Family perspectives about Down syndrome

BG Skotko, SP Levine, EA Macklin… - American Journal of …, 2016 - Wiley Online Library
National medical organizations recommend that during prenatal counseling sessions,
healthcare providers discuss how having a child with Down syndrome (DS) might impact the …

Having a son or daughter with Down syndrome: Perspectives from mothers and fathers

BG Skotko, SP Levine… - American Journal of …, 2011 - Wiley Online Library
This study asks parents who have children with Down syndrome (DS) how they feel about
their lives so that such information could be shared with expectant couples during prenatal …

Having a brother or sister with Down syndrome: Perspectives from siblings

BG Skotko, SP Levine… - American Journal of …, 2011 - Wiley Online Library
This study asks brothers and sisters about their feelings and perceptions toward their sibling
with Down syndrome (DS). We analyzed valid and reliable surveys from 822 brothers and …

Parents' perspective on having a child with Down Syndrome in France

R Bertrand - American Journal of Medical Genetics Part A, 2019 - Wiley Online Library
In 2011, Skotko, Levine, and Goldstein asked parents who had children with Down
Syndrome (DS) in the United States how they felt about having a child with DS. The purpose …

Self‐perceptions from people with Down syndrome

BG Skotko, SP Levine… - American Journal of …, 2011 - Wiley Online Library
This study asks people with Down syndrome (DS), ages 12 and older, about their self‐
perception so that their information could be shared with new and expectant parents of …

Women's knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study

DM Levis, S Harris, N Whitehead… - American Journal of …, 2012 - Wiley Online Library
Women who are or may become pregnant need up‐to‐date information about Down
syndrome (DS). Asking women about their knowledge, opinions, resources, and information …

“Yeah that made a big difference!”: The importance of the relationship between health professionals and fathers who have a child with Down syndrome

F Docherty, R Dimond - Journal of genetic counseling, 2018 - Springer
Evidence suggests that medical services do not reflect the increased involvement of fathers
in childcare, a discrepancy that can often lead to feelings of exclusion and inequality …

What is a “balanced” description? Insight from parents of individuals with Down syndrome

C Hippman, A Inglis, J Austin - Journal of genetic counseling, 2012 - Wiley Online Library
Genetic counselors and parents of individuals with Down syndrome (DS) agree that
descriptions of DS in prenatal settings should be “balanced.” However, there is no …

A 'cure'for Down syndrome: what do parents want?

A Inglis, Z Lohn, JC Austin, C Hippman - Clinical Genetics, 2014 - Wiley Online Library
Recent advancements in molecular genetics raise the possibility that therapeutics or a
'cure'for Down syndrome (DS) may become available. However, there are no data regarding …

The ups and downs of Down syndrome: A qualitative study of positive and negative parenting experiences

L Farkas, JD Cless, AW Cless… - Journal of Family …, 2019 - journals.sagepub.com
The current study sought to expand current literature by providing a comparison of the
positive and negative experiences reported by parents of children with a Down syndrome …