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Staff as Advocates, Moral Guardians and Enablers – Using ICT for Independence and Participation in Disability Services

Authors:

Camilla Ramsten ,

Mälardalen University, SE
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Helena Blomberg

Mälardalen University, SE
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Abstract

Staff in residential care are key support people for young adults with mild to moderate intellectual disability in everyday life. The aim of this study was to identify how staff members work with young adults with mild to moderate intellectual disability to enable their independence and participation through Information and Communication Technology (ICT). A narrative approach was used to analyse focus group interviews with staff in a residential care setting. Staff members reported a variety of ways to position themselves in relation to the service-user when using ICT, such as advocates, moral guardians and enablers. These positions bring different consequences for the service-users to realize their rights as stated in the Convention on the Rights of Persons with Disabilities. Organisational resources appear continuously in staff narratives as hindering or supporting in the use of ICT for participation purposes of young adults with ID.

How to Cite: Ramsten, C. and Blomberg, H., 2019. Staff as Advocates, Moral Guardians and Enablers – Using ICT for Independence and Participation in Disability Services. Scandinavian Journal of Disability Research, 21(1), pp.271–281. DOI: http://doi.org/10.16993/sjdr.608
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  Published on 06 Nov 2019
 Accepted on 15 Oct 2019            Submitted on 11 Dec 2018

Introduction

Information and communication technology (ICT) is being used increasingly to facilitate social relationships and interactions, and for community and political participation (Boulianne 2015; Sallafranque-St-Louis & Normand 2017; Stald 2008). The right to access ICT is stated in the Convention on the Rights of Persons with Disabilities (CRPD) (art. 9). This means that access to ICT becomes highly relevant to achieve further rights set by the CRPD such as; inclusion in community (art. 19), access to information (art. 21), participation in political life, public life (art 29), cultural life, recreation and leisure (art. 30) (United Nations, 2006).

In contemporary society, mediated interactions (e.g. interactions using a device such as a mobile phone, internet tablet or computer) have increased and now complement face-to-face interactions (Manzoor & Vimarlund 2017; Thomson 1995). However, for young adults with intellectual disability (ID), mediated interactions can be difficult. For example, understanding the interactional signals of the other party can be problematic because of the lack of social leads such as body language (Molin, Sorbring & Löfgren-Mårtenson 2015). In addition, access to ICT can be difficult for people with ID because of cognitive limitations affecting abstract thinking and the amount of text on the screen (Chadwick, Wesson & Fullwood 2013; Harrysson, Svensk & Johansson 2004). On the other hand, ICT offers young adults with ID an arena for taking part in activities and interests that would otherwise be physically or socially unavailable to them. ICT can thus be a tool that facilitates participation in a variety of activities and other areas of life (Näslund & Gardelli 2013; Raghavendra et al. 2013; Ramsten et al. 2018). Being online is part of daily life for communication and participation among young adults in the general population (Xinaris, 2016) who also are the most frequent ICT-users (Findahl & Davidsson, 2015). Therefore, unavailability to digital arenas could reinforce social and societal exclusion. Lack of ICT use can possibly strengthen a sense of deviancy that Arvidsson (2013) notes can be more difficult for a person with a mild to moderate ID than a severe ID due to the awareness of being ‘deviant’.

In Sweden, participation of people with ID is lower in most areas of life when compared with people without disabilities. This inequality is apparent in actions such as deciding where to live, pursuing leisure activities, number of social networks and participation in the labour market (Umb-Carlsson 2008; Umb-Carlsson & Sonnander 2005). Still, full participation and independence for persons with disabilities is stated in national law (Government of Sweden 1993: 387) as well as in CRPD (United Nations, 2006).

Participation can be defined as ‘engagement in a life situation’ and can be operationalised as performance of an activity (WHO 2001). It can be assumed that activities that are voluntary and self-chosen entail some extent of engagement (Batorowizc et al. 2016). Participation restrictions can occur because of an attitudinally restrictive setting, which reduces the independence of young adults with mild to moderate ID. In addition, in the institutional service context, the attitudes of staff in residential care can either act as a social barrier or facilitate participation (WHO 2001) through the use of ICT. Support from staff has been shown to be crucial for ICT use by people with ID. Staff support, in turn, is dependent on organisational support (Chadwick, Wesson & Fullwood 2013; Clifford Simplican et al. 2018; Hegarty & Aspinall 2006; Parsons et al. 2008), which is often lacking in Sweden’s disability service organisations (Ramsten et al. 2017).

