1 40 3 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 A name given to the resource An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care Publisher An entity responsible for making the resource available Hospital 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 Bereavement; Hospital care; Interdisciplinary; Pediatric Creator An entity primarily responsible for making the resource 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 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 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 A name given to the resource "They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions Publisher An entity responsible for making the resource available Palliative Medicine 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; 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 An entity primarily responsible for making the resource Jones MT; Albanese E; Boles JC Description An account of the resource 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 An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</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 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 June 2025 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 June List 2025 URL Address <a href="http://doi.org/10.1089/jpm.2024.0547" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2024.0547</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 "This Kind of Thing is Part of His Legacy": Bereaved Parents' Experiences of Participating in Interview-Based Research Publisher An entity responsible for making the resource available Journal of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2025 Creator An entity primarily responsible for making the resource Jones MT; Terala A; Boles JC Description An account of the resource Background: Every year, a significant number of parents/caregivers experience the loss of a child, many of whom have received palliative care services. The resultant consequences of grief on their physical and psychological well-being can be significant. Little is known about bereaved parents/caregivers experience with or perceptions about participating in bereavement-focused research. Objective: To explore bereaved parents' perceptions of participating in three research studies about their loss experiences and legacy perceptions. Design: A retrospective secondary analysis was conducted using qualitative and archival data drawn from three prior studies. Setting/Subjects: Participants included parents/caregivers of 44 children (ages from birth to 18 years) who died between 2000 and 2020 at a freestanding academic children's hospital in the United States. Measurements: Transcripts from semi-structured interviews and documentation of email communications were analyzed using an inductive coding approach grounded in psychological phenomenology. Results: Participant experiences of and motivations for participating in bereavement-related research were organized into two themes: 1) a means of extending the child's legacy and 2) an avenue for self-expression and gratitude. None of the participants across studies indicated any discomfort in, dissatisfaction with, or ill feelings toward bereavement research involvement. Conclusions: Bereaved parents/caregivers described their research participation in personally meaningful and altruistic ways and reported gratitude for their involvement in and the focus of the research. With careful attention to bereaved parent/caregiver participant needs and preferences, it is possible to produce impactful family-centered palliative care research that can improve anticipatory and bereavement service provision. Keywords: bereaved caregiver; methodology; pediatric palliative care; psychosocial support; research participation. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jpm.2024.0547" target="_blank" rel="noreferrer noopener">10.1089/jpm.2024.0547</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). 2025 Boles JC Jones MT Journal of Palliative Medicine June List 2025 Terala A