Browse Items (43 total)

BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. OBJECTIVE(S): This…

Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic…

Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…

Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…

Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We…

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…

Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…

Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

Background/objectives: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics…

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…

Rationale: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their…

Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without…

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning…

OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…

OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses…

Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC…

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three…

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest,…

Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its…

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…

Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases…

The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers,…

BACKGROUND: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are…

Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level…

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental…

Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify…

Background: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we…

OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges…
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