Title
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Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Parent-Child Relations; Communication; Adult; Qualitative Research; Gender Identity; Adaptation, Psychological; Focus Groups; Nursing Methodology Research; *Attitude to Health; *Disabled Children/px [Psychology]; Early Intervention, Educational; *Fathers/px [Psychology]; Stereotyping; Marriage/px [Psychology]; *Mothers/px [Psychology]; *Parenting/px [Psychology]; *Down Syndrome/px [Psychology]; Disabled Children/rh [Rehabilitation]; Down Syndrome/rh [Rehabilitation]
Creator
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Pelchat, Diane; Lefebvre, Helene; Perreault, Michel
Description
An account of the resource
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.
Identifier
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<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener">10.1177/13674935030074001</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).
*Attitude to Health
*Disabled Children/px [Psychology]
*Down Syndrome/px [Psychology]
*Fathers/px [Psychology]
*Mothers/px [Psychology]
*Parenting/px [Psychology]
2003
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Child
Child, Preschool
Communication
Disabled Children/rh [Rehabilitation]
Down Syndrome/rh [Rehabilitation]
Early Intervention, Educational
Female
Focus Groups
Gender Identity
Humans
Journal Of Child Health Care
Lefebvre, Helene
Male
Marriage/px [Psychology]
Middle Aged
Nursing Methodology Research
Parent-child Relations
Pelchat, Diane
Perreault, Michel
Qualitative Research
Stereotyping
-
Dublin Core
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Title
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November 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
November List 2023
URL Address
<a href="http://doi.org/10.1177/13674935231202870" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935231202870</a>
Dublin Core
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Title
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Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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paediatrics; adolescent; Chronic illness; transition to adult care; health personnel
Creator
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Splane J; Doucet S; Luke A
Description
An account of the resource
Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are disorganized, resulting in health status deterioration and complications due to unmet needs. The aim of this qualitative descriptive study is to develop a broader understanding of the current transition practices and experiences, as well as recommendations of care providers who support youth with CCN in the transition from paediatric to adult healthcare. Fifteen care providers from two Eastern Canadian provinces were interviewed using a semi-structured interview guide. The data collected were analyzed using inductive thematic analysis following the six phases outlined by Braun and Clarke (2006). The findings from this research demonstrate (1) a shortage of care providers, (2) inconsistent timing for transition initiation, and (3) lack of available community resources and services. Participant recommendations include (1) a designated transition coordinator; (2) transition policy implementation; (3) improved collaboration between and across care teams; and (4) the integration of virtual care to facilitate the transition process. The results of this study can potentially improve transition practices and policies and guide future research in this area. © The Author(s) 2023.
Identifier
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<a href="http://doi.org/10.1177/13674935231202870" target="_blank" rel="noreferrer noopener">10.1177/13674935231202870</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
Adolescent
Chronic Illness
Doucet S
Health Personnel
Journal Of Child Health Care
Luke A
November List 2025
Paediatrics
Splane J
Transition To Adult Care
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Dublin Core
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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/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211059041</a>
Dublin Core
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Title
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Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Infant; Decision Making; Communication; Qualitative Research; Uncertainty; Emotions; Parents; Parents/px [Psychology]; Decision Making
Creator
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Koch A; Albrecht T; Kozhumam AS; Son H; Brandon D; Docherty SL
Description
An account of the resource
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
Identifier
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<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener">10.1177/13674935211059041</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
Albrecht T
August List 2036
Brandon D
Communication
Decision Making
Docherty SL
Emotions
Humans
Infant
Journal Of Child Health Care
Koch A
Kozhumam AS
Parents
Parents/px [psychology]
Qualitative Research
Son H
Uncertainty
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 2 - Parent Perspectives 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
2032 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211026113</a>
Dublin Core
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Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Sibling; critical illness; scoping review Adaptation Psychological; Child; Family; Family Health; Humans; Self Report; Siblings psychology
Creator
An entity primarily responsible for making the resource
Tay J; Widger K; Stremler R
Description
An account of the resource
Sibling relationships are one of the most long-lasting and influential relationships in a human?s life. Living with a child who has a life-threatening condition changes healthy siblings? experience. This scoping review summarized and mapped research examining healthy siblings? experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child?s illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings? experiences and focus on a wider variety of life-threatening conditions.
Identifier
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<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">10.1177/13674935211026113</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).
