OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS:…
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim…
Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by…
This article explores the concepts of narrative as story, of storytelling, and of the narrative approach to qualitative research. Within this, I will also examine the social nature of narrative and the implications of this for research. I will look…
Through a focus on one child's extended stay in a Pediatric Intensive Care Unit, I raise four general questions about pediatric medicine: How should physicians communicate with parents of very sick children? How should physicians involve parents of…
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…
CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the…
Aim: End-of-life care remains within the scope of practice of all neonatal units. There is a paucity of literature regarding the evidence-base for palliative care interventions in the perinatal or neonatal population (Balaguer).
The purpose of this study was to investigate the needs of bereaved parents in Greece (N = 56) regarding the provision of hospital based bereavement services after the death of their child to cancer. The participants did not receive formal or informal…
OBJECTIVES: To determine the relative influence of different factors on place of death in patients with cancer. DATA SOURCES: Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous…
This paper addresses issues relating to place of death in young adults with terminal cancer, through the perspectives of their parents. Evidence suggests that the majority of terminally ill cancer patients would prefer the option of a home death, but…
INTRODUCTION: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children…
Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification…
Shortness of breath and other respiratory symptoms frequently complicate the symptomatic management of terminally ill adults. The extent of the problem in children is not known, but anecdotal evidence from nurses and physicians experienced in…
While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes…
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has…
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed…
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence…
BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their…
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric…
A taxonomy of the things that help and hinder adolescents' sibling bereavement was developed from the responses of 140 bereaved adolescents to the questions What helped you cope with your sibling's death? and What made it harder to cope with your…
The purpose of this article is to provide data on a recently developed instrument to measure the multidimensional nature of the bereavement process. In contrast to widely used grief instruments that have been developed using rational methods of…
Aims An audit of children and young person's advanced care plans (ACPs) in two district general hospitals (centres A and B) against NICE guidance [1]. Methods Centre A: consultants were emailed to identify the population with ACPs. Centre B: two…
OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous…
AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate…
Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify…
A 3-year-old girl with no particular medical history complained of a stomachache and died on the way to the hospital. The autopsy revealed marked right ventricular hypertrophy and dilation with no other cardiac abnormalities. Microscopically, the…
The International Work Group on Death, Dying, and Bereavement recognizes the wide variation of attitudes, beliefs, and behaviours pertaining to childhood death, dying, and bereavement. The purpose of this statement is, therefore, to identify a set of…
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…
Background: Pediatric nurses are particularly vulnerable to moral distress and turnover due to frequent experiences with patient death combined with limited pediatric palliative resources and related support. Objective(s): This study examined…
BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…
Parents who experience the sudden death of a child will interact with many professionals in the period immediately following the death notification through to the funeral. The way these professionals respond to the parents during this critical period…
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various…
Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…
BACKGROUND: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care…
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321…
To understand more about final conversations (communication between loved ones from the point of terminal diagnosis until death), 49 children/adolescents provided final conversation advice for other youth and for the dying person. Advice for fellow…
