Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy.
Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy.
复制标题
DOI：
10.1111/j.1365-2788.2011.01432.x
复制
发表时间：
2011-08
期刊：
影响因子：
--
通讯作者：
Zuccalà G
中科院分区：
文献类型：
--
作者：
Bertoli M;Biasini G;Calignano MT;Celani G;De Grossi G;Digilio MC;Fermariello CC;Loffredo G;Luchino F;Marchese A;Mazotti S;Menghi B;Razzano C;Tiano C;Zambon Hobart A;Zampino G;Zuccalà G
由于有关隐私和机密信息的道德和法律政策，对唐氏综合症 (DS) 患者的生活质量进行基于人群的调查很难进行，但它们对于服务规划至关重要。对于居住在拥有 270 万居民的罗马市的 DS 患者的样本量和生活质量的变异性，我们知之甚少。本研究的目的是探讨居住在罗马的 DS 患者在健康、社会融合和日常生活方面的需求和挑战。 2006年进行了一项基于人口普查的横断面调查。罗马市统计局参与了国民医疗服务体系的所有家庭医生（总共3016名）。根据人口普查，每位居民都向家庭医生登记，每位残疾人都进行了编码。唐氏综合症协会鼓励其成员参与这项研究。调查问卷由 DS 患者家属根据隐私法填写。通过信件和电话联系家庭医生进行的初步调查确定了居住在罗马市的 884 名 DS 患者。收集了 518 名 DS 患者（年龄从 0 岁到 64 岁）的医疗和社会状况数据。其中约 88% 与原生家庭住在一起； 82.1%的人有一个或多个兄弟姐妹，19.5%的人失去了父母之一或双亲。 100% 的 DS 儿童就读于公立学校系统。这确保了他们充分忙碌并完全融入社会。中学毕业后就缺乏机会。因此，只有 10% 的成年人签订了定期合同。在 25-30 岁的 DS 患者中，只有 42.2% 参与某种形式的常规活动（尽管并非总是每天进行）。 30岁以后，功能衰退的人比例急剧增加，而与残疾相关的支持则减少。换句话说，随着 DS 患者年龄的增长，日常生活越来越以家庭为中心，只有偶尔的户外活动。罗马市大多数 DS 患者的健康、就业和社会需求没有得到满足。这项研究的结果强调，迫切需要让患有 DS 的成年人更全面地融入社会，并提供支持服务，以创造一个有利的包容环境。由于 DS 患者的表现存在差异，因此需要在工作、生活安排、社交网络和医疗服务方面制定更多针对具体情况的选择。仅童年时期的学校教育和社会包容并不能保证成年后令人满意的生活质量。本文认为，包容和支持政策应该延伸到 DS 患者的整个一生。
Population-based surveys on the quality of life of people with Down syndrome (DS) are difficult to perform because of ethical and legal policies regarding privacy and confidential information, but they are essential for service planning. Little is known about the sample size and variability of quality of life of people with DS living in the city of Rome, which has a population of 2.7 million inhabitants. The aim of the present study is to explore the needs and challenges in health, social integration and daily life, of people with DS living in Rome. A cross-sectional, census-based survey was conducted in 2006. All family doctors (3016 in total) of the National Health Service were involved by the Statistical Bureau of the Municipality of Rome. As per the census, every resident citizen is registered with a family doctor and every person with disabilities is coded. Associations for Down Syndrome encouraged their members to participate in the research. Questionnaires were completed by families of people with DS, in accordance with privacy laws. An initial survey, conducted via a letter and a telephone contact with family doctors, identified 884 people with DS residing in the city of Rome. Data on the medical and social conditions of 518 people with DS, ranging in age from 0 to 64 years, were collected. Some 88% of these were living with their original family; 82.1% had one or more siblings, and 19.5% had lost one or both parents. A full 100% of children with DS were enrolled in the public school system. This ensures that they are fully occupied and entirely integrated in society. After secondary school there is a lack of opportunities. Thus, only 10% of adults were working with a regular contract. A mere 42.2% of people with DS aged 25–30 were involved in some form of regular activity (although not always on a daily basis). After the age of 30, the percentage of people demonstrating decline in function increased sharply, while disability-related support decreased. In other words, as people with DS age, daily life evolves increasingly around the home, with only occasional outdoor activities. The health, employment and social needs of the majority of people with DS in the city of Rome are not being met. The findings of this study underscore the urgent need for more comprehensive inclusion in society of adults with DS and for the provision of support services to create an enabling environment for inclusion. Because of the variability of performance among individuals with DS, there is a need to create more case-specific options in terms of work, living arrangements, social networking and medical services. Schooling and social inclusion in childhood alone do not guarantee a satisfactory quality of life in adulthood. It is argued herewith that policy of inclusion and support should extend over the entire lifetime of people with DS.
登录
查看更多内容
DOI：
10.1111/j.1471-0528.2008.01700.x
发表时间：
2008-05-01
影响因子：
5.8
作者：
Boyd, P. A.;DeVigan, C.;Dolk, H.
通讯作者：
Dolk, H.
DOI：
10.1111/j.1468-3148.2007.00418.x
发表时间：
2008-09-01
影响因子：
2.4
作者：
Carr, Janet
通讯作者：
Carr, Janet
DOI：
10.1080/13668250903103668
发表时间：
2009-01-01
影响因子：
1.3
作者：
Burton-Smith, Rosanne;McVilly, Keith R.;Tsutsui, Takako
通讯作者：
Tsutsui, Takako
DOI：
10.3104/case-studies.101
发表时间：
2001-07-01
期刊：
Down's syndrome, research and practice : the journal of the Sarah Duffen Centre
影响因子：
--
作者：
Brown, R;Taylor, J;Matthews, B
通讯作者：
Matthews, B
DOI：
10.1111/j.1741-1130.2008.00202.x
发表时间：
2009-03-01
影响因子：
1.7
作者：
Brown, Roy I.;Schalock, Robert L.;Brown, Ivan
通讯作者：
Brown, Ivan