Support persons’ views on remote communication and social media for people with communicative and cognitive disabilities^*

Abstract

Purpose: The purpose of this study was to explore support persons’ views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation.

Materials and methods: Five focus groups with 21 support persons were conducted. They were recorded and transcribed and data were analyzed qualitatively using focus group analysis methodology.

Results: The participants experience how remote communication can enable users to have increased control in their lives and how remote communication can enable self-determination and participation. Access to remote communication has a dual effect on safety. There are experiences about communicative rights of the users not being met and there is a need for better access to technology, information, and experts. There is also a need for more competence and coordination among staff and support to the users. Challenges emerge in the support persons’ dedication to the users’ right to communicate.

Conclusion: People with communicative and cognitive disabilities need access to remote communication in order to have control over their own lives and to achieve self-determination and participation in society. Support persons carry a large responsibility and can provide valuable insights of users’ communication situation.

Implications for rehabilitation

• Remote communication is important for safety; it is necessary to be able to call for help independently.

• To ensure the communicative rights of people with communicative and cognitive difficulties, professionals must provide assessments of standard technology or assistive technology for remote communication.

• There is a need for more support to and education of staff from the professions. The users themselves are also in need of long-term support.

• Support persons face ethical dilemmas regarding user safety on social media and internet and need guidelines and support.

Keywords:

• Remote communication
• social media
• augmentative and alternative communication
• assistive technology
• internet

Introduction

The speed of digitalization in society is influencing how we communicate in daily life with an increasing involvement of electronic devices and remote communication. Remote communication includes all communication with someone who is not physically in the same place. This includes phone calls, texting, e-mail, chat, social media, and other online services for communication. To be able to participate in society today, one needs to be able to handle remote communication. It is also necessary to be able to use a variety of web services in order to fill in forms to handle health-care appointments, traveling, paying bills and other bank issues, etc. Sweden is a country with high internet access figures. In 2016, 93% of the population in Sweden in the ages of 16–85 had internet access in their home. The most common use of internet was communication by e-mail (84%). Seventy one percent (71%) had internet connection with a mobile phone outside of the home [1]. While digitalization increases participation for many people the effect is the opposite for some people with disability who tend to become more excluded in a digitized world and experience a digital divide [2]. It is a challenge to find ways to counteract this development.

This study aims to describe how to enable remote communication for persons with communicative and cognitive difficulties. To gather new knowledge, the persons themselves must be involved in the research. This was done in a previous study that described the importance of remote communication for self-determination and participation in daily life, but also pointed to significant barriers to the use of remote communication [3]. In this study, we want to expand the knowledge on how to overcome the barriers and therefor support persons were involved to get their views and perspectives.

People with disabilities that affect communication can use augmentative and alternative communication (AAC) that is methods to compensate for restrictions in the ability to produce and comprehend spoken and written communication [4]. According to the United Nations (UN) convention on the Rights of Persons with Disabilities, persons with disabilities shall have freedom of expression and opinion, shall have access to information through all forms of communication of their choice and their participation in society is important [5]. Participation represents the social perspective of functioning and describes a person’s involvement in different life areas as defined in the International Classification of Functioning, Disability and Health (ICF) [6].

Being able to use remote communication may facilitate social contacts, independence and confidence. It can reduce isolation and increase participation and safety [7–15]. In case ordinary devices are inaccessible due to physical or cognitive disabilities, some AAC devices can also be used for remote communication [14,15]. Caron and Light (2017) [16] showed that adolescents with cerebral palsy (CP) who could produce written text independently used remote communication to participate in daily interactions and independent leisure activities. In a previous study, persons who used AAC and had difficulties to read and write described the importance but also barriers to remote communication. Not being able to speak intelligibly in combination with reading- and writing difficulties caused problems in both spoken (like phone- or video-calls) and written (texting, e-mail, messaging, chat) remote communication, leaving no well-functioning alternative for the users [3].

Even though studies on remote communication including social media are increasing, there is still a lack of research on the needs of persons who have communication difficulties and who have cognitive problems affecting their ability to read and write. Research is needed on what aspects of remote communication that are important to develop and how obstacles to remote communication could be overcome [3,17–20]. People with communicative and cognitive disabilities may not have much experience of remote communication and can therefore have difficulties in discussing future needs of development, which was the case in the previous study with the users themselves [3]. They often need support in daily life activities. A support person can be a partner, family member, or friend. It can also be staff. Support persons have unique possibilities to see the persons with disabilities in daily life and have experiences of their communication situation. Their views on the needs of users that can define prerequisites for development that can be hard for persons with communicative and cognitive disabilities to express themselves.

The purpose of this study was to explore the support persons’ views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation.

Materials and methods

Research design

A qualitative design with focus group method was chosen to understand support persons views and thoughts in their role of supporting users of remote communication. Focus groups can be defined as group sessions where people meet to discuss aspects of a certain topic in a focused way lead by an experienced group leader. The method has specific methodological criteria and procedures [21]. The group processes can encourage participants to express ideas and experiences that might be left underdeveloped in an interview, and can help people to explore and clarify their views [22]. Participants are selected on the basis of their experience of the topic and are considered experts in relation to the group leader(s). The formation of focus groups is based on homogeneity regarding experience of the specific topic, but with sufficient variation to allow for contrasting opinions and aspects of the topic.

Ethics

The project was vetted by and received approval from the regional ethical review board (Ref. No. 2015/162–31).

Participants

The target group was support persons to people with communicative and cognitive problems affecting their ability to read and write which at some level interfered with use of remote communication in speech and writing in daily life. The intention was to obtain a varied sample of participants in regard to experiences of persons with different disabilities, ages, and types of communication support. There was also an aim for variation among the participants concerning gender, roles (family or staff), and age.

