Objective Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents� and young adults� ways of…
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with…
BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer…
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this…
PURPOSE: We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate…
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet,…
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how…
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative…
OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement…
BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS:…
Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care…
Background: Here we present additional information from the Safe Passage Study, where the effect of alcohol exposure during pregnancy on sudden infant death syndrome and stillbirth was investigated. Objective: To explore bereaved mothers' attitudes…
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to…
BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for…
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness…
AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family.…
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…
IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the…
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…
OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…
Background Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use…
Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.
Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and…
Introduction: Despite significant advances in disease treatment, resources for the pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. The obstacles to provide optimal PPC include inadequate funding,…
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why…
Background: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care,…
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Nurses and healthcare professionals may have difficulty adjusting to and comprehending their experiences when a patient's life ends. This has the potential to interfere with patient care. Reflection on past events and actions enables critical…
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of…
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU…
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased…
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness,…
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and…
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed…
