Browse Items · Pediatric Palliative Care Library

Denial of impending death: a discourse analysis of the palliative care literature

Terminally ill patients and their families are often referred to as being "in denial" of impending death. This study uses the qualitative method of discourse analysis to investigate the usage of the term "denial" in the contemporary hospice and…

Tags: 2004, Attitude To Death, Backlog, Canada, Denial (Psychology), Humans, Journal Article, Palliative Care, Social science & medicine, Zimmermann C

Comparing parent loss with sibling loss

The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's…

Stress, social support, and sense of coherence

In the Salutogenic Model, Aaron Antonovsky suggested that a sense of coherence (SOC) is the key determinant in the maintenance of health. He theorized that individuals with a strong SOC have the ability to (a) define life events as less stressful…

National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care

Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…

Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer

Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe…

Pediatric patients receiving palliative care in Canada: results of a multicenter review

OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN:…

Adverse effects of medical cannabinoids: a systematic review

BACKGROUND: The therapeutic use of cannabis and cannabis-based medicines raises safety concerns for patients, clinicians, policy-makers, insurers, researchers and regulators. Although the efficacy of cannabinoids is being increasingly demonstrated in…

Tags: 2008, Adverse Drug Reaction Reporting Systems, Backlog, Canada, Canadian Medical Association Journal, Cannabinoids/adverse effects, Cannabinoids/therapeutic use, Collet J, Drug Prescriptions, Humans, Journal Article, Pain/drug Therapy, Shapiro S, Wang T, Ware M

Patient safety in anesthesia--continuing challenges and opportunities

2003

Tags: 2003, Analgesia, Anesthesia/adverse effects, Backlog, Canada, Canadian Journal Of Anaesthesia, Humans, Journal Article, Medical Errors/prevention & control, Patient-Controlled/adverse effects, Safety, Wade JG

Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.

OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…

"It Could Have Been Me": An Interpretive Phenomenological Analysis of Health Care Providers' Experiences Caring for Adolescents and Young Adults with Terminal Cancer

Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the…

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…

Research priorities in pediatric palliative care: a delphi study

Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Tags: 2008, Cadell S, Canada, Child, Davies B, Derman S, Health Planning, Health Services Needs And Demand, Hospices/organization & administration, Humans, International Journal of Palliative Nursing, Palliative Care, Pediatrics, Pilot Projects, Siden H, Steele R, Straatman L

Health-related quality of life among child and adolescent survivors of childhood cancer.

PURPOSE: The main objective was to compare parent-reported health-related quality of life (HRQL) of child and adolescent survivors of childhood cancer to that of controls who had no history of cancer. METHODS: We assessed HRQL of 800 child and…

Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational…

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory

BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the…

A Report On Location of Death in Paediatric Palliative Care Between Home, Hospice and Hospital

This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…

End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.

This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions…

Gender differences in violence exposure among university students attending campus health clinics in the United States and Canada

PURPOSE: To explore gender differences in prevalence, types, perpetrators, and correlates of recent violence experiences among university students at campus clinics at five universities in the Midwest and Pacific Northwest U.S. and Canada. METHODS:…

Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)

Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease…

Tags: 2019, Adolescent, Adult, Age, Aged, America, Amin R, amyotrophic lateral sclerosis, amyotrophic lateral sclerosis/ep [Epidemiology], Animals, APEC countries, Article, August 2019 List, Bai Y, Canada, Child, childhood disease/ep [Epidemiology], childhood diseases, Children, Chordata, Cohort Analysis, Cohort Studies, Commonwealth of Nations, Controlled Study, Data Base, death rate, Developed Countries, Disease Course, disease prevalence, Disease Progression, Eukaryotes, Female, Gershon A, Goldstein R, Health Care, health Insurance, Hominidae, Homo, Human, Human Diseases, Incidence, Infant, International Classification of Diseases, Katz S, Leasa D, Major Clinical Study, Male, Mammals, Man, McKim D, Middle Aged, Mortality, mortality rates, muscles, neuromuscular disease/ep [Epidemiology], Neuromuscular Diseases, Neuromuscular Disorders, Nonoyama M, North America, OECD Countries, Ontario, Palliative Care, Palliative Therapy, planning, PLoS One, Population Research, Preschool Child, Prevalence, Primates, Retrospective Studies, Retrospective Study, Rose L, School Child, sclerosis, spinal muscular atrophy/ep [Epidemiology], Spine, Survival, Tandon A, trend study, Trends, Vertebrates, Young Adult

