Literature DB >> 21910246

Self-perceptions from people with Down syndrome.

Brian G Skotko1, Susan P Levine, Richard Goldstein.   

Abstract

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 children with DS. We analyzed valid and reliable survey instruments from 284 people with DS on the mailing lists of 6 non-profit DS organizations around the country. Among those surveyed, nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life. In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives.
Copyright © 2011 Wiley-Liss, Inc.

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Mesh:

Year:  2011        PMID: 21910246      PMCID: PMC3740159          DOI: 10.1002/ajmg.a.34235

Source DB:  PubMed          Journal:  Am J Med Genet A        ISSN: 1552-4825            Impact factor:   2.802


  9 in total

Review 1.  Increasing response rates to postal questionnaires: systematic review.

Authors:  Phil Edwards; Ian Roberts; Mike Clarke; Carolyn DiGuiseppi; Sarah Pratap; Reinhard Wentz; Irene Kwan
Journal:  BMJ       Date:  2002-05-18

2.  The role of qualitative research in medical genetics: listening to the voices of our patients.

Authors:  Barbara A Bernhardt
Journal:  Am J Med Genet A       Date:  2008-12-15       Impact factor: 2.802

3.  With new prenatal testing, will babies with Down syndrome slowly disappear?

Authors:  Brian G Skotko
Journal:  Arch Dis Child       Date:  2009-06-15       Impact factor: 3.791

4.  Prenatal diagnosis of Down syndrome: how best to deliver the news.

Authors:  Brian G Skotko; Priya S Kishnani; George T Capone
Journal:  Am J Med Genet A       Date:  2009-11       Impact factor: 2.802

5.  Mothers of children with Down syndrome reflect on their postnatal support.

Authors:  Brian Skotko
Journal:  Pediatrics       Date:  2005-01       Impact factor: 7.124

6.  Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers.

Authors:  Brian G Skotko
Journal:  Am J Obstet Gynecol       Date:  2005-03       Impact factor: 8.661

7.  A comparison of Likert scale and visual analogue scales as response options in children's questionnaires.

Authors:  H van Laerhoven; H J van der Zaag-Loonen; B H F Derkx
Journal:  Acta Paediatr       Date:  2004-06       Impact factor: 2.299

Review 8.  Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news.

Authors:  Brian G Skotko; George T Capone; Priya S Kishnani
Journal:  Pediatrics       Date:  2009-09-28       Impact factor: 7.124

Review 9.  Maximising response to postal questionnaires--a systematic review of randomised trials in health research.

Authors:  Rachel A Nakash; Jane L Hutton; Ellen C Jørstad-Stein; Simon Gates; Sarah E Lamb
Journal:  BMC Med Res Methodol       Date:  2006-02-23       Impact factor: 4.615

  9 in total
  25 in total

1.  "This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening.

Authors:  Rosemary J Steinbach; Megan Allyse; Marsha Michie; Emily Y Liu; Mildred K Cho
Journal:  Am J Med Genet A       Date:  2015-11-14       Impact factor: 2.802

2.  Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines.

Authors:  William F Sullivan; Heidi Diepstra; John Heng; Shara Ally; Elspeth Bradley; Ian Casson; Brian Hennen; Maureen Kelly; Marika Korossy; Karen McNeil; Dara Abells; Khush Amaria; Kerry Boyd; Meg Gemmill; Elizabeth Grier; Natalie Kennie-Kaulbach; Mackenzie Ketchell; Jessica Ladouceur; Amanda Lepp; Yona Lunsky; Shirley McMillan; Ullanda Niel; Samantha Sacks; Sarah Shea; Katherine Stringer; Kyle Sue; Sandra Witherbee
Journal:  Can Fam Physician       Date:  2018-04       Impact factor: 3.275

3.  Invasive prenatal genetic testing: A Catholic healthcare provider's perspective.

Authors:  Jay J Bringman
Journal:  Linacre Q       Date:  2014-11

Review 4.  Prenatal testing for intellectual disability: misperceptions and reality with lessons from Down syndrome.

Authors:  Kruti Acharya
Journal:  Dev Disabil Res Rev       Date:  2011

5.  Teaching family medicine residents about care of adults with intellectual and developmental disabilities.

Authors:  Ian Casson; Dara Abells; Kerry Boyd; Elspeth Bradley; Meg Gemmill; Elizabeth Grier; Jane Griffiths; Brian Hennen; Alvin Loh; Yona Lunsky; Kyle Sue
Journal:  Can Fam Physician       Date:  2019-04       Impact factor: 3.275

6. 

Authors:  William F Sullivan; Heidi Diepstra; John Heng; Shara Ally; Elspeth Bradley; Ian Casson; Brian Hennen; Maureen Kelly; Marika Korossy; Karen McNeil; Dara Abells; Khush Amaria; Kerry Boyd; Meg Gemmill; Elizabeth Grier; Natalie Kennie-Kaulbach; Mackenzie Ketchell; Jessica Ladouceur; Amanda Lepp; Yona Lunsky; Shirley McMillan; Ullanda Niel; Samantha Sacks; Sarah Shea; Katherine Stringer; Kyle Sue; Sandra Witherbee
Journal:  Can Fam Physician       Date:  2018-04       Impact factor: 3.275

7.  Birth of a healthy child after preimplantation genetic screening of embryos from sperm of a man with non-mosaic Down syndrome.

Authors:  Lusine Aghajanova; Jean M Popwell; Ryszard J Chetkowski; Christopher N Herndon
Journal:  J Assist Reprod Genet       Date:  2015-07-03       Impact factor: 3.412

8.  Epistemic Virtue, Prospective Parents and Disability Abortion.

Authors:  James B Gould
Journal:  J Bioeth Inq       Date:  2019-08-01       Impact factor: 1.352

9.  Best ethical practices for clinicians and laboratories in the provision of noninvasive prenatal testing.

Authors:  M A Allyse; L C Sayres; M Havard; J S King; H T Greely; L Hudgins; J Taylor; M E Norton; M K Cho; D Magnus; K E Ormond
Journal:  Prenat Diagn       Date:  2013-05-21       Impact factor: 3.050

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

Authors:  A Inglis; Z Lohn; J C Austin; C Hippman
Journal:  Clin Genet       Date:  2014-03-21       Impact factor: 4.438

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