Murphy K P, Molnar G E, Lankasky K
Gillette Children's Northern Clinics, Gillette Children's Specialty Healthcare, Duluth, MN 55805, USA.
Arch Phys Med Rehabil. 2000 Jun;81(6):807-11. doi: 10.1016/s0003-9993(00)90115-1.
To assess the social and employment status of adults with cerebral palsy.
Detailed medical history, physical examination, and functional rating in the PULTIBEC system were performed on all study participants; they also responded to a standardized social adaptation questionnaire.
Outpatient clinic.
Volunteer participants (n = 101), all with cerebral palsy, between the ages of 27 and 74 years, living independently in the community.
More than 80% wished that their physician knew more about cerebral palsy. The majority (84%) felt their parents overprotected them in childhood. More than 90% desired more sexual education. More than half (67%) lived independently, 34% with and 33% without attendant. Of the 53% who were competitively employed, 22% earned an income high enough that advancement would cause financial loss through termination of disability benefits. Speech deficits severely compromised functional verbal communication in 50%. Type of employment correlated more with adequate cognition than with physical or communicative impairments.
Compared with earlier studies, the present study showed more adults with cerebral palsy achieving competitive employment and independent living, despite moderate to severe physical disability. Advances in rehabilitation technology, better home support services, and legal mandates in education and environmental access may have facilitated positive change for persons with cerebral palsy. Further studies are encouraged with emphasis on longitudinal designs.
评估成年脑瘫患者的社会和就业状况。
对所有研究参与者进行详细的病史询问、体格检查以及PULTIBEC系统功能评定；他们还需回答一份标准化的社会适应调查问卷。
门诊诊所。
志愿者参与者（n = 101），均为脑瘫患者，年龄在27至74岁之间，独立生活在社区。
超过80%的人希望他们的医生对脑瘫有更多了解。大多数人（84%）觉得他们的父母在童年时期对他们保护过度。超过90%的人希望接受更多性教育。超过一半（67%）的人独立生活，34%的人有护理人员陪伴，33%的人没有。在有竞争性工作的53%的人中，22%的人收入高到晋升会因残疾福利终止而导致经济损失。言语缺陷严重影响了50%的人的功能性言语交流。就业类型与足够的认知能力相关性更大，而非与身体或交流障碍相关。
与早期研究相比，本研究表明更多成年脑瘫患者实现了竞争性就业和独立生活，尽管存在中度至重度身体残疾。康复技术的进步、更好的家庭支持服务以及教育和环境无障碍方面的法律规定可能促进了脑瘫患者的积极变化。鼓励进一步开展强调纵向设计的研究。
