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

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European Journal of Pediatrics Aims and scope Submit manuscript

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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Abbreviations

c.:

coefficient

DQ:

developmental quotient = [developmental age/chronological age] × 100

ICD-10-GM:

International Statistical Classification of Diseases and Related Health Problems, 10th revision, German Modification

ID:

intellectual disability

IQ:

intelligence quotient

LD:

learning disorder

SD:

seizure disorder

SDD:

specific developmental disorder

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Acknowledgements

We thank all participating parents for taking the time to take part in the interview. Additionally, we thank PD Dr. Benjamin R. Auer for his statistical advice and Lena Schrader for the language editing of the manuscript.

Authors’ contributions

Ulrike P. Spindler designed the study protocol, developed the questionnaire, performed the questionnaire survey, the statistical analysis, and the interpretation of the data, and prepared the manuscript.

Lena C. Hotopp was involved in the design of the study protocol and the development of the questionnaire, performed the questionnaire survey, and proof read the manuscript.

Vivien A. Bach was involved in the development of the questionnaire, performed the questionnaire survey, and proof read the manuscript.

Frauke Hornemann supported the development of the questionnaire and the recruitment of patients and proof read the manuscript.

Steffen Syrbe supported the development of the questionnaire and the recruitment of patients and proof read the manuscript.

Anna Andreas supported the interpretation of data of psychological assessments and proof read the manuscript.

Andreas Merkenschlager supported the development of the questionnaire and the recruitment of patients and proof read the manuscript.

Wieland Kiess supported the development of the questionnaire and proof read the manuscript.

Matthias K. Bernhard supported the development of the questionnaire and the recruitment of patients and proof read the manuscript.

Thilo Bertsche was involved in the development of the study protocol and the questionnaire and was involved the interpretation of data and proof read the manuscript.

Martina P. Neininger was involved in the development of the questionnaire, performed the statistical analysis and the interpretation of the data, and proof read the manuscript.

Astrid Bertsche designed the study protocol, was involved in the development of the questionnaire, supervised the questionnaire survey, the recruitment of patients, and the statistical analysis, performed the interpretation of data, and critically reviewed and revised the manuscript.

Author information

Authors and Affiliations

  1. Center for Pediatric Research, University Hospital for Children and Adolescents, Liebigstraße 20a, 04103, Leipzig, Germany

    Ulrike Petra Spindler, Lena Charlott Hotopp, Vivien Angela Bach, Frauke Hornemann, Steffen Syrbe, Anna Andreas, Andreas Merkenschlager, Wieland Kiess, Matthias Karl Bernhard & Astrid Bertsche

  2. Department of General Pediatrics, Division of Child Neurology and Inherited Metabolic Diseases, Center for Pediatrics and Adolescent Medicine, University Hospital Heidelberg, Im Neuenheimer Feld 430, 69120, Heidelberg, Germany

    Steffen Syrbe

  3. Drug Safety Center and Department of Clinical Pharmacy, Leipzig University, Brüderstr. 32, 04103, Leipzig, Germany

    Thilo Bertsche & Martina Patrizia Neininger

Authors
  1. Ulrike Petra Spindler
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  2. Lena Charlott Hotopp
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  3. Vivien Angela Bach
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  6. Anna Andreas
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  10. Thilo Bertsche
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  11. Martina Patrizia Neininger
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  12. Astrid Bertsche
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Corresponding author

Correspondence to Astrid Bertsche.

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Funding

This study received no particular funding.

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study described has been carried out in accordance with abovementioned standards and has been approved by the institutional ethic committee.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Communicated by Peter de Winter

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Spindler, U.P., Hotopp, L.C., Bach, V.A. et al. Seizure disorders and developmental disorders: impact on life of affected families—a structured interview. Eur J Pediatr 176, 1121–1129 (2017). https://doi.org/10.1007/s00431-017-2958-0

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  • DOI: https://doi.org/10.1007/s00431-017-2958-0

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