It has been suggested that staff members use different strategies to support, mediate and interrupt participation by young adults with ID. For example, in offline situations, staff can facilitate and support conversations to maintain what is socially desirable or interrupt by physically moving the service – user away from an activity that staff regard as socially inappropriate (Bigby & Wiesel 2015). Another study mentioned similar concerns (Clifford Simplican et al. 2018) about online safety, which can lead to resistance by staff regarding the use of ICT by people with ID.

The ambition of this study was to investigate whether staff members’ relational work acts as a support for, or hindrance to, the use of ICT (e.g. computers, internet tablets and mobile phones) as a tool in daily life by young adults with ID. The staff members’ relational work was defined as their interactions and professional relationships over time with the young adults with ID in residential care, which constitute the core support provision for these young people (Hasenfeld 2010).

Theoretical starting points

The study departs from analysing what staff members’ convey when narrating how they act in interactions with young adults with ID. This involves acting in terms of what is socially expected in their support of young adults with ID in this institutional context (Goffman 1967, 1971). Interactions between parties is complex and can theoretically be understood based on four parts: 1) previous experiences, 2) understanding of the situation, 3) understanding others and 4) how one person wants to be perceived by others (Goffman 1967, 1971). These parts need to be considered in order to be able to analyse staff narratives about their relational work.

When using a narrative approach, we depart from a social constructionism perspective (Burr, 2003). That brings an analytical focus on language-use. As soon as people talk, they are doing things such as blaming, justifying, defending, praising, or entertaining – accomplishing social actions and a sense of self (Potter and Wetherell, 1987). The narrative approach involves studying how the staff, in focus groups, construct and express common ways of understanding the relational work based on everyday interactions with the service-users (Potter, 2004). Since staff are key-persons in providing support, their construction of the situation is crucial in daily life for the young adult with ID –therefore focus is on the staff perspective.

Aim

The aim of this study was to investigate how staff members work with young adults with mild to moderate ID to foster their independence and participation through ICT.

The specific research questions were:

  • How do staff members position themselves as support persons in relation to ICT use in their narratives about their relational work?
  • What consequences can follow ICT use?

Methods

This qualitative study was designed using a narrative approach (Bamberg 2004, 2011). The narrative analysis can be understood as an umbrella term comprising several ways of conducting the data collection and analysis (Andrews, Squire & Tamboukou 2008; Coffey & Atkinson 1996; Kohler-Riessman 1993). A common point of discussion in narrative research is whether the analysis focuses on the narrative form (how the story is told and organised) or content (what is conveyed in the telling) (Lieblich et al. 1998), and how to use and combine the narrative form and content (Bamberg 2004; Mishler 1999). Combining the narrative form and content can be understood as how socially and culturally shared stories can provide narrative resources; that is, how individuals can tell and convey their story’s content (Bruner 1991). In this study, a narrative was viewed as something tellable, and it was assumed that the narrator’s telling would follow a familiar storyline in which different characters acted according to what is expected in a given plot and how the events develop in the storyline (Bamberg 2004; Bruner 1991). The analytical focus was therefore on how staff members (as characters) position themselves in the telling and what they convey (Bamberg 2004). The study used the following two analytical levels, which were not organised in a hierarchal order as described by Bamberg (2004, 2011):

  • how the characters in the reported events were positioned in relation to the narrator in order to discern what the story is about;
  • how the narrators positioned themselves in relation to cultural and socially accepted categories to understand their own role as a staff member and to convey their construction of self in the telling situation.

In short, it was expected that the narrative approach and an interactionist perspective would facilitate an analysis to reveal what the staff members convey about their relational work when positioning themselves in the reported events (Bamberg 2004, 2011; Goffman 1967, 1981).

Context

In Sweden, according to the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS) (Government of Sweden 1993: 387; Swedish National Board of Health and Welfare 2009), young adults with mild to moderate ID are entitled to societal support to allow them to participate fully in everyday life. Other persons eligible to support in the LSS are defined as three groups: (1) persons with ID or autism; (2) persons with permanent brain injury caused by injury or disease in adulthood; and (3) children, young people and adults with permanent physical or mental disability not caused by normal ageing. In the residential care centres in this study, staff work with supporting service-users who primarily are eligible to support due to mild or moderate ID and autism.

