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The burden of parenting children with frontal lobe epilepsy
L van den Berg1, A W de Weerd2, H F Reuvekamp2
1Stichting Epilepsie Instellingen Nederland, Postbus 563, 8000 AN Zwolle, Netherlands; RijksUniversiteitGroningen, Faculteit Gedrags- & Maatschappijwetenschappen, Klinische & Ontwikkelingsneuropsychologie, Grote Kruisstraat 2/1, 9712 TS Groningen, Netherlands.
Insights
Parenting children with frontal lobe epilepsy (FLE) can be challenging, with externalizing behaviors linked to parental burden. Longer epilepsy duration may increase this burden, highlighting the need for targeted support.
Area of Science:
- Neuroscience
- Child Psychology
- Parenting Studies
Background:
- Parenting a child with a chronic illness, such as frontal lobe epilepsy (FLE), introduces unique stressors beyond typical parenting challenges.
- Problem behaviors in children, particularly externalizing behaviors, are frequently associated with increased parental burden.
Purpose of the Study:
- To investigate the parental burden experienced by parents of children with FLE.
- To examine the relationship between parental burden and the behavioral problems reported in children with FLE.
Main Methods:
- Thirty-one parents of children with FLE completed validated questionnaires assessing behavioral problems and parenting burden.
- Validity scales (Negativity and Inconsistency) from the Behavioral Rating Inventory of Executive Function (BRIEF) were used to assess parent report consistency.
Main Results:
- Parents of children with FLE diagnosed for over 5 years reported higher burden on specific scales ('Child is a burden') compared to controls.
- 'Child is a burden' significantly predicted scores on Child Behavior Checklist (CBCL) and BRIEF scales (20-49%).
- A notable 45% of parents showed inconsistency in their ratings, while only 6% scored in the clinical range for negativity.
Conclusions:
- Parental burden in FLE is not universally excessive but may increase with longer epilepsy duration.
- A significant link exists between parental burden and child behavioral problems, especially externalizing behaviors.
- Parental reports can be inconsistent, suggesting potential challenges in accurately assessing burden and behavior.
Objective:
Caring for a child with a chronic illness adds stress to the typical parenting stress in healthy developing children. This stress can place a heavy burden on parents and may increase when a child displays problem behavior. In general, parenting and child's behavior problems are associated. Furthermore, externalizing (more outgoing) behavior is reported frequently in children with frontal lobe epilepsy (FLE). Therefore, in this study, we first investigated the burden of parents of children with FLE, and second, we investigated the relation between the experienced burden and reported behavioral problems. The validity of parents' reports on proxy measures as well as duration of epilepsy is taken into account.
Methods:
Thirty-one parents of children with FLE completed validated questionnaires about behavioral problems and burden of parenting. To examine if parents tend to be inconsistent or unusually negative, we used the two validity scales of the Behavioral Rating Inventory of Executive Function (BRIEF) (Negativity and Inconsistency).
Results:
Only parents of children with FLE who have had epilepsy for 5 years or longer report more problems on the Nijmeegse Vragenlijst voor de Opvoedingssituatie (NVOS) subscales 'Able to manage', 'Child is a burden', and 'Good Interaction' compared with the healthy controls. The subscale 'Child is a burden' significantly predicts scores in about 20% to 49% on the main scales of the Child Behavior Checklist (CBCL), the Global Executive Composite (GEC), and Behavioral Regulation Index (BRI) of the BRIEF. Only 6% of parents scored in the clinical range of the negativity scale of the BRIEF. For the inconsistency scale, this was 45%.
Conclusion:
Parents of children with FLE do not report excessive parental burden. Longer duration of epilepsy might be a risk factor in experiencing burden. The findings suggest a link between parental burden and behavioral problems in children with FLE. Externalizing behavioral problems are the most marked behavioral problems, which relate to the parental burden. Parents tend to be inconsistent in their ratings.
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