Table 2 Caregiver-Observed Impact of Physical Function on Physical ADLs

Control bowel and/or bladder

▪ Diapers/pull-ups

▪ “She wore underwear to school, but you know, I would have more dirty [underwear] than not.”

▪ “By the end of grade 2, he was wearing diapers full-time because he was having accidents all the time.”

Walk and/or stand

▪ Toileting

▪ Walking

▪ Standing

▪ Bathing/showering

▪ Moving/transfers

▪ “She walked with a walker for a very short time. So between 3, 4 months later, she quit [walking] altogether.”

▪ “He leaned more and more … I guess he was developing weakness in his legs.”

▪ “Physically, she was having trouble stepping over the bathtub to get into the bathtub. So she fell a couple times.”

▪ “We took a summer vacation…and we kept pulling off and stopping to get out and look at the scenery. He wouldn’t get out of the car. Well, he was having trouble getting out of the car, but he didn’t tell us.”

Go up and down stairs

▪ Going up/down stairs

▪ “Stumbling on stairs — and it’s usually going up the stairs. And she used to joke, ‘Oh, I’m being blonde. I’m tripping up [the] stairs. Ha, ha, ha.’ It was always a joke. But now I notice it at least five times a week.”

Swallow/swallow without choking

▪ Eating

▪ Drinking

▪ “For the 6 months prior to [getting the feeding tube], we were slowly seeing a decline … we went from his eating regular foods to purees.”

▪ “She started choking on liquids because she couldn’t swallow very well.”

▪ “I always make sure he’s sitting straight up at a 90-degree angle, and I also make sure that he’s talking a little bit after he sucks on the straw, so that sort of helps him to swallow better.”

Use hand to reach, grab, or hold an object

▪ Feeding

▪ Brushing teeth/hair

▪ Dressing

▪ Bathing/showering

▪ Writing

▪ “She has a really tight grip. So she can self-feed a little bit for some things, some finger foods …”

▪ “It was easier for him to hold a cup before on his own, but that’s kind of hard to do a little bit now. And when he grasps something, sometimes it’s just hard for him to let go. He has a really tight grip.”

▪ “She would pick stuff up or like try to help and get maybe a couple feet and … she wouldn’t have the grip or strength. And she would drop it.”

▪ “He’s clumsy putting on long pants. He’s still independent doing it. It just takes him longer.”

▪ “Her handwriting started getting really small. I noticed she was having trouble holding the pen.”

Control head and trunk

▪ Sitting

▪ “Then in grade 2, he lost upper body control, he started falling over in the booster seat. So we’d go around a turn and he’d fall over. So, we had to put him back into a car seat.”

▪ “Like if I leave her [sitting] on the couch and I’m not there, she goes this way, she’s going down. She’s not getting back up.”