Table 7 ObsRO Modified SICT instrument

Inst 1

The following questions are about the medicine your child takes for iron overload (too much iron in the body) in the past week (past 7 days). Please read each one and answer by yourself. There are no right or wrong answers. All of your answers will remain confidential. Choose only one answer.

N/A

1

Over the past week, how often did your child’s medicine for iron overload limit his/her usual activities?

5-point scale: Always, Most of the time, Sometimes, Rarely, Never

2

Over the past week, how often was your child upset about the side effects of his/her medicine for iron overload?

3

Over the past week, how often did your child take his/her medicine for iron overload?

4

Over the past week, how often did your child express that he/she wanted to stop taking medicine for iron overload?

5

Over the past week, how often did your child follow the doctor’s instructions for taking his/her medicine for iron overload?

6

What are the reasons expressed by your child for not always taking his/her medicine for iron overload as instructed by the doctor? (Choose all that apply)

Taste, Aftertaste (taste left in your child’s mouth after swallowing his/her medicine), Inconvenience (for child), Prepared the medicine incorrectly, Other______

7

Over the past week, how easy or hard did your child tell you it was to take his/her medicine for iron overload?

5-point scale: Very easy, Easy, Neither easy nor hard, Hard, Very hard

8

Over the past week, how bothered did your child express that he/she was by the amount of time he/she had to wait to eat food after taking medicine for iron overload?

5-point scale: Very bothered, Quite bothered, Moderately bothered, A little bothered, Not bothered at all

9

Please choose the face that best describes how happy or unhappy your child appeared with his/her medicine for iron overload over the past week.

5-point scale: Faces scale 1–5

10

Which type of medicine did your child say he/she liked best?

Tablet to dissolve in liquid, Powder to sprinkle on food, Tablet to swallow, I don’t know

Inst 2

The following questions are about YOUR experiences with the medicine your child takes for iron overload in the past week (past 7 days). Please read each one and answer by yourself. There are no right or wrong answers. All of your answers will remain confidential. Choose only one answer.

N/A

11

Over the past week, how often did you feel worried that your child was not swallowing enough of his/her medicine for iron overload?

5-point scale: Always, Most of the time, Sometimes, Rarely, Never

12

Over the past week, how often did you give your child his/her medicine for iron overload?

13

Over the past week, how often did you think to stop giving your child his/her medicine for iron overload?

14

Over the past week, how often did you follow the doctor’s instructions for giving your child his/her medicine for iron overload?

15

What are the reasons that you did not always give your child his/her medicine for iron overload as instructed by the doctor? (Choose all that apply)

Child refused to take, Forgot to give the medicine, Inconvenient for you or your child, Side effects (for child), Did not prepare the medicine according to the doctor’s instructions, Did not give the full amount of the prepared medicine, Other________

16

Over the past week, how easy or hard was it for you to give your child his/her medicine for iron overload?

5-point scale: Very easy, Easy, Neither easy nor hard, Hard, Very hard

17

Over the past week, how bothered were you by the amount of time it took to prepare your child’s medicine for iron overload?

5-point scale: Very bothered, Quite bothered, Moderately bothered, A little bothered, Not bothered at all