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 1626–1650 of 4332 publications
Decision-making experiences of health professionals in withdrawing treatment for children and young people: A qualitative study
OBJECTIVE: To explore factors that influence professionals in deciding whether to withdraw treatment from a child and how decision-making is managed amongst professionals as an individual and as a team. STUDY DESIGN: Semi-structured interviews were conducted w…
Decision Making for Infants With Neurologic Conditions
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudin…
Decision-Making Process for the Implementation of the Child Therapeutic Support Limitation Plan: Nurses' Experiences
Aim: To present nurses' experience in the decision-making process for implementing a therapeutic support limitation plan in the PICU.
Method(s): Qualitative exploratory research was conducted through semi-structured interviews with 25 intensive care nurses fro…
Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role in Pediatric Palliative Care
While social workers are a well-established, part of the pediatric palliative care team, this manuscript presents the first published definition of the core competencies of a pediatric palliative care social worker. National experts in the field, guided by the…
Defining Neonatal Serious Illness
Background: One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. Objective: We sought to define neonatal se…
Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa
CONTEXT: In sub-Saharan Africa there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify specialized needs of children and their families requiring p…
Demographic and Clinical Differences Between Applied Definitions of Medical Complexity
OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a retrospective,…
Depression and Quality of Life Among Caregivers of Pediatric Cancer Patients
Background
This study aimed to assess the prevalence of depression, depressive symptoms, and quality of life among caregivers of pediatric cancer patients and the associated risk factors.
Methodology
In total, 73 participants were recruited for this cross-se…
Describing Pediatric Palliative Care Concepts to Patients and Families #442
Pediatric palliative care teams provide an additional layer of continuity and support to children and families throughout the course of any serious illness. The mentioned concepts offer support to a child's primary medical team who play an instrumental role in…
Descriptive analysis of palliative sedation in a pediatric palliative care unit
INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation.
MATERIAL AND METHODS: A non-systematic review of the literature was use…
Development of a Global Palliative Care Program
Background and Aims: Disparities in access to pediatric palliative care (PPC) and pain management remain an under-addressed global health issue, especially in low- and middle-income countries (LMICs). Although integration of palliative care (PC) is currently c…
Development of a research-based classification of approaches to paediatric palliative medicine service provision within children's and young adults' hospices: A mixed methods study
Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, s…
Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process
Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, re…
Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing
BACKGROUND: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree…
Disposition Decisions in Cases of Medical Complexity and Health Inequity
The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families, and health care provide…
Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions
Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captur…
'Eat, sleep, internet and talk': an exploratory study of play profile for children living with palliative care needs
BACKGROUND: Play is central to children's lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children's play when receiving care in children's hospital…
Effectiveness of time-limited eye movement desensitization reprocessing therapy for parents of children with a rare life-limiting illness: a randomized clinical trial
BACKGROUND: Parents of children with a rare progressive life-limiting illness are at risk for parental posttraumatic stress disorder (PTSD). Studies on the treatment of parental PTSD with eye movement and desensitization reprocessing (EMDR) therapy in pediatri…
Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial
The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined.To evaluate the longitudinal efficacy of the Family-Centered Adva…
Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent…
Eligible neonatal donors after circulatory determination of death (Maastricht type III): A national survey of level III NICUs
BACKGROUND: Organ donation continues to increase worldwide, but in general paediatric patients remain less likely to receive a transplant. The inclusion of neonates as donors after cDCD should be considered in an effort to increase donation rates.
METHODS: The…
Emotional Wellbeing in Adolescents Living With Chronic Conditions: A Metasynthesis of the Qualitative Literature
Adolescents living with chronic conditions (ALWCCs) are at a higher risk of suicide (odds ratio: 4.3) than their peers. No consensus exists in the scientific community on a definition or conceptual elements of emotional well-being in this vulnerable population…
Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans
Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked confidenc…
Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research
Background/aims: Patient and public involvement (PPI) is essential to design and deliver meaningful research, but evidence on how to involve children and young people (CYP) in palliative care studies is limited. We aim to develop strategies to engage CYP PPI i…