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…
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for…
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…
Behavioral problems are common in children with tuberous sclerosis complex (TSC) and can be challenging to manage at home. Standardized measures were used to assess behavior in 99 pediatric patients with TSC and to evaluate parenting stress in their…
BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric…
BACKGROUND: Clinicians are the standard source for adverse event (AE) reporting in oncology trials, despite the subjective nature of symptomatic AEs. The authors designed a pediatric patient-reported outcome (PRO) instrument for symptomatic AEs to…
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…
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.
Context: There is an ongoing established need to develop engaging pain assessment strategies to provide more effective individualized care to pediatric patients with serious illnesses. This study explores the acceptability of wireless devices as one…
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy…
OBJECTIVE: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it…
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 purpose of the current study was to investigate longitudinally children's behavioral and social competence outcomes up to 2 years after pediatric stem cell transplantation (SCT) and related factors. METHODS: Ninety-nine mothers and 24…
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…
BACKGROUND: Bone metastases typically are associated with osteolytic bone destruction, resulting in bone pain, pathologic fractures, spinal cord compression, and hypercalcemia. Bisphosphonates are potent inhibitors of normal and pathologic bone…
OBJECTIVES: Fatigue is common among children living with cancer, particularly in advance stages. Little is known about the effectiveness of non-pharmacological approaches to manage this complex and distressing symptom among children. Thus, the…
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.…
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: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible…
BACKGROUND. When a change of opioid is considered, equianalgesic dose tables are used. These tables generally propose a dose ratio of 5:1 between morphine and hydromorphone. In the case of a change from subcutaneous hydromorphone to methadone, dose…
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…
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes…
BACKGROUND:
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived…
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…
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…
BACKGROUND. Development of tolerance to opioid analgesics occurs often in patients with cancer-related pain. Cross-tolerance among opioid analgesics provides the physician with a major management problem. Incomplete cross-tolerance among opioid…
BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233…
Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains…
PURPOSE: The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is…
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…
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…
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance…
BACKGROUND: Palliative care is one of the necessary elements in the treatment of children with cancer. Adaptation of country-specific palliative care practices to universal standards can provide valuable information for health care stakeholders. AIM:…
BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care,…
BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region,…
OBJECTIVE:
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay…
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: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the…