In Sweden, when the needs of a person with ID cannot be otherwise met, the LSS entitles that person to support in 10 specific areas including supported housing, daily activities and leisure activities. According to the LSS, municipalities are responsible for the provision of support. The LSS therefore allows young adults with mild to moderate ID to live in their own apartment in a residential home with support from staff members, who are available around the clock (Government of Sweden 1993: 387). In one of the participating residential home, an Internet tablet was available as a working tool for staff and was available for the service users.

Sample and setting

The participants were recruited using a consecutive sampling, meaning that everyone who met the criteria for inclusion was invited to participate (Polit & Beck, 2010). Hence, all staff working with young adults with ID in the selected municipality in October of 2015 were invited to a focus group interview. Information about the project was provided by the first author during workplace meetings in municipal residential care settings in which young adults with mild to moderate ID lived. The staff from six residential homes were invited to participate in the study. Staff members from four of these homes agreed to participate. For further information see Table 1.

Table 1

Information about participants.

FGI Gender Age Worked in disability services

#1 Woman 32 14 years
#1 Woman 52 15 years
#1 Woman 48 25 years
#1 Woman 51 27 years
#1 Woman 39 10 years
#2 Woman 43 1 month
#2 Woman 54 20 years
#2 Man 27 8 years
#3 Woman 43 10 years
#3 Woman 34 15 years
#3 Woman 59 11 years
#4 Woman 24 6 years
#4 Woman 26 8 years
#4 Woman 31 13 years
#4 Woman 31 13 years

For practical reasons, four focus groups were formed comprising staff from the same residential home. Also for practical reasons, the time and place for these focus groups were scheduled directly before or after a workplace meeting in a municipal facility.

Participants

All participants worked in a municipal residential care centre in which at least some of the service users were eligible for support because of mild to moderate ID and were considered ‘young adults’ (about 18–30 years old). Fifteen people (14 women and one man) agreed to participate in the focus groups interviews. They had worked in the disability services from one month to 27 years (median 13 years) and were aged between 24 and 59 years (median 39 years).

Data collection

The focus groups comprised 3–5 participants, which were small groups but still an acceptable group size (Holloway & Wheeler 2010) and were conducted in January and February of 2016. The first author moderated all focus groups with a co-worker as an assessor whose tasks were to observe the interactions and to ask supplementary questions towards the end (Krueger 1994). All participants sat around a table to create an environment in which everyone could see each other’s face, which helps to facilitate discussion. A recording device was placed in the middle of the table to voice record the discussions. The length of the focus group discussions ranged from 43 to 72 minutes (median 47.5 minutes). The groups were asked to discuss two overarching themes: first, their own role as a support person in relation to ICT use by young adults with ID, and second, their role as a support person in relation to the organisation and the structure of the day-to-day work. Both availability of the devices and how ICT was, or was not, used were included in the two themes. Parts of the focus group interviews have been presented elsewhere (Ramsten et al. 2019).

Data analysis

The data were analysed in four steps. First, the transcriptions of the focus groups were read several times to identify the characteristics of the staff members’ relational work. Second, in the process of using a narrative approach, quotations were sorted and categorised based on how the staff members positioned themselves in relation to the reported events (Bamberg 2004). The third step comprised selecting five or six quotations from each reported event in which staff members positioned themselves in various ways. The fourth step involved identifying how the staff positioned themselves within culturally and socially accepted categories to convey and understand their own roles as a staff member. The findings are presented together with empirical examples. Distinctive quotes are used to illustrate what the staff conveyed about their relational work and how this related to independence and participation through ICT of young adults with mild to moderate ID.

Ethics

Ethical approval was provided by the regional ethical vetting board in Uppsala (#2015/209). Informed consent to participate in the study was provided by all participants.

Results

When team members described how they perceived the role of ICT, they problematised both how ICT facilitates independence and participation by the young adults, as well as their own concerns about the social and economic consequences of Internet use by these young adults. In their work, they perceived that different dilemmas occurred in relation to ICT use by the young adults with ID.

