Tensions between risk, coping and support: young people with intellectual disability in Sweden and Internet-related support

Abstract

Young people with intellectual disability seem to be more vulnerable on the Internet than youth in general. Therefore, it is important to investigate not only their strategies for managing negative online experiences but also how they experience Internet-related support. This study applies a qualitative and interpretative approach drawing on individual and pair interviews with pupils in upper secondary special programme schools in Sweden. A thematic analysis resulted in the following themes: ‘a lesson to be learned’, ‘the important role of siblings’, ‘the dilemma of support’ and ‘negotiation of control’. With regard to negative online experiences, strategies for managing privacy, safety and risky situations are understood as problem-focused coping and efforts to manage external/internal demands. The central role of social networks is emphasised with regard to Internet-related support. It is concluded that online restrictions may discourage open dialogue. A perspective of positive risk-taking, focusing on opportunities rather than risks, is advocated.

Points of interest

• This article investigates the participants’ perspectives in their own words. The key contribution of the paper is finding out how young people with intellectual disability in Sweden handle negative online experiences and how they experience Internet-related support.

• The study highlights a range of themes from lessons learned and sibling relationships to problems of support and control that reflect many social and individual characteristics.

• The participants use different coping strategies to handle negative online experiences. They seem to manage privacy and safety on their own and refuse control in risky situations.

• With regard to Internet-related support, the participants prefer turning to their social network (family and friends) rather than public authorities (teachers in school).

• This type of research is important because it focuses on young people with intellectual disability and their vulnerability online as well as the development opportunities for Internet-related support.

Keywords:

• Intellectual disability
• young people
• Internet
• risk
• coping
• support

Introduction

Today, online and offline activities are increasingly intertwined. Some argue that we are always online, including our identities, and that identity and its online representation is therefore part of our everyday practices of selfhood (Cover 2016). Accordingly, young people do not see social media as a place where they must choose to be themselves or create an alternative identity. Instead, social media seems to be a place to interact with friends while balancing privacy and safety with humour and image (Boyd 2014). Alongside privacy and safety, risks and opportunities seem to be a central dichotomy in the field of young people and the Internet. Focusing on risks, the latest results from EU Kids Online (age 9–16) indicate that negative online experiences increase with age and that parents seem to be the main source of support when something disturbing or upsetting happens on the Internet (Smahel et al. 2020). From a global perspective, children receive support from peers, siblings and other relatives, but parents still play a central role in ensuring children’s safety and development, both online and offline (Global Kids Online 2019).

Intellectual disability – online and offline vulnerability

This study investigates young people with intellectual disability and the relationship between online and offline vulnerability. Early results from EU Kids Online highlight that children who are vulnerable offline are particularly vulnerable online, and for some children psychological difficulties and social challenges may result in the movement of risks from offline to online settings (Livingstone et al. 2011). Hence, a new kind of digital divide might emerge; with regard to differences in online experiences intensified by risks among already-vulnerable adolescents (Odgers 2018). This raises questions about the situation for young people with intellectual disability. Recent research highlights that individuals with developmental disorders (intellectual disability) who are vulnerable offline may face risks online (Lough, Flynn, and Riby 2015). Regarding cybersolicitation, risks might be about greater prevalence of sexual and physical victimization, absence of sexual knowledge, difficulties related to consent and recognizing abusive situations, greater expectation of depression or depressive symptoms, social isolation and seeking contact with strangers online and offline when isolated (Normand and Sallafranque-St-Louis 2016).

Recent research emphasise that young adults with intellectual disability exhibit more excessive mobile phone use associated to unhealthy behaviour than their peers (Jenaro et al. 2018). However, in a Swedish context, young people with intellectual disability use mobile phones and social media less than young people in general. Nevertheless, they are more exposed to insults online (Swedish Media Council 2019). In any case, there is a variation of ability in this group (young people with additional support needs) concerning dealing with risks online (Bannon et al. 2015). In addition, people with intellectual disability are not only vulnerable online, they may also engage in unwanted online behaviour (Chiner, Gómez-Puerta, and Cardona-Moltó 2017). Another aspect is that young people with intellectual disability seem to talk to adults about online experiences less often than average (Swedish Media Council 2019). Altogether, these results draw attention to a complex phenomenon and raise questions about young people with intellectual disability and whether they may be more vulnerable online than other sub-groups.

Defining intellectual disability and negative online experiences

In the shadow of vulnerability, the concepts of intellectual disability and negative online experiences are central. The concept of intellectual disability has different national connotations, for example learning disability in the United Kingdom (Schalock 2011; Greenspan 1999) versus developmental disability in Canada (Schalock 2011). In this study, intellectual disability is referred to in terms of the American Association of Intellectual and Developmental Disabilities (AAIDD). ‘Intellectual disability is characterised by significant limitations both in intellectual functioning and adaptive behaviour as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18′ (Schalock et al. 2010, 1). The term ‘difficult situation’ was used in this study in order to capture a range of different situations on the Internet, from security settings and passwords to sexual harassment, cheating, threats and exploitation. However, a more accurate term in this context is ‘negative online experiences’ (Smahel et al. 2020, 7) referring to perceived emotional impact of online risks (Smahel et al. 2020). Focusing on negative online experiences raises further questions about coping strategies regarding online and offline risks and perceived harm.

