Parental self-efficacy managing a child’s medications and treatments: adaptation of a PROMIS measure

Journal of Patient-Reported Outcomes

Table 1 Concept elicitation for a family caregiver's self-efficacy managing their child's chronic health condition

Behavior or tasks	N
Give medications	20
Schedule and attend doctors appointments	10
Use child's health care equipment	9
Maintain and/or order child’s equipment and supplies	9
Know child’s health care plan	8
Support child’s therapy exercises	8
Communicate with health care team about child’s care, on as needed basis	7
Treat symptoms	7
Provide activities of daily living care, including safe transfers	7
Know when to seek care versus handle immediate medical emergency	6
Communicate using shared decision making around child's care	6
Identify changes in child's condition	6
Understand patient's diagnoses and health care plan	6
Give feeding regimen	4
Give non-medication treatment (e.g. vest)	4
Facilitate care at school or other location	4
Identify side-effects of medications or treatments	3
Obtain medications	3
Obtain medications	3
Facilitate care if parent is away	2
Other (e.g., wound care, safe home environment, health literacy, telehealth visit, access transportation, network, know resources, etc.)	1

Experts and parents are asked to list behaviors or tasks involved in managing or caring for a child’s medical condition(s)
The frequency the behavior/tasks was listed in general categories by frequency across the experts and interviewees