OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents.…
To understand how video telephone technology could support consultations between pathologists and surgeons, this study looked at what constitutes 'work' in clinical consultations. Using several methods (participant observation, video and interviews),…
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes,…
The aim of this integrative review was to increase knowledge about parents' experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysis process. Computerized databases were used to…
OBJECTIVE: To describe family perceptions of care at the end of life. METHODS: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making,…
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71…
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
BACKGROUND: This study evaluated the psychometric properties of the Non-communicating Children's Pain Checklist-Postoperative Version (NCCPC-PV) when used with children with severe intellectual disabilities. METHODS: The caregivers of 24 children…
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with…
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with…
Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the…
When general ward registered nurses (RN) receive patients from an intensive care unit (ICU) they report that much of their time in the initial phases revolves around meeting family needs (Farvis, 2002). Families experience anxiety when leaving the…
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even…
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of…
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical…
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic…
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We…
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting…
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established,…
BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP,…
Pediatric residents report they are not sufficiently trained to communicate with families at a child's death. We performed a study to prove feasibility and assess whether simulation improves their communication and experience. Residents were assigned…
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for…
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a…
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial…
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to…
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…
BACKGROUND: A growing body of research indicates that physicians suffer high levels of stress, depression and burnout. Related literature has found that physician stress can negatively impact patient care. This study builds upon previous research…
OBJECTIVE: to investigate and analyze communication in palliative care contexts from the perspective of nurses, based on Humanistic Nursing Theory. METHOD: this is a field study with a qualitative approach, in which ten nurses working in the…
The Faces Pain Scale (FPS; Bieri et al., Pain 41 (1990) 139) is a self-report measure used to assess the intensity of children's pain. Three studies were carried out to revise the original scale and validate the adapted version. In the first phase,…
OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended…
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…
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that…
Background Few studies have investigated functional and behavioural variables of Cornelia de Lange Syndrome (CdLS) in a large sample of individuals. The aim of this study is to provide greater insight into the clinical, behavioural and cognitive…