2022
2032 SE2 - Parent Perspectives
Child
Critical Illness
Family
Family Health
Humans
Journal Of Child Health Care
scoping review Adaptation Psychological
Self Report
Sibling
Siblings psychology
Stremler R
Tay J
Widger K
-
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
May 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
May List 2023
URL Address
<a href="http://doi.org/10.1177/13674935231158456" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935231158456</a>
Dublin Core
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Title
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Children's complex health: Maternal experiences of care and decision making
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
community health nursing; decision making; long term care; mother; qualitative research; advance care planning; article; child; Child; coronavirus disease 2019; Decision Making; female; human; Only Child; pandemic; thematic analysis; voice; vulnerability
Creator
An entity primarily responsible for making the resource
Willis E; Godbold R
Description
An account of the resource
An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to determine what matters most; explore day-to-day decision making and Advance Care Planning; and to inform local service development. Seven mothers from one community nursing service were interviewed using a semi-structured qualitative approach during the Coronavirus disease 2019 pandemic. Seven data-driven themes were identified following six phase thematic analysis: cherishing normality; navigating the system; being proactive; meaningful connections; beginner to expert - and back; they're not any child - they're my child; and Coronavirus disease 2019 pandemic. Practice implications include early discussion of what matters most and benefits of written plans to ensure fair access to treatment for children with complex health. Mothers highlighted that sharing their story enhanced their sense of coping and purpose. Increased support at times of vulnerability and permission to explore decisions were highly valued.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/13674935231158456" target="_blank" rel="noreferrer noopener">10.1177/13674935231158456</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).
2023
Advance Care Planning
Article
Child
Community Health Nursing
coronavirus disease 2019
Decision Making
Female
Godbold R
Human
Journal Of Child Health Care
Long Term Care
May List 2023
Mother
Only Child
Pandemic
Qualitative Research
Thematic Analysis
Voice
VULNERABILITY
Willis E
-
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
May 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
May List 2023
URL Address
<a href="http://doi.org/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935221147716</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 team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
expectation; palliative nursing; pediatrics; phenomenology; respite care; anxiety; article; care behavior; child; Child; genetic transcription; human; Only Child; Palliative Care; responsibility; semi structured interview
Creator
An entity primarily responsible for making the resource
Constantinou G; Cook EJ; Tolliday E; Randhawa G
Description
An account of the resource
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising semi-structured interviews with professionals from various services was used. Interviews that happened between July and November 2018 were audio-recorded, transcribed verbatim and thematically analysed based on descriptive phenomenology.In total, 29 interviews were conducted. Findings showed how essential collaborative working was for becoming a team around the child. Barriers to this include complex working relationships, overprotectiveness of families, roles and responsibilities and use of independent care records. The pressures of waiting times and the impact of staffing shortages affected the experiences of providing care. The reality of meeting families' expectations was shaped by family networking, online research and previous services resistance, which was influential in more challenging interactions. Expectations of care were also impacted by misunderstandings and anxieties surrounding access to services. Overall, professionals were concerned about families being used as a bottomless caring resource and stressed the need for short breaks to alleviate parents.Interventions that educate families and professionals on these services and how they can benefit the child and family would be well received.
Identifier
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<a href="http://doi.org/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener">10.1177/13674935221147716</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).
2023
anxiety
Article
care behavior
Child
Constantinou G
Cook EJ
Expectation
genetic transcription
Human
Journal Of Child Health Care
May List 2023
Only Child
Palliative Care
palliative nursing
Pediatrics
Phenomenology
Randhawa G
Respite Care
responsibility
Semi Structured Interview
Tolliday E
-
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 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
April List 2023
URL Address
<a href="http://doi.org/10.1177/13674935211041863" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211041863</a>
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Title
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Shades of Care: Understanding the Needs of Racially and Ethnically Diverse Paediatric Patients, their Families, and Health Care Providers in North America
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Communication; United States; Palliative Care; North America; Health Personnel
Creator
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Ladha R; Neiterman E
Description
An account of the resource
While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric care provided to racially and ethnically diverse families in North America. We seek to clarify the needs of care administrators and recipients, as well as to conceptualize what paediatric care must look like to enable equitable practices and optimal health outcomes. Utilizing Arksey and O'Malley's framework, we reviewed literature published between 2005 and 2020, most of which was written within an American context. The literature reviewed featured quantitative, qualitative and mixed methods studies. Paediatric care administrators and recipients collectively identified the following as domains requiring an increased focus: (1) knowledge (awareness or training), (2) alignment of views and values, (3) resources and (4) communication. Findings suggest overall that despite there being merit in the cultural competency efforts underway, more patient-centric approaches are vital. This review concludes by encouraging the sustained development of cultural safety initiatives in paediatric care to ultimately promote patient comfort and provider-patient collaboration.
Identifier
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<a href="http://doi.org/10.1177/13674935211041863" target="_blank" rel="noreferrer noopener">10.1177/13674935211041863</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).
2023
April List 2023
Child
Communication
Health Personnel
Humans
Journal Of Child Health Care
Ladha R
Neiterman E
North America
Palliative Care
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
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September 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
September 2022 List
URL Address
<a href="http://doi.org/10.1177/13674935221109683" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935221109683</a>
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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/.
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Reported Costs of Children with Medical Complexity-A Systematic Review
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Children; Systematic review; Chronic disease; Medical complexity; Healthcare; Medical assistance; Medical costs
Creator
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Sidra M; Sebastianski M; Ohinmaa A; Rahman S
Description
An account of the resource
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in administrative databases, (2) compare reported costs for the CMC population in different study settings, and (3) analyze author recommendations related to reported costs. We undertook a systematic search of the following databases: Medical Literature Analysis and Retrieval System Online, Excerpta Medica dataBase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library with a focus on CMCs as a heterogeneous group. The most common method used n = 11 (41%) to identify the CMC population in administrative data was the Complex Chronic Conditions methodology. The majority of included studies reported on health care service costs n = 24 (89%). Only n = 3 (11%) of the studies included costs from the family perspective. Author recommendations included standardizing how costs are reported and including the family perspective when making care delivery or policy decisions. Health system administrators and policymakers must consider the limitations of reported costs when assessing local costing studies or comparing costs across jurisdictions.
Identifier
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<a href="http://doi.org/10.1177/13674935221109683" target="_blank" rel="noreferrer noopener">10.1177/13674935221109683</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).
2022
Children
Chronic Disease
healthcare
Journal Of Child Health Care
Medical assistance
Medical Complexity
Medical costs
Ohinmaa A
Rahman S
Sebastianski M
September 2022 List
Sidra M
Systematic Review
-
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
May 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
May 2022 List
URL Address
<a href="http://doi.org/10.1177/13674935221076214" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935221076214</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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"Holding back my own emotions": Evaluation of an online education module in pediatric end-of-life care
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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communication barrier; distance education; End of life care; General hospitals; Online; Pediatrics
Creator
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Rawlings D; Winsall M; Yin H; Devery K
Description
An account of the resource
Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professionals working in acute hospitals, including one on end-of-life care in pediatric settings. This study aimed to evaluate this module and explore learners' views on challenges faced when caring for a dying child and their family in a hospital setting. Learners comprised nurses, doctors, and allied health professionals. A quantitative pre-/post-evaluation analysis was conducted using learner data (n = 552) on knowledge and skills gained from engagement with the module, along with a qualitative thematic content analysis on learner responses (n = 395) to a post-evaluation free-text response question, between May 2019 and May 2020. Learners' post-evaluation ranks of perceived knowledge, skill, attitude, and confidence were significantly higher than pre-evaluation ranks (p < 0.001). Effect sizes were small to medium, ranging from 0.31 to 0.38 (95% confidence intervals from 0.23 to 0.45). Emerging themes from the qualitative data were dealing with emotions, and communicating effectively. This evaluation suggests that the Pediatrics module could be a useful online learning resource for health professionals. A planned longitudinal study will further investigate practice change.
Identifier
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<a href="http://doi.org/10.1177/13674935221076214" target="_blank" rel="noreferrer noopener">10.1177/13674935221076214</a>
2022
Communication Barrier
Devery K
distance education
End Of Life Care
General hospitals
Journal Of Child Health Care
May 2022 List
Online
Pediatrics
Rawlings D
Winsall M
Yin H
-
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 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
May 2022 List
URL Address
<a href="http://doi.org/10.1177/13674935211044875" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211044875</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
Caregivers' perspectives on the social and physical environmental factors associated with the play of their children with palliative care needs: A Q methodology study
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Caregivers; Children; Environmental factors; Palliative care; Play; Social factors
Creator
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Jasem ZA; Randall DC; Darlington AS; Lambrick D
Description
An account of the resource
Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children's play. Understanding the importance and impact of environmental factors on children's play is essential to being able to support their participation in play. Data were collected from caregivers (mostly parents) of children living with life-threatening/limiting conditions, who were between 5 and 11 years old. Thirty-nine participants were recruited from two children hospitals and two hospices in Kuwait and in the United Kingdom. The participants' perspectives were explored using Q methodology. By-person factor analysis was used to explore the ranking of each statement. Content analysis was used to analyse the participants' verbal comments. The most important environmental factors were the need for others to share play and get assistance to facilitate play. However, this is not always possible as these conditions, the life-threatening/limiting conditions, may be socially isolating. Children also experience limitations in accessing play resources that match their abilities and meet their play needs. Being aware and responsive to children's play needs is essential for building appropriately supportive play environments for children living with life-threatening/life-limiting conditions. Copyright © The Author(s) 2022.
