Zobrazeno 1 - 10
of 15
pro vyhledávání: '"Erin, Beavis"'
Autor:
Suzanne M. Nevin, Claire E. Wakefield, Ann Dadich, Fleur LeMarne, Rebecca Macintosh, Erin Beavis, Rani Sachdev, Ann Bye, Kenneth Nunn, Elizabeth E. Palmer
Publikováno v:
PEC Innovation, Vol 1, Iss , Pp 100014- (2022)
Objective: To understand parents' of children with developmental and epileptic encephalopathies needs and preferences for psychological resources. Methods: Using a person-based approach, a multidisciplinary panel of clinician and researchers (n = 9)
Externí odkaz:
https://doaj.org/article/fb656a0c8d884597b7d2d91ffcd2bb03
Autor:
Stephanie Best, Elizabeth E Palmer, Lauren Kelada, Rani Sachdev, Eden G Robertson, I Goranitis, Natalie Grainger, Fleur Le Marne, Kristine Pierce, Suzanne M Nevin, Rebecca Macintosh, Erin Beavis, Annie Bye
Publikováno v:
BMJ Open, Vol 12, Iss 10 (2022)
Introduction Developmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate informati
Externí odkaz:
https://doaj.org/article/eeb167524d8c4a76ac03283cc48a346f
Autor:
Elizabeth E Palmer, Rani Sachdev, Erin Beavis, Rebecca Macintosh, Fleur A Le Marne, Suzanne M Nevin, Ann ME Bye, Kenneth Nunn
Publikováno v:
Journal of Paediatrics and Child Health. 58:1718-1721
This is the first of three articles exploring the aspects of clinical care for children with rare neurological disorders including uncertainties old and new. The disruptive technologies of genomic sequencing and advanced therapeutics such as gene-bas
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8b352541aa05013a34dbf79e138e54a7
https://doi.org/10.1111/jpc.16165
https://doi.org/10.1111/jpc.16165
Autor:
Suzanne M Nevin, Erin Beavis, Rebecca Macintosh, Elizabeth E Palmer, Rani Sachdev, Fleur A Le Marne, Ann ME Bye, Kenneth Nunn
Publikováno v:
Journal of paediatrics and child healthReferences. 58(10)
This is the second of a three-part series that explores different aspects of uncertainty, certainty and hope in the context of providing clinical care for children with rare and life-limiting neurological disorders. When caring for families impacted
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::cb2de77fa5064cb7482e924306605551
https://pubmed.ncbi.nlm.nih.gov/36069627
https://pubmed.ncbi.nlm.nih.gov/36069627
Autor:
Ann ME Bye, Fleur A Le Marne, Erin Beavis, Rebecca Macintosh, Suzanne M Nevin, Elizabeth E Palmer, Rani Sachdev, Kenneth Nunn
Publikováno v:
Journal of paediatrics and child healthReferences. 58(10)
This is the third article of a three-part series and addresses how clinicians provide hopefulness meaningfully to families coping with life-limiting and quality of life impairing neurological conditions. The first two articles addressed the enormous
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::74267c5cef40cdf7da5c4eeac07f4def
https://pubmed.ncbi.nlm.nih.gov/36062939
https://pubmed.ncbi.nlm.nih.gov/36062939
Autor:
Eden G Robertson, Lauren Kelada, Stephanie Best, I Goranitis, Natalie Grainger, Fleur Le Marne, Kristine Pierce, Suzanne M Nevin, Rebecca Macintosh, Erin Beavis, Rani Sachdev, Annie Bye, Elizabeth E Palmer
Publikováno v:
BMJ Open. 12:e063249
IntroductionDevelopmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate informatio
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::832da4657834cff76d283206a6c6b14f
https://doi.org/10.1136/bmjopen-2022-063249
https://doi.org/10.1136/bmjopen-2022-063249
Autor:
Suzanne M. Nevin, Claire E. Wakefield, Fleur Le Marne, Erin Beavis, Rebecca Macintosh, Rani Sachdev, Ann Bye, Elizabeth E. Palmer, Kenneth Nunn
Publikováno v:
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society. 37
Developmental and epileptic encephalopathies (DEEs) are chronic and life-threatening conditions, frequently with a genetic basis and infantile-onset. Caregivers often experience enduring distress adapting to their child's diagnosis and report a defic
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::75702b8a339da50d0c65f7341a9b9313
https://pubmed.ncbi.nlm.nih.gov/35240556
https://pubmed.ncbi.nlm.nih.gov/35240556
Autor:
Fleur A Le Marne, Jane Ho, Richard Baker, Susan Towns, Claire Gaskin, Erin Beavis, Anne M.E. Bye
Publikováno v:
Journal of Paediatrics and Child Health. 55:819-825
Aim To implement and appraise a new model of care in terms of: patient experience, knowledge of epilepsy, readiness for transition and emotional and behavioural support in a new purpose-built facility for adolescents and young adults. Methods The new
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::b4f6a54c47a4da150589160ee5e7432b
https://doi.org/10.1111/jpc.14301
https://doi.org/10.1111/jpc.14301
Publikováno v:
Journal of Clinical Neuroscience. 50:214-220
The study aimed to comprehensively evaluate a mobile application (EpApp), designed with stakeholder input, to educate and facilitate management of adolescents with epilepsy. A prospective cohort of adolescents with epilepsy (13–19 years) and their
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::3214b49fb09430c1ac07397f25c437dd
https://doi.org/10.1016/j.jocn.2018.01.065
https://doi.org/10.1016/j.jocn.2018.01.065
Publikováno v:
Journal of Paediatrics and Child Health. 51:704-707
Aim This study aims to explore carer perceptions of training in out-of-hospital use of buccal midazolam for emergency management of seizures. Methods A random sample of 100 families (from n = 198) who underwent training at the Sydney Children's Hospi
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::30a1529b09adf98fcd18ff3af329179e
https://doi.org/10.1111/jpc.12811
https://doi.org/10.1111/jpc.12811