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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 2021 List
Text
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August 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.06.011</a>
Dublin Core
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Title
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Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children with Severe Neurological Impairment During Decision-Making
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
2021
Subject
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children; palliative care; complex care; disabilities; caregivers; parents
Creator
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Bogetz JF; Trowbridge A; Lewis H; Shipman KJ; Jonas D; Hauer J; Rosenberg AR
Description
An account of the resource
CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. OBJECTIVE: This study describes the experiences of parents of children with SNI during decision-making. METHODS: Eligible participants were parents facing a decision for a child with SNI admitted to acute or intensive care units at a single tertiary pediatric center. Parents completed 1:1 semi-structured interviews and brief surveys between August 2019-February 2020. Demographic information was extracted from the child's electronic health record. A team of palliative and complex care researchers with expertise in qualitative methods used thematic content analysis to formulate results. RESULTS: 25 parents participated. The majority had children with congenital/chromosomal SNI conditions (n=13, 65%), >5 subspecialists (n=14, 61%), and chronic technology assistance (n=25, 100%). 68% (n=17) were mothers and 100% identified as being their child's primary decision-maker. Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness of parental decision-making efforts and parents' advocacy and vigilance regarding their child's needs. Despite this, parents often felt unheard and undervalued in the hospital. CONCLUSIONS: During hospitalizations, when parents of children with SNI often face high-stakes medical decisions, interventions are needed to support parents and ensure they feel heard and valued as they navigate their child's medical needs and system challenges.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.011</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).
2021
August 2021 List
Bogetz JF
Caregivers
Children
complex care
Disabilities
Hauer J
Jonas D
Journal of Pain and Symptom Management
Lewis H
Palliative Care
Parents
Rosenberg AR
Shipman KJ
Trowbridge 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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October 2021 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
October 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.029" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.07.029</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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Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review
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
2021
Subject
The topic of the resource
Children; decision-making; communication; medical complexity; parents
Creator
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Jonas D; Scanlon C; Bogetz JF
Description
An account of the resource
CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nuanced. OBJECTIVES: To review the literature specifically related to the parent experience of medical decision-making for CMC from the parent perspective. METHODS: A comprehensive, systematic approach was undertaken with the goal of identifying emergent themes in the existing literature as well as implications for clinical practice and future research. PubMed and PsycInfo databases were searched for English-language articles published between 1995-2020 that focused on parent experiences/perspectives using the search terms: children with medical complexity, children with serious illness, parent decision-making, parent experience, goals of care, parental priorities, advance care planning, and shared decision-making. RESULTS: The search yielded 300 unique manuscripts; including 32 empirical articles incorporated in this review. The synthesized findings were broken down into three main sections: 1. types of decisions that parents of CMC face, 2. key factors that influence parental decision-making for CMC, and 3. reasons that the decision-making process for parents of CMC is unique. The findings suggest that parents should be considered experts in their child's care and should be incorporated in shared decision-making in a culturally appropriate manner. CMC should have their personhood valued and providers require specialized training in communication. CONCLUSIONS: Parents of CMC have unique needs in their decision-making process and benefit from shared decision-making, continuity of care, collaborative communication and tailored, individualized care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.029" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.029</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).
2021
Bogetz JF
Children
Communication
Decision-making
Jonas D
Journal of Pain and Symptom Management
Medical Complexity
October 2021 List
Parents
Scanlon C
-
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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November 2021 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
November 2021 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0344" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0344</a>
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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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From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children; palliative care; complex care; disabilities; caregivers; parents
Creator
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Bogetz JF; Lewis H; Trowbridge A; Jonas D; Hauer J; Wilfond BS
Description
An account of the resource
Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. Objectives: This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically. Design: Cross-sectional qualitative study. Setting/Subjects: Parents/legal guardians of children with SNI at a tertiary pediatric academic center in the United States completed 1:1 interviews between August 2019 and February 2020. Measurements: Qualitative researchers with expertise in care for children with SNI, palliative care, and bioethics used thematic content analysis to inductively analyze data for relevant themes. Results: Twenty-five parents/legal guardians of 23 children with SNI participated. Sixty-eight percent were mothers and 24% were fathers; and 68% were white. Thirty-two percent were from other racial and/or ethnic backgrounds. Children predominantly had congenital/chromosomal (n = 15, 65%) and central nervous system static (n = 6, 26%) SNI diagnoses. Four themes emerged regarding both challenges and approaches to understanding children with SNI holistically. These included uniqueness, interdependency, complexity, and universality. Parents felt that by eliciting and incorporating their perspective on these sometimes contrasting but inherently necessary aspects of their child's care, clinicians would understand their children more fully. Conclusion: By viewing the child through the prismed lens of parents, participants described how clinicians could transition from a monochromatic to a technicolor view of their child-including the inherent contrasting needs required for their comprehensive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0344" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0344</a>
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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).
