2.1. Advantages and disadvantages of digital media for people with ID and PIMD
People with PIMD are an extremely heterogeneous group that is not clearly defined in the international discourse. Instead, there are different attempts to describe the persons.
Dins and Keeley (2022) summarize: “Most descriptions of this group of persons refer to medical classifications.” The latest and 11th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-11) include the following key characteristics: “A profound disorder of intellectual development is a condition (…) characterized by significantly below average intellectual functioning and adaptive behavior that are approximately four or more standard deviations below the mean.”
Thus, the group of persons with PIMD consists of people with a profound intellectual disability (ID) in combination with severe motor disabilities (Nakken and Vlaskamp, 2007). Additionally, they commonly experience severe communication disabilities, sensory disabilities, and they often have complex health needs (Doukas et al., 2017). This is also in line with the definition of the group given by the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD), which describes these individuals as “a heterogeneous group. They are characterized by very severe cognitive, neuromotor and/or sensory disabilities, which lead to very intensive support needs” Bernasconi (2007). These support needs manifest across all domains of daily life, so that a common characteristic of this group of people is that they “typically require daily support in a supervised environment for adequate care” (Dins and Keeley, 2022).
All of these various congenital conditions (e.g., autism, cerebral palsy) in addition to acquired disabilities (e.g., amyotrophic lateral sclerosis, stroke) and contextual factors (e.g., lack of augmentative and alternative communication (AAC) tools or lack of expertise in their use) lead to complex communication needs: “People with PIMD experience extensive problems in communication. Language is limited or non-existent and communication may include very subtle cues including physiological signals such as a rise in body temperature or change in level of alertness” (Wessels and van der Putten, 2017). This poses particular challenges for support, because “due to the fact that these signals are highly individual, the number of those interaction partners who are actually capable of understanding and appropriately reacting to these signals is very restricted” (Engelhardt et al., 2020). Thus, in all considerations on the design of participation opportunities, a person-centered approach must be taken into account, which carefully considers the communicative and cognitive abilities of each individual with PIMD. It is particularly significant to regard communication and interaction as an ongoing, responsive process. To facilitate the realization of full and effective participation of people with PIMD, it is imperative to consider not only their individual communication needs but also to ensure that their supportive environment adopt a responsive and interactive stance toward these needs.
Therefore, it can be stated that successful and functional communication capabilities represent a key to participation in all social and societal areas, which is particularly evident in the context of digitalisation, since digital media are primarily communication media. Bosse et al. (2020) state, that people with CNN face additional barriers that prevent them from using the Internet and social media more extensively. Consequently, Kleinert (2020) states that if there is no possibility of communication with, via and in digital media, exclusion and disadvantage are often the result.
Findings on the use of digital media and on the possibilities of digital participation of people with (intellectual) disabilities are currently still a desideratum, even though there is an increase in studies that also take this group of people into account (Caton et al., 2022). Basically, it can be stated that “existing surveys examining Internet access and use often exclude persons with intellectual disabilities due to questions not being cognitively adapted. Therefore, knowledge about access to and use of the Internet comparing adolescents with intellectual disabilities with young people without intellectual disabilities is limited (Chadwick et al., 2013, 2017; Alfredsson Ågren et al., 2020).
The studies that also consider the group of adults with ID highlight potential benefits as well as risks. For instance, Chadwick et al. (2013) found in their study that older people and people with cognitive, physical or sensory impairments in particular experienced difficulties in using digital media or the internet. Alfredsson Ågren et al. (2020) conducted a comparative study between young people with and without disabilities and concluded that internet use differs significantly between the two groups: “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 = 1,161).”
Advantages are highlighted in terms of personality development through self-expression and self-awareness (Steinfield et al., 2008; Caton and Chapman, 2016). Furthermore, opportunities for expanding social contacts and interactions are seen. Löfgren-Mårtenson (2008) describes the social internet as a new “free zone” for people with intellectual disabilities for socialization and personal development without constant control by caregivers.
