Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy

Abstract

BackgroundPopulation-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.MethodologyA 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.FindingsAn 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.ConclusionThe 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.

Community Attitudes Towards People with Down’s Syndrome: A Sample From Iraq

“…Fro m a cultural perspective, respondents might prefer p lacing students with DS in special schools to protect them fro m vio lence and that those people are better in a special environ ment to facilitate their learning experience. An American study, found that only 30% supported special schooling for people with DS [8], and a fu ll 100% of children with DS were enro lled in the public school system in Ro me, Italy [13] co mpared to results of the present study that show far more support for separation. This finding is in light of the system in the Iraqi public schools where children with mental disabilit ies are not enrolled with other students.…”

Physical Activity and Body Composition Relate to Cardiorespiratory Fitness Independently in Young Adults with Down Syndrome

“…Therefore, we sought to examine the relationship among LTPA, [34][35][36]. The peak distance a person is able to walk in six minutes (i.e.…”

Ageing of people with Down’s syndrome

“…Changes in health condition during ageing tend to limit the daily activities and social participation that elderly people with DS might potentially achieve Bertoli et al, 2011). For this reason, it is important to consider the health condition of ageing persons with DS in interaction with their environment -for example, the support of family members and health professionals, or social support services and policies.…”

“…Several studies have been carried out to assess the health conditions of elderly people with DS: specific medical problems have been delineated (Mantry et al, 2008;Torr et al, 2010;Danés, 2012;McCarron et al, 2014), and so have the main causes of death (Bittles et al, 2006;Englund et al, 2013). Some studies also investigated the quality of life of people with DS and their families (Brown et al, 2001;McCarron et al, 2002;Brown and Brown, 2009;Werner et al, 2009;Furniss et al, 2012), and the influence that social services have on the functional decline of those with DS (Bertoli et al, 2011).…”