Table 4 Impacts and burden experienced by caregivers due to their children’s sickle cell disease
Caregiver burden | n (%) n = 9 | Representative caregiver quote(s) |
|---|---|---|
Work | 7 (78) | I’m telling you, it’s hard. It’s really hard. My boyfriend is home with him now, and he plays a big role and everything. But if I have to leave work or I have to change something with my schedule, because he got ill at school or—anytime, it’s just anytime type thing |
I basically work my own schedule, but when I do get my schedule because we schedule a week ahead, I got to stick with that schedule. And if I don’t get them clients to—I end up paying [for] what day they miss, I don’t like it. If that fare costed $60, I have to pay that | ||
Emotional health | 6 (67) | Oh, so many times I have broke—I haven’t did it in front of her, but I have went in the bathroom, broke down because it’s like, this is my baby, and I can’t do nothing for to help her It’s very painful for the caregiver as well, it’s very painful for the caregiver, because sometimes when you know they are going through something, and you could see it on their face, and sometimes they just don’t want to be bothered, they are just sick of it themselves |