Table 1 English version of the RIOFS

1

Our family gives up things because of my child’s illness.

2

People in the neighborhood treat us specially because of my child’s illness

3

We see family and friends less because of the illness

4

I don’t have much time left over for other family members after caring for my child.

5

We have little desire to go out because of my child’s illness.

6

Because of the illness, we are not able to travel out of the city.

7

Sometimes we have to change plans about going out at the last minute because of my child’s state.

8

Sometimes I wonder whether my child should be treated “specially” or the same as a normal child.

9

I think about not having more children because of the illness.

10

Nobody understands the burden I carry.

11

Traveling to the hospital is a strain on me.

12

Sometimes I feel like we live on a roller coaster: in crisis when my child is acutely ill. OK when things are stable.

13

It is hard to find a reliable person to take care of my child.

14

I live from day to day and don’t plan for the future.

15

Fatigue is a problem for me because of my child’s illness.