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 501–525 of 4332 publications
"Holding Families in Uncertainty" : A Framework Analysis of the Role and Impact of Children's Hospices in the Provision of Perinatal Palliative Care
There is growing international evidence of the benefits of early perinatal palliative care for babies and their families. Despite this, inconsistency remains in ways care is provided by services including fetal medicine, maternity and neonatal services, and ch…
Holistic Nursing Care for Perinatal Loss Based on Swanson's Theory of Caring
Abstract
Purpose: The purpose of this study was to inform perinatal loss care by expanding upon the five processes of Swanson's Theory of Caring through a holistic lens.
Study design and methods: This study was a qualitative content analysis of 34 interview t…
Home Based Pediatric Palliative Care in the UK: Lessons to Learn?
While pediatric hospice and palliative medicine as a field have experienced enormous growth over the past twenty years, much work remains to be done, including establishing best practices and guidelines for provision of home-based palliative care and hospice. …
Hope pluralism in antenatal palliative care
When parents face the distressing news during pregnancy that their baby is affected by a serious medical condition that will likely lead to the baby’s death before or soon after birth, they experience a range of complex emotions. Perhaps paradoxically, one com…
Hospital-Based Perinatal Bereavement and Palliative Care: A Descriptive Study to Measure Patient Satisfaction and Care Provided
Objective: The purpose of this study was to examine: 1) patient satisfaction with perinatal bereavement and palliative care services; and 2) occurrence of expected care activities provided by nurses for women who have experienced perinatal loss.
Background: P…
How can telehealth be used to enhance the quality of care in home-based pediatric palliative care: protocol for a systematic literature review
Pediatric palliative care (PPC) is a specialized medical approach aimed at improving quality of life of children with life-limiting and life-threatening conditions. It addresses the needs of both the child and family, and preferably starts immediately after a …
Humanization strategies in pediatric intensive care: A scoping review
Background
The international HU-CI project advocates eight strategic strands for the humanization of intensive care units. Despite of adult ICUs have received attention to promote humanization of care, in the paediatric context, the humanization of care contin…
“I am the mother of the kind of child you dread having”: Experiences of living with chronic sorrow among parents with a disabled child
Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being co…
“I don't grieve as much as I used to”: A qualitative study on parents of children with rare and undiagnosed conditions navigating grief in the context of uncertainty
Abstract
The aim of this qualitative interview study was to explore the lived experiences of parents, experiencing high anxiety and poorer quality‐of‐life/family functioning, caring for a child with a rare and undiagnosed condition. Data analysis led to the …
"I Don't Have to Say That They Are Dying Now": Professionals' Perspectives on Death-Related Communication With Children and Young People With Intellectual Disabilities in Paediatric Palliative Care in Germany
Background: Children and young people with life-limiting conditions in palliative care often have some degree of intellectual disability. Literature about death communication with this patient group is limited. This study aimed to explore professionals' perspe…
I have the right to carry a backpack: access to the school of children and adolescents in paediatric palliative care in the Veneto Region (Italy)
Background
This universal right of access to school applies to all children and adolescents, including paediatric palliative care (PPC) patients. PPC patients display several different levels of disability and cognitive impairment that pose challenges to schoo…
"I have to be strong": A qualitative study of parental bereavement experiences in Uganda following the death of their baby
The death of a child is profoundly distressing for parents, often leading to acute grief and psychological complications. Most bereavement research is from high-income countries, with limited generalisability to low- and middle-income contexts where 98 % of ne…
Illness-related communication experiences of mothers of children with cancer during the end of life
Background
Communication between parents and their dying child with cancer is crucial. Open and compassionate conversations about diagnosis and treatment help the child express fears, ask questions, and find meaning, while also allowing parents to share precio…
Illness Uncertainty in Parents of Children With Cancer—An Exploratory Analysis to Inform Intervention Development
ABSTRACT Background Illness uncertainty?a state of struggling to make sense of illness-related events?contributes to distress among parents of children with cancer. While some illness uncertainty is inescapable, uncertainty may be minimized through interventio…
"I'm not a physician, but i'm the expert for my child" experiences of parents caring for their child with a life-limiting condition in an inpatient setting - A qualitative study
Objectives: Children with life-limiting conditions (LLC) are exposed to frequent hospitalizations, with their parents as indispensable supporters, even in inpatient care. Data on the experiences of parents in a hospital setting are scarce. This study aims to i…
Impact of abortion bans on pregnancies with severe life-limiting foetal anomalies in the United States: A cost-effectiveness analysis
Objective: Since the US Supreme Court decision in Dobbs v. Jackson Women’s Health to overturn the constitutional right to abortion in June 2022, 24 states have enacted laws prohibiting termination of pregnancy before most foetal anomalies are diagnosed. Few pr…
Impact of complex chronic diseases and life-limiting condition status on paediatric hospitalization: observational study
Children with medical complexity (CMC) and life-limiting conditions (LLCs) have a high utilization of healthcare resources. This study aims to assess the impact of CMC and LLC on hospitalization in the Basque Public Health System (BPHS) and to compare CMC to L…
Impact of Intensivist Authority on End-of-Life Practices in a Korean PICU
Timely end-of-life decision-making is critical for ensuring quality care in the pediatric intensive care unit (PICU). We evaluated the impact of intensivist-led care on the timing and structure of end-of-life (EOL) practices. We retrospectively reviewed 39 PIC…
Impact of nutritional status on the outcome of critically ill pediatric patients
Background: Malnutrition among patients admitted to a pediatric intensive care unit (PICU) is common. However, there is a lack of data on its impact on the critically ill.
Aim: To assess the impact of nutritional status on the outcome of critically ill childr…
Impact of Palliative Care on Psychosocial and Spiritual Outcomes in the Neonatal Intensive Care Unit
Context: Pediatric palliative care (PPC) consultation for infants with life-limiting conditions provides parents and caregivers with opportunities to participate in advance care planning, shared decision-making, and to receive appropriate psychosocial and spir…
Impact of Pediatric Palliative Care on Goal Concordant Care in the Neonatal Intensive Care Unit
Context Little is known about the prevalence of goal-concordant care (GCC) in the NICU and whether it can be measured from chart data. Objectives To determine if GCC can be evaluated using chart data, to identify factors associated with GCC, and to evaluate th…
Impacts of a Novel Pediatric Neuropalliative Medicine Clinic: Characterization of Referrer Feedback
PurposeChild neurologists provide care for children with complex chronic health conditions often accompanied by logistical, emotional, and societal challenges. Pediatric neuropalliative medicine is a nascent subspecialty that aims to augment standard child neu…
Impacts of Ethical Dilemmas and Moral Distress in Pediatric Hematology Oncology Nurses
Purpose
To assess the level of moral distress (MD) and perceptions of ethical climate among pediatric hematology/oncology (PHO) nurses and to identify bioethics topics where increased education was desired.
Methods
In this cross-sectional study, we administer…
Impacts on Caregivers of Witnessing Terminal Lucidity in Children
Cases of terminal lucidity (TL) in children have recently been documented in contemporary literature, yet no studies have examined the impact on caregivers of witnessing TL in children. Using an online survey, this study assessed the impact of witnessing TL in…
IMPLEMENTATION OF A WITHDRAWAL OF LIFE-SUSTAINING THERAPIES CHECKLIST HUDDLE
INTRODUCTION: Approximately 80% of pediatric deaths occur in the pediatric intensive care unit (PICU), with a significant proportion being after withdrawal of life sustaining therapies (WOLST).1-3 There are few published guidelines for how to prepare for and p…