Abstract
Objectives
This longitudinal cohort study aimed to identify trajectories of parent well-being over the first two years after their child’s evaluation for candidacy for epilepsy surgery, and to identify the baseline clinical and demographic characteristics associated with these trajectories. Parent well-being was based on parent depressive and anxiety symptoms and family resources (i.e., family mastery and social support).
Methods
Parents of 259 children with drug-resistant epilepsy (105 of whom eventually had surgery) were recruited from eight epilepsy centres across Canada at the time of their evaluation for epilepsy surgery candidacy. Participants were assessed at baseline, six-month, one-year and two-year follow-up. The trajectories of parents’ depressive symptoms, anxiety symptoms, and family resources were jointly estimated using multigroup latent class growth models.
Results
The analyses identified three trajectories: an optimal-stable group with no/minimal depressive or anxiety symptoms and high family resources which remained stable over time; a mild-decreasing-plateau group with mild depressive and anxiety symptoms that decreased over time then plateaued, and intermediate family resources which remained stable; and a moderate-decreasing group with moderate depressive and anxiety symptoms that decreased slightly, and low family resources which remained stable over time. Parents of children with higher HRQOL, fathers, and parents who had higher household income were more likely to have better trajectories of well-being. Treatment type was not associated with the trajectory groups but parents whose children were seizure-free at the time of the last follow-up were more likely to have better trajectories (optimally-stable or mild-decreasing-plateau trajectories).
Significance
This study documented distinct trajectories of parent well-being, from the time of the child’s evaluation for epilepsy surgery. Parents who present with anxiety and depressive symptoms and low family resources do not do well over time. They should be identified and offered supportive services early in their child’s epilepsy treatment history.
OCT