2021
Bogetz JF
Caregivers
Children
complex care
Disabilities
Hauer J
Jonas D
Journal of Palliative Medicine
Lewis H
November 2021 List
Palliative Care
Parents
Trowbridge A
Wilfond BS
-
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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June 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
June 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.341" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.02.341</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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Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role in Pediatric Palliative Care
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
2022
Subject
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Education; Interdisciplinary; Palliative care; Pediatric; Social work
Creator
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Jonas D; Patneaude A; Purol N; Scanlon C; Remke S
Description
An account of the resource
While social workers are a well-established, part of the pediatric palliative care team, this manuscript presents the first published definition of the core competencies of a pediatric palliative care social worker. National experts in the field, guided by the pediatric special interest group of the Social Work Hospice and Palliative Network (SWHPN), worked together to articulate, and define core competencies. As the field of pediatric palliative care (PPC) continues to grow and develop, these competencies will help to better delineate the specific skill base of social workers in PPC. Such competencies may also create clearer role definition for emerging PPC social workers, guide training, clinical supervision, and mentorship in the field. They can also support improved interdisciplinary practice by assisting interprofessional colleagues in understanding and articulating the critical role of social workers as part of the PPC team. Additionally, such competencies may contribute to the growing development of role descriptions necessary for the hiring of social workers onto growing PPC teams, while also providing a framework for the creation and support of curricula centered on the subspeciality education and training of the next generation of PPC social workers. Copyright © 2022 American Academy of Hospice and Palliative Medicine
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.341" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.341</a>
Rights
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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).
2022
April 2022 List
Education
Interdisciplinary
Jonas D
Journal of Pain and Symptom Management
Palliative Care
Patneaude A
Pediatric
Purol N
Remke S
Scanlon C
Social Work
-
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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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.2021-006316" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2021-006316</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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Forming Clinician-Parent Therapeutic Alliance for Children With Severe Neurologic Impairment
Publisher
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Clinician; Collaboration; Parents; Pediatric; Severe neurologic impairment
Creator
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Bogetz JF; Trowbridge A; Lewis H; Jonas D; Hauer J; Rosenberg AR
Description
An account of the resource
OBJECTIVES: Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance are often lacking. This study aimed to examine aspects important to developing therapeutic alliance between clinicians and parents of children with SNI. METHOD(S): A purposive sample of expert clinicians and parents of children with SNI completed brief demographic surveys and 1:1 semistructured interviews between July 2019 and August 2020 at a single tertiary pediatric academic center. Interviews focused on the inpatient experience and transcriptions underwent thematic analysis by a study team of qualitative researchers with expertise in palliative care and communication science. RESULT(S): Twenty-five parents and 25 clinicians participated (total n = 50). Many parents were mothers (n = 17, 68%) of school-aged children with congenital/chromosomal conditions (n = 15, 65%). Clinicians represented 8 professions and 15 specialties. Responses from participants suggested 3 major themes that build and sustain therapeutic alliance including: (1) foundational factors that must exist to establish rapport; (2) structural factors that provide awareness of the parent/child experience; and (3) weathering factors that comprise the protection, security, and additional support during hard or uncertain times. Participants also shared concrete actions that promote these factors in clinical practice. CONCLUSION(S): Therapeutic alliance between clinicians and parents of children with SNI consists of at least 3 factors that support communication and medical decision-making. These factors are facilitated by concrete actions and practices, which enhance communication about the care for children with SNI. Copyright © 2022 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.2021-006316" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-006316</a>
2022
April 2022 List
Bogetz JF
Clinician
Collaboration
Hauer J
Hospital Pediatrics
Jonas D
Lewis H
Parents
Pediatric
Rosenberg AR
severe neurologic impairment
Trowbridge 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
August 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
August 2022 List
URL Address
<a href="http://doi.org/10.1177/00099228221099135" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/00099228221099135</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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The Impact of Caring for Children With Severe Neurological Impairment on Clinicians
Publisher
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Clinical Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
pediatric; palliative care; education; disability; burnout; workforce
Creator
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Bogetz JF; Trowbridge A; Jonas D; Root MC; Mullin J; Hauer J
Description
An account of the resource
Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/00099228221099135" target="_blank" rel="noreferrer noopener">10.1177/00099228221099135</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).
2022
August 2022 List
Bogetz JF
Burnout
Clinical Pediatrics
Disability
Education
Hauer J
Jonas D
Mullin J
Palliative Care
Pediatric
Root MC
Trowbridge A
workforce