Browse Items · Pediatric Palliative Care Library

Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer

Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for…

Improving the regulation of medical cannabis in Canada to better serve pediatric patients

Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware…

Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period

INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an…

Tags: 2021, Comfort Care, Daboval T, Expert Opinion on Pharmacotherapy, Ferretti E, Lauzon L, Life-limiting Condition, MacLean G, medications, October 2021 List, Palliative Care, Perinatal Palliative Care, Reuvers E, Symptom Management, Vadeboncoeur C, Veldhuijzen van Zanten S

Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review

Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…

Tags: 2021, Adolescent, anxiety, Autism spectrum disorder, behaviour, Cannabis, Child, Children, Communication, Fletcher S, Huh L, hyperactivity, Ip A, Oberlander TF, October 2021 List, Pawliuk C, Rassekh SR, Siden H

Children and adolescents with hematologic cancers deserve better end-of-life care

Children and adolescents with hematologic malignancies consistently experience higher rates of aggressive care at the end of life. Clinicians and researchers must now turn their attention to reducing this disparity.

Tags: 2021, Administrative data, Adolescents, Cancer, Cancer., Children, End Of Life, Gupta S, hematologic, high intensity, Palliative Care, Rapoport A, September 2021 List

The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin

Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect…

Tags: 2021, Irritability, Journal of Pain and Symptom Management, Orkin J, Pain, Parmar A, Pediatrics, PIUO, Qualitative Inquiry, Rizakos S, September 2021 List, severe neurological impairment, Siden H

Self-reported experiences of siblings of children with life-threatening conditions: A scoping review

Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research…

Tags: 2021, August 2021 List, Children, Critical Illness, Journal Of Child Health Care, Scoping review, Sibling(s), Stremler R, Tay J, Widger K

Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their…

Oxford Textbook of Palliative Care for Children

The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at…

Tags: 2021, August 2021 List, Children, Goldman A, Hain R, Meiring M, Oxford University Press, Pain Management, Palliative Care, Pediatrics, Rapoport A

Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study

BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study…

Tags: 2021, Cmaj Open, Epilepsy, Family Attitudes, Gibbard M, July 2021 List, medical cannabis, Medicinal Cannabis, Mount D, Oncology, Pain Management, Parent Experiences, Pediatric Palliative Care, Rassekh SR, Siden H

Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison

BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to…

Tags: 2020, Adolescent, BMC Palliative Care, Continuity Of Patient Care, Cullen-Dean G, June 2021 List, Kerr H, Life-limiting Conditions, O'Halloran P, Price J, Widger K, Young Adult

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether…

Tags: 2021, April 2021 List, BMC Palliative Care, Boyden JY, Deatrick JA, Ersek M, Experience with care, Feudtner C, Home-based Care, instrument development, LaRagione G, Lord B, Pediatric Hospice Care, Pediatric Palliative Care, Widger K

Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering…

Tags: 2020, continuing professional development, distance education, February 2021 List, Journal of Palliative Medicine, Lalloo C, Osei-Twum J, Pediatric Palliative Care, Project ECHO, Rapoport A, Stinson J, Vadeboncoeur C, Veldhuijzen van Zanten S, Weingarten K, Widger K

Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family…

Tags: 2020, Child, Family Caregivers, Health Services Insights, Informal caregivers, January 2021 List, Needs Assessment, Pediatric, Self Report, Stochitoiu IA, Surveys And Questionnaires, Vadeboncoeur C

Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences

Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a…

Tags: 2020, Aldridge CE, December 2020 List, Decisional regret, Elliott AM, Genetic Counseling, genome-wide sequencing, Journal of Genetic Counseling, lived experience, Neonates, Osiovich H, Siden H

A novel classification system for research reporting in rare and progressive genetic conditions

Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories.…

Tags: 2019, Andrews G, Beumer D, Charting the territory, Developmental Medicine & Child Neurology, Goez Helly, May 2019 List, Mostafavi S, Pawliuk C, Siden H, Steele R, van Karnebeek CDM

The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital

This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and…

Tags: 2019, Anthony S, Beaune L, Brownstone D, Death studies, Greenblatt A, Hubley P, May 2019 List, Muskat B, Newman C, Rapoport A

Impact of specialized pediatric palliative care programs on communication and decision-making

OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO,…

Tags: 2019, April 2019 List, Children, Communication, Counseling, Decision-making, Medeiros C, Palliative Care, Patient Education & Counseling, Pediatrics, Specialized pediatric palliative care program, Streuli JC, Trenholm M, Widger K, Zuniga-Villanueva G

