1
40
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Dublin Core
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Title
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October 2020 List
Text
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October 2020 List
URL Address
<a href="http://doi.org/10.1097/pq9.0000000000000328" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pq9.0000000000000328</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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Safety in Pediatric Hospice and Palliative Care: A Qualitative Study
Publisher
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Pediatric Quality and Safety
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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hospice; palliative care; pediatrics; qualitative study; safety
Creator
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Pestian T; Thienprayoon R; Grossoehme D; Friebert S; Humphrey L
Description
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INTRODUCTION: Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified definition of safe care. This qualitative study sought to explore caregiver views regarding safe care in pediatric HPC. METHODS: This is a secondary analysis of qualitative data from a multisite study utilizing semistructured interview data to evaluate parental perspectives of quality in pediatric home-based HPC programs across 3 different pediatric tertiary care hospitals. Eligible participants included parents and caregivers of children who were enrolled in a pediatric home-based hospice and palliative care program (HBHPC) from 2012 to 2016. The analysis was done using grounded theory methodology. RESULTS: Forty-three parents participated in 39 interviews across all 3 sites; 19 families were bereaved. Responses to the prompt regarding safe care produced 8 unique domains encompassing parental definitions of safe care in pediatric HPC. DISCUSSION: Parents of children in HPC programs describe "safe care" in novel ways, some of which echo Maslow's hierarchy of needs. The use of traditional hospital safety measures for patients receiving HPC could undermine the patient's goals or dignity, ultimately leading to harm to the patient. CONCLUDING SUMMARY: Patients' and families' unique goals and values must be considered when defining safety for children in this population. Future studies should continue to explore family perspectives of safety in the hospital and ambulatory settings and seek to identify measurable indicators in safety which are truly patient- and family-centered.
Identifier
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<a href="http://doi.org/10.1097/pq9.0000000000000328" target="_blank" rel="noreferrer noopener">10.1097/pq9.0000000000000328</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
Friebert S
Grossoehme D
Hospice
Humphrey L
October 2020 List
Palliative Care
Pediatric Quality and Safety
Pediatrics
Pestian T
Qualitative Study
Safety
Thienprayoon R
-
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
March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.147</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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Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Lane J; Grossoehme D
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</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).
Description
An account of the resource
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.
2019
bath
Child
college
Comfort
conference abstract
Controlled Study
Feasibility Study
Grossoehme D
Human
illumination
injury
Intensive Care Unit
Interview
Job Satisfaction
Journal of Pain and Symptom Management
Lane J
Light
March 2019 List
Memory
Morality
mourning
Posthumous Care
Privacy
Staff
Student
Terminal Care
Thienprayoon R
thinking