Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
advance care planning; Caregiver Attitudes; hospice and palliative medicine; oncology; psychiatry; psychology
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Thompkins JD; Needle J; Baker JN; Briggs L; Cheng YI; Wang J; Friebert S; Lyon ME
Pediatrics
2021
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).
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-029330</a>
Impact of a pediatric palliative care team on resident education in end of life care
hospice and palliative medicine; pediatric palliative care; resident education
Introduction: The presence of Pediatric Palliative Care (PPC) teams and PPC curricula at teaching hospitals are shown to increase resident physician education in pain and symptom management. However, their impact on residents' comfort in caring for children at the end of life (EOL) is not well studied. We sought to examine whether differences exist in reported levels of experience and education with palliative andEOL care among physicians completing residency before versus after the development of a PPC team. Method(s): We surveyed 329 pediatrics residents and graduates from our medium-sized children's hospital about their experiences and education in providing palliative or EOL care to pediatric patients. We compared responses from residents who completed training prior to the development of a PPC team to those who completed training after its implementation. Result(s): 149 individuals (45%) responded. Participants who completed residency during or after the implementation of the PPC team were more likely to agree that they received education about EOL symptom management (K<sup>2</sup> = 11.58, P < 0.001) and felt comfortable caring for patients at EOL (K <sup>2</sup> = 5.62, P = 0.02). Discussion(s): Our findings suggest a beneficial impact of PPC team presence on pediatrics resident education. When appropriate, involving of pediatrics residents in the care of children approaching EOL should be supported and encouraged. Copyright © 2021 Informa UK Limited, trading as Taylor & Francis Group.
Pennarola B; MacDonell-Yilmaz RE; Sprinz P; Renaud T
Progress in Palliative Care
2021
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).
<a href="http://doi.org/10.1080/09699260.2021.1871578" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1871578</a>
Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
systematic review; hospice and palliative medicine; bereavement; father grief
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Pediatrics
2021
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).
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
Primary palliative care: Skills for all clinicians
advance care plan; American Academy of Pediatrics; end-of-life; goal of care; goals of care; hospice and palliative medicine; palliative care; quality of care
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit.$^{\textrm{1,2}}$ High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains.$^{\textrm{3}}$ Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families. Copyright © 2020 Elsevier Inc.
Sreedhar S S; Kraft C; Friebert S
Current Problems in Pediatric and Adolescent Health Care
2020
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).
<a href="http://doi.org/10.1016/j.cppeds.2020.100814" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2020.100814</a>
Developing Competencies for Pediatric Hospice and Palliative Medicine
milestones; competencies; fellowship training; hospice and palliative medicine
In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician–educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.
2014-11
Klick J; Friebert SE; Hutton N; Osenga K; Pituch K; Vesel T; Weidner NJ; Block SD; Morrison LJ
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2014-0748" target="_blank" rel="noreferrer">10.1542/peds.2014-0748</a>