Safer Online Lives: Use of the Internet & Social Media by People With Intellectual Disabilities

NCT04919213 | Completed

• 1 other identifier: 293445
• Study Type: observational
• Target: 429
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Intellectual Disability

Keywords

Intellectual Disability; Internet use; Social Inclusion; Risks; Quality of life; Service provision

Outcome Measures

Primary Outcomes (2)

• 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

• 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 Outcomes (4)

• Observations

  Through study completion, an average of 18 months

• A "think-aloud" observation

  Through study completion, an average of 18 months

• Qualitative interviews

  Through study completion, an average of 18 months

• Focus groups

  Through study completion, an average of 18 months

Study Arms (4)

Individuals with Intellectual Disabilities

Individuals will be invited to take part in an online survey (paper version will also be available). The participants will be recruited through advertisements on relevant platforms (e.g., Facebook, Twitter) and through relevant social care organisations. The study hopes to recruit 100 individuals from all over England (UK). A subgroup will be asked if they would like to take part in a one-to-one open-ended interview (n=20) and/or in direct observations (n=30).

Family carers

Family carers (n=50) of people with intellectual disabilities in England, who use the internet, will be invited to take part in an online survey. A subgroup of family carers (n=7) will be asked if they would like to take part in a focus group.

Paid carers

Paid carers (n=50) of people with intellectual disabilities in England, who use the internet, will be invited to take part in an online survey. A subgroup of paid carers (n=7) will be asked if they would like to take part in a focus group.

Professionals with safeguarding responsibilities

Professionals with safeguarding duties (e.g., social workers, learning disability nurses, police and safeguarding adults board members) supporting people with ID in England who use the internet will also be invited to take part in an online survey (n=50). A subgroup (n=7) from London and Kent (England, UK) will be asked if they would like to take part in a focus group.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults with ID who use the internet and carers and professionals who support adults who use the internet.

You may qualify if:

• 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

You may not qualify if:

• 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.

Sponsors & Collaborators

• University of Kent: lead
• National Institute for Health Research, United Kingdom: collaborator

Study Sites (1)

University of Kent

Canterbury, Kent, CT2 7NF, United Kingdom

Location

Related Publications (19)

• Blackburn C, Read J. Using the Internet? The experiences of parents of disabled children. Child Care Health Dev. 2005 Sep;31(5):507-15. doi: 10.1111/j.1365-2214.2005.00541.x.

  PMID: 16101645 BACKGROUND

• 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.

  PMID: 19466622 BACKGROUND

• Finlay WM, Lyons E. Acquiescence in interviews with people who have mental retardation. Ment Retard. 2002 Feb;40(1):14-29. doi: 10.1352/0047-6765(2002)0402.0.CO;2.

  PMID: 11806730 BACKGROUND

• 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.

  PMID: 27174494 BACKGROUND

• Molin M, Sorbring E, Lofgren-Martenson 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.

  PMID: 25524596 BACKGROUND

• 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.

  PMID: 25871891 BACKGROUND

• 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.

  BACKGROUND

• 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.

  BACKGROUND

• 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.

  BACKGROUND

• 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.

  BACKGROUND

• 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.

  BACKGROUND

• Gutiérrez P, Martorell A. People with intellectual disability and ICTs. Rev. Comun. 2011; 36: 173-180.

  BACKGROUND

• 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.

  BACKGROUND

• Kirwan G, Power A. 2013. Cybercrime: The psychology of online offenders. Cambridge: University Press.

  BACKGROUND

• 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.

  BACKGROUND

• 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).

  BACKGROUND

• 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

  BACKGROUND

• 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).

  BACKGROUND

• 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.

  BACKGROUND

Related Links

• Research Project homepage

MeSH Terms

Conditions

Intellectual Disability; Social Inclusion

Condition Hierarchy (Ancestors)

Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Neurodevelopmental Disorders; Mental Disorders; Social Behavior; Behavior

Study Officials

• Paraskevi Triantafyllopoulou, PhD

  University of Kent

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 2, 2021
• First Posted: June 9, 2021
• Study Start: May 11, 2021
• Primary Completion: December 18, 2023
• Study Completion: January 31, 2024
• Last Updated: August 5, 2024

Record last verified: 2021-06

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)