Parental perspectives on research for Down syndrome

Author(s):  
Amanda Nicole White ◽  
Marly Chevette ◽  
Hampus Hillerstrom ◽  
Anna Esbensen
2017 ◽  
Vol 26 (6) ◽  
pp. 1333-1340 ◽  
Author(s):  
Victoria Reines ◽  
Krista Charen ◽  
Tracie Rosser ◽  
Arri Eisen ◽  
Stephanie L. Sherman ◽  
...  

2006 ◽  
Vol 21 (3) ◽  
pp. 214-222 ◽  
Author(s):  
Christina Cheung ◽  
Elaine Wirrell

Adolescent perception of physical and social impact of chronic illness was assessed to determine (1) if there is greater prejudice toward epilepsy than other chronic disease and (2) if adolescents with chronic disease have less prejudice toward similarly affected peers with all types of chronic disease or just their specific chronic disease. Cognitively normal teens aged 13 to 18 years without chronic disease ( n = 41) and with epilepsy ( n = 32), asthma ( n = 38), diabetes ( n = 21), and migraine ( n = 17) were interviewed in the outpatient clinics of a tertiary care pediatric center regarding their perceptions of the physical and social impact of eight chronic diseases (epilepsy, asthma, diabetes, Down syndrome, arthritis, migraine, leukemia, human immunodeficiency virus [HIV] infection). Epilepsy was perceived to have a more adverse physical impact than all chronic illnesses except Down syndrome. The perception was that it more frequently caused mental handicap, injured the afflicted individual and bystanders, and led to death. Epilepsy was also perceived to have a more negative social impact, particularly on behavior, honesty, popularity, adeptness at sports, and fun. Significantly more adolescents expressed reluctance to befriend peers with epilepsy, both from their own and their perceived parental perspectives. Having a chronic disease did not generally alter the adolescents' perceptions of peers with chronic disease. However, cases with epilepsy ranked this disease to have less social impact than teens with other chronic diseases. In conclusion, adolescents consider epilepsy to have a greater physical and social impact than most chronic diseases. Educational efforts should focus on the “normality” of most persons with epilepsy and emphasize the low risk of injury when proper first aid is followed. ( J Child Neurol 2006;21:214—222; DOI 10.2310/7010.2006.00053).


1976 ◽  
Vol 112 (10) ◽  
pp. 1397-1399 ◽  
Author(s):  
D. M. Carter

1991 ◽  
Vol 36 (2) ◽  
pp. 172-172
Author(s):  
No authorship indicated
Keyword(s):  

1990 ◽  
Vol 35 (8) ◽  
pp. 766-767 ◽  
Author(s):  
Clifford J. Drew
Keyword(s):  

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