March 2018 List
Title
March 2018 List
Collection Items
Nurturing Futility in the NICU: The Dutch Perspective
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a…
Palliative Care: Opportunities for Nursing
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a…
The impact of stillbirth on bereaved parents: A qualitative study
PURPOSE: To explore the lived experiences and personal impact of stillbirth on bereaved parents. METHODS: Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies…
Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life…
Using entrustable professional activities to assess graduation readiness in pediatric critical care
Learning Objectives: Assessing competence in pediatric critical care medicine (PCCM) training is challenging, and Entrustable Professional Activities (EPAs) were recently introduced to enhance the assessment process. There are 7 EPAs that define the…
Reframing Fantasy: Toward a Common Language of Hope, Dying, and Death in Long-Shot Pediatrics
2018-01
PARENTS 2 study protocol: pilot of Parents' Active Role and ENgagement in the review of Their Stillbirth/perinatal death
BACKGROUND: The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence…
A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses
PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI).…
The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU
OBJECTIVES: Support from healthcare professionals in a PICU is highly valuable for parents of dying children. The way they care for the patients and their families affects the parents' initial mourning process. This study explores what interaction…
Pathfinders: Promoting healthy adjustment in bereaved children and families
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible,…
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle…
Reflections on the development of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness
While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes…
Fragile lives with fragile rights: Justice for babies born at the limit of viability
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and…
Early Parental Loss and Intimate Relationships in Adulthood: A Nationwide Study
Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and…
Withdrawal of life-sustaining therapy
PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively.…
It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and…
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…
The enactment stage of end-of-life decision-making for children
OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is,…
The Pepi-Pod study: Overnight video, oximetry and thermal environment while using an in-bed sleep device for sudden unexpected death in infancy prevention
AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous…
Total Pain' in Children with Severe Neurological Impairment
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly…
A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on…
From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail
Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to…
Neonatal mortality and associated factors in newborn infants admitted to a Neonatal Care Unit
INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal…
Opioid treatment for mixed pain in pediatric patients assisted by the Palliative Care team. Five years of experience
Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is…
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and…
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH…
Paediatric palliative care in Denmark should be strengthened
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children…
What do transplant physicians think about palliative care? A national survey study
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT).…
Neurological palliative care in children
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of…
Enhancing resilience in hospitalized children and adolescents
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty…
Posttraumatic growth in hospitalized children and adolescents
Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth…
Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness,…
Prevalence and management of dystonia in a paediatric palliative care cohort
Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into…
Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from…
Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed…