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 126–150 of 206 publications
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatm…
Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory righ…
Regret and unfinished business in parents bereaved by cancer: A mixed methods study
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on …
Shared spiritual beliefs between adolescents with cancer and their families
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an i…
Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their c…
Supporting the Decision Making of Children With Cancer: A Meta-synthesis
Background: Recently, awareness of children's decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making proces…
The Role of Palliative Care in Caring for the Families of Patients With COVID-19
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 patients' loved on…
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to info…
A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative needs
BACKGROUND:: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM:: To explore the process of inform…
An Objective Approach to Decisions to Withdraw or Withhold Life-sustaining Medical Treatment
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of ca…
Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study
Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating rec…
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study
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 providers have…
Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical provi…
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for…
Choosing Between Medical Management and Liver Transplant in Urea Cycle Disorders - A Conceptual Framework for Parental Treatment Decision-Making in Rare Disease
BACKGROUND: Urea cycle disorders (UCD) are rare inherited metabolic disorders caused by deficiencies of enzymes and transporters required to convert neurotoxic ammonia into urea. These deficiencies cause elevated blood ammonia, which if untreated may result in…
Decision-making at the limit of viability: The Austrian neonatal choice context
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairm…
End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services
Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specia…
Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention
OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided pro…
Impact of specialized pediatric palliative care programs on communication and decision-making
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central…
Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in …
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are livi…
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).…
Parental Perspectives on Roles in End-of-Life Decision Making in the Pediatric Intensive Care Unit: An Integrative Review
Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). The authors searched CINAHL, PubMed, Ovid Medline, Web of …
Parental Use of Religion and Spirituality in Medical Decision-Making
New medical technology has extended children's lives, creating challenges for parental decision-making. Many parents utilize religion or spirituality (R/S). This study examined the semi-structured interviews of 24 parents who made significant medical decisions…
Parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder: a scoping review
Purpose: To conduct a scoping review of the published evidence on parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder and clinicians' influence on timely wheelchair implementation. Method: Nine electronic databases …