Browse Items (222 total)

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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,…

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.

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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.…

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…

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,…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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