Loss of Continuity of Care in Pediatric Neurology Services during COVID-19 Lockdown: An Additional Stressor for Parents

Abstract

Background. This study aimed to investigate the consequence of the COVID 19-related lockdown on the well-being of children with neurological and neurodevelopmental disorders and the repercussion on parental stress during the period 9 March 2020–3 May 2020. Methods. A web-based survey was shared via mail with the parents of children affected by chronic neurologic disorders and neurodevelopmental disorders in the continuity of care in two Italian tertiary centers, independently by the severity of the diseases and the required frequency of controls. For each patient, they were asked to identify a single main caregiver, among the two parents, to fill in the questionnaire. Parental stress was measured via the Perceived Stress Scale (PSS). Statistical analysis was performed with IBM SPSS Statistics version 25. The differences between the clinical groups were performed with one way ANOVA. The dimensional effect of the clinical variables on outcome was evaluated by multiple linear regression analysis. The statistical significance was considered when the p-value was <0.05. Results. The survey was completed by 250 parents (response rate = 48.9 %). Sars-Cov2 infection was reported in two patients only. A total of 44.2% of the patients had completely interrupted school activities while 70% of parents underwent changes in their job modalities. Health care services were disrupted in 77% of patients. Higher PSS scores were detected in the parents of children with neurodevelopmental disorders (p = 0.035). Conclusions. The loss of continuity of care during the lockdown must be considered as a risk factor for parents caring for children with chronic neurologic diseases and neurodevelopmental disorders in further phases of the current pandemic.

The Ketogenic Diet in Children with Epilepsy: A Focus on Parental Stress and Family Compliance

“…This disagreement could be due to the socio-economic changes that have occurred over the last 20 years and to the different perception of the quality of life of the families [ 28 , 29 ]. Furthermore, in this regard, we should also consider that our study was conducted during the COVID-19 pandemic, and this may have been an additional factor that impacted parental stress [ 30 , 31 , 32 ]. Some recent research showed that the COVID-19 pandemic can be a source of parental stress in parents of children and adolescents with various neuropsychiatric conditions, including epilepsy [ 33 , 34 ].…”

Beyond Diagnosis: Preliminary Study of Impact on Children and Parents in Neurodevelopmental Disorders and Juvenile Idiopathic Arthritis-Associated Uveitis

“…Research consistently indicates that parents of children with NDDs frequently report elevated levels of stress, anxiety, sadness, and diminished quality of life in comparison to parents of generally developing children [23,39,[66][67][68][69][70][71][72][73].…”

“…Moreover, the COVID-19 pandemic has intensified the levels of stress experienced by parents of children with neurodevelopmental disorders (NDDs) due to the loss of continuity of care and the impact on the well-being of children with NDDs [23,72].…”

Stress level in parents of children with cerebral palsy.

“…The literature highlights that parents or caregivers of children showing higher PSS scores are likely undergo a clinically significant level of parental stress, necessitating referral to professional care services and potential clinical monitoring. 16 The consequences of enduring heightened and/or persistent parental stress can manifest in both short-term and long-term scenarios, commonly linked to adverse effects on psychological wellbeing, overall quality of life, and the availability of social support for parents. 17,18 Elevated parental stress has the potential to negatively impact the quality of parent-child relationships, feelings of competence, and overall parental well-being.…”