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

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

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

Conditions
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Intellectual Disability

Participation Criteria
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Eligibility Criteria
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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.

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Individuals with Intellectual Disabilities<br>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<br>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<br>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<br>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?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 | 
| 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 | 
| 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 | 
| 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 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Intellectual Disability, Internet use, Social Inclusion, Risks, Quality of life, Service provision