Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 4151–4175 of 4332 publications
Specialized Rehabilitation Programs for Children and Adolescents with Severe Disabling Chronic Pain: Indications, Treatment and Outcomes
Children and adolescents with highly disabling chronic pain of high intensity and frequency are admitted to specialized pain rehabilitation programs. Some barriers to obtaining this specialized care include a lack of availability of treatment centers, a percei…
Spirituality among parents of children with cancer at AUBMC
Purpose/Objective: Aims of the Project: To understand what spirituality means for parents of children with cancer admitted to the Children's Cancer Center of Lebanon (CCCL). Background/Rationale: Background: Childhood cancer affects the life of the whole famil…
Spiritual Needs of Families With Bereavement and Loss of an Infant in the Neonatal Intensive Care Unit: A Qualitative Study
CONTEXT: The hospital is a place full of distress and questions about the meaning of life. The death of a child can cause a spiritual struggle and crisis. Therefore, it is necessary for health care providers in the neonatal intensive care unit (NICU) to assess…
Staff Efficiency Trends Among Pediatric Hospices, 2002-2011
This study provided the first examination of staff efficiency trends among pediatric hospices. Although pediatric staff efficiency demonstrated large variability from 2002 to 2011, the general trend in efficiency from 2003 to 2010. The decline in efficiency me…
Storyboarding as an aid to learning about death in children's nursing
The sudden or anticipated death of a child is one of the most challenging and unique experiences that children's nursing students will encounter in practice. There is evidence to suggest that the effect this can have on a practitioner can affect quality of car…
Storyboarding used as an aid to explore grief
Yvonne Dexter, writing in Nursing Children and Young People, discusses the use of storyboarding and its use as a reflective practice aid. As children's nurses are among the child health professionals most directly affected by childhood death, storyboarding can…
Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial
OBJECTIVES: Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (s…
Succession planning in children's palliative care services
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave. Succession plan…
Supporting the Grieving Child and Family
The death of someone close to a child often has a profound and lifelong effect on the child and results in a range of both short- and long-term reactions. Pediatricians, within a patient-centered medical home, are in an excellent position to provide anticipato…
Survival Among Infants Born at 22 or 23 Weeks' Gestation Following Active Prenatal and Postnatal Care
Importance: Rates of survival for infants born at the border of viability are still low and vary considerably among neonatal intensive care units. Objective: To determine whether higher survival rates and better short-term outcomes for infants born at 22 or 23…
Symptoms and management of pediatric patients with incurable brain tumors in palliative home care
INTRODUCTION: Brain tumors have the highest disease-related mortality rate of all pediatric cancers. The goal of this study was to determine whether all children with incurable brain tumors cared for by a pediatric palliative care team in a home setting suffer…
Teaching pediatric intensive care physicians communication skills: The enduring effects
Objectives * Determine feasibility of a communication skills training (CST) to prepare pediatric intensivists for communicating bad news and assessing goals of care in the pediatric intensive care unit (PICU). * Describe the impact of CST on intensivist skill …
Teaching the Art of Difficult Family Conversations
CONTEXT: Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients are a vital component of medical education. However, traditional teac…
Tensions at the end of life in pediatrics: Actors, causes, coping strategies and remedies
Background: The majority of children die in pediatric hospitals after a decision to withhold or withdraw life sustaining interventions. Tensions and conflicts at the end of life (EOL) are not rare in pediatric hospitals. Objective: To investigate how frequent …
Termination of pregnancy without feticide: A French national survey. [French]
Purpose. - Termination of pregnancy without feticide (TOPWF) is poorly known in France and far less practiced than palliative care after term birth of a child having a lethal pathology. Few teams consider it and its practice remains confidential. This survey t…
The caregivers' psychosocial and economic effects of caring for terminally ill patients: The case of hospice Africa Uganda
Background: Giving care to a patient at the end of life can be a challenging and confronting experience. The responsibilities of care giving may include executing complex physical and mental tasks, financial planning, patient care decision making, emotional su…
The Day Two Talk: Early Integration of Palliative Care Principles in Pediatric Oncology
With the publication in 2000 of “Symptoms and Suffering at the End of Life in Children With Cancer” by Wolfe et al, the dire need for integration of pediatric palliative care into the practice of pediatric oncology was firmly established. Since 2000, the numb…
The development and evaluation of a holistic needs assessment within children's palliative care
Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well recognised, as…
"the doctor is in": The role of child psychiatrists in pediatric palliative care
Objectives * Define a collaborative model between pediatric palliative care teams and child psychiatry. * Demonstrate knowledge of psychotropic medication use in children with advanced illness. * Recognize when the involvement of child psychiatry is warranted …
The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries
Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as chi…
The end-of-life experience of patients with cystic fibrosis and the role of pediatric palliative care consultation
Objectives * Describe patterns of medical care provided to patients with cystic fibrosis (CF) around the end of life. * Explore the roles a pediatric palliative care consultation service serves for patients with CF who ultimately die from their disease. Origin…
The end-of-life spiritual care service package in the Newborn intensive care unit(S)
Objectives: Despite current advances in child care scientific models, most children are at risk of dying in the neonatal period or immediately before delivery. Parents experience deep pain and suffering because of the death of their infant. Several studies men…
The experience of parents caring for children with incurable cancer at the end-of-life
Background/Objectives: The purpose of this study was to explore the lived experience of parents caring for children with incurable cancer at the end-of-life. Design/Methods: This phenomenological study was designed to understand the lived experiences of parent…
The experiences of families living with the anticipatory loss of a school-age child with spinal muscular atrophy - the parents' perspectives
AIMS AND OBJECTIVES: To probe into parents' anticipatory loss of school-age children with Type I or II spinal muscular atrophy. BACKGROUND: Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy or an inf…