Identifier
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<a href="http://doi.org/10.1177/13674935211044875" target="_blank" rel="noreferrer noopener">10.1177/13674935211044875</a>
2022
Caregivers
Children
Darlington AS
Environmental factors
Jasem ZA
Journal Of Child Health Care
Lambrick D
May 2022 List
Palliative Care
play
Randall DC
Social factors
-
Dublin Core
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Title
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Special Edition #1 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
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493520915134</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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Experiencing Place Identity and Place Belongingness at a Children's Hospice: Parents' Perspectives
Publisher
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Journal of Child Health 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
Child; Children’s hospice; Focus Groups; Hospice Care; Hospices; Palliative Care; parent perspective; Parents; place belongingness; place identity
Creator
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Dunbar H; Carter B
Description
An account of the resource
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</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
2022 Special Edition 1 - Parent Perspectives
Carter B
Child
Children’s hospice
Dunbar H
Focus Groups
Hospice Care
Hospices
Journal Of Child Health Care
Palliative Care
parent perspective
Parents
place belongingness
place identity
-
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
Special Edition #1 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
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1177/13674935211015561" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211015561</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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Parents’ advice to other parents of children with spinal muscular atrophy: Two nationwide follow-ups
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children; neuromuscular diseases; palliative care; parents; Spinal muscular atrophies of childhood
Creator
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Hjorth E; Kreicbergs U; Sejersen T; Werlauff U; Rahbek J; Lövgren M
Description
An account of the resource
Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. This study derives from two nationwide parental surveys in Sweden and Denmark, where content analysis was used to analyse one open-ended question about parents’ advice to other parents. Ninety-five parents (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life) participated (response rate: 84%). Of these 95 parents, 81 gave written advice to other parents. Advice covered coping with everyday life with the ill child, existential issues of living with and losing a child with SMA and involvement in care of the child. Parents highlighted leading normal lives insofar as possible, for example, trying to see healthy aspects in their child, not only focusing on care and treatment. Shared advice can be related to resilience strategies to parents, which can help healthcare professionals and others to support parents in similar situations.
Identifier
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<a href="http://doi.org/10.1177/13674935211015561" target="_blank" rel="noreferrer noopener">10.1177/13674935211015561</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 1 - Parent Perspectives
Children
Hjorth E
Journal Of Child Health Care
Kreicbergs U
Lövgren M
Neuromuscular Diseases
Palliative Care
Parents
Rahbek J
Sejersen T
Spinal Muscular Atrophies of Childhood
Werlauff U
-
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
October 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.1177/13674935211026122" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211026122</a>
Dublin Core
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Title
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Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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social support; palliative care; nursing; parents; Child health
Creator
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Oakley S; Dunbar H; de Vries K
Description
An account of the resource
The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.
Identifier
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<a href="http://doi.org/10.1177/13674935211026122" target="_blank" rel="noreferrer noopener">10.1177/13674935211026122</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Child Health
de Vries K
Dunbar H
Journal Of Child Health Care
Nursing
Oakley S
October 2021 List
Palliative Care
Parents
Social 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
August 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211026113</a>
Dublin Core
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Title
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Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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children; critical illness; scoping review; Sibling(s)
Creator
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Tay J; Widger K; Stremler R
Description
An account of the resource
Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research examining healthy siblings' experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child's illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings' experiences and focus on a wider variety of life-threatening conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">10.1177/13674935211026113</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Children
Critical Illness
Journal Of Child Health Care
Scoping review
Sibling(s)
Stremler R
Tay J
Widger K
-
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
January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1177/1367493520971426" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493520971426</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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Factors influencing nurse retention within children's palliative care
Publisher
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Journal of Child Health 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
Children; nursing; education; nurse’s role; palliative care nursing
Creator
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Whiting L; O'Grady M; Whiting M; Petty J
Description
An account of the resource
Retention of staff presents major challenges within children's palliative care; this has substantial implications for children, families and the nursing workforce. To address this, a programme was undertaken that provided pathways of professional development for senior nurses working in this field. This study reports the views of nurses completing this programme, the overall project manager (PM) and the day-to-day programme lead (PL) as well as factors that influence nurse retention within children's palliative care nursing. The study drew on an Appreciative Inquiry approach that comprised of interviews with the PM and PL as well as focus groups and questionnaires with senior nurses from the children's palliative care sector, who participated in the training programme. Thematic analysis of data from interviews and focus groups revealed factors influencing nurse retention: speciality, positivity and making a difference, support, provision of adequate resources, tailored education/professional development and resilience. These themes were supported by the questionnaire findings. The programme was perceived as having a positive influence on nurse retention within the children's palliative care workforce. In addition, it was felt to be very beneficial in terms of shared learning and development. Participants highlighted the need for similar opportunities in the future.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493520971426" target="_blank" rel="noreferrer noopener">10.1177/1367493520971426</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Children
Education
January 2021 List
Journal Of Child Health Care
nurse’s role
Nursing
O'Grady M
Palliative Care Nursing
Petty J
Whiting L
Whiting M
-
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
May 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
May 2020 List
URL Address
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493520915134</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
Experiencing place identity and place belongingness at a children's hospice: Parents' perspectives
Publisher
An entity responsible for making the resource available
Journal of Child Health 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
Children's hospice; parent perspective; place belongingness; place identity
Creator
An entity primarily responsible for making the resource
Dunbar H; Carter B
Description
An account of the resource
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Carter B
Children's Hospice
Dunbar H
Journal Of Child Health Care
May 2020 List
parent perspective
place belongingness
place identity
-
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
2019 Developing World 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
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1177/1367493518814926" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493518814926</a>
Dublin Core
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Title
A name given to the resource
Physicians' standpoints on end-of-life decisions at the neonatal intensive care units in Jordan
Publisher
An entity responsible for making the resource available
Journal of Child Health 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
End of life; infant; neonatal
Creator
An entity primarily responsible for making the resource
Abdel Razeq N M
Description
An account of the resource
The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23 hospitals in Jordan, completed internationally accepted questionnaires. Most physicians (75%) were supportive of using life-sustaining interventions, irrespective of the severity of the newborns' prognosis and the potential burden of the neonates' disabilities on their families. The general attitude of the physicians (59-88%) was against making decisions that limit life support at EOL; even those infants with what are, in fact, untreatable and disabling medical conditions (56-88%). Most physicians (77%) indicated that ethics committees should be involved in EOL decision-making based on requests from parents, physicians, or both. The results of this study indicate strong pro-life attitudes among the physicians whose role is to take care of infants in Jordan. The results also emphasize the need for (1) the creation of clear EOL-focused regulations and guidelines, (2) the establishment of special ethical committees to inform and assist healthcare providers' efforts during EOL care, and (3) raised awareness and competencies regarding EOL and ethical decision-making among physicians taking care of newborns in Jordan's intensive care units.
