A 21-year psycho-social follow-up of 524 unselected cases of down's syndrome and their families.
The death rate was followed, and a life table has been constructed. Three crucial events were examined: 1. the period of diagnosis, 2. the problem of institutionalization versus homecare, 3. the ageing and death of the parents and its consequences for the person with D.S. Several other medical problems, psychological implications and social consequences for the person with D.S., for his parents and siblings are highlighted. The worst problem for parents with the child at home was social isolation; for the parents with the child at an institution it was the very existence of the child. To both groups the most encouraging fact was that their child was happy, friendly and in good spirits. Finally, emphasis is laid upon the medical and paramedical problems which must be discussed and solved to make a harmonious and social life for the person with D.S., for his normal siblings, and for the parents.
D000293:Adolescent; D000328:Adult; D000368:Aged; D001290:Attitude; D002648:Child; D002674:Child, Institutionalized; D002675:Child, Preschool; D004314:Down Syndrome / Q000401:mortality; D005500:Follow-Up Studies; D006801:Humans; D008875:Middle Aged; D010290:Parents; D012934:Social Isolation; D011795:Surveys and Questionnaires