June 2024 List
Title
June 2024 List
Collection Items
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…
An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing
BACKGROUND: Research exploring nurse-parent relationships in children's hospices is rare. AIM: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. METHODS: A…
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…
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…
“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…
Bereaved Parents' Change in Mental Health during a Dyadic Diary
Recent years have seen a shift in the number of bereavement studies examining daily grief processes, but our knowledge is still limited due to the lack of dyadic research. In this paper, we explored the change in mental health in the course of a…
Mortality in the neonatal intensive care setting: Do benchmarks tell the whole story?
AIM: Australian neonatal mortality data are collected and shared within collaborative networks. Individual unit outcomes are benchmarked between units and presented in quarterly or yearly reports. Low mortality is commonly interpreted as optimal…
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…
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…
Definition and Assessment of Paediatric Breakthrough Pain: A Qualitative Interview Study
Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric…
Tools used to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions: A scoping review
AIM: To identify and describe assessment tools used to measure the impact of comorbidities on postoperative outcomes in children with complex chronic conditions (CCC). METHOD: This was a scoping review using five electronic databases. The search was…
A Dialogue between Hindu and Catholic Perspectives in Taking Care of Newborns at their End-of-Life
Hinduism is considered one of the most ancient religions in the world. Although the technological innovation of modernization has undermined the reliance on their traditions, Hindus may still rely on Hindu Scripture when making decisions. From their…
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…
Experiences of pregnancy loss in Israeli first-time expecting fathers: A qualitative study
Abstract The aim of this study was to explore the experiences of pregnancy loss in first-time expecting fathers. Participants were 14 Jewish Israeli men who experienced pregnancy loss that occurred at least 3 months before their participation and who…
Benefits of Respite Services on the Psycho-Emotional State of Families of Children Admitted to Hospice Palliative Care Unit: Preliminary Study on Parents' Perceptions
BACKGROUND: In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from…
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…
Meta-synthesis of ethnic minority families' experiences of children's palliative care across developed countries
OBJECTIVES: Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers' ability to align their support with the perspectives and…
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…
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 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…
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…
It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study
BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL.…
Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit-a Systematic Review
Background: Parental bereavement after the death of an infant in a neonatal intensive care unit (NICU) is a complex and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short-…
Experiences of Fathers in Norway Attending an Online Course on Therapeutic Writing After the Death of a Child
After the unexpected death of a child, bereaved parents require prompt access to helpful support systems. Online therapeutic writing courses can make such support accessible. Because few studies have included bereaved fathers as participants, we…
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…
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…
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…
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…
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…
Healthcare service use for children with chronic complex diseases: A longitudinal six-year follow-up study
PURPOSE: The objective was analysed the patterns use of healthcare services of this population and the influence of their clinical and sociodemographic characteristics. DESIGN AND METHODS: A six-year longitudinal follow-up study was performed to…
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.…
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…
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…
Pediatric Population Management Classification for Children with Medical Complexity
Improving the overall care of children with medical complexity (CMC) is often beset by challenges in proactively identifying the population most in need of clinical management and quality improvement. The objective of the current study was to create…
Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context
Abstract Objectives: Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This…
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…
Pediatric End-of-Life Simulation Workshop to Clinical Care: Lasting Implications on Clinical Practice
BACKGROUND: Simulations are an important modality for practicing high-acuity, low-frequency events. We implemented a deliberate practice simulation-based workshop to improve pediatric end-of-life care skills (PECS) competence. PURPOSE: To understand…
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…
Healthcare costs and utilization in medically fragile pediatric patients during the first year of care coordination
The current study explored the impact of pediatric outpatient care coordination across the first year of enrollment to better understand how services can be stratified for medically fragile children to ensure their needs are met. A retrospective…
Prognostic Disclosure to Dying Adolescents Against Parental Wishes: A Point-Counter Point Debate
An adolescent's last moment of life is an emotionally and medically complex time. Children may grapple with understanding the things happening to them and with grief of a future lost; caregivers struggle to simultaneously balance deep sorrow, hope,…