Two home telehealth technologies (the Intel Health Guide and the Apple iPad) were trialled by four clinical services of the Hunter New England Local Health District. The iPad was selected by the Paediatric Palliative Care Service, the Stroke Service…
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,…
Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have…
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 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…
OBJECTIVE: To examine the effectiveness of palliative medicine consultation on completion of advance directives/do-not-resuscitate (DNR) orders by racial/ethnic minorities., METHOD: A sample of 1999 seriously ill African American and Hispanic…
Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home.…
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…
Background:Transition to adult services and adulthood is now a prospect for young people with life-limiting conditions requiring palliative care. Little is known about their transition experiences or how children's hospices can support a young adult…
BACKGROUND: Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population. AIM: We hypothesised that patients with neuropathic cancer pain had…
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…
Pediatric epileptiform encephalopathies are a group of neurologically devastating disorders related to uncontrolled ictal and interictal epileptic activity, with a poor prognosis. Despite the number of pharmacological options for treatment of…
OBJECTIVE: To determine the accuracy of postmortem computed tomography (PMCT) for the assessment of causes in nontraumatic deaths in children. STUDY DESIGN: We enrolled cases of nontraumatic deaths of infants and children who underwent PMCT at a…
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…
BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain.…
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability.…
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…
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…
OBJECTIVE: End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This…
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…
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…
Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician…
PURPOSE OF REVIEW: To review the definition of advanced directive, understand the implications for the patient, family and healthcare team, and address the obstacles involved in the implementation., RECENT FINDINGS: Advanced directives propose a…
OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…
OBJECTIVE:: To describe parents' experience of organ donation decision making in the case of donation after circulatory determination of death. DESIGN:: Qualitative exploratory analysis. SETTING:: Participants were recruited from the ICU of a single…
BACKGROUND:: Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support. OBJECTIVE::…
BACKGROUND:: Although dying children are often aware of their impending death, parents are reluctant to communicate with their dying child about death. OBJECTIVE:: The objective of this study was to examine how parents of children in the advanced…
BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and…
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.
OBJECTIVE:: To evaluate the feasibility and perceived benefits of conducting physician-parent follow-up meetings after a child's death in the PICU according to a framework developed by the Collaborative Pediatric Critical Care Research Network.…
OBJECTIVE: Donation after cardiac death has been endorsed by professional organizations, including the American Academy of Pediatrics as a means of increasing the supply of transplantable organs. However, ethical concerns have been raised about…
Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the…
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…
Abstract Background: Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision…
