McAndrew I
Dev Med Child Neurol. 1979 Oct;21(5):619-29. doi: 10.1111/j.1469-8749.1979.tb01676.x.
This study investigated how young people with myelomeningocele see their situation, and defines some of their problems. 35 adolescents and young people with this condition were interviewed. The evidence suggests that the over-all problems of these young people are common to many with congenital physical disabilities, but neurogenic bowel and bladder are additional complications not often experienced by others with orthopaedic disabilities. Those with ileal conduits frequently reported both social embarrassment and management difficulties, but bowel incontinence was rarely a dominant problem. The findings indicate that the young person's ability to cope with physical and emotional situations is ultimately not determined by the severity of the disability, but is a product of all the environmental support systems that have been available to him since birth.
本研究调查了患有脊髓脊膜膨出的年轻人如何看待自己的状况，并明确了他们面临的一些问题。对35名患有这种疾病的青少年和年轻人进行了访谈。证据表明，这些年轻人的总体问题在许多先天性身体残疾者中很常见，但神经源性肠道和膀胱是其他患有骨科残疾者不常遇到的额外并发症。那些有回肠造口术的人经常报告社交尴尬和管理困难，但大便失禁很少是主要问题。研究结果表明，年轻人应对身体和情感状况的能力最终并非由残疾的严重程度决定，而是他自出生以来所获得的所有环境支持系统的产物。
