Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on…
AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…
BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…
In February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering 'constant and…
BACKGROUND: The need for empathy and the difficulties of coping with mortality when caring for the dying and the bereaved can cause psychological, emotional, and spiritual strain. OBJECTIVE: The aim of this study was to examine the effectiveness of…
BACKGROUND: In light of the Korean Supreme Court's 2009 ruling favoring a patient's right to die with dignity, we evaluated trends in aggressive care in a cohort of pediatric cancer patients. Methods We conducted a population-based retrospective…
BACKGROUND: Dentists recommend over-the-counter medications for postoperative pain in children, and parents often make dosing errors when administering these medications. The authors compared the dosing accuracy when parents used various measuring…
BACKGROUND: Although several tools to evaluate the credibility of health care guidelines exist, guidance on practical steps for developing guidelines is lacking. We systematically compiled a comprehensive checklist of items linked to relevant…
OBJECTIVE: Pediatric inpatients may be at risk for inadequate pain management if they are unable to communicate effectively because of age, physical or cognitive impairment, or medical procedures. We conducted a point prevalence study to estimate the…
OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of…
Opioids are often prescribed to children for pain relief related to procedures, acute injuries, and chronic conditions. Round-the-clock dosing of opioids can produce opioid dependence within 5 days. According to a 2001 Consensus Paper from the…
The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong…
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and…
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…
Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…
Clinicians frequently worry that medications used to treat pain and suffering at the end of life might also hasten death. Intentionally hastening death, or euthanasia, is neither legal nor ethically appropriate in children. In this article, we…
A unilateral do not attempt resuscitation (DNAR) order is written by a physician without permission or assent from the patient or the patient's surrogate decision-maker. Potential justifications for the use of DNAR orders in pediatrics include the…
OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…
BACKGROUND AND OBJECTIVES: Pediatric bioethics presumes that decisions should be taken in the child's best interest. If it's ambiguous whether a decision is in the child's interest, we defer to parents. Should parents be permitted to consider their…
For centuries, many physicians and parents assumed that it was ethically justifiable to lie to a dying child. The reasoning was clear. Because the lie would likely eliminate or prevent a concrete harm (the child's fear), and the lie is about a harm…
OBJECTIVE: To describe what has been published in Brazilian scientific literature regarding pediatric palliative care. DATA SOURCES: Bibliographic review with a descriptive approach. In LILACS and SciELO databases, the descriptors "palliative care",…
Chronic diseases are diseases of long duration and slow progression. Major NCDs (cardiovascular diseases, cancer, chronic respiratory diseases, diabetes, rheumatologic diseases and mental health) represent the predominant health problem of the…
Barth syndrome (BTHS) is a genetic, X-linked, rare but often fatal, pediatric skeletal- and cardiomyopathy occurring due to mutations in the tafazzin gene (TAZ). TAZ encodes a transacylase involved in phospholipid biosynthesis, also called tafazzin,…
The death of a child can be an overwhelming experience for parents. Hospitals are often the first place to get information or to seek services, yet little is known about what types of bereavement services, information, or support are typically…
BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication…
BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To…
BACKGROUND: This article reports the results of a service evaluation designed to assess children's dream fulfillment charity, Dreams Come True. AIMS AND OBJECTIVES: With the objective to gain the opinions of those who have used and are involved with…
The purpose of this study was to examine the relationship between goal achievement measured by the Canadian Occupational Performance Measure (COPM) and child, goal, and intervention factors. Participants were 41 preschool children with cerebral palsy…
Parents of a child with a disability are often asked about their child's functioning in daily activities. One way to gather this information is through parent-report functional questionnaires such as the Pediatric Evaluation of Disability Inventory…
Secondary analysis using data from a clinical trial was performed to evaluate the stability of individual items of the Mobility and Self-Care functional skills scales of the Pediatric Evaluation of Disability Inventory (PEDI). Parents of 113 children…
Malignant rhabdoid tumors (MRT) of soft tissues are aggressive tumors, which can be detected in almost any part of the body. MRT are rare, and very few cases have been reported in the literature. Prognosis of these tumors is extremely poor despite…
BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect…
In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…
