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Introduction: Chronic and end-of-life pain in children is underreported and undermanaged. Current guidelines for pediatric chronic pain include medical and interventional modalities; however, the inclusion of neurosurgical treatments is uncommon and…
Aims To explore the experience of families who have suffered the loss of a child in an Intensive Care Unit. This article specifically describes the experience of the “Good Death”, a concept that has emerged from the discourse of the informants.…
Objectives: The field of pediatric palliative care (PPC) has grown in the last few years because of increased awareness of the unique requirements of children at the terminal stage. In this study, we aimed to analyze the willingness and confidence of…
Despite bringing great strengths and facing substantial health inequities, disabled people remain underserved by health research; addressing this requires multi-level actions spanning all areas of research.
Objectives: To explore health professionals' experiences of contested pediatric brain death/death by neurologic criteria (BD/DNC) cases, including factors contributing to conflict, resource needs and utilization, perceived utility of supports…
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…
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…
Background: Home-based hospice and/or palliative care (HBHPC) is an important pediatric care modality offering continuity of care and a deeper understanding of patient and family needs. There is limited guidance to address multi-faceted approaches to…
Introduction: Pediatric palliative care (PPC) aims to enhance the quality of life of children and families facing serious illness. Subsequently, patient reported outcomes (PRO) are crucial; however, development of valid, useful tools for our field…
Describe the impact of integrating in-person medical interpreters within the interdisciplinary framework of palliative care to support the development of a personalized care plan for non-English speaking families with complex goals of care. For…
In Canada, the provision of Paediatric Palliative Care (PPC) services faces unique barriers due to a large geography and dispersed service population. This review identifies global challenges and strategies to inform efforts in strengthening Canadian…
Background: Communicating with a parent or guardian after their child's death is considered one of the most difficult tasks in medicine. While several frameworks have been developed to aid clinicians when delivering bad news, they are incomplete…
Children with non-curative brain tumors have a predictable and burdensome neurological decline. Care provision for these children falls in the gap where the acute inpatient services intersect with community-based providers. These children commonly…
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…
The shared loss of a child can present challenges to couple relationships as both partners attempt to cope with their own grief and their partner's grief. In this longitudinal qualitative study, five bereaved parent couples participated in 13 total…
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…
INTRODUCTION: Palliative care (PC) was traditionally reserved for children at the end-of-life, but is now widely considered to be essential for optimizing the management of children and families with complex critical illnesses. This pilot study aimed…
Background Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. These challenges are exacerbated by the continued effects on parents’ working lives and the financial strain of…
What does it mean to share an experience of losing a child? Not solely to put such an experience into words, but also to speak of it to others who may share their own experiences of loss? What is shared in such moments of sharing? Here, we present a…
Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care. Methods:…
Background: Nursing documentation within electronic medical records (EMRs) is crucial in paediatric palliative care. Methods: A scoping review was conducted to assess the state of nursing documentation in EMRs following Arksey and O’Malley's…
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: In Europe, resident doctors are not provided with standardized educational modules on pain management (PM) and pediatric palliative care (PPC). Methods: Italian Schools of Residency in Pediatrics (ISRP) were invited to participate in an…
Abstract Background: The PalliPed project is a nationwide, observational, cross-sectional study designed with the aim of providing a constantly updated national database for the census and monitoring of specialized pediatric palliative care (PPC)…
Background The human experience comprises four interconnected dimensions: physical, psychological, social and spiritual. Our spirituality is evidenced in the need to make sense of and find meaning, to feel our lives have purpose, to feel we matter…
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…
Background: Home-based health technologies for paediatric palliative care have great potential to improve care for children, caregivers, healthcare professionals, and health systems. However, no systematic reviews have directly addressed the…
Chronic pain disproportionately affects autistic children and young people, yet they are underrepresented in pain research. Research on psychological, physical, and pharmacological therapies for other conditions suggests modifications are required to…
Objective: To describe children with medical complexity (CMC) in Montana according to their clinical characteristics, rurality, and distance from specialty care, and to assess for disparities in geographic access to specialty care for American Indian…
Abstract Introduction and objective: The article aims to formulate criteria determining the right moment to discontinue life support to a terminally ill child at the end of life. The argument refers to two standards guiding critical decision-making:…
Background: In neonatology, end-of-life and complex ethical issues are frequent. This may lead to experiences of moral distress (MoD) for members of the clinical team. Here, we identify the causes, contributing factors, and contexts of MoD in the…
Background Hope House Children's Hospice supports seriously ill children by offering respite, symptom management and end of life care across their two hospices which cover Shropshire, Cheshire, Powys, and North Wales. Combined the hospice's reach…
Background: Globally, over 21 million children need palliative care each year. Although guidelines exist to support paediatric palliative care delivery, they are not informed by the experiences of children themselves. Objective: We aimed to determine…
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…
Abstract: Palliative care focuses on providing relief from the stress and symptoms of serious illness. Obstetrician gynecologists (OBGYNs) manage a variety of complex clinical situations ranging from delivering a cancer diagnosis to caring for a…
Purpose: This study explores the end-of-life care experiences of pediatric nurses in Turkey. Method: This study was conducted using the phenomenology design, one of the qualitative research designs. A total of 20 nurses participated in the study,…
Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a…
Objectives/Goals: The purpose of this study was to document the publicly available literature, measurement tools, secondary data, and expert perspective on the intersectional care gaps and disparities of children with palliative needs in foster care.…
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/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…