Staff as advocates of ICT in their relational work

The team members depended on each other to create a common view of how to interact in encounters with young adults with mild to moderate ID. An example is the claim that the use of ICT to support young adults with ID is necessary: ‘it’s clear that we must make use of ICT’. Within the team, when asked to discuss the option of using mediated interaction with the young adults in daily support situations, participants provided the following reflection.

P1. If it can help us, if it’s helpful for us in, when providing support to our users, then it’s clear that we must make use of ICT and, here, I think also about the issue of independence. I mean, I think that if a user is accustomed to using a mobile phone and a computer, then it would certainly be a help, [and] it would be natural in the contact with us, too. Why wouldn’t it be a help? Well, I can only see it as a way to greater independence and a kind of freedom; then it’s obvious—it’s this thing about defining the boundaries.

P2. Ah.

  —(FGI2).

As a team member, the participant thinks about the young adults’ previous experiences of ICT when arguing how mediated interaction could benefit their relational work. If the young adults already interact with others by mobile phone, it would therefore be a natural way of communicating with staff. In another focus group, participants emphasised that ICT can provide good support for staff, although the benefits of ICT are perceived as slightly different.

P1. But it would be a great help for us…

P2. Yes!

P1. …not always having to be face-to-face…

P3. Well…

P1. …or be the nagging staff member. You can just respond with a simple sentence via a text message or send a photo or… that it’s not always a must. But it’s so new. You don’t need to come in and disturb or interfere or anything.

  —(FGI4).

Using mediated interaction as a support is motivated by ‘not always having to be face-to-face’ in encounters with young adults with ID. Simultaneously, staff act to avoid being perceived as nagging, interfering or interrupting the young adults. At the same time, mediated interaction (Thomson 1995) can reduce the asymmetric power in the relational work and protect their personal space: ‘you don’t need to come in and disturb or interfere or anything’.

Another way of conveying the importance of ICT was by justifying how the staff members, as a team, understand the young adults’ situations.

P1. The staff can be a bit of a problem at times for the users, that’s just how it is. It’s very healthy and very good that they think that and then it’s really nice to have it, so that you can send a quick text message to ask how they are and where they are without being intrusive. They can still choose not to respond to my text, they don’t need to.

  —(FGI4).

The quote shows the view that mediated interaction can be a ‘very healthy and very good’ tool for providing private space for the young adults and, at the same time, helping the staff avoid being perceived as intrusive. In this reported event, the staff members position themselves as advocates of ICT and also position themselves as being perceptive of the young adults’ wish for privacy. Sending a text message also provides the young adult with the power to determine independently whether to answer. In this respect, the team members showed that ICT was perceived as successful according to previous experiences of ICT in their relational work.

In contrast to the above example, the following excerpt illustrates what can happen when technical devices are not available.

P1. No, we don’t even have a smartphone, we have one of these [old mobile phone], but at least it has a camera, which is great.

P2. Yes, and a flashlight! We might have been able to introduce it in a different way.

I. if you’d had your own tablet.

P3. I’ve wondered about that—how easy it would be to have a tablet, to show things, if you wanted to make a particular dish, yes but what kind of dish is that…

P2. Exactly.

P3. Now we are beginning to think and improvise and, gosh, what fun it would be to introduce.

P2. I mean, development is inevitable, so it is more to do with how you set limits or don’t set them, but get them to understand how they themselves can limit their…

P3. Yes, but then there’s that with training and courses perhaps…

P2. Exactly.

P3. And then a lot depends on introducing it and that will probably be our job.

  —(FGI3).

Here, the staff members position themselves as critical of the organisation for not providing adequate resources to use ICT as a support tool, for example by saying that ‘we don’t even have a smartphone’. The team members speculate on opportunities to introduce ICT if they had adequate technical devices. When asked specifically about technological devices, they reflected on how they might provide support. They were enthusiastic about the possibilities (‘what fun it would be to introduce’) and argue that technological development is inevitable in the wider society. The staff members positioned themselves as being powerless within the organisation and hinted at the tension between the lack of organisational resources and the opportunity to support young adults as they strive for independence. They indicated that, if the relevant resources were provided, they would introduce ICT to the young adults with ID. When being critical of the organisation for not providing adequate resources in their telling, the staff took the side of the young adults with ID. In this sense, not being provided with resources to introduce and support the use of ICT meant that staff members were unable to develop and facilitate new ways of independence and participation in different life spheres by young adults with ID.

