1
40
17
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Title
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2023 Special Edition 4 - Parent Perspectives List
Text
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2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216320979153</a>
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A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Humans; Child; children; Male; Palliative care; Qualitative Research; *Parents; Anthropology, Cultural; fathers; healthcare; life-limiting; meta-ethnography; *Fathers
Creator
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Postavaru, G. I.; Swaby, H.; Swaby, R.
Description
An account of the resource
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs. AIM: To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring. DATA SOURCES: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. RESULTS: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, 'nobody thinks of men', impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. CONCLUSION: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.
Identifier
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<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">10.1177/0269216320979153</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).
*Fathers
*Parents
2020
2023 SE4 - Parent Perspectives
Anthropology, Cultural
Child
Children
Fathers
healthcare
Humans
Life-limiting
Male
meta-ethnography
Palliative Care
Palliative Medicine
Postavaru, G. I.
Qualitative Research
Swaby, H.
Swaby, R.
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320979153</a>
Dublin Core
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Title
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A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children; Palliative care; life-limiting; fathers; healthcare; meta-ethnography
Creator
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Postavaru GI; Swaby H; Swaby R
Description
An account of the resource
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs. AIM: To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring. DATA SOURCES: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. RESULTS: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, 'nobody thinks of men', impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. CONCLUSION: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.
Identifier
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<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">10.1177/0269216320979153</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
Children
Fathers
healthcare
Life-limiting
meta-ethnography
Palliative Care
Palliative Medicine
Postavaru GI
Swaby H
Swaby R
-
Dublin Core
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Title
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November 2021 List
Text
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Citation List Month
November 2021 List
URL Address
<a href="http://doi.org/10.3390/children8090741" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8090741</a>
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Title
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Development of the Dutch Structure for Integrated Children's Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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family; life-limiting; integrated care; life-threatening; care network; children’s palliative care; homecare; paediatric palliative care team
Creator
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Vallianatos S; Huizinga CSM; Schuiling-Otten MA; Schouten-van Meeteren AYN; Kremer LCM; Verhagen AAE
Description
An account of the resource
Children's palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children's Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care for children countrywide. This led to the development of the first hospital-based CPC team in 2012, which expanded to a total of seven teams adjacent to children's university hospitals. Regional networks for CPC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of CPC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for CPC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline, 'palliative care for children', provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual palliative care plan was established. Within the Knowledge Centre for CPC, a physician's support centre for dilemma's regarding the end of life of children was set up. The efforts to have children's palliative care embedded in the regular Dutch health care insurance are ongoing.
Identifier
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<a href="http://doi.org/10.3390/children8090741" target="_blank" rel="noreferrer noopener">10.3390/children8090741</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
care network
Children
Children’s palliative care
Family
homecare
Huizinga CSM
integrated care
Kremer LCM
Life-limiting
Life-threatening
November 2021 List
paediatric palliative care team
Schouten-Van Meeteren AYN
Schuiling-Otten MA
Vallianatos S
Verhagen AAE
-
Dublin Core
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Title
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October 2021 List
Text
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Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jval.2021.03.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jval.2021.03.015</a>
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Measuring Financial Burden in Families of Children Living With Life-Limiting Conditions: A Scoping Review of Cost Indicators and Outcome Measures
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Value in Health
Date
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2021
Subject
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cost; family; financial burden; life-limiting; pediatric
Creator
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Mitterer S; Zimmermann K; Bergstrasser E; Simon M; Gerber AK; Fink G
Description
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Objectives: This study aimed to provide a comprehensive overview of cost indicators and outcome measures used to measure financial burden in families of children with life-limiting conditions. Method(s): A scoping review methodology was used to map the existing literature and provide an overview of available cost indicators and outcome measures. Key medical, economic, and scientific databases were systematically searched to identify relevant articles published in 2000 or later. Result(s): The database search yielded 7194 records, including 30 articles eligible for final inclusion. Retrieved cost indicators and outcome measures fell into 3 broad categories: direct costs, indirect costs, and financial support. No study comprehensively assessed all 3 categories. Cost indicators used to measure direct costs were grouped into 5 medical and 11 nonmedical out-of-pocket expenses categories, of which 5 were commonly assessed (ie, treatment and diagnostics, travel and transport, accommodation, food, childcare and home help). Half of the reviewed studies included assessments of indirect costs, most commonly estimating work-related income loss by evaluating employment disruptions. Assessments of opportunity costs arising from informal caregiving and of financial support were rarely included. Conclusion(s): Current estimates of the financial burden faced by families of children with life-limiting conditions are inconsistent and often incomplete, likely resulting in severe underestimations of the costs these families incur. We hope that the framework presented in this article will contribute to a more comprehensive assessment of illness-related financial burden and help guide future policies in this area. Copyright © 2021 ISPOR-The Professional Society for Health Economics and Outcomes Research
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<a href="http://doi.org/10.1016/j.jval.2021.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.jval.2021.03.015</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
Bergstrasser E
Cost
Family
Financial Burden
Fink G
Gerber AK
Life-limiting
Mitterer S
October 2021 List
Pediatric
Simon M
Value In Health
Zimmermann K
-
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Title
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June 2021 List
Text
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June 2021 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14885" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14885</a>
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Viral gene therapy for paediatric neurological diseases: progress to clinical reality
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Developmental Medicine & Child Neurology
Date
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2021
Subject
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clinical; life-limiting; neurological diseases; paediatric; viral gene therapy
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Privolizzi R; Chu WS; Tijani M; Ng J
Description
An account of the resource
In the era of genomic medicine, diagnoses of rare paediatric neurological diseases are increasing. Many are untreatable and life-limiting, leading to an exceptional increase in gene therapy development. It is estimated that 20 gene therapy products will have received approval from the US Food and Drug Administration by 2025. With viral gene therapy considered a potential single-dose cure for patients with spinal muscular atrophy type 1 as one example, and contemporaneously tragically resulting in the deaths of three male children with X-linked myotubular myopathy receiving high-dose gene therapy in 2020, what is the current state of gene therapy? What is behind the decades of hype around viral gene therapy and is it high impact, but high risk? In this review, we outline principles of viral gene therapy development and summarize the most recent clinical evidence for the therapeutic effect of gene therapy in paediatric neurological diseases. We discuss adeno-associated virus and lentiviral vectors, antisense oligonucleotides, emerging genetic editing approaches, and current limitations that the field still faces.
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<a href="http://doi.org/10.1111/dmcn.14885" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14885</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
Chu WS
Clinical
Developmental Medicine & Child Neurology
June 2021 List
Life-limiting
neurological diseases
Ng J
Paediatric
Privolizzi R
Tijani M
viral gene therapy
-
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Title
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.02.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.02.007</a>
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Long-Term Daily Administration of Aprepitant for the Management of Intractable Nausea and Vomiting in Children With Life-Limiting Conditions: A Case Series
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Journal of Pain and Symptom Management
Date
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2021
Subject
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aprepitant; life-limiting; nausea; palliative; pediatric; vomiting
Creator
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Patel B; Downie J; Bayliss J; Stephenson A; Bluebond-Langner M
Description
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Background: Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care for refractory nausea and vomiting has been limited due to limited experience or evidence of continuous use. Emerging evidence suggests that continuous use is not only safe, but also effective in patients with nausea and vomiting refractory to multiple lines of antiemetic therapy. Method(s): We conducted a single centre retrospective chart review of children receiving care from a specialist palliative care team who were given continuous daily aprepitant for nausea and vomiting and were unresponsive to at least two prior lines of antiemetic therapy. Parental reports of the impact of nausea on mobility and feeding were used as proxy efficacy markers. Duration of effect and toxicity was also evaluated. Result(s): Ten children (eight with cancer as a primary diagnosis and two with noncancer diagnoses) received continuous aprepitant and all showed resolution of nausea and vomiting and an increased ability to mobilize and tolerate feeds. No adverse events noted. Conclusion(s): Our review suggests a role for aprepitant in management of refractory nausea and vomiting, demonstrating safety and efficacy. This case series is the first report of aprepitant use in this manner in the paediatric palliative care setting. Copyright © 2021 The Authors
