Table 3.

Initial Conceptualization of Topically Relevant Family Studies

Topical category	Example areas of inquiry
Family system functioning	Family relationships (e.g., satisfaction, attachment) Family structure (e.g., division of labor, routines) Family processes (e.g., communication, problem solving, coping) Family system characteristics (e.g., resilience, environment) Family resources (e.g., social support, health care system)
Affected child functioning	Health status (e.g., general health, condition control) Well-being and functioning (e.g., school performance, psychosocial adjustment) Perceptions of experience (e.g., family life, condition management)
Family member functioning (parents, siblings)	Well-being and functioning (e.g. quality of life, psychosocial adjustment) Performance of parenting role (e.g., parenting style, parenting stress) Perceptions of experience (e.g., family life, condition management)
Family/family member demographics	Age/developmental stage Gender Race/ethnicity Socio-economic status Parent’s education Location (urban, rural)
Condition management and control	Symptom management Regimen management (e.g., adherence, monitoring) Condition trajectory Condition status
Family/family member interaction with healthcare system	Health and social services utilization Healthcare costs Needs/satisfaction Family/professional provider relations