Intellectual disability in the Swedish welfare system

This study is conducted in the context of the Swedish welfare system. In Swedish school legislation, having an intellectual disability (utvecklingsstörning) combined with an assessment indicating the inability to reach standardised goals, is considered a requirement for being enrolled in special programme schooling for pupils with intellectual disability (särskola; Molin, Sorbring, and Löfgren-Mårtenson 2017). Special programme schooling in Sweden is often described as inclusive, and inclusion is supposed to be in the best interest of children with and without a disability diagnosis (Nilholm and Alm 2010). Nonetheless, the inclusion discourse is not always consistent with practice (Berthén 2007; Blomberg 2006; Frithiof 2007). Studies focusing on the perspective of people with intellectual disability indicate that some dissociate themselves from the stigmatisation of belonging to special programme schooling and social welfare services (Molin 2004; Szönyi 2005). In light of this, the Internet could be interpreted as an arena offering opportunities but also posing risks and challenges.

Young people with intellectual disability – lived experience and valorisation of everyday life

Altogether, the focal point of this article is young people with intellectual disability, and online risk and support. Early socialisation with mobile communication may lead to intensified risks of control and sexualisation, more individualised and distant modes of socialisation, and greater opportunity and resource gaps between children, particularly affecting the rights of children with limited access and skills (Stoilova, Livingstone, and Mascheroni 2020). A recently conducted literature review focusing on young people with intellectual disability highlights that the research field of young people with intellectual disability and social media is characterised by risk, vulnerability and support. Internet safety programmes and special training for young people with intellectual disability are needed, but there is a lack of knowledge about how young people with intellectual disability experience Internet-related support (Borgström, Daneback, and Molin 2019). One way of approaching this research field is through disability media studies. Here, the disability studies’ lived experiences are complemented with the media studies’ valorisation of everyday life (Ellcessor, Hagood, and Kirkpatrick 2017). This presents an opportunity to study young people with intellectual disability and their negative online experiences and Internet-related support in combination with a valorisation of their everyday life online.

Online risk, coping strategies and support

The current study draws on work within disability studies, media studies and psychology and focuses on online risks and perceived harm, coping strategies, and support and help seeking. In this research field, risk and opportunity seem to be two sides of the same coin, reflected in a study emphasising that adults with intellectual disability positively perceive and use Facebook but at the same time experience access problems that limit equal participation (Shpigelman and Gill 2014). In parallel with the dichotomy of risk and opportunities, online risks are manifested in different ways. These manifestations are often articulated by the adult world. One study highlights that professionals and parents consider the Internet an arena for positive opportunities as well as sexual risks. On closer examination, professionals seemed to be more worried about the risks than parents were, for whom the real risk was loneliness and social isolation (Löfgren-Mårtenson, Sorbring, and Molin 2015). This does not mean that professionals are not concerned about loneliness; both professionals and parents are ready to see beyond difficult situations on the Internet in order to seize opportunities to develop and maintain social relationships (Molin, Sorbring, and Löfgren-Mårtenson 2015). Furthermore, a study focusing on the Internet, virtual friends and loneliness emphasises that students with more severe intellectual disability report stronger feelings of loneliness than students with minor disability, but the severity of intellectual disability made a partial contribution to the experience of social inclusion (Sharabi and Margalit 2011), altogether indicating the complexity of this area of research.

Negative online experiences – coping strategies

This raises questions about young people with intellectual disabilities, the Internet and loneliness and also how they manage negative online experiences. One way of approaching this issue is by the concept of coping. Coping may be defined as ‘constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised taxing or exceeding the resources of the person’ (Lazarus and Folkman 1984, 141). Coping has two overriding functions: problem-focused coping and emotion-focused coping. The first strategy refers to managing and addressing problems within an environment causing distress and the second to regulating the emotional response to the problem (Lazarus and Folkman 1984). Here, this could be how young people with intellectual disability manage and alter negative online experiences and their emotional response to experiences like online bullying, exposure to harmful content (hate messages), getting a virus or spyware and excessive Internet use. Some of these experiences could be both an opportunity and a risk: exchanging sexual messages (sexting), seeing sexual images and communicating online with someone they have not met face to face before (Smahel et al. 2020). Recent research about young people and intellectual disability and coping focuses on the perspectives of families (Schneider et al. 2006) and mothers of adolescents with developmental disabilities (Woodman and Hauser-Cram 2013). The perspective of young people and their coping strategies are represented in research about young adults during their transitions to adulthood (Austin et al. 2018) and young people in mainstream and segregated schooling (Cooney et al. 2006). Nonetheless, there is a lack of knowledge about young people with intellectual disability and their coping strategies on the Internet.

