Table 1.
Themes and specific examples of the burdens created by seizures
| General theme | Examples |
|---|---|
| Immediate consequences of a seizure | Death/SUDEP Need for rescue medications; Trips to the emergency department; Hospital admission; Injuries to the child |
| Effects on the child of seizures and seizure medications | Developmental and intellectual delays; Regression in skills following a seizure; Small seizures can have a big impact; Medication side effects on appetite; Sleepiness from seizures and seizure medications; Illness susceptibility after seizures (pneumonia); Effects of seizures and of treatment on behavior; Effects of comorbidities difficult to sort out from effects of behavior |
| Educating others to provide appropriate care for child | Always quarterbacking; Hard to leave child with others who cannot provide adequate care; Trusting other you don't know; Educating providers, EMT, ED, others |
| Time to manage medical care and related tasks | Cleaning up after a seizure; Managing all the prescriptions, memorizing the medication schedules; Making appointments, calling pharmacies; Taking child to multiple appointments; Time at doctors’ offices and laboratories; Keeping track of everything (seizure counts…); Struggling with insurance companies and advocating for what child needs |
| Medical decisions that parents need to make. | What are the next steps? Making the best decision with limited or no information; Making a tough decision when risks are associated with any choice; Having to make tough decisions about surgery; Diet, and alternative therapies; Balancing quality of life versus seizure control; Chronic negotiations concerning challenging parenting decisions |
| Impact on the child's quality of life | How much does the child understand? Mental health of the affected child Inability to partake in age‐appropriate activities; Missing activities and school because of seizures or appointments; Isolation of the child from typical peers |
| Impact on siblings | Social reaction of others to seizures rubs off on other siblings; Child's seizures and other needs take away from time spent with other children in the family; Abandonment; Emotional support; Mental health depression; Sibs take on responsibility, grow up too fast. |
| Impact on family | Missing out on family functions (weddings, etc.); Adverse effects on immediate and extended family dynamics; Isolation from others emotionally and socially; Having extra people in the house to help with child (eg, nurses) alters family life |
| Impact on caregiver | Injuries to caregiver as a result of seizures, lifting, or aggressive behaviors; Guilt because of sacrifices other family members have to make, for not preventing more seizures, for never doing enough, for having missed something; Fear that child would die and fear that child would outlive parent; Grieving for what might have been; Health of the caregiver, no time for self‐care; No outlets; Emotional/psychological stress, PTSD; Caregiver isolation, loneliness, decreased sociability; Not free to do as pleases (constrained); Sleep deprivation, brain fog; Stress on marriage, high divorce rate; Lack of support from others and isolation from (family, friends) |
| 24‐7‐52 | Constant fear and anxiety waiting for the next seizure; Fear of SUDEP; Constantly on high alert, can never be off duty; Tracking child nonstop; Nonstop care needed everyday; Always having to be prepared, multiple contingency plans; Tracking seizures and identifying seizure patterns; Exhaustion; Hard to plan life |
| Future | Identifying educational expectations; Fear of the unknown; Transition and guardianship; Legal concerns with financial planning; What happens when I'm gone? DNR (Do Not Recussitate) decisions |
| Financial | Financial strain due to high cost of care, including hospitalizations; Lack of resources for immediate care during challenging times; Missed work due to child's seizures; Missed career opportunities |
| Social reactions of others | Reactions of others to child having seizures or child's behavior; School‐aged peers’ ability to cope with watching a friend have seizures; Fear of child by others; Social impact of having a seizure around friends or strangers; Neighbors woken up in night by ambulance |