BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This…
Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision…
BACKGROUND: The current study was conducted to assess the safety and tolerability of a transdermal fentanyl delivery system for the relief of chronic pain in a pediatric population, and also to validate titration recommendations and conversion to…
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing…
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL…
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well…
Purpose: Although the radiotherapy utilization rate (RUR) is determined for most adult cancers, it is seldom reported in childhood tumors, particularly in low- and middle-income countries (LMIC) where the majority of pediatric cancer patients reside.…
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs…
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs…
BACKGROUND: The integration of art therapy in health care is a growing trend in the care of cancer patients. Therefore, this study aimed to identify the physical and mental benefits of art in children with cancer. MATERIALS AND METHODS: A systematic…
The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult…
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with…
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with…
This paper addresses issues relating to place of death in young adults with terminal cancer, through the perspectives of their parents. Evidence suggests that the majority of terminally ill cancer patients would prefer the option of a home death, but…
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families…
Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence…
The number of children with life-limiting or life-threatening conditions in England is double what it was at the millennium. These conditions include cystic fibrosis, cancer, organ failure and severe neurological injuries. The Teaching for Life…
CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to…
Background: Recently, awareness of children's decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the…
PURPOSE: Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what…
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support…
Aim The aim of this paper is to report an analysis of the concept of spiritual care of a child with cancer at the end of life. Background Spirituality is a vital dimension of a child's experience at the end of life; providing comfort; support; and a…
BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of…
CONTEXT: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument. OBJECTIVES: To validate…
Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high-intensity end-of-life care (HI-EOLC), but sociodemographic and hospital-based predictors of HI-EOLC remain unclear. Method(s): The authors…
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology…
BACKGROUND: Estimates of the probability of developing or dying from cancer, either over a lifetime or over a specified number of years, are useful summary measures of the burden of cancer in a population. METHODS: The authors used publicly available…
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.…
BackgroundRacial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal-concordant or disparities. The authors sought to explore patterns of…
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for…
OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to…
Objective To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer.…
Paediatric palliative care has continued to develop as a philosophy of care and as a practical clinical service to children with life-limiting conditions. More doctors and nurses identify themselves as particularly interested in the subject, and…
OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to…
CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear. OBJECTIVE(S): The objective of the study was to…
OBJECTIVE: To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer. METHODS: We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that…
BACKGROUND: It can be difficult to explain pediatric phase 1 oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the…
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…
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children,…
BACKGROUND: Providing access to pediatric palliative care (PPC) for children living with a serious illness, such as cancer, is of critical importance, although this specialized intervention, as a novel concept, still seems vague and complicated. The…
