Table 6 Key impacts on ADLs of caregivers with example quotes

Altering daily behavior (n = 16; 57.1%

Must be more mindful (n = 10; 35.7%)

“It’s something that you just have to be mindful of and always, you know I guess on guard, and watch her. Like I usually hook my foot, like, around her chair, because if she has a seizure she can push back on her f-, with her feet, and like you know, flip the chair and go.” (Caregiver of 19-year-old female)

Constant reminding of patient (n = 3; 10.7%)

“It impacts a lot because you know, if I forget, then she could ultimately miss something important. Like she had something, uh, yesterday, she had an appointment, and I forgot to remind her about it, forgot to do the pre-work for it, so, you know, consequently she missed it.” (Caregiver of 22-year-old female)

Avoid triggering behaviors (n = 3; 10.7%)

“It’s a pretty cruel symptom to have [seizures] because it happens as you may or may not know, it, it happens in the context of laughter, and so what you inevitably end up doing is trying to sort of avoid making him laugh, and you know, that’s pretty horrible situation for an eight year old that, you, you know, you just, you’re a killjoy the whole time.” (Caregiver of 8-year-old male)

Additional caregiving required (n = 16; 57.1%)

Supervision of meals (n = 10; 35.7%)

“Somebody has to be with him all the time when he’s eating and kind of monitor him. Um, yeah, just, just monitoring his eating.” (Caregiver of 16-year-old male)

Extra time needed to help patient (n = 5; 17.9%)

“Um, well it’s, like, in the morning I feel like I, you know, have to get two people ready versus me. You know, it’s a little bit harder.” (Caregiver of 19-year-old female)

Impact on transportation (n = 6; 21.4%)

N/A

“We have to make sure that we can have um, ‘cause he does use a, um, transport wheelchair when he gets really tired, as well. So, all of that has to be taken into account. So it just changes your daily life.” (Caregiver of 39-year-old male)