August 2022 List
Title
August 2022 List
Collection Items
The Surprise Question as a Trigger for Primary Palliative Care Interventions for Children with Advanced Heart Disease
There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be…
Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…
Paediatric advance care planning in life-limiting conditions: Scoping review of parent experiences
Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents'…
The Impact of Caring for Children With Severe Neurological Impairment on Clinicians
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…
"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…
Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective
BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible…
The Gift of Life: Interprofessional Organ Donation Curriculum in Pediatric Critical Care
BACKGROUND: The number of patients awaiting organ transplantation is high, particularly in Pediatrics, in which available organs are scarce. To maximize organ donation opportunities and to provide quality end-of-life care, clinicians from all…
The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of…
Descriptive analysis of palliative sedation in a pediatric palliative care unit
INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the…
Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia
Introduction: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. Method(s): This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service…
Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they…
Long Term Support of Children with Life-Threatening Disease - Summary of the First Two Years of the Pediatric Palliative Care Service in Shaare Zedek Medical Center Jerusalem
INTRODUCTION: Palliative care involves management of medical, psychological, mental and social symptoms of children with life-threatening illnesses. AIMS: The article describes the organization and function of a multidisciplinary palliative care…
Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
BACKGROUND: Corneal donation is a rare event among pediatric patients dying in children's hospices in Italy. Previous research suggests that lack of knowledge and negative attitude of Health Care Professionals (HCPs) are the most relevant factors for…
Impact of an Evidence-Based Pediatric Palliative Care Program on Nurses' Self-Efficacy
Background The purpose of this study was to determine the effect of a 1-day evidence-based pediatric palliative care continuing professional development program on nurses' and advanced practice registered nurses' perceived self-efficacy regarding…
Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants
BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,
Ethical challenges for a new generation of early-phase pediatric gene therapy trials
After decades of setbacks, gene therapy (GT) is experiencing major breakthroughs. Five GTs have received US regulatory approval since 2017, and over 900 others are currently in development. Many of these GTs target rare pediatric diseases that are…
Pictures as mementos after perinatal death: a case study
BACKGROUND: The grieving process following perinatal loss caused by life-limiting conditions presents some particularities associated with the family's culture and the symbolic relationship with the deceased. OBJECTIVE: To reflect on the symbolic…
A Mother's Tears: Contemplating Black Grief
As we have traversed the last 2 years of the COVID-19 pandemic juxtaposed against an increased awakening to the realities of racial inequities in society and health care, the grief of Black individuals and communities has largely been…
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with…
Moral equivalence theory in neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and…
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty.…
Identifying opportunities for pediatric medication therapy management in children with medical complexity
BACKGROUND: Despite potential benefits of medication therapy management (MTM) for complex pediatric patients, implementation of pediatric MTM services is rare. OBJECTIVES: To describe how a standardized pediatric MTM model identifies potential…
Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions
Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely…
I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s,…
Caregivers' perception of teenagers' dignity in end of life stages: A phenomenological study
Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to…
The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons…
Fifteen-minute consultation: How to communicate with parents who have a child on life support with no hope of recovery
A child on life support with no hope of recovery is the worst nightmare for parents and for paediatricians. Unfortunately, some children have illnesses or injuries that are not compatible with life. Being in a vegetative state with no meaningful…
Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on…
How can advance care planning tools help young people's voices be heard?
The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences,…
Addressing bias and disparities in periviable counseling and care
Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It…