Literature DB >> 32944718

"We have been magnified for years - Now you are under the microscope!": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities.

Dorota Chapko1, Pino Frumiento2, Nalini Edwards1, Lizzie Emeh2, Donald Kennedy2, David McNicholas2, Michaela Overton2, Mark Snead2, Robyn Steward2, Jenny M Sutton2, Evie Jeffreys2, Catherine Long2, Jess Croll-Knight2, Ben Connors2, Sam Castell-Ward2, David Coke2, Bethany McPeake2, William Renel2, Chris McGinley2, Anna Remington2, Dora Whittuck2, John Kieffer2, Sarah Ewans2, Mark Williams2, Mick Grierson1.   

Abstract

Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.

Entities:  

Keywords:  Participatory/inclusive research; attitudes; design; disability; survey; video

Year:  2020        PMID: 32944718      PMCID: PMC7116086          DOI: 10.1145/3313831.3376278

Source DB:  PubMed          Journal:  Proc SIGCHI Conf Hum Factor Comput Syst


  60 in total

1.  Consumer-based quality of life assessment: the Maryland ask me! Project.

Authors:  Gordon Scott Bonham; Sarah Basehart; Robert L Schalock; Cristine Boswell Marchand; Nancy Kirchner; Joan M Rumenap
Journal:  Ment Retard       Date:  2004-10

Review 2.  Mode of questionnaire administration can have serious effects on data quality.

Authors:  Ann Bowling
Journal:  J Public Health (Oxf)       Date:  2005-05-03       Impact factor: 2.341

3.  'It's pretty hard with our ones, they can't talk, the more able bodied can participate': staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities.

Authors:  C Bigby; T Clement; J Mansell; J Beadle-Brown
Journal:  J Intellect Disabil Res       Date:  2009-01-21

4.  Conducting behavioral research on Amazon's Mechanical Turk.

Authors:  Winter Mason; Siddharth Suri
Journal:  Behav Res Methods       Date:  2012-03

5.  Having a son or daughter with Down syndrome: perspectives from mothers and fathers.

Authors:  Brian G Skotko; Susan P Levine; Richard Goldstein
Journal:  Am J Med Genet A       Date:  2011-09-13       Impact factor: 2.802

6.  Norms of the Attitudes Toward Intellectual Disability Questionnaire.

Authors:  D Morin; M Rivard; C P Boursier; A G Crocker; J Caron
Journal:  J Intellect Disabil Res       Date:  2014-07-21

Review 7.  Self stigma in people with intellectual disabilities and courtesy stigma in family carers: a systematic review.

Authors:  Afia Ali; Angela Hassiotis; Andre Strydom; Michael King
Journal:  Res Dev Disabil       Date:  2012-07-10

8.  Developing voice and empowerment: the first step towards a broad consultation in research agenda setting.

Authors:  C J Nierse; T A Abma
Journal:  J Intellect Disabil Res       Date:  2011-02-15

9.  How you ask really matters: randomised comparison of four sexual behaviour questionnaire delivery modes in Zimbabwean youth.

Authors:  Lisa F Langhaug; Yin Bun Cheung; Sophie J S Pascoe; Petronella Chirawu; Godfrey Woelk; Richard J Hayes; Frances M Cowan
Journal:  Sex Transm Infect       Date:  2010-10-13       Impact factor: 3.519

10.  British Attitudes Towards Sexuality in Men and Women with Intellectual Disabilities: A Comparison Between White Westerners and South Asians.

Authors:  Deepak Sankhla; Kate Theodore
Journal:  Sex Disabil       Date:  2015-11-03
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  1 in total

1.  Supporting Remote Survey Data Analysis by Co-researchers with Learning Disabilities through Inclusive and Creative Practices and Data Science Approaches.

Authors:  Dorota Chapko; Pedro Rothstein; Lizzie Emeh; Pino Frumiento; Donald Kennedy; David Mcnicholas; Ifeoma Orjiekwe; Michaela Overton; Mark Snead; Robyn Steward; Jenny Sutton; Melissa Bradshaw; Evie Jeffreys; Will Gallia; Sarah Ewans; Mark Williams; Mick Grierson
Journal:  DIS (Des Interact Syst Conf)       Date:  2021-06-28
  1 in total

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