Intellectual disability – online access and support

However, online access is a central issue in this research field. It is therefore important to advocate for device design that facilitates ease of use for individuals with intellectual and developmental disability as well as the persons who assist with their use, usually family members (Palmer et al. 2012). At the same time, technology is becoming more and more accessible, and recent research shows increasing use of electronic devices, such as smartphones and the Internet, by people with intellectual disability (Chiner, Gómez-Puerta, and Cardona-Moltó 2017). In Sweden, adolescents and young adults with intellectual disability have access to the Internet and a large number of Internet-enabled devices (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020). Technologies are often perceived as offering opportunities that can change the life situation for people with intellectual disability, and they may do so but be mediated by others with power (professionals and parents; Seale 2014). Service providers could play an important role in mediating social connection and agency through the use of information and communication technology (ICT; Barlott et al. 2020), but an aggravating factor is that disability service organisations (DSO) and staff are not always aware of how to support ICT use (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020; Ramsten 2018). Dependence on support personnel raises questions of free choice, morality, vulnerability, disempowerment and control (Cumming et al. 2014).

There is an implied need to look further into different aspects of online support. On the one hand, ICT may influence the development of agency among people with intellectual disability and be developed with support from others during ICT activities (Näslund and Gardelli 2013). On the other, it is necessary to provide support to ensure fairness, inclusion and participation, and avoid risks of excessive and inappropriate use (Jenaro et al. 2018). This is in line with a study investigating the protective role of perceived social support from parents, teachers and friends in the association between cyber victimisation and depression among adolescents with intellectual disability and developmental disorders. This study highlights the need for further research to investigate the protective factors associated with reducing the negative effects of cyber victimisation (Wright 2017). Besides parents, teachers and friends, siblings may have an important role in providing support. For adolescents with neurodevelopmental impairment, factors in the microsystem, for example siblings’ support and communication in the family, are of great importance to participation in domestic life and peer relationships (Lygnegård 2018). In disability research, adult siblings of people with intellectual disability are highlighted as an increasingly critical service group that merits more attention (Hodapp et al. 2017). A study about sisterhood and black womanhood in families with people with intellectual and developmental disability highlights that the perspectives of the siblings are missing (Richardson and Stoneman 2019). Thus, the role of siblings of young people with intellectual disability and Internet-related support are unexplored.

Parential mediation and support

Altogether, online support takes different forms and needs to be evaluated. Teenagers (age 12–17) in general are encountering a range of risks on the Internet and parents are attempting a range of mediation strategies. Parents often choose social over technical forms of mediation, but neither active co-use nor software-based strategies (filtering and monitoring) have been found to be effective in reducing risks. Restricting online interactions has some benefits but reduces teenagers’ freedom to interact with peers (Livingstone and Helsper 2008). Parental mediation could also be divided into enabling parental mediation (encouraging to explore/learn things online and/or suggesting ways to use the Internet safely) and restrictive parental mediation (not allow to use web/phone camera and/or download music and/or visit social networking sites). However, there is not necessarily a relationship between these mediations; how much parents do of one type may not affect how much they do of the other, and some parents may do neither (Global Kids Online 2019). Recent research about young people and intellectual disability argues that support for parents as facilitators of their children’s online life should be developed and evaluated (Sorbring, Molin, and Löfgren-Mårtenson 2017). Support could be divided into two sub-categories: technical support and moral and emotional support. There is also a need for improved listening and understanding of the voices of young people with intellectual disability in social work practice (Molin, Sorbring, and Löfgren-Mårtenson 2017).

Negative online experiences and Internet-related support

Indeed, the formulation of risk and Internet use needs to be problematised and re-examined in the context of the lives that people with intellectual and developmental disability want to live (Seale and Chadwick 2017). The intention of this study is to address this theme, starting from the young people themselves and their lived experiences. Thus, the overall aim of this study is to describe and analyse negative online experiences and Internet-related support among young people with intellectual disability. This aim can be divided into two research questions: ‘What characterises young people with intellectual disability and their strategies for managing negative online experiences?’ and ‘How do they experience Internet-related support?’

Method

This study has a qualitative approach and interpretative perspective inspired by Taylor, Bogdan, and DeVault (2016). It is also inspired by ethnography and social work practice research (Austen, Fisher, and Uggerøj 2014). A recent literature review highlights a focus on the perspectives of professionals and parents (Löfgren-Mårtenson 2008; Löfgren-Mårtenson, Sorbring, and Molin 2015; Molin, Sorbring, and Löfgren-Mårtenson 2015; Sorbring, Molin, and Löfgren-Mårtenson 2017). Stressing the importance to involve young people with intellectual disability in future research, both to emphasise their perspectives and to get close to the phenomenon (Borgström, Daneback, and Molin 2019). Qualitative research investigates what a phenomenon looks like from different vantage points (Taylor, Bogdan, and DeVault 2016). Here, this means that the views of young people with intellectual disability are highlighted and seen as just as important as the perspectives of professionals, parents or the author. In that way, previous research is complemented by an insider perspective. To come close to the phenomenon, the interviews took place in a familiar environment, i.e. at school, and the participants were encouraged to bring their mobile phones to the interview. This was done in order to empathise and identify with the participants to better understand how they view the phenomenon (Taylor, Bogdan, and DeVault 2016). The author’s own experience of working in schools with special programmes for pupils with intellectual disability facilitated access to the research field, at the same time as implying a need to constantly be aware of pre-understanding and setting aside personally held perspectives and views of the world that are taken for granted (Taylor, Bogdan, and DeVault 2016).

