Table 7 Key impacts on HRQOL of caregivers with example quotes
From: Impacts and Burden of Niemann pick Type-C: a patient and caregiver perspective
Aspect of HRQOL | Impact | Example quote |
|---|---|---|
Emotional well-being (n = 12; 42.9%) | Sadness, anxiety, worry (n = 8; 28.6%) | “Yeah, it af- affects me as well. There’s no doubt about it. Like I’ve become like I think I have kinda my doctor thinks I have PTSD from long term care-taking, you know, and I waited all those years for the bomb to drop.” (Caregiver of 24-year-old male) |
Concern for injury or illness (n = 8; 28.6%) | “It’s just scary, the safety issue because I am afraid that he will fall and, you know, break his nose or something.” (Caregiver of 2-year-old male) | |
Distress (n = 6; 21.4%) | “You know that’s your kid’s future. Like how do you live with that? You don’t. I’m sorry. I’m getting emotional. It’s just, it’s like you just can’t, uh, you just, it’s just a crazy thing to, to deal with.” (Caregiver of 24-year-old male) | |
Social well-being (n = 6; 21.4%) | Less able to socialize or go out (n = 4; 14.3%) | “The bigger issue is, uh, you know, when we want to go out, you know, with friends or family and everything and we go out to a restaurant and he has these troubles and, you know, it’s just… you- you… it gets hard on us.” (Caregiver of 21-year-old male) |
Socially isolated (n = 3; 10.7%) | “We can’t plan to go out because i- if it happens while you’re out, what, what’s gonna happen? Who’s gonna be there?” (Caregiver of 28-year-old male) | |
Physical well-being (n = 3; 10.7%) | Difficulty lifting patient (n = 3; 10.7%) | “It’s physically hard on my husband and I, um, somebody’s back always hurts, is we’re always looking at each other who’s turn it is to, to help him” (Caregiver of 16-year-old male) |