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 876–900 of 4332 publications
Development and Feasibility Evaluation of a Family-Centred Neonatal End-of-Life Care Protocol
AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' re…
Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer
Background: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations det…
Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK)
Abstract
Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a hetero…
Development of Patient-Centered End-of-Life Care Quality Measures in China: A Modified Delphi Process
Objective: Patient-centered care is widely recognized as a crucial component of high-quality end-of-life care. As this approach remains limited in China, this study sought to develop quality measures specifically tailored to end-of-life care within the country…
Development of Specialty-Based Pediatric Palliative Care Clinics
Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to start and grow…
Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure
Abstract
Background
Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill chi…
Development of the pediatric family-based dignity therapy protocol for terminally ill children (ages 7-18) and their families: A mixed-methods study
OBJECTIVES: Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. METHO…
Difficulties experienced by Turkish parents with children in pediatric palliative care: An exploratory qualitative study
We aimed to identify the difficulties of the parents of pediatric palliative care patients and how they cope with these problems in this qualitative study in Turkey. This study was carried out with 20 parents by in-depth interviews. Content analysis was used f…
Dignity in the Pediatric Population: A Systematic Review
Context: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature an…
Discovering needs for palliative care in children with cancer in Indonesia
BACKGROUND: Although most children with cancer die in low- and middle-income countries, palliative care receives limited attention in these settings. This study explores parents' perspectives on experiences and needs of children dying from cancer. METHODS: Hom…
Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions
INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the frequency an…
DIVERSITY IN ETHNICITY AND MAIN SPOKEN LANGUAGE OF CHILDREN REFERRED TO A SPECIALIST PAEDIATRIC PALLIATIVE CARE SERVICE
Objectives To evaluate the diversity in ethnicity and main language spoken by children formally referred to a specialist paediatric palliative care service, and to compare this to both local and regional population demographics. Methods A retrospective case no…
DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood
Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of childhood-ons…
DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?
Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died on our PICU…
Doctor-Parent Disagreement for Preterm Infants Born in the Grey Zone: Do Ethical Frameworks Help?
Objective: To examine i) how ethical frameworks can be used in concrete cases of parent-doctors' disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in us…
Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives
Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex ca…
Dronabinol Is Not a Game Changer in Pediatric Palliative Care: Results from a Retrospective Study
BACKGROUND/OBJECTIVES: Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are limited to ou…
Early phase clinical trials in pediatric oncology: Swedish pediatric oncologists' experiences of balancing hope and expectations in life-threatening illnesses
AIM: To study Swedish pediatric oncologists' practical and emotional experiences of referring, including and/or treating children in early-phase clinical trials. METHODS: A nationwide study was conducted using a mixed-method approach. Structured interviews bas…
Effectiveness of an Interdisciplinary Pediatric and Neonatal Palliative Care Simulation Program in India
Background
Palliative care is a human right to which all people should have access, however pediatric and neonatal palliative care resources are limited in India.
Design and Methods
A quantitative one-arm pre-test / post-test and descriptive correlational desi…
Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace
Outcomes: 1. Know how advance care planning with families of children with rare diseases can improve family caregiver outcomes. 2. Understand the impact of race and social determinants of health on family caregiver appraisal of their caregiving and the impact …
Effect of Palliative Care Educational Intervention on Pediatric Nurses' Performance and Self-Competence in Caring for Children with Critical Illness
Abstract: Background: Palliative care has recently become imperative in child care. Pediatric nurses need to boost their education in this area to be able to offer proper care for children with critical illnesses. Purpose: To determine the effect of palliative…
Effect of Sustaining a Perinatal Loss: Mothers’ Mental Health and Marital Satisfaction
Abstract
The occurrence of perinatal losses is an unfortunate, yet common degeneracy that implements perturbing taxation on the mental, emotional, and marital health of mothers considering the grief they impose. This study is a quantitative venture that utiliz…
Effect of timing of palliative care consultation on end-of-life care for children with advanced cardiac disease
Background: Pediatric patients with advanced cardiac disease often receive high intensity medical care at the end of life (EOL). Specialized pediatric palliative care (PPC) has been shown to improve symptom management and EOL goal-concordant care, resulting in…
Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review
Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric…
Empathic Care of Neonates: A Critical Literature Review
Clinical empathy is a multidimensional ability to feel the patient's suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others. The authors …