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Background: The death of a child due to complex congenital heart disease (CCHD) in pediatric intensive care units profoundly affects families, often resulting in lasting grief and emotional distress. Despite advancements in pediatric palliative care…
Background: Although medical advancements have prolonged survival in Duchenne muscular dystrophy (DMD), it remains a life-limiting diagnosis with numerous challenges. Palliative care is recommended for all patients with DMD, but there is no consensus…
The Surprise Question "Would you be surprised if the patient died in the next 12 months?" lacks pediatric research, particularly in neonatal patients. Our study aims to analyze the Surprise Question's predictive ability in neonates and explore…
Abstract Context: Children with heart disease are at risk for early mortality and parents often perceive suffering at end-of-life (EOL). Involvement of pediatric palliative care (PPC) is a proposed quality measure at the EOL in children with cancer,…
Abstract Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of…
Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years…
Communities use rituals at end of life to foster a peaceful death, ensure passage to the afterlife, and grieve their lost loved ones. Studies report fear of misunderstanding or impeding rituals as a barrier to accepting hospice care. However, there…
Abstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While…
Background: Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians in ACP communication. Objectives: To develop, pilot and evaluate an…
Background: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood…
Context Traditional, complementary, and integrative medicine (TCIM) is being increasingly used to manage symptoms in patients with palliative needs. However, there is a lack of evidence to guide its use in the pediatric palliative care (PPC) setting.…
Background: Working in neonatal intensive care units (NICUs) or pediatric intensive care units (PICUs) entails making difficult decisions about children at the end of their lives that raise significant ethical issues. This review identified the…
Objective Few studies have been carried out in the field of pediatric palliative care concerning the experience of siblings, especially of twins. While some research has highlighted the impact of a child's disease and bereavement on his or her…
Background: Specialised outpatient paediatric palliative care (SOPPC) is vital for young people with life-limiting conditions and telehealth integration might improve this care. Aim: Evaluate the acceptance and challenges of implementing…
Background: Racial disparities in the outcomes of adult community-acquired pneumonia are well described. However, the presence of racial and ethnic disparities in paediatric community-acquired pneumonia and the mechanisms underlying these disparities…
Objective: Children with medical complexity (CMC) have disproportionately high health care utilization and mortality. Goals of care (GOC) discussions improve goal concordance and subjective outcomes for CMC and their caregivers; however, little is…
Objectives: Parents' experiences of loss and grief in the context of caring for a child with life-limiting severe neurological conditions are complex. Supportive interventions delivered by multidisciplinary teams have the potential to mitigate…
Background: Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed…
Abstract Purpose: The purpose of this study was to inform perinatal loss care by expanding upon the five processes of Swanson's Theory of Caring through a holistic lens. Study design and methods: This study was a qualitative content analysis of 34…
Context Little is known about the prevalence of goal-concordant care (GCC) in the NICU and whether it can be measured from chart data. Objectives To determine if GCC can be evaluated using chart data, to identify factors associated with GCC, and to…
Abstract Background: Municipality-based pediatric palliative care (PPC) is recommended to promote the quality of life for the child and family by enabling them to stay at home as much as possible. However, municipality-based PPC presents complex…
Introduction: Patients with congenital heart disease are medically complex and experience high rates of morbidity and mortality. Pediatric palliative care (PPC) supports families navigating complex medical scenarios. This study evaluates the effect…
Purpose: Parents utilize spirituality as a means of coping during and after a child's death. Complexity of grief associated with loss of a child suggests the paramount importance of providing appropriate support for parents while experiencing their…
Background: According to the World Health Organization, palliative care (PC) for children involves actively caring for the child’s health, mind, and spirit and supporting the family. Pediatric palliative care (PPC) is characterized as a…
Background: Pediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting conditions, such as advanced chronic kidney disease (CKD), from the time of diagnosis. However, PPC is not commonly integrated into…
Parenting a seriously ill child is complex and emotionally intense. To further develop Hinds and colleagues? Good Parent themes: ?Keeping a Positive Outlook? and ?Keeping a Realistic Outlook,? we reviewed grounded theories published in English…
Abstract Background/Objectives: Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the…
Aim: The aim of the study was to offer a comprehensive overview about literature on narrative diaries in paediatric palliative care. Methods: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. Results: Among 83…
Background: The parents with a diagnosis of life-limiting fetal condition should receive medical information about the nature of defect, prognosis, possibilities of care and obstetric complications and receive psychological, spiritual, legal support.…
Objectives: Standardised reporting of outcomes in neonatal palliative and/or end-of-life care would facilitate comparison of practice and lead to more informed decisions about practice. We systematically reviewed evidence evaluating outcomes…
Objectives This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to…
Objective: This systematic review and meta-synthesis aimed to explore the experiences of parents making end-of-life decisions in Neonatal Intensive Care Unit (NICU). Methods: We searched nine databases up to December 2023, including qualitative…
Medical and pharmacological advancements have influenced the ability to treat acutely ill neonates. However, complications of prematurity mean that death is unpreventable in some cases. The aim of this study was to explore parents' lived experiences…
Background: The survival of children and adolescents with complex chronic conditions (CCCs) and/or life-limiting or life-threatening conditions (LLCs) is increasing, while estimating their prevalence is complex and limited. This study aims to…
Background: Child neurologists require primary palliative care (PC) skills to care for patients with high symptom burdens and variable prognoses. The existing scope of PC education in child neurology training is unclear. We conducted a national…
Abstract Background Pediatric Palliative Care (PPC) has been shown to offer a wide berth of supportive services for families as they navigate life with pediatric heart disease. PPC assists families in medical decision making, symptom management,…
Abstract Background: This study aimed to identify barriers to paediatric palliative care provision at one Palestinian paediatric hospital, elucidate reasons for the barriers, provide recommendations for enhancing care and identify topics for future…
Background/Objectives: Off-label drug use is prevalent in pediatric care, particularly in pediatric palliative care (PPC), due to the scarcity of pediatric-specific formulations and clinical trials. Differences in perception between healthcare…
Background: Post-traumatic growth (PTG) is a significant factor influencing health outcomes. This research aims to determine the status of PTG and its correlation with resilience, self-compassion (SC) and personal and clinical characteristics in…
Research exploring fathers' experiences of using bereavement photography after perinatal loss is lacking. Using continuing bonds theory, this study aims to investigate fathers'experiences of bereavement photography and predictors of posttraumatic…
