Parents' satisfaction with medical and social assistance provided to children with Down syndrome: experience in Estonia.
OBJECTIVE
Parents of children with mental or physical disabilities have been assumed to live more stressful lives than other parents, and people with Down syndrome (DS) may get second-rate care because of their diagnosis. The aim of this work is to investigate the extent of parents' satisfaction with medical and social services in Estonia provided for the DS individuals and their families.


METHODS
From 1999 to 2001, fifty-nine DS families answered questionnaires in which we inquired about their satisfaction with medical and social assistance.


RESULTS
We found that satisfaction with the quality of the information about DS is low, and most of the parents are not satisfied with the social benefits and rehabilitation options.


CONCLUSIONS
The DS families need more medical information about this syndrome. The medical staff has to learn more about how to deliver bad news and how to support parents. More work needs to be done in the area of rehabilitation options and social assistance.
Reimand
Tiia
T
Department of Paediatrics, University of Tartu, Estonia. tiia.reimand@kliinikum.ee
Uibo
Oivi
O
Zordania
Riina
R
Palmiste
Veronika
V
Ounap
Katrin
K
Tqlvik
Tiina
T
D004314:Down Syndrome / Q000523:psychology / Q000628:therapy*; D004957:Estonia; D005260:Female; D006801:Humans; D008297:Male; D008483:Medical Assistance / Q000592:standards; D010290:Parents / Q000523:psychology*; D010549:Personal Satisfaction; D012947:Social Work / Q000592:standards; D011795:Surveys and Questionnaires