Faulks Denise, Collado Valérie, de Freminville Bénédicte, Newton J Tim, Hennequin Martine
Université Clermont 1, EA 3847, Faculté de Chirurgie Dentaire, 11 Boulevard Charles de Gaulle, 63000 Clermont-Ferrand, France.
Nurs Outlook. 2006 Nov-Dec;54(6):345-52. doi: 10.1016/j.outlook.2006.09.004.
Despite recent research on the impact of disability on function, little information is available to evaluate the need for daily support in persons with Down syndrome. The aim of this study was to evaluate the prevalence and relative degree of difficulty experienced by this population in routine hygiene and health care when compared to their siblings. A proxy French language questionnaire was used for this cross-sectional survey of 199 persons with Down syndrome and 153 siblings (mean age 12.3 years, range < or = 1-48). Individuals in the study group had significantly more difficulty performing all activities related to routine hygiene and health care, and were 2-22 times more likely to need help than the control group. Certain acts of routine health care were performed more regularly by those in the study group (6/12 items), and specialist medical and paramedical visits were more regular (OR = 7-44). Increased difficulty and need for help in performing acts of basic self-care may reduce autonomy and social integration for persons with Down syndrome. Recommendations are made in relation to the training of caregivers and health professionals.
尽管最近有关于残疾对功能影响的研究，但对于评估唐氏综合征患者日常支持需求的信息却很少。本研究的目的是评估与他们的兄弟姐妹相比，该人群在日常卫生和医疗保健方面的患病率以及所经历的相对困难程度。在这项对199名唐氏综合征患者和153名兄弟姐妹（平均年龄12.3岁，范围≤1 - 48岁）的横断面调查中，使用了一份法语代理问卷。研究组个体在进行所有与日常卫生和医疗保健相关的活动时明显更困难，并且需要帮助的可能性是对照组的2至22倍。研究组中某些日常医疗保健行为（6/12项）执行得更频繁，专科医疗和辅助医疗就诊也更规律（比值比 = 7 - 44）。在进行基本自我护理行为时困难增加且需要帮助，可能会降低唐氏综合征患者的自主性和社会融合度。针对护理人员和卫生专业人员的培训提出了建议。