Staff as moral guardians

Staff undertake moral action towards the young adults with ID to protect them from disadvantageous social and economic exposure. In the focus groups, the staff discussed what they perceived as difficulties concerning the young adults’ ICT use. The example below shows what staff members regard as inappropriate online actions on the part of one of the young adults:

P4. …therefore, I don’t know, because he was looking at other ‘fun sites’…. The whole list when I came down…

P1. Mmm.

P3. Oh.

P4. And there were videos and all kinds of things. If there was anything you had to buy, that was revealed later, but I’ve no idea. Because I shut it down [laughs].

P1. Yes.

P4. Because he hadn’t been in there. He didn’t know how it had popped up there!

P3. No, no.

P1. No.

P3. No, it could be expensive for them if they end up in the wrong place. These sales sites and dating sites can also be horrible. If you arrange a date with someone you’ve been chatting with.

P1. They are vulnerable because they are often very incapable. I mean, we can be swindled but they are more vulnerable than us; that’s just how it is.

  —(FGI4).

One team member told how a service user had ‘accidentally’ visited ‘fun sites’ online and did not know how he had ended up there. Using her right to define the situation and illustrating the situation with wording such as ‘fun sites’, ‘videos’, ‘the whole list’ and ‘all kinds of things’, she motivated to interrupt and close all the tabs in this situation. In this reported event, she had positioned herself as a moral guardian in relation to the young adult with ID, whom she positioned as vulnerable and incapable of managing this site. At the same time, she indirectly conveyed her right to interpret what was not appropriate for the young adult with ID and legitimised her actions as a moral guardian.

Two other team members confirmed their actions and positioned themselves as moral guardians by noting that using the Internet, and specifically accessing sales and dating sites in terms ‘could be expensive’ and ‘can also be horrible’. This is further reinforced by illustrating and reproducing the positioning of the young adults with ID using the pronouns ‘we’, ‘them’ and ‘us’. The young adults (‘them’) are positioned as more socially vulnerable online than staff (‘us’). In this regard, staff positioned themselves as having the right to interpret what is morally appropriate. However, their doing so may also limit and condition the online participation of young people with ID, for example by interrupting their access to specific sites.

The following quote shows the team members’ concerns about ‘never being able to control’ online exposure as a problem that the young adults with ID need to be protected against.

P3. No, but to come back to your question, it’s clear that it’s frightening, that being online frightens me a bit at least, about what might happen; a lot can happen on the net. And if you don’t know what they’re doing, we’ll never be able to control it, so that it could be a big problem.

[…]

P3. Yes, partly with all the filth there is online…

P1. Yes!

P3. But also that they can buy things.

P4. Be fooled…

P1. Yes!

P3. But, ordering stuff that comes and is delivered and, yes, you don’t what they are going to get up to online, so it can be both financial and….

P1. Mmm.

P2. Yes.

P3. And then we’d need to limit their opportunities and then we’d be back to square one—that is, protecting them from the world that we want them to be part of. So, it’s a dilemma, it really is.

  —(FGI1).

The continuous lack of control prevents team members from promoting independence for the young adults with ID, which is socially expected of the staff in their relational work (Goffman 1961, 1967). Their concerns about the possible social and economic consequences of internet use is expressed in wording such as ‘all the filth there is online’, ‘buying things’ and ‘ordering things’. Another concern is the dilemma of enabling ICT use for the young adults and at the same time, acting as moral guardians, which runs the risk of limiting the young adults’ opportunities to use ICT in their daily lives. Indirectly, the team members conveyed how the young adults with ID are socially excluded with the phrase ‘protecting them from the world that we want them to be part of’. Being aware of the dilemma, the staff members try to be enablers and thereby create opportunities for participation, albeit in a morally acceptable way.

Staff as enablers: Good examples of participation in practice

In one of the residential homes, staff members were provided with an internet tablet that they could use to support their daily work and that could also be used by the young adults. The following three empirical examples come from one of the teams and their experience of using ICT in their relational work to facilitate the participation of young adults with ID. One of the team members began by reflecting on ways that ICT can provide togetherness.

