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…
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…
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…
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…
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…
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…
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…
Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for…
This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.
Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved…
OBJECTIVE: To evaluate the impact of the interaction of physical function and emotional well-being on disease-related parameters and coping with rheumatoid arthritis. METHODS: A cross-sectional survey among 177 RA patients included demographic and…
Seizures are a frequent complication associated with several neurogenetic disorders. Antiepileptic medications remain the mainstay of treatment in these patients. We summarized the available data associated with various antiepileptic therapies used…
OBJECTIVE:: Current models of chronic pain recognize that psychosocial factors influence pain and the effects of pain on daily life. The role of such factors has been widely studied in English speaking individuals with chronic pain. It is possible…
Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal…
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life,…
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their…
