Care networks for children and adolescents with craniofacial malformations: Perspectives from caregivers and nurses in a Brazilian border region.

OBJECTIVE

To analyze the care network for children and adolescents with craniofacial malformations in municipalities located in the western border region of Paraná, based on the experiences of caregivers and nurses in Primary Health Care.

METHODS

A qualitative study was conducted using semi-structured interviews with 18 caregivers and 13 nurses. Data were interpreted through Gadamer's philosophical hermeneutics.

RESULTS

The findings revealed positive aspects, such as timely reception in specialized services and early team engagement. However, significant challenges emerged, including structural barriers, absence of clinical protocols, poor coordination across care levels, and the marginalization of Primary Care in caregivers' narratives. These issues contributed to a fragmented care network and placed a disproportionate burden on families, especially in border regions.

CONCLUSION

Strengthening regionalization, positioning Primary Health Care as the care coordinator, and advancing intersectoral collaboration are critical to ensuring equitable, comprehensive, and accessible care for children and adolescents with complex health needs.

IMPLICATIONS TO PRACTICE: Permanent education for PHC professionals, clinical protocols, intersectoral collaboration, and family and community engagement are essential to achieve equitable, integrated, and responsive care.