P1. […] Here, we can show them what to do and can sit together and check and search for things together and, just [help] them feel involved in the search. At the beginning, it wasn’t used all that much… but now it’s used more and more.

P2. Yes, exactly…

P1. With that…

P2. We try to get the users… I mean, if we are planning a trip, for example, and they have questions, then we use the iPad to look and then they can look themselves and Google the answer or look at the website. So, it’s really used to find information or, as you say, if there’s nothing else to do, they use it to play games for example.

P1. I think that they’ve become more independent, because before they always used to ask us, and we found things out [for them].

  —(FGI2).

The participants felt that this togetherness has increased over time and has contributed to the young adults’ independence and participation by using ICT to seek knowledge and information about interesting activities for themselves. By illustrating togetherness as something important, the participants described how the young adults become engaged in decisions about possible future activities. This may lead to a reduction in the asymmetric power in the interaction (Goffman 1967); that is, young adults with ID are regarded as having the ability to comprehend the information and to use it to make them more involved in decision-making. In this sense, they positioned the young adults with ID as both capable and teachable, in contrast to interactions in which the staff acted as moral guardians and positioned them as vulnerable.

The next empirical example illustrates the staff members’ perception of the young adults’ progression in their participation in daily life using ICT.

P2. I have, because we don’t have any account or anything, I shouldn’t say this, but I’ve logged in to my own [account] and downloaded some apps and, to not have to pay anything, I logged out again immediately. But, if you look at the games, there’s a quiz game, writing game, painting apps, card games and that kind of thing, you know, tricks and games. I have, when I’ve found them, I’ve sat with the user and asked, ‘What do you want to do with the Internet tablet?’ So yes, we’ve searched together […] So, if anyone finds anything, the next user comes and says, “Oh, I want to look at that too”. So then they sit together, sit on the couch; you don’t need to sit at the kitchen table.

P1. Mmm.

P2. Mmm lots of advantages.

P1. It’s given them, at least that’s what I experience, a bit more fellowship without us. They can also become a kind of little community as well, which they weren’t before, because it was often us who took the initiative to play cards or some other game. Yes, quite a few are perhaps involved, but now they take greater initiative…

P2. Mmm.

P1. …that they sit in small groups and do things without us, because we try, we should really stay in the background. They are supposed to contact each other and have greater fellowship, and this has really increased [it], so…

  —(FGI2).

As team members, the staff members admitted that they sometimes used their private Internet accounts to access relevant applications on the tablet. In the quote, the first team member indirectly criticises the organisation for not providing the necessary resources and admits to going beyond what the staff members are permitted to do in social care. By doing so, the staff members attempt to encourage participation and togetherness among the young adults with ID. In their view, the event reported above about the private use of accounts is justified by their attempts to involve the young adults: ‘I’ve sat with the user and asked, “What do you want to do with the Internet tablet?”’ This quote positions the team member as an enabler of ICT use. In addition, this position is reinforced when the staff member emphasises that if an ICT activity inspires other young adults with ID, the staff can encourage them to participate in activities together by using the Internet tablet to ‘sit together, sit on the couch’. This allows the staff to reduce their own interactions when the young adults interact more with each other. Before the apps became available to the young adults with ID, staff members always took the initiative for joint activities, e.g. ‘to play cards, or some other game’. Having access to ICT allows the young adults to take more initiatives themselves and thereby create their own togetherness, with staff supporting them in the background. By doing what is not permitted (i.e. using their private Internet accounts), the participants indicated that they successfully facilitated the use of ICT as a participation tool.

Discussion

This study set out to investigate staff members’ way of working with young adults with mild to moderate ID to foster their independence and participation through ICT. Staff members sometimes use mediated interaction in the form of a dialogue using a mobile phone (Thomson 1995). This kind of interaction requires both staff and service-users to have the resources or capability to express and understand each other without facial expressions or gestures (Thomson 1995).