Identifier
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<a href="http://doi.org/10.1177/1367493518814926" target="_blank" rel="noreferrer noopener">10.1177/1367493518814926</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).
2019
Abdel Razeq N M
Developing World 2019 List
End Of Life
Infant
Journal Of Child Health Care
Neonatal
-
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 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
December 2019 List
URL Address
<a href="http://doi.org/10.1177/1367493519875593" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493519875593</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
The core features and outcomes of a specialised camp programme for children with life-limiting conditions and their families: A qualitative multi-perspective approach
Publisher
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Journal of Child Health 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
Family camp programme; paediatric life-limiting illness; qualitative
Creator
An entity primarily responsible for making the resource
Mulligan S; Guerin S; McKiernan A; Brown A; Hartnett M; Gray D; Kiernan G
Description
An account of the resource
Previous research has reported that the families of children with enduring and life-limiting health conditions are at risk of negative psychosocial effects. Adjunct to medical interventions, specialist camp programmes have been developed to promote familial adjustment. However, limited research has been carried out in this area. The aim of this study was to describe the core features and outcomes of a specialised camp programme for children with life-limiting conditions (LLC) and their family. Semi-structured interviews were conducted with four professionals, three volunteers involved in facilitating the programme and two mothers representing families that attended the programme. Multiple perspectives were sought to gain a detailed understanding of the programme and outcomes. Data were analysed through an inductive thematic approach. There was considerable overlap among participant groups on the core features and outcomes of the programme. Thematically, core features are described in terms of familial togetherness, peer interaction, safety and positive experiences. Noted outcomes include lasting memories, continued peer relations for parents and siblings and enhancement of relationships between family members and professionals. Findings suggest that specialised camp programmes may provide families of children with LLC with positive experiences that support adjustment, although further research is required.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493519875593" target="_blank" rel="noreferrer noopener">10.1177/1367493519875593</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).
2019
Brown A
December 2019 List
Family camp programme
Gray D
Guerin S
Hartnett M
Journal Of Child Health Care
Kiernan G
McKiernan A
Mulligan S
paediatric life-limiting illness
Qualitative
-
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
January 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
January 2019 List
URL Address
<a href="http://doi.org/10.1177/1367493518807312" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1177/1367493518807312</a>
Dublin Core
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Title
A name given to the resource
Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review
Publisher
An entity responsible for making the resource available
Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
life-limiting conditions; child; Breakthrough pain; data collection/instrumentation; retrospective review
Creator
An entity primarily responsible for making the resource
Oostendorp LJ; Rajapakse D; Kelly P; Crocker J; Dinsdale A; Fraser L; Bluebond-Langner M
Description
An account of the resource
This study explored the feasibility of generating reliable information on the frequency, nature and management of breakthrough pain (BTP) in children with life-limiting conditions and life-threatening illnesses (LTIs) from narrative clinical records. In the absence of standardized ways for documenting BTP, we conducted a consensus exercise to develop a glossary of terms that could denote BTP in the records. Thirteen clinicians who contributed to the records reached consensus on 45 terms which could denote BTP, while emphasizing the importance of contextual information. The results of this approach together with guidance for improving the reliability of retrospective reviews informed a data extraction instrument. A pilot test of this instrument showed poor agreement between raters. Given the challenges encountered, we do not recommend a retrospective review of BTP using narrative records. This study highlighted challenges of data extraction for complex symptoms such as BTP from narrative clinical records. For both clinical and research purposes, the recording of complex symptoms such as BTP would benefit from clear criteria for applying definitions, a more structured format and the inclusion of validated assessment tools. This study also showed the value of consensus exercises in improving understanding and interpretation of clinical notes within a service.
