This chapter explores why digital participation is important for young people with intellectual or developmental disabilities, the extent of their digital participation, as well as the multiple environmental and personal challenges to developing digital competencies that allow for digital participation. The chapter explores the complexities of supporting digital participation and ways that digital competencies can be developed. Specific examples are given of research that has taken place in the UK, Sweden and Australia. Consideration is given to the response to the Covid-19 pandemic which has potentially changed the landscape of issues around digital inclusion due to the rapid move online of everyday activities.

Many services have become digitized in society, including health services. Although there are many advantages to eHealth services, some segments of the population cannot reap those benefits.

Objectives: This study aimed to: 1- describe how people with intellectual disability use the internet in Sweden; and 2- understand the nature of the contextual and personal barriers these users face when trying to access eHealth services in particular.

Methods: Data from the nationwide survey “Swedes with Impairment and the Internet 2021” (SMFOI-21) were extracted for a subsample of 154 people with self-declared intellectual disability.

Results: Findings reveal that people with intellectual disability used the internet predominantly for entertainment purposes. Challenges arose in more complex online activities, like internet searches, logging into eHealth services, booking medical appointments, and financial transactions. Participants relied on support from family, guardians or staff to read, write, create and memorise passwords, understand content, or solve technical problems encountered. They expressed a desire to engage more independently in the digital society but faced barriers due to the cognitive requirements of using apps and the internet as designed by computer scientists, difficulties in navigating complex online processes, such as eHealth services, and a lack of accessible infrastructure. Conclusion: This research underscores the importance of improved accessibility, simplified interfaces, clearer instructions, and a supportive ecosystem to enhance their digital inclusion. It is a matter of people with intellectual disability being afforded equal rights to access health services.

BackgroundA digital lag has been reported on access to the internet and performing internet activities for young people with learning disabilities in everyday life. AimThe aim of this study is to explore environmental opportunities and challenges when performing internet activities and how internet use influences social and community participation for young people with learning disabilities from the perspectives of the target group. MethodsAn inductive design was applied, with focused observations and follow-up interviews of 15 internet-using young persons with learning disabilities in their everyday settings. The data was analysed interpretatively using open coding. FindingsThe environment offered both opportunities and challenges in terms of the design of digital devices and digital support. Support from peers was often preferred. All participants performed internet activities related to social participation although not all used social media. Searching for information was performed, however, finding the information or understanding it was challenging and led to restricted participation in the community. ConclusionMore examples of internet use positively influencing social participation were found, contrary to community participation. It is indicated that concrete learning situations when using the internet for social participation were more adapted to the participants and promoted this type of participation, contrary to situations of internet use influencing community participation.

Vad handlar boken om?

Den här boken är en lättläst version och handlar om hur unga med IF i Sverige använder internet. IF betyder intellektuell funktionsnedsättning eller utvecklingsstörning. Kunskapen i boken kommer från forskning. Jag som har forskat heter Kristin Alfredsson Ågren. Jag har också haft två handledare som har hjälpt mig med forskningen.

Sammanfattning: Unga med IF använder internet ganska mycket

 Vår forskning visar att unga med IF använder internet ganska mycket. Men andra ungdomar använder internet mer. Många unga med IF spelar spel på internet. De använder oftast mobil eller surfplatta. Föräldrar till unga med IF är inte så oroliga för att det kan finnas risker med internet.

Många behöver mer stöd för att delta på internet

Många unga med IF tycker ändå det är svårt att till exempel använda dator. De kan också ha svårt att hitta information på internet. De flesta unga med IF behöver stöd för att använda internet. Ungdomar, föräldrar och personal kan tillsammans skapa nya stöd som gör det enklare att använda internet. Internet måste bli mer tillgängligt och information måste bli enklare att förstå. Då kan ungdomar med IF bli mer delaktiga i samhället.

Background: The aim is to explore and describe access to the internet and how it is used among adolescents and young adults with mild and moderate intellectual disabilities in their everyday settings. Method: Data were collected through observations of and interviews with 15 participants with intellectual disabilities, aged 13-25, on access and use of the internet in school or work and at home or in their free time. A qualitative content analysis was used. Results: Main findings were categorised into: Access to the internet in different settings, Challenges when using the internet and Strategies to handle the digital environment and take part in internet activities.Conclusions: This study revealed that participants had access to internet connections and to a high number of internet-enabled devices. Participants use the internet through strategies when doing internet activities, for example using pictures and reducing the number of internet-enabled devices used in their everyday settings.

Internet use is an integrated part of everyday life, especially among young people. However, knowledge of this for young people with disabilities is scarce. This study investigates digital participation of adolescents with intellectual disabilities by comparing aspects of Internet use among adolescents with and without intellectual disabilities. Cross-sectional comparative design was used and a national survey from the Swedish Media Council was cognitively adapted for adolescents with intellectual disabilities aged 13-20 years. The results reveal that a significantly lower proportion of the 114 participating adolescents with intellectual disabilities had access to Internet-enabled devices and performed Internet activities, except for playing games, than the reference group (n = 1161). The greatest difference was found in searching for information. Analyses indicate that adolescents with intellectual disabilities are following a similar pattern of Internet use as the reference group, but a digital lag is prevalent, and a more cognitively accessible web could be beneficial.

