Faculty Collaboration Database

Capturing caregivers' and families' experiences in a Complex Care Program: development of the Complex Care Program-Family Impact Questionnaire (CCP-FIQ). J Pediatr Psychol 2025 Nov 16

Date

11/16/2025

Pubmed ID

41241776

Pubmed Central ID

PMC12826604

DOI

10.1093/jpepsy/jsaf096

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.

Author List

Kaugars AS, Bungert N, Lee KJ, Michlig J, Oswald DL, Paul MK, Quates SK, Schnell JL

Authors

Astrida Kaugars PhD Associate Professor of Psychology in the Psychology department at Marquette University
K Jane Lee MA, MD Interim Chief, Professor in the Pediatrics department at Medical College of Wisconsin
Jessica Schnell MPH, MD Associate Professor in the Pediatrics department at Medical College of Wisconsin