Browse Items · Pediatric Palliative Care Library

Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions

INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the…

Tags: 2024, Bansal S, Brandon D, Communication, Disclose., family conferences, Family-centered Care, Journal of Pain and Symptom Management, Lemmon ME, Nanduri N, Neonatal Palliative Care, November List 2024, Peralta D, Pollak KI, Rent S, Spirituality

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…

Assessing Pediatric Resident Needs in Grief and Bereavement Education

Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work…

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life

Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred…

Challenges in Home-Based Pediatric Hospice and Palliative Care: A Case Series

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and…

The spiritual dimension of parents' experiences caring for a seriously ill child: an interview study

Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…

Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care

Context: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused…

The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties

Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the…

Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they…

Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy…

"Somebody Hug the Interpreter": Enhancing Pediatric Palliative Care Partnership with Medical Interpreters

Outcomes: 1. Utilizing a case-based approach, participants will be able to describe the unique roles embodied by in-person medical interpreters in the context of pediatric serious illness and summarize the personal, patient/encounter-level, and…

Perinatal Palliative Care Fellowship: Development of a Novel Subspeciality Track in Palliative Medicine

Outcomes: 1. In reviewing trends in pediatric palliative medicine fellowship applicant pools and discussing the landscape of perinatal medicine, participants will understand the rationale for development of a new subspecialty fellowship track in…

Tags: 2024, Adult, Certification, Clinician, conference abstract, fetal health, Fry J, Health Center, Henner N, Human, Journal of Pain and Symptom Management, June List 2024, Neonatology, Palliative Therapy, Perinatal Care, respiratory gas humidifier, Surgery, Vente T

Improving Pediatric Residency End-Of-Life Education: A Quality Improvement Approach

Outcomes: 1. Participants will be able to understand that a quality improvement model is an effective method for developing graduate medical education curricula for end-of-life care. 2. Participants will be able to recognize the lack of pediatric…

Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death

Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does…

Deepening Clinician Understanding of Family Caregivers' Lived Experiences Caring for Medically Complex Children

Outcomes: 1. Participants will self-report the ability to summarize elements of CMC family caregivers' four "unseen" experiences and justify the need for innovative methods to capture them. 2. Participants will self-report the ability to describe the…

Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange

Outcomes: 1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those…

Tags: 2024, Adult, care behavior, Caregiver, Caregiver Support, Child, Clinician, conference abstract, Diagnosis, Health Care System, Human, Journal of Pain and Symptom Management, June List 2024, McCarthy S, Palliative Therapy, Porter AS, rejuvenation, Respite Care, Self Report

Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity

Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2.…

Respecting Spirituality During Extubations: Holding Space for Miracles and Legacy with Reactive Comfort Plans

Baby M experienced hypoxic ischemic encephalopathy with four subsequent unsuccessful extubations. He would not survive without potentially irreversible long-term ventilation. His parents lovingly decided against interventions that would not "fix" his…

Tags: 2024, Ammon EH, Baker J, Existentialism, Humanities, Journal of Pain and Symptom Management, June List 2024, Managing Suffering and Distress, Mauser D, Moriarty J, Morvant A, Norvell M, Religion, Spirituality

Free and Appropriate: Navigating School Integration for Pediatric Patients Receiving Palliative Care or Hospice

Outcomes: 1. Participants will self-report the ability to evaluate the complexities and nuances of school (re)integration for pediatric patients receiving palliative care or hospice. 2. By utilizing an interdisciplinary approach which includes…

The ROAR Score: Quantifying Risk of Acute Return to the Hospital in Pediatric Hospice Patients

Outcomes: 1. Implement a scoring system to facilitate clear and concise communication of goals of care between palliative care teams, hospice staff, and families. 2. Understand the benefits of a scoring system for hospice staff to mitigate family…

Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program

Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to…

Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace

Outcomes: 1. Know how advance care planning with families of children with rare diseases can improve family caregiver outcomes. 2. Understand the impact of race and social determinants of health on family caregiver appraisal of their caregiving and…

Everything But: A Case Series of Strategies to Care for the Pediatric Chronically, Critically Ill Patient and Family

Outcomes: 1. Use strategies to understand family's hopes, wishes and worries for their chronically and often critically ill child and what they perceive to be prolonging life versus prolonging death. 2. Utilize specific language to make…

Improving Safe Opioid Prescribing for Pediatric Hospice and Palliative Care Patients

Outcomes: 1. Utilizing a quality improvement-approach, participants will self-report the ability to assess the implementation of several opioid safety components (i.e. opioid safety contract, open-ended question, and mental health screener) and how…

Development of Specialty-Based Pediatric Palliative Care Clinics

Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to…

Improving Pediatric Residents' Comfort and Facility with End-of-Life Care with a Just-In-Time Online Module

Outcomes: 1. Participants will be able to learn how a just-in-time module can be constructed to address both resident needs and palliative care teaching goals. 2. Participants will be able to describe different ways in which a just-in-time module can…

Has Pediatric Palliative Care Become Too Deferential? A Challenge To and For the Field

Outcomes: 1. Utilizing a case-based approach plus content expert didactic presentation, participants will self-report ability to identify 3 defensive mechanisms utilized by caregivers and providers during shared decision making (SDM) that can…

Symptom Trajectories and Mortality Among Children Receiving Palliative Care: A Prospective Cohort Study

Outcomes: 1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric…

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where…

Characterizing Pain in Pediatric Palliative Care Clinical Documentation

Outcomes: 1. Attendees will be able to identify the methods used to abstract and characterize pain from the electronic health record of children and adolescents with cancer receiving palliative care services. 2. Attendees will be able to describe the…

“At Least I Can Push this Morphine”:PICU Nurses’ Approaches to Suffering Among Dying Children

Context: Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying…

Tags: 2024, Broden EG, DeCourcey DD, Eche-Ugwu IJ, Hinds P, Journal of Pain and Symptom Management, June List 2024, Nursing, Pediatric, Pediatric Intensive Care, Qualitative Research, Snaman J, Wolfe J

The Alluring, Enduring, and Troubling Concept of a "Good Death" in Pediatric Palliative Care

Outcomes: 1. Using a critical historical approach, participants will evaluate why, how, and for/with who the "good death" concept emerged and how it has persisted over time. 2. The interprofessional authorship team will illustrate and deconstruct the…

Preparing for the Unimaginable: How Pediatric ICU Nurses Prepare Families for the Dying Process

Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help…

A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care

Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically…

Quality of Outpatient Pediatric Palliative Care Telehealth: A Retrospective Chart Review

CONTEXT: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated…

Tags: 2024, Banerjee A, Casas J, Disparities, health outcomes, Hellsten M, Jarrell JA, Journal of Pain and Symptom Management, May List 2024, Nguyen DT, Nobleza KJ, Outpatient palliative care, Palliative Care, Pediatrics, Quality, Telehealth, White C, Williams E

Palliative Care for Pediatric Urology

Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative…

Tags: 2024, Boss RD, Journal of Pain and Symptom Management, Lee R, Li O, May List 2024, Palliative Care, Patient Care Team, Pediatrics, urology, Wang MH

Psychologists as Pivotal Members of the Pediatric Palliative Care Team

Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists…

Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement

Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal…

In every detail: spiritual care in pediatric palliative care perceived by healthcare providers

Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…

Pediatric Palliative Care Program Implementation in LMICs: A Systematic Review using SWOT Analysis

CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies…

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