Parenting Stress Index Update:
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Li, S. T., Chiu, N. C., Kuo, Y. T., Shen, E. Y., Tsai, P. C., Ho, C. S., . . . Chen, J. C. (2017). Parenting stress in parents of children with refractory epilepsy before and after vagus nerve stimulation implantation. Pediatrics and Neonatology,58(6), 516-522. doi:10.1016/j.pedneo.2017.03.001
Literature shows that vagus nerve stimulator (VNS) implantation can decrease seizure frequency. However, parenting stress associated with VNS stimulation has not been considered. The purpose of this study was “to evaluate changes in the parenting stress level in parents of children with refractory epilepsy before and after VNS implantation.” Thirty children with refractory epilepsy who underwent VNS implantation were included in the study based on the following inclusion criteria: having received a diagnosis of refractory epilepsy from a pediatric neurologist, having undergone VNS implantation after refractory epilepsy was diagnosed, aged from 1-12 years, and parents having completed the PSI before and at least one year after VNS implantation. In regard to comorbidities, 21 patients had mental retardation, five patients had cerebral palsy, and five patients had autism. Prior to VNS, five patients received 2 types of anticonvulsants, 15 patients received 3 types of anticonvulsants, and 10 patients received 4 or more types of anticonvulsants. Regarding seizure frequency, eight patients had less than 10 seizures per month, 17 patients had 10-100 seizures per months, and five patients had more than 100 seizures per month.
To measure parenting stress, the authors used the Parenting Stress Index long-form (PSI), which is a 94-item questionnaire assessing parenting stress levels. It includes a parent and child domain. The parent domain contains 50 items on seven subscales (competence, role restriction, attachment, depression, health, social isolation, and spouse). The child domain contains 44 items on six subscales (adaptability, mood, distractibility/hyperactivity, demandingness, reinforces parent, and acceptability). Parents respond on a 5-point scale, with 5 representing the most stress.
The initial PSI was completed within the month pre-VNS implantation. The second PSI was given at least 12 months post-VNS implantation. Mean time interval between first PSI measurement and VNS implantation was 14.9 days. Mean time interval between VNS implantation and second PSI measurement was 18.2 months. The highest mean scores for parent domain subscales were for spouse, role restriction, and health. The highest mean scores for the child domain subscales were for acceptability, demandingness, and distractibility/hyperactivity. The mean total PSI scores decreased from 282.1 (which is higher than the 90th percentile of Taiwan validation sample) to 272.4 (less than 90th percentile). This decrease was not statistically significant (p=0.193). Scores for all parent domain subscales decreased except for competence. Scores for four of six child domain subscales decreased. The most noticeable changes were in spouse (p = 0.034) and role restriction (p = 0.149) subscales, but did not achieve statistical significance. PSI scores decreased most in parents of males, parents of children without autism, and parents of children who did not taper off the number of anticonvulsant types. However, no predictive factor was found for PSI score change for child’s gender, autism comorbidity, or tapering of anticonvulsants after MANOVA analysis. After analysis, no association was found between tapering off number of anticonvulsant types and seizure reduction rate. Ratio of seizure frequency pre- to post-VNS implantation achieved a significant difference (p = 0.037), with fifteen patients having 50-100% seizure frequency reduction rate, and a 42.6% overall seizure frequency reduction rate.
Strengths of this study include the fact that it was a longitudinal prospective study, and that it provides data for changes in parental stress following VNS implantation. This study was limited by the sample size being too small to analyze types and etiology of epilepsy. Furthermore, no association was found between reduction of seizure frequency and tapering off of anticonvulsants, as anticipated. Finally, this version was validated in 1362 Taiwanese children and may not be as applicable to western countries, as parent-child relationships and upbringings may vary.
Although not significantly different, overall PSI scores decreased 12 or more months after VNS implantation, implying that overall parental stress decreased following implantation. This decrease in stress was seen especially in parents of: boys, children without autism, and children who did not reduce the number of anticonvulsant types used. For the parents whose stress did not decrease as much, comorbidities or tapering off of medication types may act to negate the positive stress effects of VNS implantation. Furthermore, seizure frequency decreased following VNS implantation, leading one to believe the VNS implantation is a safe and effective method for resolving refractory epilepsy.