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.02.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.007</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
aprepitant
Bayliss J
Bluebond-Langner M
Downie J
Journal of Pain and Symptom Management
Life-limiting
May 2021 List
Nausea
Palliative
Patel B
Pediatric
Stephenson A
Vomiting
-
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1177/02692163211000238" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211000238</a>
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Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents' accounts in a palliative care setting: A qualitative study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Children; palliative care; qualitative; experiences; life-limiting; life-threatening
Creator
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Ciobanu E; Preston N
Description
An account of the resource
BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if adults are frequently unwilling to share information with children, they become aware of their diagnosis and prognosis. The theory of awareness contexts provided a theoretical framework through which it can be understood what children knew about their condition. AIM: To advance the understanding of the experiences of children with a life-threatening or life-limiting condition. DESIGN: A qualitative study using dyadic interviews and thematic analysis. SETTING/PARTICIPANTS: Ten children between 14 to 17 years old with a life-threatening or life-limiting illness who were supported by a palliative care service in Romania. Interviews were also undertaken with their mothers. RESULTS: Interview data demonstrated that there was a gap in the child's experience and understanding of their condition compared to their parents. The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. The study showed that children can read subtle cues or they may talk with other children to learn about their illness when information is not openly available to them. CONCLUSIONS: Children in the study often know more about their condition than their parents realised. Using this understanding, healthcare professionals can advise parents and children about how to communicate with one another which would enable the children to give voice to their thoughts, emotions and experiences.
Identifier
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<a href="http://doi.org/10.1177/02692163211000238" target="_blank" rel="noreferrer noopener">10.1177/02692163211000238</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
Children
Ciobanu E
Experiences
Life-limiting
Life-threatening
May 2021 List
Palliative Care
Palliative Medicine
Preston N
Qualitative
-
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Title
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March 2021 List
Text
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Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2020.12.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2020.12.015</a>
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Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Diagnosis; Children; Parents; Experience; Life-limiting
Creator
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Hurley F; Kiernan G; Price J
Description
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PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: 'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'. CONCLUSION: Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.
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<a href="http://doi.org/10.1016/j.pedn.2020.12.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.12.015</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
Children
Diagnosis
Experience
Hurley F
Journal of Pediatric Nursing
Kiernan G
Life-limiting
March 2021 List
Parents
Price J
-
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Title
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July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000755" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000755</a>
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Implementation of a Perinatal Hospice Program
Publisher
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Advances in Neonatal 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
antenatal hospice; life-limiting; neonatal; neonatal intensive care unit; NICU; perinatal hospice; perinatal palliative care
Creator
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Falke M; Rubarth L B
Description
An account of the resource
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHOD(S): The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULT(S): The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000000755" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000755</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
Advances in Neonatal Care
antenatal hospice
Falke M
July 2020 List
Life-limiting
Neonatal
Neonatal Intensive Care Unit
Nicu
Perinatal Hospice
Perinatal Palliative Care
Rubarth L B
-
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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June 2020 List
Text
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Citation List Month
June 2020 List
URL Address
<a href="http://doi.org/10.3390/medsci8020020" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/medsci8020020</a>
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Title
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Advances and Challenges in European Paediatric Palliative Care
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Medical Sciences (Basel)
Date
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2020
Subject
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child; decision-making; life-limiting; paediatric/pediatric; palliative care
Creator
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Fraser L K; Bluebond-Langner M; Ling J
Description
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Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children's palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children's palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.
