Browse Items · Pediatric Palliative Care Library

Exploring what motivates parents of children living with medical complexity to participate in research studies: An Interpretive Phenomenology study (Poster)

Motivations Study Poster- CHILD-BRIGHT VS2022.pdf

Tags: 2022, Cook K, Hermansen AM, Kim L, Motivations Study, Parent Participation, Siden H

Measuring Pediatric Palliative Care Quality: Challenges and Opportunities

Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their…

Tags: 2023, Ananth P, April List 2023, Bogetz JF, Boyden JY, Johnston EE, Journal of Pain and Symptom Management, McNeil MJ, Palliative Care, Patneaude A, Pediatric Palliative Care, Quality Improvement, quality measurement, Quality Of Care, Rosenberg AR, Thienprayoon R, Widger KA, Williams CSP

The Impact of a Diagnosis among Parents of Children with Severe, Progressive, Life-Limiting Diseases (Poster)

Final Draft Veronica Poster Jul20_18.pdf

Background: Children affected by severe, progressive life-limiting diseases experience a variety of symptoms and disease trajectories that are not well understood or described. Many of these children do not have a specific medical diagnosis, but are…

Tags: Charting the territory, Genetic Testing, Qualitative

Optimising the process for conducting scoping reviews

Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be…

Tags: 2021, BMJ Evidence-Based Medicine, Brown HL, Dewan T, Evidence-based Medicine, Grégoire MC, Hermansen AM, Humans, information science, Pawliuk C, Publications, Q3 Scoping Review, Research Design, Siden H, Steele R, Widger K

Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability

BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition,…

Efficacy and safety of paediatric medicinal cannabis use: A scoping review

INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and…

Tags: 2021, Cannabidiol, Cannabis, Chau B, Drug-resistant epilepsy, McKellar T, Medicinal Cannabis, Medicinal marijuana, Paediatrics And Child Health, Pawliuk C, Rassekh SR, Scoping review, Siden H, Tetrahydrocannabinoid

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,…

Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol

OBJECTIVE: The objective of this scoping review is to map and identify the symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder. INTRODUCTION: Autism spectrum disorder is a…

Tags: 2021, Adolescent, Autism spectrum disorder, Child, Delivery of Health Care, Fletcher S, Humans, Ip A, JBI Evidence Synthesis, Medical Marijuana, Medicinal Cannabis, Oberlander T, Parents, Pawliuk C, Review Literature as Topic, Siden H

Pain Detectives: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)

Tags: Carleton B, Dewan T, Gnanakumar V, Ketchum K, Oberlander T, Orkin J, PIUO, Richardson A, Siden H, Vadeboncoeur C

Caregiver-reported nociceptive pain responses in children with significant neurological impairment (Poster)

Tags: Carleton B, Dewan T, Gnanakumar V, Holsti L, Johnston E, Oberlander T, Orkin J, PIUO, Richardson A, Siden H, Vadeboncoeur C

The PIUO Study: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)

PIUO+Study+Poster+-+Child-Bright+VS2022.pdf

Tags: Hermansen AM, Pain, PIUO, Siden H

The Family Liaison : an integral part of our research team (Poster)

Hermansen_A_et_al_Family_liason_poster_2021.pdf

In caring for children with serious illness the clinician’s approach is always family centred. As such our clinical research team has continuously involved families in our studies beyond their role as participants in our research. A Family Advisory…

Tags: 2021, Family Liaison, Hermansen AM, Kim L, Parent Participation, Siden H

Locus-Of-Care Disparities in End-Of-Life Care Intensity among Adolescents and Young Adults with Cancer: A Population-Based Study Using the Impact Cohort

BACKGROUND: Adolescents and young adults (AYAs) with cancer may experience elevated rates of high-intensity end-of-life (HI-EOL) care. Locus-of-care (LOC) disparities (pediatric vs adult) in AYA end-of-life (EOL) care are unstudied. METHODS: A…