Background: In contemporary society internet and digital competencies are used to perform activities.

Aim: The aim of this study is to investigate opportunities and risks of internet use as perceived by the parents of adolescents with intellectual disabilities (ID) in comparison with a national reference group of parents of adolescents.

Methods: This was a cross-sectional study with group comparisons using a national survey. Analyses were carried out using Fisher's exact test and logistic regression to control for confounding factors.

Results: A significantly higher proportion of parents of adolescents with ID perceive opportunities associated with internet use and playing games, and a lower proportion perceive risks with negative consequences, compared with the reference group. Significantly more parents of adolescents with ID perceive their adolescent never use smartphones and social media compared with the reference group. Fewer parents of adolescents with ID have concerns about online risks for their adolescents compared with the reference group.

Conclusion and Significance: The results provide new knowledge for occupational therapists to support positive risk-taking in internet-use for adolescents with ID, in collaboration with their parents, to enable the development of digital competencies and digital participation in everyday life in a digitalised society.

Background: Internet use is an integral part of everyday life in contemporary society, especially among young people. It is used to perform activities in everyday life by an increasing proportion of the population. However, knowledge about access to and use of the internet by adolescents and young adults with intellectual disabilities (ID) is scarce. More knowledge is needed about digital competencies and digital participation in their everyday lives.

Aim: The overall aim of this thesis was to explore and describe internet access and use, and digital participation in everyday life among adolescents and young adults with intellectual disabilities.

Designs and Methods: The thesis is based on results from three studies. In study I, the focus was on access to and use of the internet in the everyday settings of school/work, at home or during free time. Data was collected through observations, conversations, and follow-up interviews with 15 participants with ID, aged 13–24 years. The data was analysed using qualitative content analysis. In studies II and III, the design was cross-sectional and comparative, using national surveys on media and internet use from the Swedish Media Council, from which comparative data from reference groups could be gained. In study II, the national survey of adolescents on internet access and use was cognitively adapted for adolescents with intellectual disabilities, aged 13–20 years, in several steps. This made it accessible to a total selection of pupils from all the special schools in four diverse municipalities in two different regions of Sweden. In study III, the national survey of parents about opportunities and risks of internet use by their adolescents was used. The surveys were sent to a sample of n=318 adolescents with ID and their caregivers/parents. The responses were higher for the adolescents (n=114) than for the parents (n=99), and the response rate of the adolescents with ID was equivalent as that of the reference group, at 36% and 38% respectively. In study II, chi-square tests were used and, when necessary, Fisher’s exact test to analyse the data. In study III, analyses were carried out using Fisher’s exact test and logistic regression to control for confounding factors.

Results: This thesis show that access to internet-enabled devices is lower for adolescents with ID than for the general population, except for tablets (study II). All internet activities, except playing games, are performed by fewer adolescents with ID compared to the reference group (study II) and the time spent on the internet activities is less (study III). Both environmental challenges and personal abilities present difficulties in internet access and use (study I) and affect digital participation for adolescents and young adults with ID. Furthermore, a significantly higher proportion of parents of adolescents with ID perceive opportunities associated with internet use and playing games, and a lower proportion perceive risks with negative consequences, or have concerns about online risks, compared with the reference group (study III). Significantly more parents of adolescents with ID state that their adolescent never uses smartphones or social media compared with the reference group. Strategies used to handle the digital environment and take part in internet activities were found and described, such as getting support from others, reducing the number of internet-enabled devices used and personalising them. Gaining access to internet content and performing internet activities was facilitated by picture-, word- and voice-based strategies, which were used by adolescents and young adults with both mild and moderate ID (study I).

Conclusions: The conclusions are that the results show a lag in internet access and use and in digital participation by adolescents and young adults with ID. Adolescents and young adults with ID were accessing and using the internet in similar ways to the reference group, but to a lesser extent. The impact of the participants’ environment, together with their lack of certain abilities, make the development of digital competencies difficult for them. The result that parents of adolescents with ID perceive more opportunities and fewer risks associated with the internet provides new knowledge to support positive risk-taking in internet use and enable digital participation by adolescents and young adults with ID. Support can be developed in collaboration between the adolescent/young adult, their parents and teachers, and staff in community-based services and should involve physical, social and digital environmental adaptations. These can enable the development of digital competencies and minimise the lag in digital participation in everyday life, which is needed for participation in today’s digitalised society.

