Browse Items · Pediatric Palliative Care Library

Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study

Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often…

Tags: 2023, Article, Brannon M, breast feeding, breast pump, Brito S, Cerebral Palsy, Chahin N, Children, clinical assessment, Cognitive Defect, Cohort Analysis, Comparative Study, Congenital Heart Disease, Controlled Study, do not resuscitate order, Donor Milk, extracorporeal oxygenation, Family Centered Care, February List 2024, Female, Fox J, gastrointestinal disease, Genetic Disorder, Gestational Age, health disparity, Hendricks-Munoz KD, Hospital Admission, hospital discharge, Human, hypoxic ischemic encephalopathy, incurable disease, Infant, kidney disease, lactation, learning disorder, Length Of Stay, Life limiting condition, Lung Disease, Major Clinical Study, Male, McCarthy K, Mohammed T, Mortality, Neonatal Intensive Care Unit, Neurologic Disease, Nubayaat L, Nunlist S, nutritional deficiency, Retrospective Study, Seizure, sensory dysfunction, Williams A, Xu J

Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses

OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses…

"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'…

The Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters

It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a…

Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses

Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits…

Inter-Rater Reliability of the Phase of Illness Tool in Pediatric Palliative Care

BACKGROUND: Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate…

Bereaved parents' experiences of research participation

Background As understandings of the impacts of end-of-life experiences on parents’ grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining…

Social Media Consequences of Pediatric Death

Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information…

Tags: 2018, Adolescent, Article, Bereavement, Buxton DC, Caregiver, Child, Child And Adolescent Psychiatric Clinics Of North America, Death, Grief, Human, knee prosthesis, Pediatrics, September 2018 List, social media, Vest TR, videorecording

The most painful estrangement: Death at birth

More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense,…

Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss…

A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers

Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…

Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"

OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective…

Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?

Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients &…

Pediatric palliative care in Sweden

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative…

Tags: 2023, Adolescent, Article, Castor C, Child, Current Problems in Pediatric and Adolescent Health Care, Decision Making, Diagnosis, February List 2024, health care facility, Human, Infant, Iveus K, Kreicbergs U, Male, Palliative Therapy, Sweden, Therapy

Facilitators and barriers perceptions to early referral to pediatric palliative care perceived

Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…

Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study

Aim: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care. Background: Concerns have arisen regarding the…

Increasing Trend and Effects of Pediatric Palliative Care on Children with Non-Cancer Diagnoses

Objectives Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. Methods This retrospective cohort study used the…

Palliative care utilization in hospitalized children with cancer

Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its…

In every detail: spiritual care in pediatric palliative care perceived by healthcare providers

Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…

Costs of Care and Location of Death in Community-Based Pediatric Palliative Care

Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of…

Tags: 2019, Adolescent, Adult, Article, cardiovascular disease/dm [Disease Management], Child, Child Death, Child Health Care, child health insurance, childhood cancer/dm [Disease Management], childhood disease/dm [Disease Management], Chirico J, Cohort Analysis, community care, community-based, congenital disorder/dm [Disease Management], Cost, Cromwell P, Dawson C, Donnelly J P, Dying, family income, Female, groups by age, Gupton A, Health Care Cost, health maintenance organization, Home Care, Human, Journal of Palliative Medicine, July 2019 List, Korones D N, Major Clinical Study, Male, Medicaid, Miller M, neuromuscular disease/dm [Disease Management], newborn disease/dm [Disease Management], Palliative Therapy, Pediatric Palliative Care, pediatric patient, Prematurity/dm [disease Management], Race Difference, Retrospective Study

Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions

This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected…

A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative needs

BACKGROUND:: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM:: To explore the process…

Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific

Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review

Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to…

Making Meaning After the Death of a Child

Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control.…

Facilitating Milk Donation in the Context of Perinatal Palliative Care

The option to donate milk within the context of perinatal palliative care allows pregnant women to be involved in medical decision making before birth. In this article we examine how a perinatal bereavement program engages women and families in the…

Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family

PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed…

A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK

This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising…

Whispers in the waiting room

Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will…

Procedural burden experienced by children with cancer during their terminal hospital admission

Background: Children with chronic conditions, including cancer, have been shown to have high-intensity end-of-life care. We assessed the frequency and timing of invasive procedures that children with cancer undergo during their terminal hospital…

Tags: 2019, acute respiratory failure, Adolescent, amputation, Article, Artificial Ventilation, bone marrow biopsy, Bone Marrow Transplantation, brain ventricle peritoneum shunt, Cancer Palliative Therapy, Central Nervous System Tumor, central venous catheter, Child, Childhood Cancer, Cohort Analysis, Corkum K S, craniotomy, debridement, Disease Burden, excision, fasciotomy, Female, Heart Arrest, heart surgery, Hebal F N, Hospital Admission, Human, intestine resection, invasive procedure, Journal Of Pediatric Surgery, laparoscopy, Lautz T B, Length Of Stay, Leukemia, lobectomy, Major Clinical Study, Male, myringotomy, Oncology 2019 List, Ostomy, Pain, Priority Journal, public health insurance, Retrospective Study, Rowell E E, segmentectomy, Sepsis, spine fusion, Stem Cell Transplantation, Terminal Care, thoracoscopy, Thoracotomy, vascular access, ventriculostomy

Palliative Care in the Pediatric Emergency Department: Findings From a Qualitative Study

Study objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the…

Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study

BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…

Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning with Competencies

Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics…

Defining the Boundaries of Palliative Care in Pediatric Oncology

Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.

Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers

Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…

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