1
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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June 2020 List
Text
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June 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28229</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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Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
Publisher
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Pediatric Blood & Cancer
Date
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2020
Subject
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decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Creator
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Mekelenkamp H; Lankester A C; Bierings M B; Smiers F J W; Vries M C; Kars M C; de Vries M C
Description
An account of the resource
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
Identifier
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<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</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
Bierings M B
de Vries M C
Decision-making
end-of-life
Experiences
Hematopoietic stem cell transplantation
June 2020 List
Kars M C
Lankester A C
Mekelenkamp H
parental
Pediatric
Pediatric Blood & Cancer
Smiers F J W
Vries M C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1007/s00431-020-03627-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-020-03627-2</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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Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child
Publisher
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European Journal of Pediatrics
Date
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2020
Subject
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Advance care planning; Communication; Pediatric palliative care; Shared decision making
Creator
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Fahner J C; Tholking T W; Rietjens J A C; van der Heide A; van Delden J J M; Kars M C
Description
An account of the resource
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians.What is Known:* Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach.* Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning.What is New:* When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past.* There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings.
Identifier
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<a href="http://doi.org/10.1007/s00431-020-03627-2" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03627-2</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
Advance Care Planning
Communication
European Journal of Pediatrics
Fahner J C
Kars M C
May 2020 List
Pediatric Palliative Care
Rietjens J A C
shared decision making
Tholking T W
van Delden J J M
van der Heide 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
July 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1007/s00431-019-03393-w</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
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Publisher
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European Journal of Pediatrics.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Creator
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Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
Description
An account of the resource
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>
2019
anxiety
Article
Bosman D K
Caregiving
Child
Child Care
Child Parent Relation
Clinical Article
Colenbrander D A
Controlled Study
Coping
Coping Behavior
Decision Making
European Journal of Pediatrics.
Experiences
Female
Grief
Grootenhuis M A
Human
Interview
July 2019 List
Kars M C
Male
Paediatrics
Palliative Care
Palliative Therapy
Parents
Pediatrics
Perception
Qualitative Research
Schouten-van Meeteren A Y N
tension
Thematic Analysis
Uncertainty
van Delden J J M
van den Bergh E M M
Verberne L M