Intellectual Disability Clinical Trial
— SOLOfficial title:
Safer Online Lives: Use of the Internet & Social Media by People With Intellectual Disabilities
NCT number | NCT04919213 |
Other study ID # | 293445 |
Secondary ID | |
Status | Recruiting |
Phase | |
First received | |
Last updated | |
Start date | May 20, 2021 |
Est. completion date | March 1, 2023 |
The objective of this study is to explore the benefits of internet use for people with intellectual disabilities (ID), the risks they might come up against while online, the barriers people with ID might come across due to the 'digital divide', and the opportunities offered by being online. The views and experiences of family carers and/or paid carers as well as the views of other safeguarding practitioners will also be investigated.
Status | Recruiting |
Enrollment | 250 |
Est. completion date | March 1, 2023 |
Est. primary completion date | November 30, 2022 |
Accepts healthy volunteers | Accepts Healthy Volunteers |
Gender | All |
Age group | 18 Years and older |
Eligibility | Inclusion Criteria: - Adults with ID in England who use the internet. - Carers of people with ID who use the internet. - Safeguarding professionals working /have worked with people with ID that have been using/have used the internet. - All participants must be based in England Exclusion Criteria: - Participants without an ID / carers of participants without an ID/ safeguarding professionals who have not worked with people with an ID. - Participants with ID who do not have internet access or chose to not use the internet. - Participants that do not have the capacity to consent according to the Mental Capacity Act (2005). - Participants who are not able to communicate verbally will be excluded from the interviews, observations and focus groups; however, they will be included in the questionnaires assessments. - Carers of people with ID who do not use the internet. |
Country | Name | City | State |
---|---|---|---|
United Kingdom | University of Kent | Canterbury | Kent |
Lead Sponsor | Collaborator |
---|---|
University of Kent | National Institute for Health Research, United Kingdom |
United Kingdom,
Blackburn C, Read J. Using the Internet? The experiences of parents of disabled children. Child Care Health Dev. 2005 Sep;31(5):507-15. — View Citation
Chadwick, D. D., Quinn, S., & Fullwood, C. Perceptions of the risks and benefits of Internet access and use by people with intellectual disabilities. British Journal of Learning Disabilities. 2017; 45(1): 21-31.
Chiner, E., Gómez-Puerta, M., & Cardona-Moltó, M. C. Internet use, risks and online behaviour: The view of internet users with intellectual disabilities and their caregivers. British journal of learning disabilities. 2017; 45(3): 190-197.
Didden R, Scholte RH, Korzilius H, de Moor JM, Vermeulen A, O'Reilly M, Lang R, Lancioni GE. Cyberbullying among students with intellectual and developmental disability in special education settings. Dev Neurorehabil. 2009 Jun;12(3):146-51. doi: 10.1080/17518420902971356. — View Citation
Ellison, B. N., Steinfield, C., & C, L. The Benefits of Facebook "Friends:" Social Capital and College Students' Use of Online Social Network Sites. Journal of Computer-Mediated Communication. 2007; 1143-1168.
Finlay WM, Lyons E. Acquiescence in interviews with people who have mental retardation. Ment Retard. 2002 Feb;40(1):14-29. — View Citation
Forrester-Jones, R., Carpenter, J., Coolen-Schrijner, P., Cambridge, P., Tate, A., Beecham, J., ... & Wooff, D. The social networks of people with intellectual disability living in the community 12 years after resettlement from long-stay hospitals. Journal of Applied Research in Intellectual Disabilities. 2006; 19(4): 285-295.
Gravell, C. 2012. Loneliness and cruelty: people with learning disabilities and their experience of harassment, abuse and related crime in the community. London: Lemos and Crane.
Gutiérrez P, Martorell A. People with intellectual disability and ICTs. Rev. Comun. 2011; 36: 173-180.
Holmes KM, O'Loughlin N. The experiences of people with learning disabilities on social networking sites. British Journal of Learning Disabilities. 2012; 42(1): 1-5.
Kirwan G, Power A. 2013. Cybercrime: The psychology of online offenders. Cambridge: University Press.
