Marshall J, Tanner J P, Kozyr Y A, Kirby R S
Department of Community & Family Health, College of Public Health, University of South Florida, Tampa, FL, USA.
Child Care Health Dev. 2015 May;41(3):365-73. doi: 10.1111/cch.12162. Epub 2014 Jun 10.
As individuals with Down syndrome are living longer and more socially connected lives, early access to supports and services for their parents will ensure an optimal start and improved outcomes. The family's journey begins at the child's diagnosis, and cumulative experiences throughout infancy and childhood set the tone for a lifetime of decisions made by the family regarding services, supports and activities.
This study utilized focus groups and interviews with seven nurses, five therapists, 25 service co-ordinators, and 10 English- and three Spanish-speaking parents to better understand family experiences and perceptions on accessing Down syndrome-related perinatal, infant and childhood services and supports.
Parents and providers reflected on key early life issues for children with Down syndrome and their families in five areas: prenatal diagnosis; perinatal care; medical and developmental services; care co-ordination and services; and social and community support.
Systems of care are not consistently prepared to provide appropriate family-centred services to individuals with Down syndrome and their families. Individuals with disabilities require formal and informal supports from birth to achieve and maintain a high quality of life.
随着唐氏综合征患者的寿命延长且社交联系增多，尽早为其父母提供支持和服务将确保有一个最佳开端并改善结果。家庭的历程始于孩子被诊断之时，婴儿期和童年期的累积经历为家庭在服务、支持和活动方面做出的一生决策定下基调。
本研究采用焦点小组以及对七名护士、五名治疗师、25名服务协调员，以及10名说英语和三名说西班牙语的家长进行访谈，以更好地了解家庭在获取唐氏综合征相关围产期、婴儿期和儿童期服务及支持方面的经历和看法。
家长和提供者反思了唐氏综合征患儿及其家庭在五个方面的关键早期生活问题：产前诊断；围产期护理；医疗和发育服务；护理协调与服务；以及社会和社区支持。
照护系统并未始终做好准备，为唐氏综合征患者及其家庭提供适当的以家庭为中心的服务。残疾人士从出生起就需要正式和非正式的支持，以实现并维持高质量生活。
