Capturing Caregivers’ and Families’ Experiences in A Complex Care Program: Development of The Complex Care Program-Family Impact Questionnaire (CCP-FIQ)

Authors

• Astrida S. Kaugars, Marquette UniversityFollow
• Nicole Bungert, Marquette UniversityFollow
• K. Jane Lee, Medical College of Wisconsin
• Johanna Michlig, Marquette University
• Debra Oswald, Marquette UniversityFollow
• Molly K. Paul, Children's Wisconsin
• Sara K. Quates, Medical College of Wisconsin
• Jessica L. Schnell, Medical College of Wisconsin

Document Type

Article

Publication Date

3-2026

Publisher

Oxford University Press

Source Publication

Journal of Pediatric Psychology

Source ISSN

0146-8693

Abstract

Objective

Complex Care Programs (CCPs) provide care coordination and medical services to children with medical complexity (CMC), but no current tools measure the broad impact of these programs on caregivers and families. The Complex Care Program-Family Impact Questionnaire (CCP-FIQ) was developed to assess this impact.

Methods

A list of 125 items was created based on data from a prior qualitative study. Redundant items were removed, which left 48 items. Next, caregivers of CMC participated in cognitive interviews for a subset of items. Then, the 40-item measure was administered to caregivers along with the Perceived Stress Scale and Pediatric Integrated Care Survey. Exploratory factor analysis was performed.

Results

Eleven caregivers completed cognitive interviews, and 163 completed online questionnaires. Exploratory factor analysis of the CCP-FIQ revealed four factors: General Satisfaction (13 items; α = .97), Caregiver Well-Being (8 items; α = .89), Family Well-Being (5 items; α = .86), and Medical Care Empowerment (5 items; α = .86). Higher Pediatric Integrated Care Survey Family Impact scale scores correlated with higher CCP-FIQ subscale scores (ps < .001). Higher perceived stress correlated with lower scores on Caregiver Well-Being and Family Well-Being subscale scores (ps < .001).

Conclusions

The 31-item CCP-FIQ has promising psychometric properties with excellent internal consistency and assesses four domains of CCP impact on caregivers and families of CMC. Constructs assessed align with prior research validating areas of impact. Next steps include using the CCP-FIQ with additional CCPs to conduct confirmatory factor analysis.

Comments

Accepted version. Journal of Pediatric Psychology, Vol. 51, No. 3 (March 2026): 292-301. DOI. © 2026 The Authors, published by Oxford University Press. Used with permission.

Recommended Citation

Kaugars, Astrida S.; Bungert, Nicole; Lee, K. Jane; Michlig, Johanna; Oswald, Debra; Paul, Molly K.; Quates, Sara K.; and Schnell, Jessica L., "Capturing Caregivers’ and Families’ Experiences in A Complex Care Program: Development of The Complex Care Program-Family Impact Questionnaire (CCP-FIQ)" (2026). Psychology Faculty Research and Publications. 661.
https://epublications.marquette.edu/psych_fac/661