Löfgren-Mårtenson L. Love in cyberspace: Swedish young people with intellectual disabilities and the Internet. Scandinavian Journal of Disability Research. 2008; 10(2): 125-138.
Lough E, Fisher MH. Internet use and online safety in adults with Williams syndrome. J Intellect Disabil Res. 2016 Oct;60(10):1020-30. doi: 10.1111/jir.12281. Epub 2016 May 12. — View Citation
Lussier-Desrochers D, Normand CL, Romero-Torres A, Lachapelle Y, Godin-Tremblay V, Dupont MÈ, ... & Bilodeau P. Bridging the digital divide for people with intellectual disability. Cyberpsychology: Journal of Psychosocial Research on Cyberspace. 2017; 11(1).
Meeker M, Wu L. 2018. Internet trends 2018 (Code 2018). Retrieved from https://www.businessinsider.com/mary-meeker-internet-trends-2018-full-slide-deck-2018-5?r=US&IR=T
Molin M, Sorbring E, Löfgren-Mårtenson L. Teachers' and parents' views on the Internet and social media usage by pupils with intellectual disabilities. J Intellect Disabil. 2015 Mar;19(1):22-33. doi: 10.1177/1744629514563558. Epub 2014 Dec 17. — View Citation
Normand CL, Sallafranque-St-Louis F. Cybervictimization of Young People With an Intellectual or Developmental Disability: Risks Specific to Sexual Solicitation. J Appl Res Intellect Disabil. 2016 Mar;29(2):99-110. doi: 10.1111/jar.12163. Epub 2015 Apr 13. Review. — View Citation
Sallafranque-St-Louis F, Normand CL. From solitude to solicitation: How people with intellectual disability or autism spectrum disorder use the internet. Cyberpsychology: Journal of Psychosocial Research on Cyberspace. 2017; 11(1).
Steinfield C, Ellison NB, Lampe C. Social capital, self-esteem, and use of online social network sites: A longitudinal analysis. Journal of Applied Developmental Psychology. 2008; 29(6): 434-445.
* Note: There are 19 references in all — Click here to view all references
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Online questionnaires - individuals with ID | A questionnaire will be used to investigate the online experiences of adults with ID. Four main key areas will be explored (benefits of using the internet, barriers, risks and opportunities). An easy read adapted version of the Facebook Intensity Scale (FIS; Ellison, Steinfield, & Lampe, 2007) will be used to explore participants' social media usage. | Through study completion, an average of 18 months | |
Primary | Online questionnaires - family carers, paid carers and safeguarding practitioners | The questionnaire explores the same four key areas as for people with ID (benefits of using the internet for people with ID, barriers, risks and opportunities). A modified version of the questionnaire used in Chadwick et al.'s (2017) study will be used as the basis for the stakeholder's questionnaires. | Through study completion, an average of 18 months | |
Secondary | Observations | The current study will create an app, specifically designed for people with ID. The participants will be given the task to help an avatar and guide their next step on some scenarios. Participants will be presented with multiple scenarios covering the study's four key areas. In total two avatars will be developed (one male and one female) following similar scenarios. | Through study completion, an average of 18 months | |
Secondary | A "think-aloud" observation | The observation will explore the participants' line of thought while online and their reasoning when making decisions. The participant will be asked to talk the researcher through each stage of his/her thinking process and decision making process when online. This observational method is particularly useful for people with ID who may not be very articulate. | Through study completion, an average of 18 months | |
Secondary | Qualitative interviews | 20 people with ID who use the internet will be interviewed to collect in depth information and further explore their views on the study's four key areas. The interviews will be conducted once and will be qualitative, semi- structured interviews (with prompts). | Through study completion, an average of 18 months | |
Secondary | Focus groups | The investigators will run 4 separate focus groups. One with family carers, one with paid carers, one with safeguarding practitioners and one including a mixture of paid, family carers and safeguarding practitioners to understand their perspectives and experiences on internet use for people with ID. It is intended that the carers will be independent of the subgroup of people with ID that will take part in the interviews, although there might be some overlaps. | Through study completion, an average of 18 months |
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