Caregiver-reported experience of integrated care for children with special health care needs and its sociodemographic, health- and network-related correlates in Germany: Cross-sectional results from the PART-CHILD cohort.

Abstract

Background: Children with special health care needs (CSHCN) often rely on cross-sectoral care networks involving medical, therapeutic, educational, and social services. However, key dimensions of integrated care, including cross-sectoral communication and attention to family impact, remain challenging. Understanding factors that shape caregiver-reported experience of integrated care can inform program development to strengthen integrated care. We aimed (1) to quantify caregiver-reported experience of integrated care and (2) to examine associations between dimensions of caregiver-reported experience of integrated care and sociodemographic, health- and network-related correlates.

Methods: We analyzed cross-sectional data from the nationwide PART-CHILD cohort. Caregivers of CSHCN with predominantly neurological, developmental, and behavioral conditions were recruited in specialized outpatient facilities in Germany and completed questionnaires. Caregiver-reported experience of integrated care was assessed using the German Pediatric Integrated Care Survey, yielding composite scores for Team quality and communication and Attention to family impact. Associations with sociodemographic characteristics, reason for seeking care, unmet needs, and care network size were examined using multivariable linear regression models.

Results: Caregivers of CSHCN (n = 459) reported moderate Team quality and communication (mean 4.1 ± 1.1) and low Attention to family impact (2.3 ± 1.1). Higher unmet needs were associated with lower Team quality and communication (1-4 unmet needs: β = -0.28, 95% CI: -0.52 to - 0.04; ≥5 unmet needs: β = -0.83, 95% CI: -1.28 to - 0.38; reference: none). Cognitive impairment (β = 0.36, 95% CI: 0.03 to 0.69; reference: physical impairment) and larger care networks (4 - 5 providers: β = 0.33, 95% CI: 0.08 to 0.58; 6 - 10 providers: β = 0.38, 95% CI: 0.07 to 0.70; reference: 2-3 providers) were associated with higher Attention to family impact.

Conclusion: Strengthening integrated care for CSHCN may require greater attention to family-level concerns, which were rated low in this sample. The association between unmet needs and Team quality and communication suggests a close link between perceived integration and needs-based service delivery. Correlates of Attention to family impact, including impairment type and care network size, warrant further investigation and may help identify target groups for interventions to strengthen family-centered services.

Trial registration: The study was prospectively registered in the German Clinical Trials Register on 16 November 2018 (ID: DRKS00015054).