Perceptions of discrimination among Mexican American families of seriously ill children

This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided…

Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review

BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they…

Tags: 2018, February 2019 List, Journal of Palliative Medicine, Medeiros C, Palliative Care, Pediatrics, Quality Indicators, review literature, Streuli J C, Trenholm M, Widger K, Zuniga-Villanueva G

Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice

Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over…

Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry

Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…

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…

Medical Assistance in Dying at a paediatric hospital

This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to…

Tags: 2018, DeMichelis C, Journal of Medical Ethics, October 2018 List, Rapoport A, September 2018 List, Zlotnik SR

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…

Tags: 2018, Bouffet E, Brennenstuhl S, Friedrichsdorf S, Greenberg M, Husain A, Journal of Palliative Medicine, Leyden M, Liben S, October 2018 List, Pole JD, Rapoport A, September 2018 List, Siden H, Whitlock JA, Widger K, Wolfe J

Grief and growth in bereaved siblings: Interactions between different sources of social support

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support…

Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease

The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program…

Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care

PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…

Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This…

Tags: 2018, Children, Faerber J, Feinstein J, Feudtner C, Gerhardt C, May 2018 List, Nelson K, Rosenberg A, Widger K

End-of-life care of children with diffuse intrinsic pontine glioma

The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative…

Tags: 2018, April 2018 List, Bartels U, Bouffet E, Child, Diffuse Intrinsic Pontine Glioma (DIPG), End-of-life Care, Glioma, Hasan F, Journal of Neuro-Oncology, Only Child, Palliative Care, Pediatric Oncology, Rapoport A, Terminal Care, Weingarten K

Improving Quality of life in Hospitalized Children

There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric…

Tags: 2014, Backlog, Children, Distress, Hospital, Journal Article, Pediatric Clinics of North America, Quality Of Life, Rapoport A, Weingarten K

Poverty and pediatric palliative care: what can we do?

It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the…

Tags: 2014, Backlog, Beaune L, Chapman LA, Child Poverty Tool and Resource Guide, content validity, Ford-Jones L, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Leavens A, life limiting illness, Morinis J, Muskat B, Pediatric Palliative Care, Qualitative Methods, Rapoport A, social determinants of health, Zlotnik SR

Impact of research participation on parents of seriously ill children

Abstract Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of…

Tags: 2014, Andrews GS, Backlog, Cadell S, Caregivers, Feichtinger L, Journal Article, Journal of Palliative Medicine, research participation, Siden H, Smit Quosai T, Steele R

Using Colors to Assess Pain in Toddlers: Validation of "The Rainbow Pain Scale"-A Proof-of-Principle Study

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…

Tags: 2014, Backlog, Giaschi D, Holsti L, Journal Article, Journal Of Pediatric Oncology Nursing, Mahon P, Siden H, Strahlendorf C, Turnham L

Mortality Trends for Pediatric Life-Threatening Conditions

Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population…

Tags: 2014, Backlog, Chavoshi N, Hospice, Illness, Journal Article, Life-threatening Conditions, Miller T, Mortality, Siden H, The American Journal of Hospice & Palliative Care

Excluding parental grief: A critical discourse analysis of bereavement accommodation in Canadian labour standards

BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect…

Tags: 2014, Backlog, Cadell S, Journal Article, Kennedy K, Macdonald ME, Mitchell LM, Moll S, Pineda C, Stephenson PH, Work (reading, Mass.)

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

Tags: 2014, Andrews GS, Archives of Disease in Childhood, Backlog, Cadell S, Charting the territory, Davies B, Feichtinger L, Genetics, Journal Article, Metabolic, Neurodisability, PEDI Study, Siden H, Singh M, Steele R

Physician variability in treating pain and irritability of unknown origin in children with severe neurological impairment

BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain.…

Tags: 2013, Article #6, Backlog, Carleton BC, Journal Article, Oberlander T, Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur, Siden H

Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care

Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early…

Tags: 2013, Backlog, Browne G, Cook KA, Jack S, Journal Article, Nursing Research And Practice, Siden H, Thabane L

Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer

Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for…

Tags: 2013, ascites, Backlog, catheters, Connolly BL, den Hollander BS, Grant RM, indwelling, Journal Article, malignant, Parra D, Pediatric Blood & Cancer, Pediatric Oncology, pleural effusion, Rapoport A, Sung L, Temple MJ, Zwaan Cm

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