Identifier
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<a href="http://doi.org/10.1177/1367493518807312" target="_blank" rel="noreferrer noopener">10.1177/1367493518807312</a>
2018
Bluebond-Langner M
Breakthrough Pain
Child
Crocker J
data collection/instrumentation
Dinsdale A
Fraser L
January 2019 List
Journal Of Child Health Care
Kelly P
Life-limiting Conditions
Oostendorp LJ
Rajapakse D
retrospective review
-
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/10.1177/1367493513516391" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513516391</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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Being a presence': The ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
home care services; respite service
Creator
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Carter BS; Edwards M; Hunt A
Description
An account of the resource
Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their child's complex, often unpredictable, continuing care needs. Rainbow Trust Children's Charity aims to bridge gaps in services for children with life-threatening or terminal conditions by providing family support workers (FSWs). The study used a range of methods (surveys, interviews and ethnographic observation) approach to explore key aspects of the work of the FSWs. The target population for the surveys was families with a child having complex, life-threatening or terminal conditions receiving care from FSWs. The participants included 55 families (12 bereaved) and 39 children aged 2-18 years. Thematic analysis revealed how the FSWs became a presence in families' lives in three main ways: (1) encompassing and embracing families through supporting needs and promoting resilience; (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness; and (3) accompanying and enduring by 'being with' families in different settings, situations and crises and by enduring alongside the families. The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is usually not provided by other services.
2014-01
Identifier
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<a href="http://doi.org/10.1177/1367493513516391" target="_blank" rel="noreferrer">10.1177/1367493513516391</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Carter BS
Edwards M
home care services
Hunt A
Journal Article
Journal Of Child Health Care
respite service
-
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/10.1177/1367493514540817" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493514540817</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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Communication in pediatric critical care: A proposal for an evidence-informed framework.
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Carnevale FA; Farrell C; Cremer R; Seguret S; Canoui P; Leclerc F; Lacroix J; Hubert P
Description
An account of the resource
The aim of this investigation was to conduct a comprehensive examination of communication between parents and health care professionals (HCPs) in the pediatric intensive care unit (PICU). A secondary analysis was performed on data from 3 previous qualitative studies, which included 30 physicians, 37 nurses, and 38 parents in France and Quebec (Canada). All three studies examined a mix of cases where children either survived or died. All data referring to communication between parents (and patients when applicable) and HCPs were examined to identity themes that related to communication. Thematic categories for parents and HCPs were developed. Three interrelated dimensions of communication were identified: (1) informational communication, (2) relational communication, and (3) communication and parental coping. Specific themes were identified for each of these 3 dimensions in relation to parental concerns as well as HCP concerns. This investigation builds on prior research by advancing a comprehensive analysis of PICU communication that includes (a) cases where life-sustaining treatments were withdrawn or withheld as well as cases where they were maintained, (b) data from HCPs as well as parents, and (c) investigations conducted in 4 different sites. An evidence-informed conceptual framework is proposed for PICU communication between parents and HCPs. We also outline priorities for the development of practice, education, and research.
2014-07
Identifier
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<a href="http://doi.org/10.1177/1367493514540817" target="_blank" rel="noreferrer">10.1177/1367493514540817</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Canoui P
Carnevale FA
Cremer R
Farrell C
Hubert P
Journal Article
Journal Of Child Health Care
Lacroix J
Leclerc F
Seguret S
-
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/10.1177/1367493513485825" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513485825</a>
<a href="http://chc.sagepub.com/content/18/3/230" target="_blank" rel="noreferrer">http://chc.sagepub.com/content/18/3/230</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 relational understanding of sibling experiences of children with rare life-limiting conditions Findings from a qualitative study
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Palliative Care; qualitative approaches; Siblings
Creator
An entity primarily responsible for making the resource
Malcolm C; Gibson F; Adams S; Anderson G; Forbat L
Description
An account of the resource
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother’s or sister’s condition and the emotional sequelae of disease progression. Exploration of siblings’ experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.
2014-09
Identifier
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<a href="http://doi.org/10.1177/1367493513485825" target="_blank" rel="noreferrer">10.1177/1367493513485825</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).
Type
The nature or genre of the resource
Journal Article
2014
Adams S
Anderson G
Backlog
Forbat L
Gibson F
Journal Article
Journal Of Child Health Care
Malcolm C
Palliative Care
qualitative approaches
Siblings
-
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/10.1177/1367493514555588" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493514555588</a>
<a href="http://chc.sagepub.com/content/early/2014/11/13/1367493514555588" target="_blank" rel="noreferrer">http://chc.sagepub.com/content/early/2014/11/13/1367493514555588</a>
Dublin Core
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Title
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Improving and validating children’s nurses communication skills with standardized patients in end of life care
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Case-based scenarios; children’s nursing; standardized patients
Creator
An entity primarily responsible for making the resource
Kenny G; Cargil J; Hamilton C; Sales R
Description
An account of the resource
Children’s nurse education is experiencing increases in recruitment targets at the same time that clinical placements are decreasing. With regard to end-of-life care, it is has become a challenge to ensure that all students come into contact with a satisfactory range of experience as part of the requirement for competency at the point of registration. The aim of our study was to find out if students at the end of their course were able to use communication skills acquired in their three years of training and adapt and transfer them to a specific palliative care context even if they had never worked in that area of care. Focus groups were conducted after the simulations which explored the students’ experiences of being involved in the scenarios. Four themes emerged that students identified either inhibited or enabled their communication skills, which included anxiety and fear, the need for professional props, the experience of it being real and feeling empowered.
