Liptak Gregory S, Orlando Mark, Yingling Jacalyn T, Theurer-Kaufman Karin L, Malay Daniel P, Tompkins Luz A, Flynn Jeannette R
University of Rochester Clinical Center, Rochester, NY, USA.
J Pediatr Health Care. 2006 Jul-Aug;20(4):245-52. doi: 10.1016/j.pedhc.2005.12.008.
To evaluate the perceptions of families of children with developmental disabilities regarding their primary care physicians and to determine if differences exist for different conditions.
Mailed survey to families of children who had autism, physical disabilities (cerebral palsy or spina bifida) and mental retardation that included the Multidimensional Assessment of Parental Satisfaction for Children with Special Needs.
One hundred twenty-one families responded. Families rated physicians highest on their ability to keep up with new aspects of care and on their sensitivity to the needs of children. Parents had the lowest ratings for the primary care physicians' ability to put them in touch with other parents, understanding of the impact of the child's condition on the family, ability to answer questions about the child's condition, and information and guidance for prevention. Physicians' knowledge about complementary and alternative medicine and their qualifications to manage developmental disabilities ranked worse than neutral. Families with a child with autism had more spontaneous negative comments and rated their primary care physicians lower on several aspects of care. They requested more information on complementary and alternative medicine and more support in the community.
Families of children with developmental disabilities demonstrate dissatisfaction with several aspects of health care that can serve as areas for intervention by their health care providers. Families of children with autism in particular articulate dissatisfaction and voice unmet needs.
评估发育障碍儿童家庭对其初级保健医生的看法，并确定不同病症之间是否存在差异。
向患有自闭症、身体残疾（脑瘫或脊柱裂）和智力障碍儿童的家庭邮寄调查问卷，其中包括对有特殊需求儿童的父母满意度的多维评估。
121个家庭做出回应。家庭对医生在跟上护理新方面的能力以及对儿童需求的敏感度方面评价最高。父母对初级保健医生帮助他们与其他父母取得联系的能力、对儿童病情对家庭影响的理解、回答有关儿童病情问题的能力以及预防方面的信息和指导评价最低。医生对补充和替代医学的了解以及他们管理发育障碍的资质评级低于中立水平。自闭症儿童家庭有更多自发的负面评价，并且在护理的几个方面对其初级保健医生的评价较低。他们要求获得更多关于补充和替代医学的信息以及社区中的更多支持。
发育障碍儿童家庭对医疗保健的几个方面表示不满，这些方面可作为其医疗保健提供者进行干预的领域。特别是自闭症儿童家庭明确表达了不满并说出了未满足的需求。