Identifier
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<a href="http://doi.org/10.3390/medsci8020020" target="_blank" rel="noreferrer noopener">10.3390/medsci8020020</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
Bluebond-Langner M
Child
Decision-making
Fraser L K
June 2020 List
Life-limiting
Ling J
Medical Sciences (Basel)
paediatric/pediatric
Palliative Care
-
Dublin Core
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Title
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October 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
October 2019 List
URL Address
<a href="http://doi.org/10.1186/s12910-019-0393-7" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12910-019-0393-7</a>
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Title
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Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature
Publisher
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BMC Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Abortion; Birth; Continuation; Disorder; Life-limiting; Pregnancy; Termination
Creator
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Blakeley C; Smith D M; Johnstone E D; Wittkowski A
Description
An account of the resource
BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. METHODS: Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden's (2008) thematic synthesis method was used to synthesise data from identified studies. RESULTS: Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled 'all life is precious', described parents' perception of the importance of the fetus' life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 ('hope for a positive outcome') contained two sub-themes which considered the parent's own imagined future and the influence of other people's experiences. Finally, Theme 3 ('a life worth living') presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. CONCLUSION: The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents' decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other's quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices.
Identifier
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<a href="http://doi.org/10.1186/s12910-019-0393-7" target="_blank" rel="noreferrer noopener">10.1186/s12910-019-0393-7</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
Abortion
Birth
Blakeley C
Bmc Medical Ethics
Continuation
Disorder
Johnstone E D
Life-limiting
October 2019 List
Pregnancy
Smith D M
Termination
Wittkowski A
-
Dublin Core
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Title
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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.03.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.03.010</a>
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Title
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The Limits of "Life-Limiting"
Publisher
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Journal of Pain & Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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pediatrics; hospice; life-limiting; life-threatening; terminal; risk
Creator
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Macauley R C
Description
An account of the resource
The field of hospice and palliative medicine has struggled to define the conditions that are appropriate for palliative care. "Life-threatening" appropriately encompasses lethal conditions and helpfully incorporates the concept of probability, which is a necessary variable in any risk calculation. Yet it leaves one important group of patients unaccounted for: those whose primary need for palliative care is not expected abbreviation of life but rather the quality of that life. In an attempt to include these patients, the term "life-limiting" has come to be used more frequently. Although attractive in its breadth-and at first glance appearing to be a less threatening way to introduce palliative care-the term is inherently flawed. It denotes a certain outcome, without any consideration of the likelihood of that outcome. Rather than "softening the blow" of introducing palliative care, the term seems to condemn a patient to the very outcome that palliative care is tasked to ameliorate, namely, the limitation of life. As such, it may provide a distorted view of what palliative care is, especially in pediatrics where the term is used with disproportionate frequency. The inherent misplaced certainty of "life-limiting" and the self-defeating message it sends to patients should be acknowledged.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.03.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.03.010</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
August 2019 List
Hospice
Journal Of Pain & Symptom Management
Life-limiting
Life-threatening
Macauley R C
Pediatrics
Risk
terminal
-
Dublin Core
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Title
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June 2018 List
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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).
Text
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Citation List Month
June 2018 List
URL Address
<a href="http://doi.org/10.3390/children5050055" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children5050055</a>
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Title
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From Inpatient to Clinic to Home to Hospice and Back: Using the "Pop Up" Pediatric Palliative Model of Care
Publisher
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Children (Basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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discharge; goals of care; hospice; hospital; inpatient; life-limiting; palliative; pediatric; Pop Up
Creator
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Mherekumombe MF
Description
An account of the resource
Children and young people with life-limiting illnesses who need palliative care often have complex diverse medical conditions that may involve multiple hospital presentations, medical admissions, care, or transfer to other medical care facilities. In order to provide patients with holistic care in any location, palliative care clinicians need to carefully consider the ways to maintain continuity of care which enhances the child's quality of life. An emerging model of care known as "Pop Up" describes the approaches to supporting children and young people in any facility. A Pop Up is a specific intervention over and above the care that is provided to a child, young person and their family aimed at improving the confidence of local care providers to deliver ongoing care. This paper looks at some of the factors related to care transfer for pediatric palliative patients from one care facility to another, home and the impact of this on the family and medical care.
