October 2020 List
Title
October 2020 List
Collection Items
A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight…
Estimating the prevalence of life-limiting conditions in Queensland for children and young people aged 0-21 years using health administration data
Objective The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting…
The "lactation after infant death (AID) framework": a guide for online health information provision about lactation after stillbirth and infant death
This article collated and critically reviewed international evidence-based lactation and bereavement information to devise a comprehensive framework on the diverse options for lactation management after stillbirth and infant death by outlining the…
Effectiveness of psychotherapeutic interventions on psychological distress in women who have experienced perinatal loss: a systematic review protocol
Background: Perinatal loss is a traumatic and complex experience that contributes to negative maternal psychological states and adverse outcomes impacting fetal development, maternal-fetal/infant bonding, marital/partner relationships, and child…
A systematic review exploring palliative care for families who are forced migrants
AIMS: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications. DESIGN: Systematic literature review. DATA SOURCES:…
Developing an Infrastructure for Bereavement Outreach in a Maternal-Fetal Care Center
Although bereavement programs are a common element of palliative medicine and hospice programs, few maternal-fetal care centers offer universal bereavement outreach services following perinatal loss. In this article, we describe the implementation of…
Place bonding' in children's hospice care: a qualitative study
BACKGROUND: Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. AIM: This study aimed to explore parents' perspectives and experiences of a…
The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to…
A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the…
Off-Label and Unlicensed Drugs in Pediatric Palliative Care: A Prospective Observational Study
Context: Off-label and unlicensed use of drugs is a widespread practice in pediatric care because of the lack of specific efficacy and safety data and the absence of formulations adapted to the needs of these individuals. Pediatric patients with a…
I'm praying for a miracle': characteristics of spiritual statements in paediatric intensive care unit care conferences
CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU).…
Compassionate Design: Utilizing Design Thinking to Preserve Sanctity, Dignity, and Personhood When Children Die
INTRODUCTION: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children…
When a child is sick: the role of social tourism in palliative and end-of-life care
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered…
Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme
AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of…
Palliative Care Engagement for Pediatric Ventricular Assist Device Patients: A Single-Center Experience
Outcomes in pediatric patients with ventricular assist devices (VADs) for advanced heart failure (HF) are improving, but the risk of associated morbidity and mortality remains substantial. Few data exist on the involvement of pediatric palliative…
Analysis of how nurses cope facing the death of a paediatric patient
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.…
Challenges following hospital discharge for children with medical complexity
OBJECTIVES: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls. METHOD(S): In this…
Impact of Caring for Terminally Ill Children on Physicians: A Systematic Scoping Review
INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review…
Pediatric Palliative Care When COVID-19 Positive Adults Are Dying in a Children’s Hospital
* Abbreviations: CHAM — : Children’s Hospital at Montefiore COVID-19 — : coronavirus disease In March 2020, Montefiore Health System in the Bronx, New York, received an influx of adults who were critically ill with coronavirus disease (COVID-19). The…
Safety in Pediatric Hospice and Palliative Care: A Qualitative Study
INTRODUCTION: Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified…
When Facing Hopeful and Hopeless Experiences: Using Snyder's Hope Theory to Understand Parents' Caregiving Experiences for Their Medically Complex Child
INTRODUCTION: An emerging subpopulation within pediatric chronic illness is children living with complex chronic conditions. Managing a child's complex chronic conditions can be emotionally taxing for parents. Many parents regard hope as a…
State Variation in Posthospital Home Nursing for Commercially Insured Medically Complex Children
BACKGROUND AND OBJECTIVES: Home nursing is essential for children with medical complexity (CMC), but provision varies substantially across states. Our objectives were to quantify state-to-state variability in distribution of posthospitalization home…
Bereavement care interventions for children under the age of 18 following the death of a sibling: a systematic review
BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into…
Movement disorders in inherited metabolic diseases in children
Movement disorders are one of the important neurological manifestations of inherited metabolic disorders. Important clues to the presence of an underlying inborn error of metabolism are early onset, presence of neuroregression or degeneration,…
Paediatric health care access in community health centres is associated with survival for critically ill children who undergo inter-facility transport: A province-wide observational study
BACKGROUND: Diverse settlement makes inter-facility transport of critically ill children a necessary part of regionalized health care. There are few studies of outcomes and health care services use of this growing population. METHODS: A retrospective…
Priorities for Nutrition Research in Pediatric Critical Care
BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be…
Serious Illness Conversations in Pediatrics: A Case Review
The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their…
Children's Palliative Care; the identified Learning Needs of Paediatricians
Aim To determine baseline learning needs of Paediatricians in Ireland when caring for children with palliative care needs. Methods A questionnaire based online survey was conducted. Results One hundred and fourteen paediatricians responded to the…