Participants

This article is part of a study based on individual interviews, pair interviews and focus groups with pupils in upper secondary special programme schools (n = 25). Here, findings from individual interviews and pair interviews (n = 18) are reported. Altogether, 13 young women and five young men aged 16–21 were interviewed in 2017/2018 (Table 1). The participants were informed about the aim and method of the study and the fact that their participation was voluntary. Responsible teachers at the school informed parents of pupils under 18 years of age. At the time of the interview both oral and written information (in accessible language) about the study was provided and informed consent obtained. The interviews were conducted at three different upper secondary special programme schools in the western part of Sweden. Special programmes for pupils with intellectual disability are divided into national and individual ones. Individual programmes are primarily designed for pupils with severe or moderate intellectual disability and national programmes for pupils with mild intellectual disability (Molin, Sorbring, and Löfgren-Mårtenson 2017). Both programmes aim to prepare pupils for employment, further studies, personal development and participation in society (Swedish National Agency for Education 2013). The participants in this study attended national programmes, such as for health and social care providers, forestry and agriculture, vehicle mechanics, handicraft and manufacturing, administration and business.

Procedure

The research process started with two different reference groups. Inspired by social work practice research (Austen, Fisher, and Uggerøj 2014), the ambition of these groups was to encourage collaboration between research and practice. The first group, consisting of six pupils (five young men and one young woman) from an upper secondary special programme school, met three times in 2016. The aim of this group was to serve as a ‘sounding board’ and forum to test potential issues. The second group, consisting of professionals (teacher, special teaching assistant and school counsellor), met twice in 2017/2018. This group was primarily a forum to test methodological issues related to interviews.

In addition, a teacher at an upper secondary special programme school was contacted by email, and the author was invited to present the study at a working meeting for teachers. The head teachers of four upper secondary special programme schools were then contacted, by email and telephone, and the study was presented at working meetings for teachers at these schools. Eventually, three schools participated in the study. In the next step, delegated teachers (key persons) were contacted, by email and telephone, and they in turn informed pupils and parents (of pupils under 18 years of age) about the study. The study was also presented to pupils in their classrooms. Pupils who were interested in participating in the study registered their interest with the teacher, who drew up a list of pupils who wanted to be enrolled in the interviews. Two pilot interviews were carried out in the national and individual programmes. These interviews confirmed that the research and interview questions were primarily designed for young people with mild intellectual disability. The rest of the participants attended national programmes.

The interviews were conducted by the author in quiet rooms located at the upper secondary special programme schools. Four of the participants (young women) wanted to be interviewed in pairs, and in the end 14 individual interviews and two pair interviews were conducted. The interviews averaged 52 min. Each interview had a short break in the middle. There were guidelines to follow, but they never dictated the course of the interview (Taylor, Bogdan, and DeVault 2016). The interview guide was semi-structured with the following themes: self-presentations, relationships on the Internet, opportunities and risks and online and offline identity. There were opportunities to ask supplementary questions. During the interviews, the author took advantage of previous experience of working with young people with intellectual disability, and the interviews were modelled on a normal conversation rather than a formal question-and-answer exchange (Taylor, Bogdan, and DeVault 2016). This methodology implied the need for affirmation and made sure that the participants understood, sometimes repeating and specifying questions. Field notes were taken after every interview and notes were also taken when transcribing the interviews in order to identify unstated assumptions and unarticulated meanings (Taylor, Bogdan, and DeVault 2016).

Analysis

The analytic process started with memo writing (Layder 1998) during the data collection and transcription of the material. This was followed by familiarisation with data coverage (Spencer et al. 2014). The software NVivo 12 Pro was used to store and organise the data and construct an initial thematic framework with themes and sub-themes (Spencer et al. 2014). The initial sorting and analysis were based on memos and the participants’ answers on Internet-related support. The following questions in the interview guide were used: ‘What advice have you been offered? By parents? Professionals? Friends?’, ‘What do you do if you end up in a difficult situation on the Internet? Whom do you turn to?’ and ‘Do you have control over social media use yourself and how much can you use the Internet?’ NVivo was used initially, but the data were primarily categorised manually and analysed by Braun and Clarke (2006) with phases of thematic analysis: familiarisation with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes and producing the report. The initially generated codes were: ‘no need for advice’, ‘learning from others or from personal experience’, ‘whose advice and what is the content?’, ‘difficult situations online/offline’, ‘standing on your own feet’, ‘seeking support – from whom?’, ‘deciding for yourself’, ‘different forms of control’, ‘negotiating and refusing control’ and ‘why control and not knowing why’. The analysis primarily resulted in different images of difficult situations interpreted as negative online experiences and potential themes concerning support, advice and control. Further review resulted in the following themes: ‘a lesson to be learned’, ‘the important role of siblings’, ‘the dilemma of support’ and ‘negotiation of control’.

