Browse Items · Pediatric Palliative Care Library

Your child is dead

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.…

After the child dies

The parents of a child who dies feel the emotions of shock, mourning, and confusion as they slowly come to accept the finality of the child's death. In contemporary America they frequently feel isolated and abandoned. The individuals and institutions…

Tags: 1976, Attitude To Death, Backlog, Child, Death, Emotions, Female, Fischhoff J, Humans, Journal Article, Male, O'Brien N, Parents, Professional-family Relations, Self-Help Groups, The Journal Of Pediatrics

Developing a process to support perinatal nurses after a critical event

The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…

Circumstances surrounding end of life in a pediatric intensive care unit

OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting.…

Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer

This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13…

Discussing Death as a Possible Outcome of PICU Care

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…

Sibling involvement at the end of life

When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide…

Tags: 2005, Attitude To Death, Attitude to DeathBereavement Child Emotions HumansNeoplasms/nursing/psychology Oncologic NursingSibling Relations Siblings/psychology Terminal Care/psychology, Backlog, Bereavement, Child, Emotions, Giovanola J, Humans, Journal Article, Journal Of Pediatric Oncology Nursing, Neoplasms, Oncology Nursing, PedPal Lit, sibling bereavement, Sibling Relations, Siblings, Terminal Care

Children with cancer talk about their own death with their families

In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the…

Factors influencing death at home in terminally ill patients with cancer: systematic review

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…

Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning?

Despite increasing cure rates, cancer is a leading cause of non-accidental death in childhood. Models of psychosocial care in pediatric cancer may therefore need to address bereavement planning for a 'minority group' of parents (approximately 25%)…

Indicators of family resilience after the death of a child

The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in…

End-of-life decisions in perinatal care: A view from health-care providers in Mexico

OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers,…

Building a new world: habits and practices of healing following the death of a child

The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the…

What is wrong with end-of-life care? Opinions of bereaved family members

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,…

Issues in Islamic biomedical ethics: a primer for the pediatrician

The United States is becoming increasingly pluralistic. Pediatricians must become familiar with the factors that affect the emotional, physical, and spiritual health of their patients that are outside the kin of the traditionally dominant value…

Sibling grief: a case report

The intensity of sibling grief and the significance of sibling mourning are described in research studies. Yet, nurses caring for dying children may be unaware of these findings and may not offer adequate support to assist siblings in working through…

Tags: 1991, Adaptation, Archives Of Psychiatric Nursing, Art, Attitude To Death, Backlog, Bereavement, Child, Family Therapy, Grief, Heiney SP, Humans, Journal Article, Male, Psychological, sibling bereavement, Sibling Relations

Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer

Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19…

Undergraduate nursing students' attitudes and preparedness toward caring for dying persons - A longitudinal study

Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life…

Family-Centered Culture Care: Touched by an Angel

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and…

Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study

CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness,…

Patient-reported outcomes in end-of-life research in pediatric oncology

OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at…

Tags: 2007, Allen C, Attitude To Death, Attitude To Health, Brandon J, Child, Hijiya N, Hinds PS, Hospice Care, Humans, Journal of Pediatric Psychology, Kane JR, Neoplasms/px [psychology], Neoplasms/th [therapy], Newsome R, Oncology 2017 List, Palliative Care, Quality Of Life

End-Of-Life Research as a Priority for Pediatric Oncology

Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients…

Impact of child death on paediatric trainees

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…

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

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…

Caring for the child with cancer at the close of life: "there are people who make it, and I'm hoping I'm one of them"

Approximately 25% of children with cancer die of their disease. Early in the course of a patient's illness, it is often impossible to determine whether the disease will be cured with cancer-directed treatment. When potentially curative therapy is no…

Tags: 2004, Attitude To Death, Backlog, Caregivers, Child, Communication, Duncan J, Family, Humans, Hurwitz CA, JAMA, Journal Article, Neoplasms/therapy, Non-U.S. Gov't, Palliative Care, Physician-patient Relations, Research Support, Terminal Care, Wolfe J

On The Child's Own Initiative: Parents Communicate With Their Dying Child About Death

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how…

From death notification through the funeral: bereaved parents' experiences and their advice to professionals

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…

Tags: 2003, Attitude To Death, Backlog, Bereavement, Cadell S, Child, Death, Fatal Outcome, Funeral Rites, Grief, Janzen L, Journal Article, Omega, Parents, Sudden, Westhues A

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition

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…

Pediatric palliative care: feedback from the pediatric intensivist community

With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and…

Factors influencing parental readiness to let their child with cancer die

BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process.…

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

Death by request in the Netherlands: facts, the legal context and effects on physicians, patients and families

How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative

Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper…

When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based…

A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.

A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…

Mothers' experience of social support following the death of a child

1. This study aimed at analysing the grief and coping of mothers whose child had died under the age of 7 years. The paper describes the social support received as experienced by mothers. 2. Data were collected using a survey (n=91) and interviews…

Childhood bereavement after the death of a sibling.

The article describes a study designed to explore the processes of sibling bereavement and to compare children's impressions with those of their parents. The Institute of Medicine model was used as a sensitizing framework for the study. Constant…

Guidelines for assistance to terminally ill children with cancer: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology

This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the…

Emotion work in the palliative nursing care of children and young people

The nurse's role in supporting and caring for children and young people with life-limiting illness/conditions and their families requires specialist expertise. This domain can be one of the most emotionally challenging areas of practice. The concept…

Suffering indicators in terminally ill children from the parental perspective

PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their…

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