Internet use and digital participation in everyday life : Adolescents and young adults with intellectual disabilities

Sammanfattning: 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.