May 2021 List
Title
May 2021 List
Collection Items
Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic
Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective: Gaining understanding of the…
From self-compassion to compassionate action: reflecting on ending life of stillbirth care in nursing
Nurses' distress in response to the professional experience of the neonatal loss and stillbirth care is poorly addressed in nursing practice; therefore, the purpose of this study is to explore nurses' experiences of labour of a stillborn baby. A…
Implementing music therapy in a Norwegian neonatal intensive care unit
BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and…
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
BACKGROUND: The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models…
Faith-sensitive end of life care for children, young people and their families
This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some…
Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents' accounts in a palliative care setting: A qualitative study
BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if…
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is…
Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses
BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research…
Health of mothers of children with a life-limiting condition: A comparative cohort study
Objective: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. Method(s): Comparative national longitudinal cohort study using linked primary and…
Inborn Errors of Metabolism in Pediatric Palliative Care
BACKGROUND: In parallel with the increase in the number of children with life-limiting or threatening diseases, the need and right of pediatric palliative care also increases. In this study, it was aimed to examine the metabolic diseases, evaluate…
Transporting critically ill children
The centralization of paediatric critical care services in most developed countries has seen an increase in the need for critically unwell and traumatically injured children to be transported for definitive care. This, in combination with the rising…
Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency…
Recommendations for speech-language pathologists in paediatric palliative care teams (ReSP3CT): An international modified Delphi study
Purpose: There is emerging recognition within the literature that speech-language pathologists (SLPs) have a role in the provision of paediatric palliative care (PPC). SLPs, however, experience unique challenges when working with this vulnerable…
Paediatric euthanasia in Canada: New challenges for end of life care
Canadians are looking to expand their Medical Assistance in Dying (MAID) program to include mature minors. Yet, little evidence exists to support this expansion. The Council of Canadian Academies released a report in December 2018 indicating that…
Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices
BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal…
We're performing improvisational jazz: Interprofessional pediatric palliative care fellowship prepares trainees for team-based collaborative practice
CONTEXT: Interprofessional education (IPE) prepares clinicians for collaborative practice, yet little is known about the effectiveness of postgraduate IPE. OBJECTIVE(S): This is the first study to describe educational outcomes of an interprofessional…
Paediatric end-of-life care - symptoms and problems: parent assessment
OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18…
End-of-life issues in the paediatric intensive care unit
Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the…
Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress
To gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We…
A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to…
Can you tell me why you made that choice?: A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant
BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the…
Parents' perspectives on conflict in paediatric healthcare: A scoping review
Background: Conflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore…
Long-Term Daily Administration of Aprepitant for the Management of Intractable Nausea and Vomiting in Children With Life-Limiting Conditions: A Case Series
Background: Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care…
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room…
Use of subcutaneous fluids in palliative care with children: a case study
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible.…
Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care
BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency…
Being a Parent: Findings from a Grounded Theory of Memory-Making in Neonatal End-Of-Life Care
PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…
Outcomes following perinatal palliative care consultation: a retrospective review
Objective: To inform clinical practice by describing a model of perinatal palliative care delivery within a fully staffed fetal health center (FHC) inside a freestanding children's hospital. Study design: The team conducted a retrospective chart…
Children's palliative care: examination of a nursing rotation programme
An 8-month rotation programme was implemented for five nurses employed in two kinds of children's palliative care environments: hospital wards and hospices. This study reports the views of the nurses completing the rotation. The research drew on…