Browse Items (39 total)

BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health…

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…

OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their…

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…

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…

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…

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…

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…

It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little…

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…

Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the…

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…

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,…

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…

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: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure…

Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age,…

BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed 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…

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…

Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the…

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…

In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.

BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized…

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:…

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…

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…

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…

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…

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive…

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive…

BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such…

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: 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…

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…
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