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

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).