Table 4 Survey items to assess family caregiver’s self-efficacy managing their child’s chronic health condition

All parents

Health care information or decision making

I know the healthcare condition(s) that affect my child

I can work with my child’s doctor(s) to choose the treatment that seems right for my child, including the option of not giving any treatment

I can actively participate in decisions about my child’s treatment

I can find information to learn more about my child’s treatment

Symptom identification or management

I know when my child needs to be seen by a healthcare provider, if sick

I know what to do if my child has a medical emergency until help arrives

I can figure out what my child needs when my child’s symptoms change

I can tell when my child’s symptoms worsen

General treatment management

I can follow my child’s full treatment plan (including medication, therapy, and other care)

I know what to do if my child’s misses a medication or other type of treatment

General healthcare navigation

I know the steps needed to get in contact with my child’s healthcare providers when I have a question or concern about my child’s care

I know the steps needed to schedule my child’s healthcare appointments

I know how to set up a telemedicine video visit for my child using an electronic device

Feeding management

I can follow my child’s diet or feeding plan

Parents with children who have specific medical needs

Medication usage

I can continue my child’s medications or other treatment when we are away from home

I know how to arrange for my child to receive medication or treatments at locations other than home, if needed

I can tell the difference between when my child is having a medication side effect or experiencing symptoms of their condition(s)

I can give my child’s medications when they are scheduled to be given

I know how to give my child’s medications (such as by mouth or by tube)

I know how to get my child’s medication refilled, if it is needed

I can keep a list my child’s medication, including the medication doses and schedule

I know what to do when my child’s medication refill seems different than usual

Medical technology or equipment

I can use my child’s medical equipment by myself

I can tell when parts of my child’s medical equipment, parts, or supplies needs to be replaced or repaired

I can clean my child’s medical equipment

I know the settings on my child’s medical equipment (such as a pump, monitor, ventilator, etc.)

I can change my child’s disposable supplies or devices (such as diabetes pump, tracheostomy, line dressing, etc.)

I can use my child’s mobility equipment, such as a wheelchair, walker, or lift

Therapy treatment management

I can help my child do their therapy exercises

Activities of daily living management

I can move my child safely