The analysis was inspired by the tradition of meaning interpretation, which goes beyond reformulation of subjects’ experiences and meanings through deeper and critical interpretations of the text (Brinkmann and Kvale 2015; Midjo and Aune 2018). Hence, the results are thematically presented together with emic (Hammersley and Atkinson 2007) interpretations. The analysis related to empirical evidence and theories takes place in the discussion.

The ethics committee for West Sweden approved the project (ref. no. 048-15/ref. no. T111-17) and the study was adapted to comply with the Swedish code of ethics concerning requirements for information, consent, usage of data and confidentiality. In order to maintain confidentiality, no names or identifying information appear in the presentation of the results. Pseudonyms were used and quotations translated from Swedish into English.

Results

The findings in this study are structured according to four themes: ‘a lesson to be learned’, ‘the important role of siblings’, ‘the dilemma of support’ and ‘negotiation of control’. Before presenting these results, the author would like to highlight suggestions from an introductory analysis and give examples of negative online experiences. The initial analysis was based on memos and familiarisation with the data material and indicated an ambivalence between seeking support from a social network of adults (parents and professionals) and coping alone (standing on your own feet). One reason for not turning to adults may be the idea that a negative online experience could be made even worse by talking to an adult and that it is better to solve problems by oneself or together with peers (friends and siblings). Not seeking support from adults could also be interpreted as a manifestation of independence, which sometimes turns into ‘a game of cat and mouse’, in which the aim is to have the mobile phone and the Internet to yourself. The expression ‘a lesson to be learned’ recurs in several interviews, alluding to learning from one’s own mistakes. The specific role of siblings in this context is worth highlighting. Furthermore, the downsides of the Internet are expressed as negative online experiences. The participants were cautious about sharing negative online experiences, though some of them stated that they had been threatened on virtual games, received disrespectful texts and/or pictures or posted texts and/or pictures they regretted. Before discussing the main themes, Olivia, aged 20, describes what happened to her when she was twelve or thirteen years old. This is an illustration of a negative online experience.

I chatted with a guy; he was born in 1998 or something like that, maybe 1998, 1997 or 1999 or something like that … Anyway, we chatted and he asked me if we could be with each other. I answered ‘Yes, sure!’ I didn’t know the guy; I had now idea of who he was; he had hardly any pictures of himself. He told me to add him. I had Skype. Skype was popular, and I added him on Skype and then he went on to persuade me to show my … only my breasts … He didn’t show himself, but I just thought ‘Whatever, maybe his camera isn’t working’. I didn’t have any negative thoughts so we carried on chatting and he asked me to show myself. I didn’t know that he was taking screenshots of my breasts and after that, it was something … trouble started and he began threatening me with the pictures. He told me that if I didn’t show myself again, or do this or that, the pictures would be posted on porn sites and Google and everywhere.

A lesson to be learned

Some participants stated that they did not need any advice; that they could handle the Internet by themselves and did not need any help. Other participants reported experiences of learning from others, that peers had ended up in risky situations and that they had learned from them. Furthermore, others said that they had learned from their own experiences, for example posting pictures that had ended up on Google. The expression ‘a lesson to be learned’ recurred in several interviews. Often it was a combination of learning from others and from their own mistakes and at the same time seeking support in their social network. Diana, aged 18, described a situation in which she turned to her mother for support and at the same time ‘learned a lesson’.

Actually, I remember when I had Facebook; by the way I had Facebook recently. Anyway, I posted a picture where I was wearing shorts and a T-shirt and we had bought a new car or something. I took a picture with the car because I wanted to show other people, and somebody wrote to me on Facebook. He was probably … he looked like he was 46 or something and he wrote ‘You are very attractive! My God! You are beautiful, where do you live? Where did you take this picture?’ and things like that. I immediately told my mother and she said that I had to block him and I blocked that person, this was a lesson for me.

The important role of siblings

There was wide diversity, but above all advice came from parents, siblings, friends and teachers. The advice could be warnings, such as do not share posts you may regret, do not be too personal, do not write when emotional and do not post naked pictures. It could also be encouragement, such as be cautious and aware of what you write. Advice could include both warnings and encouragement in the same sentence. A young woman reported that her sister encouraged her to ignore others and be herself and at the same time be aware of what she posted on social media. Other advice could be about finances. One participant reported that he was seeking support when it came to finances because he was aware that he had problems managing money. Several of the participants turned to their siblings for support, and it was clear that siblings had a specific role in the life of many participants. Isabelle, aged 17, described how she turned to her older sister for support.

