Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome
Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome
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DOI：
10.1111/j.1365-2214.2008.00931.x
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发表时间：
2009-03-01
影响因子：
1.9
通讯作者：
Steiner, K.
中科院分区：
文献类型：
--
作者：
Minnes, P.;Steiner, K.
近年来，国际研究开始关注智障人士的医疗问题以及发育障碍人士获得医疗服务时的家庭压力。人们对不同诊断群体中个人的需求或他们的护理系统的经历知之甚少。因此，我们报告了由患有脆性 X 综合征、自闭症或唐氏综合症的儿童或成人家长组成的焦点小组的结果。对来自三个诊断组的儿童、青少年或成人的家长进行半结构化小组访谈，探讨了他们对加拿大安大略省获得和谈判医疗服务的挑战和成功的看法。家长们描述了护理方面的各种障碍、确保服务的宣传必要性、对服务提供的看法以及医疗保健专业人员在规范获得各种服务方面的作用。诊断服务是所有三个群体的家长最关心的一个领域。焦点小组的数据引起了广泛的关注。加强该系统的建议包括扩大对医学生和卫生专业人员的针对特定症状的教育，以及创建一个可以为家长提供服务相关信息的中心。
International research in recent years has begun to focus on the medical problems of individuals with intellectual disabilities and on family stress in accessing health services for persons with developmental disabilities. Less is known about the needs of individuals in different diagnostic groups, or about their experiences of systems of care. Therefore, we report the results of focus groups with parents of children or adults with fragile X syndrome, autism or Down syndrome.Semi-structured group interviews with parents of children, youth or adults from each of three diagnostic groups probed perceptions of challenges and successes in obtaining and negotiating healthcare services in Ontario, Canada.Parents described diverse barriers to care, the need for advocacy in securing services, perceptions of service delivery and the role of healthcare professionals in regulating access to a wide range of services. Diagnostic services represented one area of central concern to parents from all three groups.Focus group data yielded a wide range of concerns. Suggestions for enhancing the system included expanding syndrome-specific education for medical students and health professionals and creating a centre that could offer service-related information for parents.