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

Living in the in-between: families caring for a child with a progressive neurodegenerative illness

Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home.…

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.…

Fatigue and depression in children with demyelinating disorders

Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the…

Breast cancer patients' attitudes about rationing postlumpectomy radiation therapy: applicability of trade-off methods to policy-making

PURPOSE: Along with evidence, clinical policies must take patients' values into account. Particularly where evidence is limited and where assumptions of utility-maximizing behavior may not be valid, new methods such as trade-off techniques (TOTs),…

An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings

Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative…

Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers

Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada,…

Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)

Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are…

Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study

OBJECTIVE: To develop a conceptual model of family caregiver beliefs and behavior related to nutritional care of the terminally ill by examining the perspectives of family members, patients, and health care providers. DESIGN: Qualitative study using…

Pediatric palliative care in Canada

Pediatric palliative care (PPC) emerged during the late 20th century in Canada. It has steadily expanded and there are now programs in every province. Programs adhere to recognized standards of practice at both federal and provincial levels. PPC is…

Tags: 2023, Article, Canada, Child, Current Problems in Pediatric and Adolescent Health Care, February List 2024, government, Human, Marquis MA, Palliative Therapy, Payot A

A review of the use of methadone for the treatment of chronic noncancer pain

Methadone, although having been available for approximately half a century, is now receiving increasing attention in the management of chronic pain. This is due to recent research showing that methadone exhibits at least three different mechanisms of…

Tags: 2005, Analgesics, Backlog, Canada, Chronic Disease, Drug, Humans, Journal Article, Legislation, Lynch ME, Methadone, Methadone/adverse effects/chemistry/pharmacokinetics/pharmacology/therapeutic use, Non-U.S. Gov't, Opioid/adverse effects/chemistry/pharmacokinetics/pharmacology/therapeutic use, Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur, Pain/drug Therapy, Research Support

End- Of- Life Decisions And Minors: Do Minors Have The Right To Refuse Life Preserving Medical Treatment? A Comparative Study

The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that…

Tags: 2009, Adolescent, Canada, Child, Decision Making, Europe, Humans, Informed Consent/lj [legislation & Jurisprudence], Lemmens C, May 2017 List, Medicine & Law, Minors/lj [legislation & Jurisprudence], Terminally Ill/lj [legislation & Jurisprudence], Treatment Refusal, Treatment Refusal/lj [legislation & Jurisprudence], United States

The meaning of dying and death for children, their carers, and families: a scoping review

Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. Methods: A scoping review of…

Tags: 2023, Amodu O, BMC Palliative Care, Canada, Caregiver, Child, February List 2024, Groenenboom K, Human, Lamb CM, palliative nursing, Palliative Therapy, Ramer K, Terminal Care

Impact of caring for a child with cancer on parents' health-related quality of life

PURPOSE: To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND…

End-of-life population study methods

2001

Tags: 2001, Backlog, Boyd CJ, Burge FI, Canada, Canadian Journal Of Public Health, Community Health Planning/statistics & numerical data, Human, Johnston GM, Journal Article, MacIntyre M, Neoplasms/epidemiology, Nova Scotia/epidemiology, Palliative Care/organization & Administration, Population Surveillance/methods, Registries, Terminal Care/organization & Administration, Vital Statistics

Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects

OBJECTIVES: More than 85% of children born today with chronic medical conditions will live to adulthood, and many should transfer from pediatric to adult health care. The numbers of adults with congenital heart defects (CHDs) are increasing rapidly.…

An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years

BACKGROUND: The lifespan of patients with cystic fibrosis (CF) is increasing significantly. The objective of this international pilot study was to study the characteristics of these long-term survivors. METHODS: Four centres with large CF clinics…

Survey on Neonatal End-of-Life Comfort Care Guidelines Across America

Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…

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