Tags: 2021 Special Edition - Oncology, 2022, Baxter NN, Cancer, Coltin H, Gupta S, Momoli F, Nagamuthu C, Nathan PC, Oncology, Pole JD, Rapoport A

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study

PURPOSEEvidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the…

Tags: 2021, 2021 Special Edition - Oncology, Earle C, Gupta A, Gupta S, Journal Of Clinical Oncology, Kassam A, Luo J, Oncology, Rapoport A, Srikanthan A, Sutradhar R, Widger K, Wolfe J

End-of-Life Childhood Cancer Research: A Systematic Review

CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. OBJECTIVE: To describe stakeholder perspectives regarding research…

Tags: 2021, 2021 Special Edition - Oncology, Hasan F, Oncology, Pediatrics, Sung L, Wheaton L, Widger K

Impact of Specialized Versus General Palliative Care on the Intensity of Medical Care at the End of Life in Adolescents and Young Adults with Cancer: A Population-Based Cohort Study

Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk…

Tags: 2022, 2022 Special Edition 3 - Oncology List, Earle C, Gupta A, Gupta S, Journal of Pain and Symptom Management, Kassam A, Luo J, Rapoport A, Srikanthan A, Sutradhar R, Widger K, Wolfe J

Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis

Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2)…

Tags: 2022, Advance Care Planning, February List 2023, Goodman K, Ives-Baine L, Journal of Palliative Medicine, Life-threatening Conditions, Lord S, Mackenzie J, Perinatal Care, Pollard L, Rapoport A, Salminen R, Van MS, Williams R

Use of the interRAI PEDS HC in Children Receiving Home Care in Ontario, Canada

BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of…

Tags: 2022, Child, Female, Male, BMC Health Services Research, Doherty M, Epidemiology, Home Care, Human, Jones A, November 2022 List, Ontario, Palliative Therapy, Pilot Study, Prevalence, Thorburn-Winsor E, Vadeboncoeur C

Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty

Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty.…

What do parents value regarding pediatric palliative and hospice care in the home setting?

CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting…

Tags: 2020, 2022 Special Edition 2 - Parent Perspectives, Boyden JY, Deatrick JA, discrete choice experiment, Ersek M, Feudtner C, Home-based Care, Journal of Pain and Symptom Management, LaRagione G, Lord BT, Pediatric Hospice Care, Pediatric Palliative Care, Widger K

interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience

High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate…

Tags: 2022, Doherty M, Focus Groups, Health Services Insights, home care services, Lynch-Godrei A, May 2022 List, Needs Assessment, Pediatrics, Vadeboncoeur C

Clinician views on and ethics priorities for authorizing medical cannabis in the care of children and youth in Canada: a qualitative study

BACKGROUND: The use of cannabis for medical purposes by pediatric patients is expanding across Canada; however, supporting evidence, federal regulations and treatment guidelines are lacking. To understand factors affecting treatment decisions in this…

Tags: 2022, Canada, Children, Clinicians, Cmaj Open, Crooks B, Ethics, Gunning M, Illes J, Kelly LE, May 2022 List, medical cannabis, Oberoi S, Qualitative Study, Rapoport AL, Rassekh SR, Rotenberg AD, Youth

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain

Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with…

Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course…

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, 2022 Special Edition 1 - Parent Perspectives, Aldridge CE, Decisional regret, Elliott AM, Genetic Counseling, genome-wide sequencing, Journal of Genetic Counseling, lived experience, Neonates, Osiovich H, Siden H

Engaging Fathers in Pediatric Palliative Care Research

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…

Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth

Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent…

Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and…

Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care

Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health…

Tags: 2022, Cost, February 2022 List, Gupta S, Health Care, Journal of Palliative Medicine, Lysecki DL, Palliative Care, Pediatrics, Rapoport A, Rhodes E, Spruin S, Tanuseputro P, utilization, Vadeboncoeur C, Widger K

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular…

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

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