9 = REFUSED care your child got from other providers? Would you say: 5c. 1 = Yes, definitely In the last 12 months, did 2 = Yes, somewhat the person who helped you 3 = No with managing your care support your child’s 8 = decisions about what is best DON’T KNOW 9 = REFUSED for your health and child’s treatment? 5d 1 = Yes, definitely In the last 12 months, did 2 = Yes, somewhat the person who helped you 3 = No with managing your 4 = N/A, my child hasn’t care help you to get child’s needed to have visits with appointments to visit other other providers during the providers? last 12 months 8 = KNOW DON’T 9 = REFUSED 5e 1 = Yes, definitely In the last 12 months, did 2 = Yes, somewhat the person who helped you 3 = No child’s with managing your 4 = N/A, my child care help you to get special hasn’t needed special medical medical equipment your equipment during the last child needed like a special 12 months bed, wheelchair, or feeding tube supplies? 8 = DON’T KNOW 9 = REFUSED 6. 0=NO (GO TO 9) In the last 3 months, did 1=YES the person who helped you child’s with managing your 8 = care contact you without DON’T KNOW 9 = REFUSED you getting in touch with them first? 7. 1. Never In the last 3 months, when 2. Sometimes the person who helped you 3. Usually with managing your 4. Always care contacted you, child’s how often did he or she ask 8= if you had any concerns DON’T KNOW 9 = REFUSED about your health or child’s treatment? 8. 1. Never In the last 3 months, when 2. Sometimes the person who helped you 3. Usually child’s with managing your 4. Always care contacted you, how often did he or she ask if 8= your health had DON’T KNOW child’s 9 = REFUSED changed in any way?
9 = REFUSED care your child got from other providers? Would you say: 5c. 1 = Yes, definitely 2 = Yes, somewhat 3 = No 8 = DON’T KNOW 9 = REFUSED In the last 12 months, did the person who helped you with managing your child’s care support your decisions about what is best for your child’s health and treatment? 5d 1 = Yes, definitely 2 = Yes, somewhat 3 = No 4 = N/A, my child hasn’t needed to have visits with other providers during the last 12 months 8 = DON’T KNOW 9 = REFUSED In the last 12 months, did the person who helped you with managing your child’s care help you to get appointments to visit other providers? 5e 1 = Yes, definitely 2 = Yes, somewhat 3 = No 4 = N/A, my child hasn’t needed special medical equipment during the last 12 months 8 = DON’T KNOW 9 = REFUSED In the last 12 months, did the person who helped you with managing your child’s care help you to get special medical equipment your child needed like a special bed, wheelchair, or feeding tube supplies? 6. 0=NO (GO TO 9) 1=YES 8 = DON’T KNOW 9 = REFUSED In the last 3 months, did the person who helped you with managing your child’s care contact you without you getting in touch with them first? 7. 1. Never 2. Sometimes 3. Usually 4. Always 8= DON’T KNOW 9 = REFUSED In the last 3 months, when the person who helped you with managing your child’s care contacted you, how often did he or she ask if you had any concerns about your child’s health or treatment? 8. 1. Never 2. Sometimes 3. Usually 4. Always 8= DON’T KNOW 9 = REFUSED In the last 3 months, when the person who helped you with managing your child’s care contacted you, how often did he or she ask if your child’s health had changed in any way?