Clinical focus

Severe Neurological Impairment

Everything on the hub tagged Severe Neurological Impairment: researchers, groups, current studies, resources and published literature together.

40 results

Researchers

Dr Emily Harrop

Helen & Douglas House · United Kingdom

Najiya P

National institute of mental health and neuroscience · India

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Published literature

Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative, Exploratory Study

Holsti L, England S, Gibson M, McWilliams B, Hermansen A, Siden H · Children · 2024

A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care

Lewis H, Trowbridge A, Jonas D, Rosenberg A, Bogetz J · Journal of palliative medicine · 2022

Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care

Lindley L · The American journal of hospice & palliative care · 2018

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

Ribbers S, Wager J, Hartenstein-Pinter A, Zernikow B, Reuther M · Palliative Medicine · 2019

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis-A multicenter prospective study

Pelke S, Wager J, Claus B, Zernikow B, Reuther M · Palliat Med · 2020

Development of a parent survey to identify children with severe neurologic impairment and distress

Herold B, Dussel V, Hauer J, Requena M, DeCourcey D, Avery M, Snaman J, Wolfe J · Journal of Pain and Symptom Management · 2026

Effect of Permanent Feeding Tube Placement on Healthcare Utilization Among Children with Neurologic Impairment (TH340A)

Nelson K, Rosella L, Mahant S, Guttmann A, Cohen E · Journal of Pain and Symptom Management · 2018

Epilepsy in Paediatric Palliative Care: Prevalence, Clinical Correlations and the Development of a Consensus-Based Seizure Management Protocol

Hizanu Dumitrache M, Salim C, Plesea-Condratovici A, Mindru D, Duceac Covrig M, Elkan E, Cristescu Budala C, Gurzu I, Moraru P, Matasaru M, Matei M, Duceac L · Medicina (Kaunas, Lithuania) · 2026

Feasibility and Acceptability of Remote Music Therapy for Cognitively Impaired Children Receiving Palliative/Complex Care and Their Families

Akard T, Dietrich M, Gilmer M, Lense M, Hills T, Hendricks-Ferguson V · Journal of palliative medicine · 2026

Finding comfort in complexity: The role of palliative care in children with leukodystrophy

Bishop C, Nguyen V, D'Souza T, Yu D, Johnson L, Keller S · Molecular Genetics and Metabolism · 2026

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

Bogetz J, Lewis H, Trowbridge A, Jonas D, Hauer J, Wilfond B · J Palliat Med · 2021

Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: A single-centre retrospective review

Collins A, Mannion R, Broderick A, Hussey S, Devins M, Bourke B · BMJ Paediatrics Open · 2019

"Golden" moments and more in grief talk: Healthcare professionals' approaches to discussing loss and grief with parents of children with severe neurological impairment

Brennan E, Guerin S · Palliative Medicine · 2026

Healthcare professionals' discussion of loss and grief with parents of children with life-limiting severe neurological impairment: Findings from a scoping review

Brennan E, Clarke M, Guerin S · Palliative & supportive care · 2025

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling

Bogetz J, Munjapara V, Henderson C, Raisanen J, Jabre N, Shipman K, Wilfond B, Boss R · Dev Med Child Neurol · 2022

How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities

Zaal-Schuller I, Willems D, Ewals F, van Goudoever J, de Vos M · Res Dev Disabil · 2016

"I Don't Have to Say That They Are Dying Now": Professionals' Perspectives on Death-Related Communication With Children and Young People With Intellectual Disabilities in Paediatric Palliative Care in Germany

Bonin M, Taubner H · Journal of applied research in intellectual disabilities : JARID · 2025

Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service

Katz N, Cooper M, Kularatne A, Prebble A, McGrath K, McCallum Z, Antolovich G, Sutherland I, Sacks B · The American journal of hospice & palliative care · 2023

Involvement of nurses in end-of-life discussions for severely disabled children

Zaal-Schuller I, Willems D, Ewals F, van Goudoever J, de Vos M · Journal of Intellectual Disability Research. · 2018

Losing a child with a severe developmental intellectual disability: Israeli mothers' accounts

Mahat-Shamir M, Huri-Rotman S · The American journal of orthopsychiatry · 2025

Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases

Saraiva B, Santos S, Ferreira A, Paiva M · Endocrine, metabolic & immune disorders drug targets · 2023

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

Hauer J, Houtrow A · Pediatrics · 2017

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study

Friedrichsdorf S, Postier A, Andrews G, Hamre K, Steele R, Siden H · J Pain Res · 2017

Palliative Care in Children with Severe Neurological Impairment: The PediQUEST Refine Case Series

Snaman J, Requena M, Avery M, Herold B, Balossi M, DeCourcey D, Hauer J, Dussel V, Wolfe J · Journal of pain and symptom management · 2026

Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment

Feinstein J, Feudtner C, Blackmer A, Valuck R, Fairclough D, Holstein J, Gregoire L, Samay S, Kempe A · JAMA Network Open · 2020

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

Bogetz J, Trowbridge A, Lewis H, Shipman K, Jonas D, Hauer J, Rosenberg A · J Pain Symptom Manage · 2021

Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families

Bogetz J, Lemmon M · Journal of Pain and Symptom Management. · 2021

Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review

Nguyen L, Bootsma J, Di Rezze B, Jack S, Ketelaar M, Gorter J · BMJ Open · 2021

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Bogetz J, Oslin E, Barton K, Trowbridge A, Yi-Frazier J, Watson R, Rosenberg A · Journal of Palliative Medicine · 2024

Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review

Gardiner E, Wong V, Lin G, Miller A · BMC Health Services Research · 2022

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

Bogetz J, Trowbridge A, Jonas D, Root M, Mullin J, Hauer J · Clin Pediatr (Phila) · 2022

The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin

Rizakos S, Parmar A, Siden H, Orkin J · Journal of Pain and Symptom Management · 2021

The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.

Marsh L, Brown M, McCann E · Journal of clinical nursing · 2020

Thoughtfulness and Grace: End-of-Life Decision Making for Children With Severe Developmental Disabilities

Jones P · The American journal of bioethics : AJOB · 2016

'Total Pain' in Children with Severe Neurological Impairment

Warlow T, Hain R · Children (Basel) · 2018

Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study

Santini A, Marinetto A, Papadatou D, Benini F · Children (Basel, Switzerland) · 2026

Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study

Pelke S, Wager J, Claus B, Stening K, Zernikow B, Reuther M · Children (Basel) · 2021

Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU

Duval C, Porcheret F, Toulouse J, Alexandre M, Roulland C, Viallard M, Brossier D · Archives de pediatrie : organe officiel de la Societe francaise de pediatrie · 2023

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