Browse Items (222 total)

Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental…

OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and…

OBJECTIVE: To implement an "Empathy Workshop" focused on improving Neonatal Intensive Care Unit (NICU) health care provider communication skills. METHODS: Staff-led, small group "Empathy Workshops" were conducted over a 2 year period. NICU parents…

CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this…

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care,…

Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…

Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based…

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

Decision-making surrounding extracorporeal membrane oxygenation initiation and decannulation has become a key challenge in critical care. Nuanced communication skills and transparent discussions about prognosis are imperative during this lifesaving,…

OBJECTIVES: Pediatric extracorporeal membrane oxygenation is associated with significant morbidity and mortality. We sought to summarize literature on communication and decision-making, end-of-life care, and ethical issues to identify recommended…

AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS:…

Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs…

BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative…

OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate…

CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…

Dying –or the possibility of death— is not a topic often addressed in modern medicine, especially in paediatrics. But when parents and children are faced with a life-threatening condition, difficult decisions may arise. How do parents and physicians…

To gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We…

Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis…

Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in…

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not…

Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences…

OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We…

CONTEXT: The relationship between quality of Goals of Care (GOC) conversations and moral distress among NICU providers is not known. OBJECTIVES: We sought: 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress…

Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial…

BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be…

Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children,…

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these…

BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration…

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…

Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.…

Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental…

BACKGROUND: Poor communication between patients and providers can lead to misunderstanding and misclassification of clinical information, including pregnancy outcomes by women. This qualitative study with maternity care providers explores…

Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers…

Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and…

INTRODUCTION: Despite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals…

OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and…

Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for…

The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their…
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