Identifier
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<a href="http://doi.org/10.3390/children5050055" target="_blank" rel="noreferrer noopener">10.3390/children5050055</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).
2018
Children (Basel)
discharge
Goals Of Care
Hospice
Hospital
Inpatient
June 2018 List
Life-limiting
Mherekumombe MF
Palliative
Pediatric
Pop Up
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
October 2017 List
Notes
<p>Friedrichsdorf, Stefan J<br />Postier, Andrea C<br />Andrews, Gail S<br />Hamre, Karen Es<br />Steele, Rose<br />Siden, Harold<br />Journal Article<br />New Zealand<br />J Pain Res. 2017 Jul 31;10:1841-1852. doi: 10.2147/JPR.S138153. eCollection 2017.</p>
URL Address
<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">https://doi.org/10.2147/JPR.S138153</a>
Dublin Core
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Title
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Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study
Publisher
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Journal Of Pain Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Hospice; Life-limiting; Neuropathic Pain; Palliative; Pediatric Palliative Care
Creator
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Friedrichsdorf SJ; Postier A; Andrews GS; Hamre K E; Steele R; Siden H
Description
An account of the resource
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.
Identifier
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<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">10.2147/jpr.s138153</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Andrews GS
Charting the territory
Friedrichsdorf SJ
Hamre K E
Hospice
Journal Of Pain Research
Life-limiting
Neuropathic Pain
October 2017 List
Pain and Irritability Project
Palliative
Pediatric Palliative Care
Postier A
Siden H
Steele 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
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/27804151
Dublin Core
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Title
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Siblings Of Children With Life‐limiting Conditions: Psychological Adjustment And Sibling Relationships
Publisher
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Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Behaviour Problems; Impact On Siblings; Life-limiting; Quality Of Life
Creator
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Fullerton JM; Totsika V; Hain R; Hastings RP
Description
An account of the resource
Background This study explored psychological adjustment and sibling relationships of siblings of children with life‐limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions. Methods Thirty‐nine siblings participated, aged 3–16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable ‘high risk’ group. Results LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio‐economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment. Conclusions Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Identifier
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10.1111/cch.12421
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).
2016
Behaviour Problems
Child: Care, Health and Development
Fullerton JM
Hain R
Hastings RP
Impact On Siblings
June 2017 List
Life-limiting
Quality Of Life
Totsika 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
November 2016 List
Dublin Core
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Title
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Integrating Pediatric Palliative Care Into The School And Community.
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Chronic Illness; Hospice; Life-limiting; Life-threatening; Pediatric Palliative Care; Quality Of Life; School; Transition
Creator
An entity primarily responsible for making the resource
Davis KG
Description
An account of the resource
Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community. Cooperation between all caregivers benefit the child and family.
Identifier
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Pediatr Clin North Am.
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).
2016
Chronic Illness
Davis KG
Hospice
Life-limiting
Life-threatening
November 2016 List
Pediatric Clinics of North America
Pediatric Palliative Care
Quality Of Life
School
Transition
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
"siblings Of Children With Life-limiting Conditions: Psychological Adjustment
And Sibling Relationships."
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Siblings; Families & Family Life; Emotional Disorders; Adjustment; Quality Of Life
Behaviour Problems; Impact On Siblings; Life-limiting; Quality Of Life
Creator
An entity primarily responsible for making the resource
Fullerton JM; Totsika V; Hain R; Hastings RP
Description
An account of the resource
BACKGROUND:
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions.
METHODS:
Thirty-nine siblings participated, aged 3-16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable 'high risk' group.
RESULTS:
LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio-economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment.
CONCLUSIONS:
Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field.
Identifier
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DOI: 10.1111/cch.12421
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).
2016
Adjustment
Behaviour Problems
Child: Care, Health and Development
Emotional Disorders
Families & Family Life
Fullerton JM
Hain R
Hastings RP
Impact On Siblings
Life-limiting
November 2016 List
Quality Of Life
Siblings
Totsika V