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40
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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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December 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.
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December 2020 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-0529-z</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Attitude to Death; Grief; Adaptation; Bereavement; Hospice Care/methods/psychology/standards; Humans; Interventions; Models theoretical; Paediatrics; Parenting/psychology; Parents; Parents/psychology; Psychological; Psychological Theory; Social Support; Systematic review
Creator
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Kochen EM; Jenken F; Boelen PA; Deben LMA; Fahner JC; van den Hoogen A; Teunissen SCCM; Geleijns K; Kars MC
Description
An account of the resource
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
Identifier
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<a href="http://doi.org/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-0529-z</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
Adaptation
Attitude To Death
Bereavement
BMC Palliative Care
Boelen PA
Deben LMA
December 2020 List
Fahner JC
Geleijns K
Grief
Hospice Care/methods/psychology/standards
Humans
Interventions
Jenken F
Kars MC
Kochen EM
Models Theoretical
Paediatrics
Parenting/psychology
Parents
Parents/psychology
Psychological
Psychological Theory
Social Support
Systematic Review
Teunissen SCCM
van den Hoogen 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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March 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
March 2022 List
URL Address
<a href="http://doi.org/10.1111/apa.16248" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.16248</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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Insight into the content of and experiences with follow-up conversations with bereaved parents in paediatrics: A systematic review
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
follow-up; end-of-life; paediatrics; parents; bereavement
Creator
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van Kempen MM; Kochen EM; Kars MC
Description
An account of the resource
AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content of follow-up conversations between bereaved parents and regular healthcare professionals (HCPs) in paediatrics and how parents and HCPs experience these conversations. METHODS: Systematic literature review using the methods PALETTE and PRISMA. The search was conducted in PubMed and CINAHL on 3 February 2021. The results were extracted and integrated using thematic analysis. RESULTS: Ten articles were included. This review revealed that follow-up conversations are built around three key elements: (1) gaining information, (2) receiving emotional support and (3) facilitating parents to provide feedback. In addition, this review showed that the vast majority of parents and HCPs experienced follow-up conversations as meaningful and beneficial for several reasons. CONCLUSION: An understanding of what parents and HCPs value in follow-up conversations aids HCPs in conducting follow-up conversations and improves care for bereaved parents by enhancing the HCPs' understanding of parental needs.
Identifier
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<a href="http://doi.org/10.1111/apa.16248" target="_blank" rel="noreferrer noopener">10.1111/apa.16248</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).
2022
Acta Paediatrica
Bereavement
end-of-life
Follow-up
Kars MC
Kochen EM
March 2022 List
Paediatrics
Parents
van Kempen MM
-
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/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.11.001</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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Health care professionals' experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Bereavement; palliative care; end-of-life; Health Personnel; Terminal Care; Child Loss
Creator
An entity primarily responsible for making the resource
Kochen EM; Boelen PA; Teunissen SCCM; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Description
An account of the resource
CONTEXT: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into the health care professionals' (HCPs) intentions and strategies in pre-loss care during the end-of-life is still lacking. OBJECTIVES: To create a starting point for improvement of pre-loss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end-of-life. METHODS: Exploratory qualitative research using individual semi-structured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team. RESULTS: Nineteen HCPs participated. HCPs tried to ensure that (1) parents could reflect on the care received as concordant to their preferences and (2) were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While employing these strategies, HCPs faced several difficulties: uncertainty about the illness-course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues and making joint decisions with colleagues. CONCLUSIONS: HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and wellbeing during the end-of-life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence and training is needed to improve pre-loss care in pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.001</a>
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
Bereavement
Boelen PA
Child Loss
de Jonge RR
end-of-life
Grootenhuis MA
Health Personnel
January 2021 List
Jenken F
Journal of Pain and Symptom Management
Kars MC
Kochen EM
Palliative Care
Terminal Care
Teunissen SCCM
-
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/10.1016/j.acap.2021.08.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.acap.2021.08.015</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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Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
Publisher
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Academic Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Pediatrics; palliative care; bereavement; end of life care; Health personnel
Creator
An entity primarily responsible for making the resource
Kochen EM; Teunissen SCCM; Boelen PA; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Description
An account of the resource
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. METHODS: Exploratory qualitative research using semi-structured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multi-disciplinary team thematically analyzed the data. RESULTS: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. CONCLUSION: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.acap.2021.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.08.015</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).
2021
Academic Pediatrics
Bereavement
Boelen PA
de Jonge RR
End Of Life Care
Grootenhuis MA
Health Personnel
Jenken F
Kars MC
Kochen EM
October 2021 List
Palliative Care
Pediatrics
Teunissen SCCM
-
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/10.1111/apa.16716" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16716</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
A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; loss; end of life; Only Child; palliative; bereavement; coping with grief
Creator
An entity primarily responsible for making the resource
Kochen EM; Grootenhuis MA; Teunissen Sccm; Boelen PA; Tataranno ML; Fahner JC; de Jonge RR; Houben ML; Kars MC
Description
An account of the resource
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. RESULTS: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. CONCLUSION: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.16716" target="_blank" rel="noreferrer noopener">10.1111/apa.16716</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).
2023
Acta Paediatrica
April List 2023
Bereavement
Boelen PA
Child
coping with grief
de Jonge RR
End Of Life
Fahner JC
Grootenhuis MA
Houben ML
Kars MC
Kochen EM
Loss
Only Child
Palliative
Tataranno ML
Teunissen SCCM