Parental perspectives on research for Down syndrome

‘Until the Cows Came Home’: Issues for Early Intervention Activities? Parental Perspectives on the Early Years Learning of Their Children with down Syndrome

Contemporary Issues in Early Childhood ◽

10.2304/ciec.2008.9.1.66 ◽

2008 ◽

Vol 9 (1) ◽

pp. 66-79 ◽

Cited By ~ 3

Author(s):

Jonathan Rix ◽

Alice Paige-Smith ◽

Helen Jones

Keyword(s):

Down Syndrome ◽

Early Intervention ◽

Early Years ◽

Children With Down Syndrome ◽

Parental Perspectives

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Parental Perspectives on Pharmacological Clinical Trials: a Qualitative Study in Down Syndrome and Fragile X Syndrome

Journal of Genetic Counseling ◽

10.1007/s10897-017-0111-x ◽

2017 ◽

Vol 26 (6) ◽

pp. 1333-1340 ◽

Cited By ~ 6

Author(s):

Victoria Reines ◽

Krista Charen ◽

Tracie Rosser ◽

Arri Eisen ◽

Stephanie L. Sherman ◽

...

Keyword(s):

Clinical Trials ◽

Down Syndrome ◽

Qualitative Study ◽

Fragile X Syndrome ◽

Fragile X ◽

Parental Perspectives

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Adolescents' Perception of Epilepsy Compared With Other Chronic Diseases: “Through a Teenager's Eyes”

Journal of Child Neurology ◽

10.2310/7010.2006.00053 ◽

2006 ◽

Vol 21 (3) ◽

pp. 214-222 ◽

Cited By ~ 3

Author(s):

Christina Cheung ◽

Elaine Wirrell

Keyword(s):

Down Syndrome ◽

Chronic Disease ◽

Chronic Diseases ◽

Social Impact ◽

Tertiary Care ◽

Chronic Illnesses ◽

Cognitively Normal ◽

Immunodeficiency Virus ◽

Parental Perspectives ◽

Physical Impact

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).

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