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01-08-2017 | Original Article

Seizure disorders and developmental disorders: impact on life of affected families—a structured interview

Authors: Ulrike Petra Spindler, Lena Charlott Hotopp, Vivien Angela Bach, Frauke Hornemann, Steffen Syrbe, Anna Andreas, Andreas Merkenschlager, Wieland Kiess, Matthias Karl Bernhard, Thilo Bertsche, Martina Patrizia Neininger, Astrid Bertsche

Published in: European Journal of Pediatrics | Issue 8/2017

Abstract

Seizure disorder and developmental disorder are two of the most common chronic disorders in childhood. Data on perceived parental burden and specific effects on daily life is scarce. We performed a structured interview, consecutively talking to all parents of pediatric outpatients of our university hospital diagnosed with seizure or developmental disorder. Three hundred seven parents (of 317 affected children: 53 with seizure disorder, 44 with specific developmental disorder, 35 with learning disorder, 71 with intellectual disability, 15 with seizure + specific developmental disorder, 23 with seizure + learning disorder, 76 with seizure disorder + intellectual disability) were interviewed. Parents of children with both seizure disorder and intellectual disability stated the highest constraints in daily life, regarding friends, hobbies, emotional pressure, occupation, partnership, habitation, and financial burden. Due to diagnosis of seizure or developmental disorder, 155/307 (51%) parents reduced their working hours/stopped working, 62/307 (20%) changed their habitation, and 46/307 (15%) broke up. As judged by parents, 148/317 (47%) children are being discriminated against, even own family/friends and educators are held responsible.

Conclusion: Parents perceive changes in their daily life and discrimination of their children due to their children’s seizure and developmental disorders. An intellectual disability combined with seizure disorder caused the highest constraint.

What is Known:

• Seizure and/or developmental disorders of children may adversely influence quality of life for affected parents.

• Caring for a child with special health care needs can take complete attention and own parental needs may therefore be difficult to meet.

What is New:

• Two out of three parents stated changes of their daily life such as quitting work, change of habitation, or breakup of partnership due to their child’s diagnosis.

• As judged by the parents, one in two children with developmental disorder of any kind is being discriminated against, even teachers and own family are held responsible.

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Title: Seizure disorders and developmental disorders: impact on life of affected families—a structured interview
Authors: Ulrike Petra Spindler
Lena Charlott Hotopp
Vivien Angela Bach
Frauke Hornemann
Steffen Syrbe
Anna Andreas
Andreas Merkenschlager
Wieland Kiess
Matthias Karl Bernhard
Thilo Bertsche
Martina Patrizia Neininger
Astrid Bertsche
Publication date: 01-08-2017
Publisher: Springer Berlin Heidelberg
Published in: European Journal of Pediatrics / Issue 8/2017
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI: https://doi.org/10.1007/s00431-017-2958-0

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Springer Medicine

Seizure disorders and developmental disorders: impact on life of affected families—a structured interview

Abstract

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Abstract

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