These positive aspects are contrasted in other studies with aspects around the so-called digital divide (see below), which means that the potential benefits can often not be accessed at all due to structural difficulties (Chadwick et al., 2013). Caton and Chapman (2016) also confirm that although people with ID do have positive experiences with social media but generally have fewer opportunities to access them. A study examining the use of Facebook by individuals with intellectual disabilities identifies potential advantages, including interaction with others, self-presentation, expanding social networks, and equal participation. However, it also acknowledges the limited access opportunities both in terms of content and technology (Shpigelman and Gill, 2014).
In addition to the identification of positive aspects, there seems to be a tendency to regard people with ID as particularly vulnerable and in need of support in view of the potential risks. In this context, it should be questioned whether the risks associated with internet use apply exclusively to people with ID or whether they are not general risks in the use of social media or the internet? Accordingly, Borgström et al. (2019) also ask whether a protective approach to the internet might also become a barrier to access.
Seale (2014) discusses how potential risks can be reconciled with the simultaneous advantages of modern digital technologies and argues for an approach that also sees risks as positive potential for development. Accepting and dealing with risks can then ultimately lead to acquiring enhanced competences in digital media and gaining more control over one's own (digital) life. Therefore, the avoidance of risks should be considered secondary to the developmental potentials that arise in the use of social media by people with ID: “the potential benefits outweigh the potential harm” (Seale, 2014).
The increasing pervasion of everyday life by and through media reveals a division between people who participate in and through media and those who are unable to do so. In the context of internet use, this disparity is commonly referred to as a 'digital divide'. According to Norris (2001) this term refers to a multi-dimensional phenomenon that must be focussed on a global level (i.e., with regard to different countries and their respective access possibilities), on a democratic level (i.e., with regard to a population's opportunities for co-determination and information) and finally on a social level (i.e., on individual possibilities and preconditions for use). For people without access to digital media, this creates new risks of (digital) exclusion. This applies in particular to people with disabilities. These risks arise from a combination of structural preconditions, personal skills and technical conditions.
This is compounded by the fact that “cognitive disabilities are the least understood and least discussed type of disability among web developers. As a result, developers rarely design web content to be accessible to people with cognitive disabilities. This is unlikely to change overnight, because the amount of research related to the accessibility of web content is relatively scarce” (Bohman, 2004).
In addition to internet applications, the field of digital media also includes assistive technologies (AT). These are considered technical aids that are intended to compensate for physical and cognitive impairments for medical-rehabilitative purposes Schüller et al. (2021). Weed et al. (2011) distinguish various categories of assistive technologies, including augmentative and alternative communication (AAC), adapted computer access, devices to assist listening and seeing, environmental control and adapted play and recreation. Thus, there is a close connection between AT and AAC. Especially when combined, these possibilities also represent a significant contribution to compensating for communication and disability-related impairments for people with PIMD and CCN. Through their use, they can, for example, take over the function of speech if the spoken language abilities of an interlocutor are not sufficiently present. Due to their digital tools, digital media already have features that may at first sight not consider assistive technologies in the classical sense, but can be used to support their function, such as speech output or speech recognition (Schüller et al., 2021). Especially access to social media has many advantages for people with CCN, e.g., building and maintaining social relationships, reducing loneliness or opportunities for self-expression (Bosse et al., 2022). AAC media and tools tend to be used as assistive devices from a medical perspective but can also be understood as significant media for communication and information from a media education perspective (Krstoski, 2016). Thus, it can already be stated that the use of tablets has facilitated communication opportunities that did not previously exist in this form. In this manner, these digital technologies are already making a valuable contribution to the inclusion and participation of people with PIMD and CCN. In addition, technological advancements enable participation in social media. Video calling, for example, or camera footage of personal experiences can be seen as a means of articulation. In the context of AAC support, experiences with video-assisted therapy have existed for over 10 years (Hall et al., 2019). So-called tele-AAC as a form of video-assisted therapy provides insights into individual possibilities of digital communication and participation in digital media. In particular, the “on-site facilitator” (Hall et al., 2019) required for tele-AAC can be seen as a possibility for personal participation support. Technical support is provided, such as ensuring the proper positioning of the camera, the (digital) device and the communication aid, while the supporting person can facilitate participation in specific situations or contexts (e.g., by individually responding to situational needs and requirements).