Bakgrund till avhandlingen: Internetanvändning är en integrerad del av vardagen i dagens samhälle, särskilt bland ungdomar. Internet används för att utföra en mängd aktiviteter i vardagen av alltfler personer. Dock är kunskapen om tillgång till, samt användning av internet i vardagliga aktiviteter för ungdomar med intellektuell funktionsnedsättning (IF) bristfällig. Ökad kunskap behövs om digitala kompetenser och digital delaktighet i vardagen för ungdomar och unga vuxna med IF.

Syftet med avhandlingen: Det övergripande syftet med denna avhandling var att utforska och beskriva tillgång till och användning av internet och digital delaktighet i vardagen bland ungdomar och unga vuxna med IF.

Hur studierna genomfördes: Avhandlingen bygger på resultat från tre delstudier. I studie I samlades data in via observationer av och uppföljande intervjuer med 15 deltagare med IF, i åldern 13–24 år. Fokus låg på tillgång till och användning av internet i deras vardagliga miljöer: skola/arbete, hemma eller på fritiden. Data analyserades med kvalitativ innehållsanalys. I studie II och III var designen jämförande tvärsnittsstudier. Nationella enkäter från Statens Medieråd om medie- och internetanvändning användes där jämförande data från referensgrupper kunde erhållas. I studie II gjordes kognitiva anpassningar av den nationella enkäten om medie- och internetanvändning i flera steg för målgruppen ungdomar med IF i åldern 13–20 år. Anpassningen till en lättläst version av enkäten, med bildstöd för de som behövde det, gjorde den möjlig att skicka till ett totalurval av elever från alla särskolor i fyra olika kommuner i två olika regioner i Sverige. I studie III användes den nationella enkäten till föräldrar om möjligheter och risker med internet- och medieanvändning för deras ungdomar. Enkäterna skickades till ett urval av n = 318 ungdomar med IF och deras vårdgivare/förälder. Antalet svar var fler från ungdomarna (n = 114) jämfört med föräldrarna (n = 99), och svarsfrekvensen för ungdomar med IF var i paritet med referensgruppens, med 36% för ungdomar med IF, jämfört med 38% i referensgruppen. I studie II användes chi-två tester och vid behov Fisher’s exakta test, för analys av data. I studie III genomfördes analyser med Fisher’s exakta test och logistisk regression för att kontrollera för confounding faktorer dvs övriga faktorer som kan påverka.

Resultaten som framkom i studierna: Resultaten av studierna visar att tillgången till enheter för internetanvändning är lägre för ungdomar med IF än för ungdomar generellt, med undantag för surfplattor (studie II). Alla internet-aktiviteter, utom att spela spel, utförs av en lägre andel ungdomar med IF jämfört med referensgruppen (studie II) och tiden som spenderas på internet-aktiviteterna är lägre för ungdomar med IF (studie III). Utmaningar i den omgivande miljön, såväl som personliga förmågor leder till svårigheter med internetuppkoppling och internetanvändning (studie I), och påverkar digital delaktighet för ungdomarna och de unga vuxna med IF. Möjligheter och risker med att använda internet visade att en signifikant högre andel föräldrar till ungdomar med IF uppfattar möjligheter förknippade med internetanvändning och att spela spel, och en lägre andel upplever risker med negativa konsekvenser, eller oroar sig för risker med internet jämfört med referensgruppen (studie III). Signifikant fler föräldrar till ungdomar med IF uppfattar dock att deras ungdomar aldrig använder smartphones och sociala medier jämfört med referensgruppen. Strategier, som ungdomar och unga vuxna med både lindrig och måttlig IF använder för att hantera den digitala miljön och delta i internet aktiviteter identifierades (studie I). Strategierna innebär; att få stöd från andra; att minska andelen enheter som används för internetanvändning och att främsta använda enheter som är utformade för/av person; samt att använda stödstrategier som är baserade på ord- bild- och röststöd för att kunna utföra internet-aktiviteter.

Kunskapen som avhandlingen har bidragit med: Sammantaget visar resultaten en eftersläpning i tillgång till och användning av internet, liksom i digital delaktighet för ungdomar och unga vuxna med IF. Även om deltagarna har tillgång till och använder internet, är det i lägre utsträckning än referensgruppen. Faktorer i miljön tillsammans med deltagarnas personliga förmågor gör utvecklingen av digital kompetens svår för deltagarna. Resultatet att fler föräldrar till ungdomar med IF uppfattar möjligheter och färre uppfattar risker med internet är ny kunskap som kan stödja positivt risktagande i internetanvändning och möjliggöra digital delaktighet för ungdomar med IF. Stöd kan utvecklas i samarbete mellan ungdomar, deras föräldrar och personal, i både skola och kommunal omsorgsverksamhet, och involvera anpassningar av såväl fysisk, som social och digital miljö för utveckling av digitala kompetenser. Genom detta kan eftersläpningen i digital delaktighet i vardagen minimeras, vilket krävs för delaktighet i dagens digitaliserade samhälle