بار خانوادگي و مشكلات مبتلايان به سندرم داون

Family Burden and Problems in Patients with Down Syndrome

Objectve: Down syndrome (Trisomy of 21) is the most common chromosomal abnormality which associated with different somatic, psychotic, familial and social problems. This research was done under supervision of the child developmental disturbances group and with support of deputy of research in the University of Welfare and Rehabilitation Sciences with the goal of surveying problems and familial burden of patient with down syndrome. Materials & Methods: 61 families of the patients registered by the Iranian Society of Down Syndrome were participated (31 families with boys and 30 families with girls patients, patient with the range age of 3-1 7 years). Expert panel structured questionnaire in 7 domain (each 3 to 6 question) were used. The dates banked and analysis with student spss-pc. Results: This survey found the most problems in 7 Domains including; somatic, psychotic, behavioral, social, learning, supportive and communication problems. Mean priority scores in these domains based on family opinion was near and was 19.72 (SD= 2.41). The datas showed most of families need education and knowing about supporting centers. %97 of patients were well accepted by their families, 96% of Families worried about their children after their death. In spite of the disabilities in these patients the families accounted their children as an able person. Conclusion: The patients with Down Syndrome are accepted in their families and also adjusted with other family members, so the families Support them and expend all the expenditures. The families attitude about these patients are good and not shameful of their. Then need of education, information, social planning about their vocation, and future is a necessitate based on families opinion.