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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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August 2020 List
Text
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August 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2019-035863" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2019-035863</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/.
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Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands
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BMJ Open
Date
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2020
Subject
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medical ethics; paediatric palliative care; palliative care
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Brouwer M; Maeckelberghe E L M; van der Heide A; Hein I; Verhagen E
Description
An account of the resource
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions. DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed. SETTING: The Netherlands. PARTICIPANTS: 64 parents of 44 children. RESULTS: Parents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person. CONCLUSIONS: The barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2019-035863" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-035863</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
August 2020 List
Bmj Open
Brouwer M
Hein I
Maeckelberghe E L M
Medical Ethics
paediatric palliative care
Palliative Care
van der Heide A
Verhagen 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
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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
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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 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/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15370</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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Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Advance care planning; care goals; communication; decision-making; life-limiting conditions
Creator
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Fahner J; Rietjens J; van der Heide A; Milota M; van Delden J; Kars M
Description
An account of the resource
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them. RESULTS: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP. CONCLUSION: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.
Identifier
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<a href="http://doi.org/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">10.1111/apa.15370</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
Acta Paediatrica
Advance Care Planning
care goals
Communication
Decision-making
Fahner J
July 2020 List
Kars M
Life-limiting Conditions
Milota M
Rietjens J
van Delden J
van der Heide A