2014-11
Identifier
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<a href="http://doi.org/10.1177/1367493514555588" target="_blank" rel="noreferrer">10.1177/1367493514555588</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
2014
Backlog
Cargil J
Case-based Scenarios
Children’s Nursing
Hamilton C
Journal Article
Journal Of Child Health Care
Kenny G
Sales R
Standardized Patients
-
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/10.1177/1367493513510630" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513510630</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
Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care
Creator
An entity primarily responsible for making the resource
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Description
An account of the resource
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09
Identifier
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<a href="http://doi.org/10.1177/1367493513510630" target="_blank" rel="noreferrer">10.1177/1367493513510630</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
2015
Adolescent
Backlog
Brown E
Chambers L
Chesworth B
Child
Child Health Services
Children’s participation
Coad J
Disabled Children
Family
Focus Groups
Hacking S
Health Services Needs And Demand
Health Services Research
Humans
Hunt A
Interviews As Topic
Journal Article
Journal Of Child Health Care
Palliative Care
Quality Of Care
Referral And Consultation
Staniszewska 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1177/1367493507085616" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493507085616</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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Using participant observation in pediatric health care settings: ethical challenges and solutions
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Creator
An entity primarily responsible for making the resource
Carnevale FA; Macdonald ME; Bluebond-Langner M; McKeever P
Identifier
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<a href="http://doi.org/10.1177/1367493507085616" target="_blank" rel="noreferrer">10.1177/1367493507085616</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
2008
2008
Backlog
Bluebond-Langner M
Carnevale FA
Journal Article
Journal Of Child Health Care
Macdonald ME
McKeever P
-
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/10.1177/1367493508088552" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493508088552</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
What we know (and do not know) about raising children with complex continuing care needs
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
Creator
An entity primarily responsible for making the resource
Carnevale FA; Rehm RS; Kirk S; McKeever P
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</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
2008-03
2008
Backlog
Carnevale FA
Child Care
Cost Of Illness
Disabled Children
Health Services Needs And Demand
Healthcare Disparities
Home Nursing
Humans
Journal Article
Journal Of Child Health Care
Kirk S
Life Support Care
Long-Term Care
McKeever P
Parents
Patient Care Team
Pediatric Nursing
Rehm RS
Social Support
Special
-
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/10.1177/1367493509355621" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493509355621</a>
<a href="http://chc.sagepub.com.ezproxy.library.ubc.ca/content/14/2/151" target="_blank" rel="noreferrer">http://chc.sagepub.com.ezproxy.library.ubc.ca/content/14/2/151</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
Siblings’ farewell to a stillborn sister or brother and parents’ support to their older children: a questionnaire study from the parents’ perspective
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
bereavement; sibling; Stillbirth; Grief; sibling bereavement; mourning
Creator
An entity primarily responsible for making the resource
Erlandsson K; Avelin P; Säflund K; Wredling R; Rådestad I
Description
An account of the resource
This study aims to capture parental descriptions of how siblings take leave of and mourn a stillborn brother or sister and how their parents support them. Data were collected by questionnaires from 16 parents of siblings to a stillborn child one year after the stillbirth. Data were analysed numerically for the multiple-choice questions and content analysis was used for parental comments and descriptions. The results describe siblings’ farewell to a stillborn brother or sister and how their parents in the midst of their own grief were involved in supporting siblings’ wellbeing, and observed their mourning reactions. Although the findings need to be interpreted with caution, they may provide insight that enables staff to become more sensitive to the whole family experience in the practice of their profession. Further research into siblings’ grief and parental support after stillbirth is crucial so that further light may be shed on their situation.
