Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 201–225 of 236 publications
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at…
Continuing bonds with the living: bereaved parents’ narratives of their emotional relationship with their children
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent. This narrative inqu…
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal ris…
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-g…
Parents' Perception of Their Relationship Following the Loss of a Child
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss of a chil…
Perinatal palliative care after a stillbirth - Midwives experiences of using Cubitus baby
In Sweden, around 450 babies are stillborn every year. Usually, the parents stay at the hospital a couple of days after the birth and they can have the baby in their room. Due to the importance to keep a dead body cold it has, until recently, been a routine to…
The spiritual needs of seriously ill children and their families
Background Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with a child's imminent death.
A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses
PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the nurses' pers…
End-of-life decision-making for children with severe developmental disabilities: The parental perspective
BACKGROUND AND AIMS: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence…
Keeping all options open: Parents' approaches to advance care planning
BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. …
Participation in a clinical trial for a child with cancer is burdensome for a minority of children
Aim: This study explored how parents who had lost a child to cancer felt about them taking part in a clinical trial. Methods: A retrospective questionnaire was sent to parents who had lost a child to cancer. They were asked whether their child took part in a c…
Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor
Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/E…
What are the limits of parental authority? Pediatric bioethics and the law
Objectives * Distinguish between the "best interest standard" and "the harm principle" in the evaluation of familial medical decision making in pediatrics and analyze the strengths and weaknesses of each. * Identify key legal cases in pediatrics and explain th…