Table 1.

Iteration 1: Developing a 2-Column Joint Display

Quantitative QuestionsQualitative Questions
Role functioning

  1. Keep up with household tasks. Scale 0-10; not at all–usual

  2. Confidence in ability to care for child. Scale 0-10; no confidence–very confident

  3. Independence. Scale 0-10; very clingy–as usual

  1. What is it like caring for your child when they are ill?

  2. What are the extra resources and help required to keep your family functioning during fever neutropenia episodes?

Emotional functioning

  1. Level of concern about child’s condition. Scale 0-10; very anxious–very calm

  2. Confidence in ability to care for child. Scale 0-10; no confidence–very confident

  3. Satisfaction with overall care. Scale 0-10; very unhappy–very happy

  4. Mood. Scale 0-10; very upset–very happy

  1. How has your child’s illness emotionally affected you?

Cognitive functioning

  1. Interest or concentration. Scale 0-10; not as usual–as usual

  2. Sleep at night. Scale 0-10; much worse–as usual

  3. Activity or energy level. Scale 0-10; not at all–most of the time

  1. Will you describe how school and work have been affected by your child’s illness?

Social functioning

  1. Spend time with partner. Scale 0-10; not at all–usual

  2. Spend time with other children. Scale 0-10; not at all–usual

  1. How has your child’s illness affected members in your family?

Symptoms

  1. Appetite. Scale 0-10; very poor–very good

  1. How are symptoms different when you are at home versus in the hospital?

Global

  1. Well-being. Scale 0-10; very poor–very good

  1. In your opinion, what value listed above is most important to you?

  2. Is there anything else you would like to share about caring for your child during fever neutropenia?