She [older sister] has always advised me to be myself and not care about what other people think. You know, I was bullied when I was younger … and I have told my sister … I have also been a bully … I have been both you know. She has always been there for me and supported me, told me ‘Don’t care about people who say that or act like that … and if you have been like that you have changed.’ She always tells me that I can do better, that I should only believe in myself and take my time. Never rush, good things come to those who wait.

The dilemma of support

The participants were asked to reflect on what would happen if they ended up in a ‘difficult situation’ on the Internet. Here, interpreted as negative online experiences. A young man suggested he may primarily solve a situation by himself and secondly turn to friends and parents because ‘you do not know if it will be worse and if they understand the situation’. Two of the participants (young women) stated that they would not turn to their fathers because they did not dare to. One of them reported a negative online experience on Snapchat and stated that she had not turned to her parents because her father would have been furious. She explained that her parents were immigrants and that her father had warned her about adding young men on Snapchat, and in retrospect she felt that he had been right. The participants mostly stated that they might turn to their social network: family (parents, siblings, grandparents, foster home) and friends but also to public authorities: school (teachers), social support (counsellor, assistant) and the police. Some participants reported that they turned to their parents, their mother or father, because they had Internet skills and were good at solving problematic situations on the Internet. Jack (aged 19) stated that he had a good relationship with his parents but that he preferred to turn to his two older brothers for support.

Mostly, if I turn to someone … Actually, I have never turned to my parents. I have never been that sort of a person. Most often it’s my brothers, because I take care of myself. I’m not at home that much. I have a good relationship with my parents, but if I’m with my parents there is nothing to talk about. If I hang out with my brothers, we can talk about everything … I always do that, I usually call them [my brothers] and then we decide where we are going to meet, all three of us, which day and so on. Then we meet. Of course, I tell them if it is something very serious. If it’s something I don’t have to care about, I tell them what happened and they tend to say ‘Never mind, why should you have problems in your life, no need for that; it only takes up your time.’

Negotiation of control

The participants’ experiences of control were varied. One participant (aged 19) stated that he could take care of himself and said that his parents had brought him up in the right way; they had looked upon him as an adult since he was 15. Another participant recounted negotiations about control, how her mother had convinced her to cancel her Facebook account, but she had refused to stop using Instagram and Snapchat. Some participants stated that they refused to be controlled; they described different strategies, for example trying to tire parents out to impose their own will or downloading different social media applications even though their parents were against it. One participant said that she ‘didn’t give a damn about it’. Some of the participants reported that they were aware of why they had rules and understood that the purpose was to protect them from the downsides of the Internet and to prevent excessive Internet use. Others stated that they did not know why they were not allowed to use some social media. One participant said that it was a little unfair that her mother had Snapchat and Instagram but that she was not allowed to have them. Louise, aged 19, described with an ironic laugh how her father controlled her Internet use.

Yes, I have. If I don’t behave at home they take my phone away or my father takes the Internet away from me. Then I have the phone but they turn off the Internet. They don’t delete the apps but they turn off the Internet on the phone. Then I have my smartphone like a normal phone. They do that; they block the Internet and do the same with the computer. Then it is a computer without the Internet and an iPhone without the Internet, very funny!

Discussion

The results show that being young with intellectual disability in a digitalised world is complicated (Boyd 2014). Here, this complexity is described on the basis of negative online experiences and Internet-related support. One way of approaching this phenomenon is through the lens of privacy and safety and risk-taking behaviours. The participants’ negative online experiences consisted of being threatened on virtual games, receiving disrespectful texts and/or pictures or sending texts and/or pictures they regretted. But what characterises young people with intellectual disability and their strategies for managing these experiences? Regarding privacy and safety, the participants reported advice (warnings) from their network: do not share posts you will regret, do not be too personal, do not write when emotional and do not post naked pictures. Nonetheless, some of them ended up in risky situations on the Internet. The expression ‘a lesson to be learned’ recurred in several interviews. A young man reported that he may primarily solve a situation by himself, and two young women stated that they would not turn to their fathers in these situations. Managing and addressing a problem by oneself may be understood as problem-focused coping. With regard to emotion-focused coping (Lazarus and Folkman 1984), emotional responses to problems were not that salient in the interviews. However, choosing not to turn to adults in the network in risky situations implies risks of trying to solve complex problems alone without support from the adult world. Considering risk-taking behaviours, the participants reported that they had learned from others’ as well as their own experiences. In risky situations, some of the participants had experiences of being (feeling) controlled. They had different strategies to resist control, like tiring parents out to impose their own will or downloading apps even if their parents were against it. Some of them did not know why they had rules. Coping is about constantly changing efforts to manage external and/or internal demands (Lazarus and Folkman 1984). Here, this may be about navigating between resisting control (external demands) and managing risky situations on their own (internal demands). In this context, a lack of insight as to why they had online regulations may solely be risk-taking behaviour.

