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 926–950 of 4332 publications
Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of…
Exploring the experiences of children's palliative care for forced migrant families in the United Kingdom: an interpretative phenomenological study
Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with a focus up…
Exploring the Learning Process for Neonatology Fellows of Giving Serious News on a Virtual Platform
Background Since 1998, the Accreditation Council for Graduate Medical Education has highlighted the importance of teaching palliative care skills, yet neonatology fellows sometimes receive varied and inadequate training on these topics. As this study was condu…
Exploring the Role of Genetic Testing in Decisions to Redirect Care in Critically Ill Infants
OBJECTIVE: Genetic disorders are a major determinant of morbidity and mortality within neonatal intensive care units (NICUs). Studies have found genetic testing in critically ill infants may lead to changes in clinical decisions such as pursuing end of life ca…
Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research
BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health re…
Facilitating home birth in perinatal palliative care: A case report
Abstract
Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is …
Facilitators and barriers to parent-child communication in pediatric palliative care: An integrative review
Objectives: This study aimed to identify facilitators and barriers to parent-child communication in pediatric palliative care, providing insights for medical professionals developing targeted interventions to enhance parent-child communication and improve its …
Factors associated with family decision-making after pediatric out-of-hospital cardiac arrest
Aim: This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after pediatric out-of-hospital cardiac arrest (OHCA).
Methods: This is a retrospective, explo…
Factors Associated With Palliative Care Birth Planning at a Pediatric Hospital
OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary pediatric hospita…
Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents
BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have …
Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning
Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon.
Objectives: To determine the feasibility and acc…
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pre…
First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic review
Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without necessarily u…
Flourishing, religion, and burnout among caregivers working in pediatric palliative care
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-…
Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions—a qualitative study
Background:The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children?s persp…
Free and Appropriate: Navigating School Integration for Pediatric Patients Receiving Palliative Care or Hospice
Outcomes: 1. Participants will self-report the ability to evaluate the complexities and nuances of school (re)integration for pediatric patients receiving palliative care or hospice. 2. By utilizing an interdisciplinary approach which includes families and sch…
From worries to resilience: a qualitative study of the psychosocial experiences of diverse adolescents and young adults with heart failure and their caregivers
BACKGROUND AND OBJECTIVES: Despite advances in treatment and outcomes for paediatric heart failure, both physical and psychosocial comorbidities remain notable among this patient population. We aimed to qualitatively describe the psychosocial experiences of ad…
Gaining an Empathetic Insight into Parenting: Evaluating Infant Simulator Dolls for Professional Learning
The development of an empathetic approach when working with parents and families is fundamental to both social work and children's nursing; however, opportunities to develop this are limited. RealCare Baby infant simulator dolls were used with the aim of enabl…
Gaps in pediatric oncologic end of life care as recounted by the bereaved parents in Isarel
Purpose This study investigated parents' perception of their needs and those of their children with cancer at the end-of-life period, including unmet needs and their expectations regarding providers. Design and methods This cross-sectional study involved 26 pa…
Gastrointestinal symptoms and problems in children cared by pediatric palliative care teams. Observational study
Gastrointestinal symptoms and problems (GI-SP) frequently cause discomfort and suffering in pediatric patients with life-threatening and/or life-limiting illnesses (LTI/LLI). Pediatric palliative care (PPC) professionals should be aware of them and perform a c…
Goals of Surgical Interventions in Youths Receiving Palliative Care
Importance: Most youths receiving palliative care undergo many surgical interventions over their lifetimes. The intended purposes of interventions in the context of goals of care are not commonly articulated.
Objective: To describe the goals and purposes of s…
Grasping the meaning of perinatal palliative care for the multiprofessional team
Objective: To grasp the meaning of perinatal palliative care for the multidisciplinary team.
Methods: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public university…
"Grief Explodes all Relationships": Experiences of Grief and Coping Among Parents and Siblings Following the Death of a Child
The death of a child is an intense loss for families, which impacts the wellbeing of parents, surviving siblings, and the family as a whole. This study expanded on existing literature by collecting qualitative accounts from bereaved parents and siblings about …
Grieving Children' Death in an Intensive Care Unit: Implementation of a Standardized Process
Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive imp…
Grieving the Loss of a Child and the Use of Online Social Support: An Exploratory Survey Study
PURPOSE: To describe social media online grief supports, accessing behaviors, psychosocial variables, and feelings of support among individuals grieving the loss of a child aged <18 years. METHOD: This online survey study recruited 26 adults grieving the loss …