Browse Items · Pediatric Palliative Care Library

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…

Cardiac transplantation: a temporary solution for Friedreich's ataxia-induced dilated cardiomyopathy

Friedreich's ataxia is an autosomal recessive neurodegenerative disease. We report the case of a 34-year-old man with Friedreich's ataxia and dilated cardiomyopathy who underwent successful cardiac transplantation. To our knowledge, this is the first…

Tags: 2004, Adult, Backlog, Cardiomyopathy, Chandavimol M, Dilated/etiology/surgery, Friedreich Ataxia/complications, Heart transplantation, Humans, Journal Article, Male, Sedlak TL, Straatman L, The Journal Of Heart And Lung Transplantation : The Official Publication Of The International Society For Heart Transplantation, Time Factors

Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies

This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…

Bisphosphonate treatment of bone disease

In 1997 a review article on bisphosphonates in this journal identified 24 published articles relating to children at that time. Since then there has been a considerable increase in their use in clinical paediatric practice and research with there…

Practice patterns in pediatric consultation-liaison psychiatry: a national survey

The purpose of this survey was to describe the current status of pediatric consultation-liaison (C-L) services in the United States. A total of 144 pediatric C-L programs were surveyed, with a response rate of 33%. Financial and staffing constraints…

Non-invasive ventilation and palliation: experience in a district general hospital and a review

Non-invasive ventilation (NIV) is increasingly being used in hospitals to treat respiratory failure. The use of NIV with palliative intent in a district general hospital is described and ten illustrative cases where NIV was used in an attempt to…

Characteristics of a pediatric hospice palliative care program over 15 years.

OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This…

Physician-older patient communication at the end of life.

Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews…

Lymphocytes upregulate signal sequence-encoding proopiomelanocortin mRNA and beta-endorphin during painful inflammation in vivo

Proopiomelanocortin (POMC)-derived beta-endorphin1-31 (END) released from immune cells inhibits inflammatory pain. We examined the expression of END and POMC mRNA encoding the signal sequence required for entry of the nascent polypeptide into the…

Intravenous fentanyl for cancer pain: a "fast titration" protocol for the emergency room

Patients with cancer sometimes are admitted to the emergency room due to severe pain. Despite the fact that morphine's hydrophilicity can delay its peak effects after intravenous administration up to 30 minutes, it is still the most commonly used…

Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors

OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the…

Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study

We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y…

Life-Sustaining Treatment Status at the Time of Death in a Japanese Pediatric Intensive Care Unit

BACKGROUND: Substantial variability exists among countries regarding the modes of death in pediatric intensive care units (PICUs). However, there is limited information on end-of-life care in Japanese PICUs. Thus, this study aimed to elucidate the…

Caregivers' perceptions following gastrostomy in severely disabled children with feeding problems

Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…

Early palliative care for patients with metastatic non-small-cell lung cancer

BACKGROUND: Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported…

The multiple meanings of long-term gastrostomy in children with severe disability

Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents…

Improving estimates of caregiver time cost and family impact associated with birth defects

BACKGROUND: Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However,…

Tags: 2001, Abnormalities/epidemiology/psychology, Backlog, Caregivers/psychology, Cost Of Illness, Family Health, Hobbs CA, Humans, ICU Decision Making, Journal Article, Models, Parents, Quality-Adjusted Life Years, Robbins JM, Social Support, statistical, Teratology, Tilford JM, Time Factors

Tolerance, withdrawal, and physical dependency after long-term sedation and analgesia of children in the pediatric intensive care unit

OBJECTIVE: To describe the consequences of the prolonged administration of sedative and analgesic agents to the pediatric intensive care unit (PICU) patient. The problems to be investigated include tolerance, physical dependency, and withdrawal. DATA…

Tags: 2000, Analgesics/adverse effects, Backlog, Child, Critical Care Medicine, Drug Tolerance, Human, Hypnotics and Sedatives/adverse effects, Intensive Care Units, Journal Article, Pediatric, Risk Factors, Substance Withdrawal Syndrome/diagnosis/drug therapy/etiology, Time Factors, Tobias JD

Late consequences of chronic pediatric illness

There are many challenges in coping with and adapting to life with a chronic disease, and increased survival cannot be assumed to be associated with increased quality of life. A recent systematic review shows there is wide variation in outcomes…

Tags: 2007, Adolescent, Arthritis, Backlog, Child, Chronic Disease/psychology, Congenital/diagnosis/epidemiology/psychology, Cystic Fibrosis/diagnosis/epidemiology/psychology, Diagnosis, Differential, Heart Defects, Humans, Journal Article, Juvenile Rheumatoid/diagnosis/epidemiology/psychology, Mental Disorders/diagnosis/epidemiology/etiology, Pao M, The Psychiatric Clinics Of North America, Time Factors, Turkel S

Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children

BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days…

Paediatric fever management: continuing education for clinical nurses

PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from…

Sublingual absorption of selected opioid analgesics

Ongoing interest in the improvement of pain management with opioid analgesics had led to the investigation of sublingual opioid absorption. The present report determined the percent absorption of selected opioid analgesics from the oral cavity of…

Couples at risk following the death of their child: predictors of grief versus depression

This longitudinal study examined the relative impact of major variables for predicting adjustment (in terms of both grief and depression) among bereaved parents following the death of their child. Couples (N = 219) participated 6, 13, and 20 months…

What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback

BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…

Tags: 2015, BMC Palliative Care, Communication, Decision Making, Health Knowledge Attitudes Practice, Hope, Humans, Intensive Care Units Pediatric/organization & Administration, July 2017 List, Needs Assessment, Parents/education, Parents/psychology, Sullivan J, Terminal Care/methods, Terminal Care/psychology, Time Factors, Wilkinson D, Xafis V

Association of Mortality With the Death of a Sibling in Childhood.

Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…

A descriptive study of children dying in the pediatric intensive care unit after withdrawal of life-sustaining treatment

OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who…

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