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Trauma, coping, and adjustment when parenting a child with Dravet syndrome.
Eur J Paediatr Neurol
January 2025
Dravet Syndrome UK, Chesterfield, UK.
Objectives: Dravet syndrome (DS) is a severe developmental and epileptic encephalopathy that requires significant caregiver input across the lifespan. This predominantly falls on parents, who are faced with considerable challenges including physical demands, financial burdens, and sustained pressure on mental wellbeing leading to mental health difficulties. We aimed to develop a grounded theory model for the process of coping and adjustment that occurs when caring for a child who has a diagnosis of DS.
View Article and Find Full Text PDFSleep and breathing in children with Joubert syndrome and a review of other rare congenital hindbrain malformations.
Ther Adv Respir Dis
January 2025
Division of Pulmonary and Sleep Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle Children's Hospital, 4800 Sand Point Way NE, OC 7.730, Seattle, WA 98105, USA.
Background: Joubert syndrome (JS) is an autosomal recessive disorder with a distinctive mid-hindbrain malformation known as the "molar tooth sign" which involves the breathing control center and its connections with other structures. Literature has reported significant respiratory abnormalities which included hyperpnea interspersed with apneic episodes during wakefulness. Larger-scale studies looking at polysomnographic findings or subjective reports of sleep problems in this population have not yet been published.
View Article and Find Full Text PDFAcceptance and commitment therapy group protocol for caregivers of anxious youth: an open trial pilot study.
Front Child Adolesc Psychiatry
September 2024
Department of Psychiatry, University of Massachusetts Chan Medical School, Worcester, MA, United States.
Introduction: Anxiety disorders are common, distressing, and impairing for children and families. Cognitive-behavioral interventions targeting the role of family interactions in child anxiety treatment may be limited by lack of attention to antecedents to parental control; specifically, internal parent factors such as experiential avoidance and cognitive fusion. This pilot study evaluates the preliminary efficacy of a group-delivered caregiver treatment program, ACT for Parents of Anxious Children (ACT-PAC) that targets parental experiential avoidance, cognitive fusion, and child internalizing symptoms.
View Article and Find Full Text PDFBackground: The rollout of the National Disability Insurance Scheme (NDIS) has transformed the Australian funding landscape for individuals with disability and their families. This study examined whether the profiles of autistic children and their families accessing an early intervention (EI) setting have changed following its introduction.
Methods: The cognition and behavioural profiles of children funded under the NDIS ( = 58) were compared to children who had received block government funding (= 58).
A roadmap toward promoting and improving brain health in Europe and closing the awareness and funding gap.
Eur J Neurol
January 2025
Department of Neurology, Inselspital, University of Bern, Bern, Switzerland.
Background And Purpose: The global burden of neurological diseases exceeds 43.1%, imposing a significant burden on patients, caregivers and society. This paper presents a roadmap to reduce this burden and improve brain health (BH) in Europe.
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