However, in risky situations the participants turned to family, friends and public authorities. But how do they experience Internet-related support from their surroundings? Some reported that they turned to their parents because they had digital skills and where good at solving problems online. This is in line with research on children and young people and the Internet in general and emphasises the central role of parents in providing online support (Smahel et al. 2020; Global Kids Online 2019), which to some extent differs from previous research arguing that young people with intellectual disability talk to adults about online experiences less often than average (Swedish Media Council 2019). The participants described their parents’ different mediation strategies: one father had warned a female participant about adding young men on Snapchat, one mother had convinced a participant to cancel her Facebook account and another had Snapchat and Instagram while the participant was not allowed to have them. Recent research on teenagers in general emphasises that neither active co-use nor software-based strategies have been found to be effective in reducing online risks. Restricting online interactions has some benefits but reduces teenagers’ freedom to interact with peers (Livingstone and Helsper 2008). This is consistent with the results of this study. Online restrictions may be a source of frustration and trigger efforts to get around parents’ mediation strategies instead of promoting an open dialogue. Therefore, I would argue for an enabling parental mediation - supporting to explore/learn things online and/or recommend ways to use the Internet safely (Global Kids Online 2019).

In risky situations, the participants prefer turning to their social network (family and friends) rather than to public authorities like teachers in school. The Swedish welfare system is world-renowned, the inclusion discourse is dominant and safety in using the Internet is part of school curricula. So, why is it that young people with intellectual disability do not turn to their teachers when they end up in risky situations on the Internet? Recent research highlights that the inclusion discourse does not always cohere with practice (Berthén 2007; Blomberg 2006; Frithiof 2007). Not turning to teachers in school may be one way of distancing oneself from the stigmatisation of belonging to a special programme and social welfare services (Molin 2004; Szönyi 2005). Regarding to the Convention on the Rights of Persons with Disabilities (CRPD), State Parties (including Sweden) shall promote access to new information and communications technologies and systems, including the Internet (United Nations 2006). In 2017, The Government of Sweden decided about a national digitalisation strategy of the Swedish school system. The overall aim of this strategy is to be leading in draw upon the opportunities of digitalisation; achieve a high level of digital competence among children and pupils and encourage knowledge development and equivalence (Ministry of Education and Research 2017). When implementing international and national policy in practice (e.g. Internet safety programmes in a school context), it is crucial to emphasize professional approach and how to gain confidence and trust of young people with intellectual disability.

However, some participants cite their siblings: ‘Never rush, good things come to those who wait’ or ‘Never mind, why should you have problems in your life, no need for that; it only takes up your time’. It is obvious that the participants, if they have siblings, look up to them and that the siblings have a salient role in providing Internet-related support. The important role of siblings aligns with recent research about children and the Internet from a global perspective (Global Kids Online 2019) as well as with research about adolescents with neurodevelopmental impairment (Lygnegård 2018) and adults with intellectual disabilities (Hodapp et al. 2017). Nonetheless, the perspectives of siblings with intellectual disability is missing from the research (Richardson and Stoneman 2019), as is the role of siblings in providing Internet-related support.

The Internet could be understood as a field for embracing risks and opportunities. Rather than resisting technology or fearing what may happen if young people use social media, adults should help them develop skills to navigate digital arenas. Collaboratively, adults and young people could create a world on the Internet that we all want to live in (Boyd 2014). Positive support approaches need to be explored (Chadwick 2019). One way of doing this in practice is by embracing the perspective of positive risk-taking (Molin, Sorbring, and Löfgren-Mårtenson 2017; Sorbring, Molin, and Löfgren-Mårtenson 2017). This concept is understood as enabling people with intellectual disability (and others) to have more control over their lives, which may lead to independence and greater well-being but entails risks either in terms of health and safety or potential failure to achieve intended goals (Alaszewski and Alaszewski 2002; Manthorpe et al. 1997; Morgan 2004; Seale 2014). Positive risk-taking may be a useful conceptual framework in the exploration of the relationship between supporters, technologies, people with learning disabilities (intellectual disabilities) and risk (Seale 2014). Potentially, this approach focuses on opportunities rather than risks and assumes young people with intellectual disability have the capacity to develop online skills and strategies in collaboration with adults and professionals.

Limitations and future research

The participants were mediated by key persons, and their participation in the study was mainly based on their own interest and activity on social media. This resulted in a gender imbalance in both the user reference group (five young men and one young woman) and the interviews (five young men and 13 young women), which is a limitation. Furthermore, it was sometimes difficult to maintain the common thread of the interviews, chit-chat was an important element in getting down to the essentials. Additionally, the interviewer repeated, explained and specified the interview questions. Occasionally, the answers given by the participants were contradictory, and several interviews were hard to transcribe because it was difficult to hear what was said. In addition, the interview guide could have been simplified and improved with pictures and creative elements such as drawing or using mobile phones to a greater extent. Another general aspect related to the interviews was the limitation of meeting for just one interview. Making participants feel comfortable requires more opportunities to meet and interact during the data collection. Parts of the results have been checked with a delegated teacher (key person), but the lack of respondent validation and member checking is another limitation. Further, proceeding only from interview data is a limitation. The fact that the data come from a small group with a gender imbalance and that the study is conducted in the specific context of the Swedish welfare system has implications for replicability and generalisability to young people with intellectual disability in general and internationally. Hence, it is suggested that future research should rely on different techniques for data collection: interviews, focus groups and online observations. Above all, to get better insight into young people with intellectual disability and their online activities, and thereby increase the possibility of designing adequate Internet-related support, future research should adopt a more specific ethnographic and/or netnographic approach.

