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Seizure disorders and developmental disorders: impact on life of affected families-a structured interview
Ulrike Petra Spindler1, Lena Charlott Hotopp1, Vivien Angela Bach1
1Center for Pediatric Research, University Hospital for Children and Adolescents, Liebigstraße 20a, 04103, Leipzig, Germany.
Insights
Parental burden from childhood seizure and developmental disorders significantly impacts daily life, with combined intellectual disability and seizures causing the most challenges. Many parents reduce work, change homes, or end partnerships due to their child's diagnosis.
Area of Science:
- Pediatric Neurology
- Child Development Studies
- Family Medicine
Background:
- Seizure disorder and developmental disorders are prevalent chronic childhood conditions.
- Limited data exists on the perceived parental burden and daily life impacts of these disorders.
- Parental well-being is crucial for managing chronic childhood conditions.
Purpose of the Study:
- To investigate the perceived parental burden and daily life effects of childhood seizure and developmental disorders.
- To identify specific challenges faced by parents caring for children with these conditions.
- To assess the impact of combined disorders on parental constraints.
Main Methods:
- Structured interviews were conducted with parents of pediatric outpatients diagnosed with seizure or developmental disorders.
- Data was collected from 307 parents of 317 children with various diagnoses including seizure disorder, specific developmental disorder, learning disorder, and intellectual disability.
- Parents reported on daily life constraints, emotional pressure, occupation, partnership, habitation, and financial burden.
Main Results:
- Parents of children with both seizure disorder and intellectual disability reported the highest daily life constraints.
- Over 50% of parents reduced working hours or stopped working; 20% changed habitation; 15% experienced partnership breakups.
- Nearly half of the children were perceived by parents as facing discrimination, including from family and educators.
Conclusions:
- Childhood seizure and developmental disorders significantly alter parental daily life and lead to perceived discrimination against affected children.
- The combination of intellectual disability and seizure disorder imposes the greatest burden on parents.
- Support systems and interventions are needed to mitigate the adverse effects on families managing these chronic conditions.
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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