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

IF 2.3 4区医学 Q2 NURSING

Journal of Pediatric Nursing-Nursing Care of Children & Families Pub Date : 2025-09-17 DOI:10.1016/j.pedn.2025.09.013

Rosangela A.S. Martins , Neide M. Moreira , Maria A. Baggio , Maria C.C. Furtado , Gabriela D.M. Casacio , Rosane M.M. Silva

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引用次数: 0

Abstract

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.

查看原文本刊更多论文

患有颅面畸形的儿童和青少年的护理网络：来自巴西边境地区护理人员和护士的观点。

目的：根据护理人员和护士在基层卫生保健工作中的经验，分析我国西部边境地区儿童和青少年颅面畸形的护理网络。方法：采用半结构化访谈法对18名护理人员和13名护士进行定性研究。数据是通过伽达默尔的哲学解释学来解释的。结果：研究结果显示了积极的方面，如专业服务的及时接待和早期的团队参与。然而，重大的挑战出现了，包括结构性障碍，缺乏临床协议，护理水平之间的协调性差，以及初级保健在护理人员叙述中的边缘化。这些问题导致护理网络支离破碎，给家庭带来了不成比例的负担，特别是在边境地区。结论：加强区域化，将初级卫生保健定位为保健协调员，推进部门间合作，对于确保有复杂卫生需求的儿童和青少年获得公平、全面和可获得的保健至关重要。对实践的影响：对初级保健专业人员的长期教育、临床协议、部门间合作以及家庭和社区参与对于实现公平、综合和反应迅速的护理至关重要。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Pediatric Nursing-Nursing Care of Children & Families NURSING-PEDIATRICS

CiteScore

3.70

自引率

8.30%

发文量

291

审稿时长

65 days

期刊介绍： Official Journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society (PENS) The Journal of Pediatric Nursing: Nursing Care of Children and Families (JPN) is interested in publishing evidence-based practice, quality improvement, theory, and research papers on a variety of topics from US and international authors. JPN is the official journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society. Cecily L. Betz, PhD, RN, FAAN is the Founder and Editor in Chief. Journal content covers the life span from birth to adolescence. Submissions should be pertinent to the nursing care needs of healthy and ill infants, children, and adolescents, addressing their biopsychosocial needs. JPN also features the following regular columns for which authors may submit brief papers: Hot Topics and Technology.