Participant Survey Measures

CategoryInstrument and Outcome Variables
Child health servicesShared Responsibilities Tool Kit, Version 1.0,27 adapted Family Survey
    Family demographics
    Number of child’s current health service needs
    Ratings of child’s health service utilization
    Parental satisfaction with health care services
Family functioningFNS28
    Total number of definite family needs in 6 different categories; responses from the time 1 sample (N = 83) showed strong internal consistency (Kuder-Richardson 20 = .88)
The impact of the child’s chronic illness on the family on 2 subscales: (1) Familial/social impact, which measures the impact on family social interactions (2) Personal strain, which assesses subjective distress related to caregiving
Missed work days
    Rating of the number of times within the past 6 mo that parent missed work or was unable to perform daily responsibilities as a result of the child’s health needs
Child functioningFS II-R,30 14-item version
    The impact of chronic health conditions on various areas of child functioning (eg, eating, sleep, mood)
Missed school days
    Rating of the number of days within the last 6 mo that the child was absent from school as a result of health concerns
Program acceptabilityTime 2 ratings of how helpful the intervention was for the child and the family overall and in specific component areas (eg, written health plan) (1 = extremely helpful to 5 = not at all helpful)
  • FNS indicates Family Needs Survey; IFS, Impact on Family Scale; FS II-R, Functional Status II–Revised. Lower scores reflect better outcomes for all measures except the FS II-R, in which lower scores reflect worse outcomes. See Table 3 for specific rating scale values, which varied across items.