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 851–875 of 4332 publications
Comorbid ADHD and Pediatric Sickle Cell Disease: Prevalence and Risk Factors
Sickle cell disease (SCD) is a genetic blood condition that places youth at increased risk for deficits in complex attention suggestive of increased risk for Attention-Deficit/Hyperactivity Disorder (ADHD). We used systematic screening to assess the prevalence…
Comparing the Need and Development of Pediatric Palliative Care in Mexico: A Geographical Analysis
CONTEXT: The Global Atlas of Palliative Care (GAPC) ranked Mexico's palliative care services at a preliminary integration stage into mainstream healthcare services. However, this data does not reflect pediatric palliative care (PPC) development.
OBJECTIVES: To…
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep…
Compassion fatigue and palliative care in neonatal nurses
Introduction: Neonatal intensive care units (NICUs) emerge as one of the areas where palliative care is most needed. This study was conducted to examine the attitudes and compassion fatigue levels of NICUs nurses working in Şanlıurfa, where the fertility rate …
Complex end-of-life decision-making during neonatal retrieval: A retrospective cohort study
Aim: The aim of this study was to compare patients referred to our retrieval service who were palliated before transfer, versus those transferred who were palliated within 7 days of birth.
Methods: We conducted a retrospective chart review of infants referred…
Complications and benefits of enteral feeding in children with progressive neurological disease in a palliative care service: a retrospective study
Abstract
Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases, congenital br…
Comprehensive care programmes for children with medical complexity
Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested…
Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis
Objectives: Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their o…
Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit-a Systematic Review
Background: Parental bereavement after the death of an infant in a neonatal intensive care unit (NICU) is a complex and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short- and long-te…
Consumer and provider perceptions of the specialist unit model of care: A qualitative study
Background: Specialist care units cater to targeted cohorts of patients, applying evidence-based practice to people with a specific condition (e.g., dementia) or meeting other specific criteria (e.g., children). This paper aimed to collate perceptions of local…
Continuing bonds in parents after a loss in pregnancy, or a death at or shortly after birth: A population-based study
In this study, we describe continuing bonds and grief reactions and assess their association in 980 parents bereaved in pregnancy, at or shortly after birth. We found that most parents experienced continuing bonds. However, they differed by type of loss. Paren…
Contributing Factors of a Good Death for Children With Cancer From Bereaved Parents' Perspectives in South Korea
Achieving a good-quality death for children with cancer is as paramount as saving their life, given its implications for both the children's end-of-life quality and the grief journey of their parents. This study explored factors contributing to a good death fo…
Coping with Anticipatory Grief: A Qualitative Study of Parents of Children with Advanced Cancer
Background: Anticipatory grief is a common but understudied phenomenon among parents of children with advanced cancer. Appropriate coping with anticipatory grief may promote better adaptation before and after the death.
Objective: To explore the anticipatory …
COVID-19 in pediatric palliative care patients: Multicenter, retrospective cohort study
Background: Studies have shown the risk factors for COVID-19 severity in children, including comorbidities, but information on the infection course in children with life-limiting conditions is sparse. Aim: To describe the effect of COVID-19 on pediatric patien…
Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care
Background: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has explored the…
Cultivating Gratitude in Bereaved Families: Understanding the Impact of the Bereavement Workshop on the Families of Deceased Patients in the Pediatric Palliative Care Program
Abstract
Background
Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care to parent…
"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication
OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is heterogeno…
Death One Hour After Terminal Extubation (DONATE): A Multisite Cohort Study
INTRODUCTION: Predicting time to death after terminal extubation is valuable to augment family counseling and identify suitable candidates for organ donation after circulatory death (DCD). Our objective was to train and validate a machine learning model that p…
Decision-Making Factors in Advanced or Incurable Childhood Cancer Diagnosis in Low- and Middle- Income Countries
Outcomes: 1. Using a structured approach, participants will self-report the ability to understand the static and dynamic factors that influence treatment decision-making at diagnosis for children presenting with advanced cancer in LMICs. 2. Participants will r…
Deepening Clinician Understanding of Family Caregivers' Lived Experiences Caring for Medically Complex Children
Outcomes: 1. Participants will self-report the ability to summarize elements of CMC family caregivers' four "unseen" experiences and justify the need for innovative methods to capture them. 2. Participants will self-report the ability to describe the four qual…
Defining and quantifying population-level need for children's palliative care: findings from a rapid scoping review
BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and future CPC need…
Definition and Assessment of Paediatric Breakthrough Pain: A Qualitative Interview Study
Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. An…
Demographic and clinical profile of children with congenital heart diseases receiving palliative care
Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored.
Method(s): This prospective interventional study was conducted on 100 patients…
DEVELOPING AN EVIDENCE-BASED COMPASSIONATE EXTUBATION PROTOCOL IN AN ASIAN PAEDIATRIC INTENSIVE CARE UNIT
Background Palliative Care in the Intensive Care Unit (ICU) is a new field, with significant advances being made in the past 15 years . These include the establishment of Compassionate Extubation (CE) guidelines, especially since the COVID-19 pandemic saw a su…
Developing a toolkit to support parents' involvement in child death review: an experience-based co-design study
Abstract
Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best to engage …