The Impact of Caring for Children With Severe Neurological Impairment on Clinicians.

Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%).

Forming Clinician-Parent Therapeutic Alliance for Children With Severe Neurologic Impairment.

Objectives: Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance are often lacking. This study aimed to examine aspects important to developing therapeutic alliance between clinicians and parents of children with SNI.

From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically.

Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically.

Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.

Context: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology and/or surgery, goals of care and/or advance care planning, or transitions of care.

Objectives: This study describes the experiences of parents of children with SNI during decision-making.

Severe Neurological Impairment: A delphi consensus-based definition.

Background: Severe Neurological Impairment (SNI) is a term for which there is no consistently used definition. This may hamper consistency in the reporting of research in the area and communication between professionals involved in the care of those with SNI.

Objective: We aimed to create an international, multidisciplinary, consensus-based definition of SNI.

Initial Validation of GRASP: A Differential Diagnoses Algorithm for Children With Medical Complexity and an Unknown Source of Pain.

Objectives: Identifying the source of pain for children with medical complexity (MC) is challenging. The purpose of this study was the initial validation of a tool to guide the medical evaluation for identifying the source of pain in children with MC by using differential diagnoses. The tool is entitled Guidelines for Ruling Out and Assessing Source of Pain (GRASP).

Chronic Pancytopenia due to Centrally Mediated Hypothermia in Two Children with Severe Neurological Impairment.

We report on recurrent pancytopenia over five years in two children with severe impairment of the central nervous system. Assessment by hematology did not identify an etiology, including bone marrow biopsy in one. Both patients had sustained normalized blood cell counts following interventions to maintain or return to a temperature above 33 °C.

Feeding Intolerance in Children with Severe Impairment of the Central Nervous System: Strategies for Treatment and Prevention.

Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms include constipation and gastroesophageal reflux disease. There is growing awareness of sources due to the impaired nervous system, including visceral hyperalgesia due to sensitization of sensory neurons in the enteric nervous system and central neuropathic pain due to alterations in the thalamus.

Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System.

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment.

Gabapentin Use in the Neonatal Intensive Care Unit.

Gabapentin was used for the treatment of term and preterm infants with suspected visceral hyperalgesia caused by a variety of neurologic and gastrointestinal morbidities. Improved feeding tolerance and decreased irritability were seen, as well as decreased usage of opioids and benzodiazepines. Adverse events occurred with abrupt discontinuation of this medication.

Gabapentin for management of recurrent pain in 22 nonverbal children with severe neurological impairment: a retrospective analysis.

Background: Children with severe impairment of the central nervous system (CNS) have a high incidence of distressing symptoms, with many experiencing frequent recurrent pain episodes.

Objective: The study objective was to describe presenting pain behaviors, daily dose, and response to gabapentin for the management of frequent recurrent pain in this population.

Methods: A retrospective analysis was performed with data from 22 children with severe impairment of the CNS residing at a long-term care facility, treated with gabapentin for recurrent pain behaviors.

Treating dyspnea with morphine sulfate in nonverbal children with neurological impairment.

Children with severe neurological impairment (NI) are at risk for recurrent respiratory illness with risk for associated distressing respiratory symptoms as respiratory exacerbations become more frequent. Evidence for treating dyspnea in adults with severe pulmonary disease offers interventions for consideration, including morphine sulfate. This case series of four individuals with severe NI reviews the benefit from morphine for respiratory distress.

Supportive and palliative care of children with metabolic and neurological diseases.

Purpose Of Review: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases.

Recent Findings: There is a growing body of literature in PPC, though it remains limited for children with metabolic and neurological diseases. Evidence indicates the benefit of PPC.

Treatment with gabapentin associated with resolution of apnea in two infants with neurologic impairment.

Background: Infants with neurologic impairment (NI) as a result of injury to the central nervous system have a significant rate of pain. Problems associated with pain in children with NI include increased tone. This secondary hypertonia may contribute to apnea as a result of alterations in airway tone and chest wall movement.

Educational needs assessment, development of learning objectives, and choosing a teaching approach.

Background: How physicians are evaluated throughout their careers and how training programs are accredited has shifted from demonstrating what we teach and what we are learning to demonstrating the achievement of competence.

Discussion: This article discusses some of the components involved with determining and providing necessary educational experiences. These steps apply to various educational needs and settings such as development of curriculum for training programs, clinical staff development, courses in continuing medical education, and identifying learning needs throughout practice.

Pediatric palliative care.

Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions.

Central hypothermia as a cause of acute pancreatitis in children with neurodevelopmental impairment.

Children with severe neurodevelopmental impairment are at risk for recurrent hypothermia, defined as a temperature of less than 35 degrees C, as a result of hypothalamic dysfunction. Acute pancreatitis following hypothermia from environmental exposure or induced as medical therapy has been reported in adults. In this case series of 10 children (six males, four females) with severe neurodevelopmental impairment and associated hypothermia, five had an episode of acute pancreatitis.