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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 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
August List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231180926</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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"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
Publisher
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Palliative Medicine
Date
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2023
Subject
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child; United States; Bereavement; adult; article; human; palliative therapy; grief; young adult; sibling; quality of life; epistemology; qualitative research; language; phenomenology; caregiver; perception; genetic transcription; semi structured interview; ritual; altruism
Creator
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Jones MT; Albanese E; Boles JC
Description
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BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6months-18years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. <br/>RESULT(S): Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. <br/>CONCLUSION(S): Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</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).
2023
Adult
Albanese E
Altruism
Article
August List 2035
Bereavement
Boles JC
Caregiver
Child
epistemology
genetic transcription
Grief
Human
Jones MT
Language
Palliative Medicine
Palliative Therapy
Perception
Phenomenology
Qualitative Research
Quality Of Life
ritual
Semi Structured Interview
Sibling
United States
Young Adult
-
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 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
April 2022 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2021-005964" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2021-005964</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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An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care
Publisher
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Hospital Pediatrics
Date
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2021
Subject
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Bereavement; Hospital care; Interdisciplinary; Pediatric
Creator
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Goldberg JM; Duplechain AC; Fraser CE; Boles JC
Description
An account of the resource
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children's hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves. Copyright © 2021 by the American Academy of Pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2021-005964" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-005964</a>
2021
April 2022 List
Bereavement
Boles JC
Duplechain AC
Fraser CE
Goldberg JM
Hospital care
Hospital Pediatrics
Interdisciplinary
Pediatric