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November 2020 List
Text
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November 2020 List
URL Address
<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120922973</a>
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Title
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Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
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American Journal of Hospice & Palliative Medicine
Date
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2020
Subject
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Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Female; Funding Source; Health Resource Utilization; Human; Male; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood
Creator
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Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R
Description
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Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
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<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</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
Academic Medical Centers
American Journal of Hospice & Palliative Medicine
Anticipatory Guidance
Bereavement
Chi Square Test
Child
Childhood Neoplasms
Communication
Cousino M K
Data Analysis Software
Decision Making
Descriptive Statistics
Family
Female
Funding Source
Health Resource Utilization
Human
Hutchinson R
Male
McCaffery H
Midwestern United States
November 2020 List
Parental Attitudes – Evaluation
Patient Preference
Paul T K
Pituch K
Professional-family Relations
Professional-patient Relations
psychosocial
Quality Of Life
Questionnaires
Record Review
Retrospective Design
Sedig L K
Shared
Spruit J L
Support
Terminal Care – In Infancy and Childhood