1 40 1 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1017/S0012162206001629" target="_blank" rel="noreferrer">http://doi.org/10.1017/S0012162206001629</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy Publisher An entity responsible for making the resource available Developmental Medicine And Child Neurology Date A point or period of time associated with an event in the lifecycle of the resource 2006 Subject The topic of the resource Child; Female; Humans; Male; Adult; Parent-Child Relations; Middle Aged; Social Isolation; Severity of Illness Index; Family Health; Stress; adolescent; Preschool; Syndrome; Adaptation; Psychological; Caregivers/psychology; Q3 Literature Search; Chronic disease; Parents/psychology; social support; Psychological/psychology; Epilepsy/nursing/psychology; Seizures/nursing/psychology Creator An entity primarily responsible for making the resource Nolan KJ; Camfield CS; Camfield PR Description An account of the resource The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured interview and 17 completed the Impact of Childhood Neurologic Disability Scale (ICND) questionnaire. Children included 11 males and 13 females aged 2 to 24 years (mean age 10y 2mo [SD 5y 8mo]). Stage 1 of the syndrome was generally very difficult. Uncertainty about the diagnosis was the primary cause of stress. Seizure control was worst during this time. The primary concern in Stage 2 remained seizure control but developmental, behavioral, and sleep issues also emerged. Negative effects were noted in parents' relationships with others. Stage 3 brought better seizure control but decreased cognitive level, increased behavioral problems, and increasing social isolation for parents. Respite and relief care were hard to obtain at each stage. ICND scores mirrored the findings of the interviews. The three stages of Dravet syndrome present serious challenges for parents. Seizures are persistent and severe but developmental, behavioral, and sleep issues add to the stress. In the absence of successful medical treatment for Dravet syndrome, further attention needs to be paid to helping families cope with the disorder. 2006 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/S0012162206001629" target="_blank" rel="noreferrer">10.1017/S0012162206001629</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2006 Adaptation Adolescent Adult Backlog Camfield CS Camfield PR Caregivers/psychology Child Chronic Disease Developmental Medicine and Child Neurology Epilepsy/nursing/psychology Family Health Female Humans Journal Article Male Middle Aged Nolan KJ Parent-child Relations Parents/psychology Preschool Psychological Psychological/psychology Q3 Scoping Review Results Seizures/nursing/psychology Severity Of Illness Index Social Isolation Social Support Stress Syndrome