2010-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493509355621" target="_blank" rel="noreferrer">10.1177/1367493509355621</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
2010
Avelin P
Backlog
Bereavement
Erlandsson K
Grief
Journal Article
Journal Of Child Health Care
mourning
Rådestad I
Säflund K
Sibling
sibling bereavement
Stillbirth
Wredling R
-
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/10.1177/1367493505050506" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493505050506</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
Caring for children with complex needs: staff education and training
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Nursing; PedPal Lit; Attitude of Health Personnel Caregivers/education Child Community Health Nursing/educationEducation; Continuing Home Care Services/manpower HumansInservice TrainingLong-Term Care Nursing Staff/education Pediatric Nursing/education Professional-Family Relations
Creator
An entity primarily responsible for making the resource
Hewitt-Taylor J
Description
An account of the resource
Children who live with medical conditions that were previously considered incompatible with long term survival are often highly dependent on interventions and equipment which would traditionally have required hospitalization. However, it is generally accepted that their social, psychological, emotional and developmental needs are best met at home. One of the many factors that can impede these children from being discharged from hospital is the lack of availability of staff who can provide care and support for them and their families. Increasing the number of staff who are able to provide such support might, therefore, assist in providing for their care needs. This article reports on a study of the perceived education and training needs of staff who care for children with complex needs and their families.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493505050506" target="_blank" rel="noreferrer">10.1177/1367493505050506</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
2005
Attitude of Health Personnel Caregivers/education Child Community Health Nursing/educationEducation
Backlog
Continuing Home Care Services/manpower HumansInservice TrainingLong-Term Care Nursing Staff/education Pediatric Nursing/education Professional-Family Relations
Hewitt-Taylor J
Journal Article
Journal Of Child Health Care
Nursing
PedPal Lit
-
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/10.1177/1367493505056485" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493505056485</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
Being ill as narrated by children aged 11-18 years
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit; Adolescent ChildCost of Illness Female Humans Interviews Male Sweden
Creator
An entity primarily responsible for making the resource
Forsner M; Jansson L; Soerlie V
Description
An account of the resource
Being ill from a child's perspective has not been often investigated. The aim of this study was to illuminate the experience of being ill between the ages of 11-18 years. Four girls and one boy who were suffering short-term illness were interviewed and the data obtained subjected to qualitative content analysis. Illness disrupted their daily lives and made things unrecognizable. Being ill at the age of 11-18 seemed to imply being lost, hurt and in need of comfort from themselves and others. These narrations may indicate to health care professionals how they can improve their practice. This study suggests what is appreciated by children of this age when ill, namely being spoken to and informed about the illness and treatment. The children valued peace and quiet and wanted to listen to and adjust to their bodies.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493505056485" target="_blank" rel="noreferrer">10.1177/1367493505056485</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
2005
Adolescent ChildCost of Illness Female Humans Interviews Male Sweden
Backlog
Forsner M
Jansson L
Journal Article
Journal Of Child Health Care
PedPal Lit
Soerlie V
-
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/10.1177/1367493506060209" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493506060209</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 moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Intensive Care Units; Grief; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Clinical Competence; Qualitative Research; Morals; Hospitals; Nursing Methodology Research; Pediatric; Adaptation; Psychological; decision making; infant; Parents/education/psychology; ICU Decision Making; social support; Physician's Role/psychology; Hospitalized/psychology; Intensive Care/psychology; Guilt; Life Support Care/psychology; Attitude to Health/ethnology; Parental Consent/psychology; Paris
Creator
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Carnevale FA; Canoui P; Hubert P; Farrell C; Leclerc F; Doussau A; Seguin MJ; Lacroix J
Description
An account of the resource
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information
(2) physicians should be responsible for life-support decisions
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493506060209" target="_blank" rel="noreferrer">10.1177/1367493506060209</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
2006
Adaptation
Attitude to Health/ethnology
Backlog
Canoui P
Carnevale FA
Child
Clinical Competence
Communication
Decision Making
Doussau A
Farrell C
Grief
Guilt
Health Services Needs And Demand
Hospitalized/psychology
Hospitals
Hubert P
Humans
ICU Decision Making
Infant
Intensive Care Units
Intensive Care/psychology
Journal Article
Journal Of Child Health Care
Lacroix J
Leclerc F
Life Support Care/psychology
Morals
Nursing Methodology Research
Parental Consent/psychology
Parents/education/psychology
Paris
Pediatric
Physician's Role/psychology
Professional-family Relations
Psychological
Qualitative Research
Questionnaires
Seguin MJ
Social Support
-
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/10.1177/1367493504041868" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493504041868</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
Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Female; Humans; Male; Adolescent Psychology; Great Britain; Adult; Attitude to Health; Interviews as Topic; Age Factors; Qualitative Research; Continuity of Patient Care; Professional-Patient Relations; adolescent; Adolescent Transitions; social support; Patient Transfer; Adolescent Health Services/organization & administration; Chronic Disease/psychology/therapy
Creator
An entity primarily responsible for making the resource
Soanes C; Timmons S
Description
An account of the resource
Transition is a process that attends to the medical, psychosocial and educational needs of young people as they transfer to adult-orientated care. With a growing population of adolescents surviving with chronic illness well into adulthood, it is remarkable that empirical research has paid little attention to transition. This qualitative study examined the attitudes of young people with chronic illness who were facing transition, considering what young people wanted from a transition service and the ways in which provision could be improved from a service-user's perspective. A purposive sample of seven adolescents (aged 14-17) attending a hospital youth club were interviewed. To increase the likelihood of successful transition, strategies need to be informal, flexible, highly individualized and prepare adolescents steadily for adult services.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493504041868" target="_blank" rel="noreferrer">10.1177/1367493504041868</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
2004
Adolescent
Adolescent Health Services/organization & administration
Adolescent Psychology
Adolescent Transitions
Adult
Age Factors
Attitude To Health
Backlog
Chronic Disease/psychology/therapy
Continuity Of Patient Care
Female
Great Britain
Humans
Interviews As Topic
Journal Article
Journal Of Child Health Care
Male
Patient Transfer
Professional-patient Relations
Qualitative Research
Soanes C
Social Support
Timmons S