Sokol M
Any Baby Can, Inc., San Antonio, TX 78228, USA.
J Obstet Gynecol Neonatal Nurs. 1995 Jan;24(1):64-70. doi: 10.1111/j.1552-6909.1995.tb02380.x.
When parents are faced with the realization that their child has a disability or chronic illness, life is significantly changed. There can be tremendous emotional and economic stress as families seek diagnosis and treatment and face a bewildering search for appropriate programs. Uncertainty about the future and frustration with the present often leave caregivers overwhelmed. For these fragile families, a philosophy of family-centered care in their community is important. Ideally, this seamless system should offer continuity of care from birth through the childhood years and bridge medical, educational, and social services. Only in this environment can we assure that we are saving not only the infant but also the family.
当父母意识到自己的孩子患有残疾或慢性病时,生活便会发生重大改变。在家庭寻求诊断和治疗并面临寻找合适项目的令人困惑的过程中,可能会有巨大的情感和经济压力。对未来的不确定性以及对当下的挫败感常常让照料者不堪重负。对于这些脆弱的家庭而言,社区中以家庭为中心的护理理念很重要。理想情况下,这个无缝衔接的系统应提供从出生到童年时期的持续护理,并衔接医疗、教育和社会服务。只有在这样的环境中,我们才能确保不仅挽救了婴儿,也挽救了家庭。