Conclusions

This study provides insight into how young people with intellectual disability in Sweden manage negative online experiences and their experiences of Internet-related support. Unlike previous research, which mainly concerns the perspectives of adults and deal with parents’ and professionals’ ideas about opportunities and difficulties regarding support, this study contributes knowledge about young people with intellectual disability and their views on negative online experiences and Internet-related support. The results highlight different images of negative online experiences and themes concerning support, advice and control. The following themes are articulated: ‘a lesson to be learned’, ‘the important role of siblings’, ‘the dilemma of support’ and ‘negotiation of control’.

Negative online experiences, strategies for managing privacy and safety on one’s own are understood as problem-focused coping. Strategies that refuse control in risky situations are interpreted as efforts to manage external and/or internal demands. In risky situations the participants turned to social networks (family, friends) and public authorities, and the central role of parents to provide online support is emphasised. With regard to parental mediation, this study shows that online restrictions may be a source of frustration and trigger efforts to get around parents’ mediation strategies instead of promoting an open dialogue. Moreover, in risky situations participants prefer turning to their social network rather than public authorities like teachers in school. Not turning to teachers in school may be one way they distance themselves from the stigmatisation of belonging to special programme schooling and social welfare services. This study indicates that siblings have an important role in providing Internet-related support, which aligns with recent research on children and the Internet from a global perspective and disability. It is stated that adults and young people, in collaboration, may create a digital world for all. One way of doing this in practice is by embracing the perspective of positive risk-taking: focusing on opportunities rather than risks.

Finally, in-depth knowledge of young people with intellectual disability and their perspectives on negative online experiences and Internet-related support may have implications on both social work research and practice. In the research field, the perspectives of young people with intellectual disability is an area that merits more attention. When implementing international and national policy in practice (e.g. Internet safety programmes and/or methods for Internet-related support) it is important to consider the perspectives of young people with intellectual disability. For stakeholders (e.g. schools, support services), it is central with professional considerations on risk management, but also obtaining confidence and trust of young people with intellectual disability.

Acknowledgement

The author would like to thank the participants and school staff, head teachers and teachers for their contributions to the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Table 1. List of the participants in the study.

Participants (pseudonyms)	Sex	Age	Length of the interview	Social media	Support (who do you turn to if you end up in a difficult situation on the Internet?)
Diana (pair interview)	Female	18 years	1 h 30 min	Facebook, Instagram, Snapchat	Friends, teachers
Olivia (pair interview)	Female	20 years	1 h 30 min	Instagram, Snapchat, YouTube	First manage things on my own
Jakob	Male	18 years	1 h 21 min	YouTube, computer games	Parents, brothers
Jessica	Female	20 years	53 min	Facebook, Instagram, Snapchat, YouTube	Friends, siblings, parents, teachers
Jack	Male	19 years	57 min	Instagram, YouTube, computer games	First manage things on my own, second to my brothers
Hanna	Female	16 years	1 h 26 min	Facebook, Instagram, Snapchat	Mother, police
Isabelle (pair interview)	Female	17 years	51 min	Facebook, Instagram, Snapchat, YouTube	Mother, sister
Amelia (pair interview)	Female	17 years	51 min	Facebook, Instagram, Snapchat, YouTube	Parents, family, close friends
William	Male	19 years	36 min	Facebook, Snapchat, YouTube, computer games	First manage things on my own, second to my parents and friends
Emma	Female	19 years	35 min	Facebook, YouTube, computer games	Mother, friends
Louise	Female	19 years	1 h 8 min	Facebook, Snapchat	First manage things on my own, second to my parents
Julia	Female	20 years	40 min	Facebook, YouTube, computer games, blog	Parents
Daniella	Female	21 years	21 min	Facebook, Instagram, Snapchat, computer games	Mother
Oscar	Male	17 years	47 min	Instagram, Snapchat, YouTube	Assistant, grandfather, father, teachers, friends
Sophie	Female	18 years	1 h 4 min	Facebook, Instagram, Snapchat, YouTube, computer games, musical.ly, ask.fm	Mother, counsellor
Ellinor	Female	18 years	29 min	Instagram, Snapchat, computer games	Foster mother, teachers
Hugo	Male	16 years	34 min	Facebook	Parents
Jade	Female	17 years	39 min	Snapchat	Parents

Additional information

Funding

This work was supported by the Swedish Research Council for Health, Working Life and Welfare (FORTE) under Grant 2014-0398.