The burden of parenting children with frontal lobe epilepsy

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. Furt...

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Bibliographic Details
Published in:Epilepsy & behavior 2019-08, Vol.97, p.269-274
Main Authors: van den Berg, L., de Weerd, A.W., Reuvekamp, H.F., van der Meere, J.J.
Format: Article
Language:English
Subjects:
Behavior problems
Family stress
Frontal lobe epilepsy
Parental burden
Proxy validity
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Summary: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. 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). 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%. 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. •There is an association between parental burden and externalizing behavioral problems in children with FLE.•Longer duration of epilepsy might be a risk factor for experiencing burden of parenting.•Parents are inconsistent in their reports on behavioral problems in children with FLE.•Besides proxy reports, other ways to obtain information about a child's behavior is needed.
ISSN:1525-5050
1525-5069
DOI:10.1016/j.yebeh.2019.05.034