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Intellectual DisabilitySOLNCT04919213

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

An observational study of Intellectual Disability, run by University of Kent at 1 site in United Kingdom.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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Trial 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. Read more about this study

Who is it for?
Ages 18 years and olderHealthy volunteers can take part
Conditions the study is for
Intellectual Disability
How many people
429 participants
Where
1 siteUnited Kingdom
Study dates
11 May 2021to 31 Jan 2024
Phase
Observational
Are there results?
None posted in the registry

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • Healthy volunteers accepted
  • Adult, Older adult

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

Who may be able to join

  • 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

Who cannot join

  • 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.

Trial locations and contacts

1 site in 1 country.

United Kingdom1 site
  • University of Kent

    Canterbury, Kent, CT2 7NF

Other trials in United Kingdom

About this study

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.

Read the detailed description

The most recent estimate is that more than three billion people are using the internet globally and people with ID are not an exception. Children and adults with ID increasingly live in homes with internet access and use the internet to get information about care, health, shopping, accessing social media sites, downloading or watching videos etc.

Benefits of the Internet: Compared to the general population, people with ID are often more likely to have narrow social networks consisting of either other people with disabilities, their families and/or their carers, usually feeling socially isolated and lonely. The internet can help people with ID form and maintain social relationships, but also gain access to expert guidance and information regarding care, health, employment etc.

Online Vulnerabilities: Previous research has identified a link between the use of internet and online risks for both people with and without ID. Such risks include abuse through online dating, being the victim of a fraud etc. Although anyone can be at risk of the above, it has been suggested that such risks are increased when individuals are particularly vulnerable to abuse. Research evidence has demonstrated that people with ID have several negative experiences online such as verbal abuse, sexual exploitation, mistreatment and violence. Furthermore, it has been shown that people with ID who have previous histories of abuse, isolation, and/or depression are more at risk of becoming victims of online sexual exploitation and abuse than others.

Acquiescence and acceptability are also very common in this population. Their desire to "fit in", be liked and willingness to please, might place people with ID in a vulnerable position. Likewise, studies have suggested that the type and severity of an ID, as well as age, could be influencing online risks. For example, people with lower IQ or with lack of social communication skills might have difficulties understanding other people's intentions, which makes them particularly vulnerable to online exploitation, abuse, theft and manipulation.

Existing Evidence: Given that only a very small amount of studies have looked at the internet use and risks for people with ID, there is no study looking at the benefits and opportunities of internet use. Therefore, there is a clear need to investigate this further. Also, all existing studies have focused on small numbers of participants leaving a clear gap in the literature. Only a small number of studies have taken into account family and paid carers' views. Even though the findings derived from these studies cannot be generalised, they act as a useful starting point to highlight the need for further exploration of internet use and online risks for people with ID.

In summary, the purpose of the proposed study is to explore the following four key areas: benefits of using the internet, barriers people with ID face, online risks and online opportunities. The study will also investigate the views (positive and negative) of different stakeholders on the issue; such as family carers, paid carers, safeguarding practitioners, police and people with ID. Furthermore, the proposed study will address the gap in the literature and enhance social care practice by highlighting the importance of providing support for use of internet in order to reduce the current 'digital divide' and also identify areas that future interventions around online safety for people with ID should target.

Keywords
Intellectual Disability, Internet use, Social Inclusion, Risks, Quality of life, Service provision
Medical subject headings
Intellectual Disability, Social Inclusion

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

Study groups in NCT04919213
Study groupRoleWhat they receive
Individuals with Intellectual DisabilitiesIndividuals 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 carersFamily 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 carersPaid 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 responsibilitiesProfessionals 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.

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. 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.

    Measured: Through study completion, an average of 18 months

  2. 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.

    Measured: Through study completion, an average of 18 months

Secondary outcomes (4)
  1. 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.

    Measured: Through study completion, an average of 18 months

  2. 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.

    Measured: Through study completion, an average of 18 months

  3. 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).

    Measured: Through study completion, an average of 18 months

  4. 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.

    Measured: Through study completion, an average of 18 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted9 Jun 2021
  2. Study start11 May 2021
  3. Primary completion18 Dec 2023
  4. Study completion31 Jan 2024

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Case only
Time perspective
Cross-sectional
Enrolment
429 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT04919213
Sponsor's protocol ID
293445
Acronym
SOL
Status last verified
Jun 2021
First submitted
2 Jun 2021
Last updated
5 Aug 2024
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
No

Publications

  • 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.

    PubMed 16101645
  • 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.

    PubMed 19466622
  • 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.

    PubMed 11806730
  • 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.

    PubMed 27174494
  • 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.

    PubMed 25524596
  • 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.

    PubMed 25871891
  • 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.

  • 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.

  • 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.

  • 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.

Questions about this trial

What is this clinical trial studying?

An observational study of Intellectual Disability, run by University of Kent at 1 site in United Kingdom.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 4 inclusion and 5 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 5 Aug 2024. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Online questionnaires - individuals with ID (time frame: Through study completion, an average of 18 months). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT04919213, which also lists 19 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 5 Aug 2024.

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