When staff positioned themselves as advocates for ICT in the narratives, they perceived this as facilitating their work and providing independence for the young adults. Using ICT in encounters between staff and the young adults provided a sense of togetherness, both between staff and the young adults and within the young adult group. This togetherness was used to foster independence and participation by using ICT to search for information and knowledge. Moreover, ICT made it possible for the young adults to take greater initiative themselves, for example by interacting together to use ICT to plan future activities, while the staff offer support in the background. This has also been described by Caton & Chapman (2016). In addition, mediated interactions are perceived as creating a personal space for the young adults with ID. Participants noted that providing personal space increased a physical distance, which helped the young adults with ID become more independent.

Participants also described their role as being concerned about the young adult’s social and economic exposure. Acting as socially expected (Goffman 1961, 1963) also involves moral actions, such as protecting young adults with ID from economic and social exposure online, for example by closing tabs deemed inappropriate. To position themselves as moral guardians, the staff members described the young adults with ID as vulnerable. By reproducing the interactions this way, the staff risked imposing a social barrier (Seale & Chadwick 2017; WHO 2001) between the young adults with ID and the outside world, rather than helping them to integrate and participate in it. In this respect, the service provision counteracts the rights stated in the CRPD (United Nations, 2006).

The participants also described their continuous lack of control over the young adults’ online behaviour, which prevented them from fulfilling what is socially expected. This lack of control can contribute to a risk-thinking approach towards ICT among staff (Clifford Simplican et al. 2018; Seale & Chadwick 2017) and illustrates the potential for tension between the organisation and the young adults’ life that staff may need to manage (Ineland, Molin & Sauer 2015).

The staff in the focus groups argued that ICT creates opportunities for participation and for independence. Although, it should be noted that this is within an institutional setting and hence, a conditioned independence and should not be mixed up with a normative independence.

From an organisational perspective, the right to full participation, as stated in the LSS (Government of Sweden 1993: 387), concerns the creation of opportunities for participation rather than the experience of participation (Molin 2004). However, one key finding in our study is the participants’ criticism of their organisation. As in prior studies (Clifford Simplican et al. 2018), the staff members in this study both indirectly and explicitly criticised their organisation for not having enough technical devices, which in turn prevented the staff from enabling the young adults’ full participation. By contrast, participants described another organisation that had provided staff with an Internet tablet and noted that, in their situation, ICT increased both the independence of, and participation by, the young adults with ID. This example confirms that technological devices provided by the organisation can have a positive impact in terms of participation and independence for young adults with ID, as reflected in the other focus groups.

Strengths and limitations

First, it should be recognized that the study focuses on staff perspective and not the young adults with ID perspective. Therefore, this study lacks the voices of the young adults, but was carried out based on the findings from a prior study where interviews with the young adults with ID were conducted (Ramsten et al. 2018b). All focus groups generated open discussions, although some focus groups only had three participants, which may have limited the ability to discern other possible positions in the staff narratives. The use of larger focus groups may have provided other perspectives in their narratives. Another limitation may be that each focus group comprised staff working together at the same residential home. However, this made it possible to understand their specific way of working with young adults with ID to facilitate their independence and participation through ICT. In addition, almost only women participated in the focus group interviews. This can be a limitation but does also reflect the gender distribution among staff in Swedish disability services. Another limitation may be the data collection in only one municipality, which may limit the transferability to other social care contexts. However, the findings are consistent with those of other studies (Clifford Simplican, Shivers, Chen & Leader 2018; Seale & Chadwick 2017), which suggests that our findings may be transferable to other social care contexts. The study was conducted in accordance with quality criteria for qualitative research by practising and showing openness and transparency (Patton 2002). The analysis was conducted and revised for consensus by both authors and was discussed with other researchers during the process.

Conclusion

Staff positioned themselves in their narratives as advocates of ICT use by young people with ID. Simultaneously, they also conveyed their moral concerns about ICT use and especially use of the internet, which makes them act contradictory to the CRPD. Using ICT for mediated interactions enabled the staff to provide support without being intrusive and allowed the young adults to determine independently whether to respond by the same means. ICT use may increase independence and participation by the young adults with ID by allowing them to seek information and knowledge about things that interest them without having to ask the staff to do so. Despite conveying the positive aspects of ICT for young adults, staff members found it difficult to introduce ICT, support its use, and use ICT themselves when providing support to young adults with ID because of the lack of organisational resources. This means that the organisation becomes a hindrance to realizing the rights stipulated in the CRPD and hence, creates a disabling environment.

Competing Interests

The authors have no competing interests to declare.

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