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

August 2, 2024 updated by: University of Kent
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.

Study Overview

Status

Completed

Conditions

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.

Study Type

Observational

Enrollment (Actual)

429

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United Kingdom
    • Kent
      • Canterbury, Kent, United Kingdom, CT2 7NF
        • University of Kent

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

Yes

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.

Description

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.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Online questionnaires - individuals with ID
Time Frame: Through study completion, an average of 18 months
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
Time Frame: Through study completion, an average of 18 months
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 Outcome Measures

Outcome Measure
Measure Description
Time Frame
Observations
Time Frame: Through study completion, an average of 18 months
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
A "think-aloud" observation
Time Frame: Through study completion, an average of 18 months
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
Qualitative interviews
Time Frame: Through study completion, an average of 18 months
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
Focus groups
Time Frame: Through study completion, an average of 18 months
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

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Kent

Collaborators

National Institute for Health Research, United Kingdom

Investigators

  • Principal Investigator: Paraskevi Triantafyllopoulou, PhD, University of Kent

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

May 11, 2021

Primary Completion (Actual)

December 18, 2023

Study Completion (Actual)

January 31, 2024

Study Registration Dates

First Submitted

June 2, 2021

First Submitted That Met QC Criteria

June 8, 2021

First Posted (Actual)

June 9, 2021

Study Record Updates

Last Update Posted (Actual)

August 5, 2024

Last Update Submitted That Met QC Criteria

August 2, 2024

Last Verified

June 1, 2021

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 293445

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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