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 26–50 of 167 publications
Parental perspectives on the clinician's approach to serious illness communication: A qualitative study
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employ…
Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations
The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality …
Please Look at My Baby - When Clinicians Should Say the Word "Hospice"
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Shades of Care: Understanding the Needs of Racially and Ethnically Diverse Paediatric Patients, their Families, and Health Care Providers in North America
While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric care prov…
The experience of families in face of the finiteness of their children in the process of adopting palliative care
OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended palliative…
A Venn diagram of vulnerability: The convergence of pediatric palliative care and child maltreatment a narrative review, and a focus on communication
Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such cases and pr…
"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a …
Communication of bad news in the context of neonatal palliative care: experience of intensivist nurses
OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care.
METHODS: Study with a descriptive qualitative approach, in which 17 professionals …
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda
Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and resource int…
Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation
Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance…
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative car…
Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the firs…
Personalized support of parents of extremely preterm infants before, during and after birth
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families th…
Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital
Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST process in pedia…
Racial Disparities in the Provision of Pediatric Psychosocial End-of-Life Services: A Systematic Review
Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palli…
The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a…
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many…
Update on the palliative care approach at the pediatric intensive care unit
Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration…
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care…
Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and experienced ped…
What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-…
A Communication Guide for Pediatric Extracorporeal Membrane Oxygenation
Decision-making surrounding extracorporeal membrane oxygenation initiation and decannulation has become a key challenge in critical care. Nuanced communication skills and transparent discussions about prognosis are imperative during this lifesaving, yet high-r…
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an onli…