2.2. Barriers to the use of digital media
In addition, the increasing complexity of web applications also creates new barriers for users. For example, the almost infinite amount of information on the World Wide Web represents an easy and low-threshold way of accessing information, but at the same time, it requires individuals to process and utilize this wealth of information cognitively. Phenomena such as 'cognitive overload' or 'getting lost in hyperspace' (Bernasconi, 2007) describe possible difficulties that may arise. Moreover, technical requirements, such as the control of technical devices or reliable internet connections, are possible barriers contrary to the potential of the internet and the possibilities of modern technologies.
Berger et al. (2010) have classified the barriers that affect internet usage in multiple dimensions as follows: application-related barriers (resulting from the design of the application or the technology and/or coding which is used), disability-related barriers (arising from the negative interaction between user limitations and application requirements e.g., missing reading function for people with limited reading ability) and individual barriers (i.e., other aspects such as lack of technical equipment or prior knowledge and limited experience with web 2.0 applications).
More specifically related to the needs of people with ID, Lussier-Desrochers et al. (2017) identify five challenges: [1] access to digital devices, [2] sensorimotor, [3] cognitive and [4] technical requirements and [5] the comprehension of codes and conventions. These five dimensions interact with the person and the conditions of the environment and illustrate the synergy between individual resources and support from the environment.
Since people with ID and especially with PIMD are dependent on (professional) support, attention should also be directed toward the digital competencies of supporting professionals, as well as the institutional structures and services. For example, Hoppestad (2013) was able to show that barriers to participation resulted from the fact that the people providing support did not have sufficient media skills. And Ramsten et al. (2017) demonstrated in their study a “lack of organizational support and comprehensive strategies for the use of Information and Communication Technologies (ICT) in municipal social care for people with intellectual disability.”
In this context, Sachdeva et al. (2015) extend the above-mentioned term to the “digital disability divide,” which refers to the additional exclusion of individuals with disabilities from the potentials of modern media, due to their often marginalized position in society, lack of economic or educational resources and competencies.
However, it is important to emphasize that while the mentioned studies provide valuable insights, they seldom consider the specific needs of people with PIMD and CCN. Consequently, there is a fundamental lack of knowledge about the possibilities of digital participation for this group of people, and there are only a few studies that put this group of people into perspective at all. Notably, Caton et al. (2022) conducted a study that examined the digital participation of people with profound disabilities during the COVID-19 pandemic in the UK. They conclude that “during the COVID-19 pandemic, there has been a worldwide increase in the use of digital technology. (…) However, the experiences of digital participation or nonparticipation for people with profound and multiple learning disabilities (PMLD) is less understood” (Caton et al., 2022). In this study, Caton et al. (2022) explicitly addressed the internet use of people with PIMD and conclude by identifying potential barriers: “The challenging technical requirements of getting online (Lussier-Desrochers et al., 2017) and the accessibility of websites (Williams and Hanson-Baldauf, 2010; Shpigelman and Gill, 2014) are particular barriers for people with complex needs.”
The specific ways and possibilities of communication for people with PIMD increase the problem in two directions: first, adequate ways of communication often have to be explored, and second, they have to be adapted and adjusted to digital contexts. Hoppestad (2007) notes that negative attitudes toward the use of digital media can also significantly limit available opportunities. Copley and Ziviani (2004) also conclude that major barriers include lack of appropriate staff training, negative staff attitudes or difficulties procuring and managing equipment. Furthermore, people with PIMD typically also require personalized access to educational topics that correspond to their learning capabilities. Because they “often have specific sensory and other challenges they need multisensory approaches to communication. The importance of touch for communication (Elliott-Graves, 2021) can suggest that digital connections may not be ideal for people with profound and multiple learning disabilities” (Caton et al., 2022). It is crucial to remain attentive to these exclusionary tendencies and respond with constructive developments and accessible solutions. As Weed et al. (2011) say, “for many individuals with disabilities, however, technology may not be the only solution. Rather, the combination of aided (e.g., mechanical, electronic, and computerized devices) and unaided (i.e., using the body or a body part alone) approaches with high- and low-technology strategies, is essential to provide maximum accommodation.”