Objective: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and…
Patients with 22q11DS are at risk of behavioral problems and cognitive impairment. Recent studies suggest a possible intellectual decline in 22q11DS children. To date it is unknown if cognitive development is related to the behavioral problems in…
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative,…
In the GRADE approach, the strength of a recommendation reflects the extent to which we can be confident that the composite desirable effects of a management strategy outweigh the composite undesirable effects. This article addresses GRADE's approach…
BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…
PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed…
IntroductionPediatric critical care and oncology providers care for patients who have life-threatening or serious illness, yet they receive little palliative care education.ObjectiveCompare oncology and critical care providers' attitudes regarding…
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…
We investigated longitudinally parental perceptions of siblings' bereavement after childhood cancer death. Parents were interviewed 6 months (n = 25) and 18 months (n = 75) post-death. Data are analyzed combined and over time. The following themes…
Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life…
BACKGROUND: The introduction of paediatric palliative care and referral to specialised teams still occurs late in the illness trajectory of children with life-limiting diseases. The aim of this ongoing multipart study was to develop a screening…
UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of…
OBJECTIVE: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and…
Pediatric patients between the ages of 12 months and 17 years with a confirmed malignancy who were scheduled to receive aprepitant as part of triple therapy antiemetic prophylaxis for a cycle of moderately- or highly emetogenic chemotherapy were…
CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial…
OBJECTIVE: Chronic cancer pain is often refractory and difficult to treat. Ketamine is a medication with evidence of efficacy in the treatment of chronic pain. DESIGN: This article presents a synthesis of the data on ketamine for refractory cancer…
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive…
Pediatric pharmacotherapy is often challenging due to the paucity of available clinical data on the safety and efficacy of drugs that are commonly used in children. This quandary is even more prevalent in children with rare diseases. Although…
Research indicates that approximately 40% to 70% of children with disabilities are identified and treated for feeding difficulties such as reflux. The available literature on children with trisomy 18 does not describe feeding needs or treatment. The…
BACKGROUND: Studies examining the effectiveness of treatment in reducing the noises of death rattle have been conducted; however, the physical impact of death rattle on the patient experiencing the phenomenon has not been investigated. Treatments may…
PURPOSE: Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and usually linked to mutations in the methyl-CpG-binding protein 2 gene, with an estimated prevalence of 1 in 10,000 live female births. Clinical features which…
BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the…
(1) To explore attitudes and beliefs of neonatal nurses toward nursing care for dying neonates; (2) to estimate the influence of neonatal nurses' personal and professional characteristics on their attitudes towards end-of life care for dying infants.…
Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients,…
BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…
Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early…
Transitions of care are periods of vulnerability and risk in our health care system. The risks for poor clinical outcomes and increased health care costs during transitions increase with poor preparation, planning, communication, and coordination of…
Objectives: We sought to document the prevalence and nature of sleep-disordered breathing (SDB) in individuals with Friedreich ataxia (FRDA) as well as establish the relationship, if any, between SDB and clinical parameters of FRDA. Methods:…
This study is part of a longitudinal research aimed at analyzing the maintenance of negative emotional states in Rheumatoid Arthritis (RA) during the first 2 years of disease progression. The specific aims of the present study were to examine the…
Abstract Background: Complementary or integrative care therapies are promising adjunctive approaches to pain management for pediatric inpatients that are currently underused and understudied. The purpose of this study was to examine the potential…
OBJECTIVE: To describe the incidence and outcomes of children with chronic respiratory failure secondary to severe bronchopulmonary dysplasia (BPD) on chronic positive pressure ventilation (PPV) via tracheostomy at home. METHODS: We retrospectively…
The mucopolysaccharide disorders (MPS) are a group of recessively inherited metabolic disorders resulting in progressive physical and cognitive decline. MEDLINE, PsycINFO and Embase databases were searched, alongside manual screening, to identify…
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for…
BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also…
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for…
Objective: To validate a useful version of the Motor Function Measure (MFM) in children with neuromuscular diseases aged .90), and discriminant validity was good. Conclusions: The MFM-20 can be used as an outcome measure for assessment of motor…
