NBDPN Parent Advisory Group, 8150 N. Central Expwy., M2248, Dallas, TX 75206, USA.
Int J Environ Res Public Health. 2013 Aug 7;10(8):3465-82. doi: 10.3390/ijerph10083465.
Birth defects affect 1 in 33 babies. Having a child with a birth defect impacts the whole family. Parents of children who have birth defects face unique challenges and desire to make life better for their kids. They also want to help to prevent birth defects in the future. Some of the challenges parents face involve communication with healthcare professionals, quality of life issues, creating awareness and advocating for research and funding, finding resources and support, and helping teens transition to appropriate, specialized adult care. This paper addresses these issues and their sub-issues, provides examples, and makes suggestions for improvement and research.
出生缺陷影响每 33 个婴儿中的 1 个。孩子患有出生缺陷会影响整个家庭。有出生缺陷孩子的父母面临着独特的挑战，并希望为孩子创造更好的生活。他们也希望帮助预防未来的出生缺陷。父母面临的一些挑战包括与医疗保健专业人员沟通、生活质量问题、提高认识和倡导研究与资金、寻找资源和支持，以及帮助青少年过渡到适当的、专门的成人护理。本文解决了这些问题及其子问题，提供了示例，并为改进和研究提出了建议。