In total, there were 31 applications from potential participants who all matched the inclusion criteria, 25 females and 6 males. One was excluded due an on-going patient-professional relation of a family member with the first author. Participants who canceled were rescheduled to another session when possible. Nine persons were not able to participate at all. Group size of maximum six participants was chosen to enable for all participants to share in-depth insights and participate in dynamic discussions. Five focus groups were scheduled as recommended by several authors [21–23]. Data collection was continued until no new data responding to the research question emerged, which was established after the fifth focus group [21–23]. There were 2–6 participants in each group with a total of 21 participants (Table 1). The participants were family members or staff, who worked in sheltered housing, schools, or as personal assistants. They were 28–61 years (mean age 50). The participants could have one person in their family whom they supported or they could support several persons at work, for instance at sheltered accommodation with up to 30 users. The users of remote communication to whom the participants were support persons were in the ages of seven to 78. They had congenital or acquired disorders that caused a combination of communicative and cognitive problems. They varied from not managing to use remote communication to using it independently. Means of remote communication used was texting, e-mail, video calls, phone calls, social media, and chat.

Table 1. Amount of focus group participants in each group, their gender and roles.

	n = 21 (%)	Group 1 n = 6	Group 2 n = 6	Group 3 n = 4	Group 4 n = 3	Group 5 n = 2
Gender
Male	4 (19)	0	2	0	1	1
Female	17 (81)	6	4	4	2	1
Role
Family	10 (48)	3	2	3	1	1
Staff	7 (33)	2	3	1	1	0
Family and staff	4 (19)	1	1	0	1	1
Age range		42–57	30–52	28–55	45–61	51–52

Procedure

Participants were recruited through a website of a regional center for AAC and assistive technology (AT) and through seminars and user organizations. Written consent was obtained. Each focus group met for one session that lasted between 67 and 97 min. Groups were composed to have a variation regarding the support persons’ roles, gender, age, and experiences of persons with different disabilities, ages and types of communication support, but the compositions were altered by cancelations and rescheduling. The sessions started with coffee and a snack to get a relaxed atmosphere. A questioning route with key questions were used to gather different views, aspects and perspectives to highlight the research topic and to meet the purpose of the study: (a) what are your views on remote communication for people with communicative and cognitive disabilities in relation to self-determination and participation? (b) when and for what purposes is remote communication important? (c) which factors are important for remote communication to work? [21] (Supplementary Appendix A).

The first author was the moderator of the focus groups and an observer participated and took notes. The moderator strived for an open and tolerant atmosphere to enable and stimulate discussions. The discussions were initiated with a recollection of the aim of the study and the participants were encouraged to engage in discussions. Each topic was introduced with a question and the moderator let the discussion carry on and only interfered if the discussion got off topic. At the end of each session, the focus group discussion was summarized, and the participants had the possibility to comment. The focus groups were recorded on audio tape.

Data analysis

The analysis started during reflection meetings conducted by the moderator and observer after each session. Krueger’s analysis guide for focus groups [21] and the methodology for analysis described by Dahlin Ivanoff and Holmgren [24] provided a frame of reference throughout the analysis. After each session the recordings of the focus groups as well as the reflections were given to the last author for initial analysis and for feedback to the moderator before the next session. All audio files were transcribed verbatim. The first author read the transcripts several times and listened to the auditory information again to ensure that the inevitable loss of information and communication was reduced to a minimum. The last author listened to all auditory information. Throughout this first step raw data was used to understand the meaning of the whole material and identify preliminary themes. In the second step of analysis, raw data from all group discussions was sorted under preliminary themes and under each theme data was sorted in categories. The first and last authors had meetings to verify themes and categories and these meetings with consensus discussions throughout the analysis process. Themes and categories were changed in the second step until it was estimated to do the material justice. In the third step of analysis, all parts of the relevant raw material were sorted into themes and categories. The second author listened to all auditory information, read all transcripts and went through the steps of analysis separately. After this, all three authors had consensus discussions, which resulted in some changes and verifications of themes and categories. The fourth and last step of analysis involved understanding and interpretation of the material and resulted in three themes. Steps three and four were carried out in close cooperation between the first and the last author. Finally, to ensure the intelligibility and credibility of the process and the results, university seminars with experienced colleagues and researchers were held.

Results

The analysis of the focus groups resulted in three themes: “The right to communicate”; “Increased control in life through access to remote communication”; and “Challenges in responsibilities of support persons”. The main themes each consist of three to four subcategories (Table 2).

Table 2. Main themes and subcategories: the participants’ experiences remote communication for persons with communicative and cognitive disabilities.

The right to communicate	Increased control in life through access to remote communication	Challenges in responsibilities of support persons
Access to technology that works	Self-determination in daily life	Risks and possibilities
Need for increased knowledge to provide support	Participation on equal terms	Nagging and motivating
Lifelong support for users	Independence and safety	Frustration and dedication
	To be like everyone else

The right to communicate

The users’ right to communicate is not always met and there are three areas that need taken into account in order to fulfill it. Participants describe a need for better access to technology and information. They wish for better competency concerning remote communication among users’ staff and coordination in professional efforts and interventions. The users need individual training on a long term basis.

Access to technology that works

In order to meet the users’ rights to communicate, they need increased access to technology that works. They need individually assessed and adapted technology.

An important issue that emerges in the discussions is that there is a conflict in situations where users are not entitled to prescribed assistive devices and are still not able to use standard devices and therefore do not have anything that works well. It is hard for the users to find suitable devices on their own. Standard devices, apps, and services for remote communication are not always designed to meet their needs. The participants describe how the users need assistive communication devices which are accessible and easy to use for remote communication, but also how that is not always the case.

“A – So the equipment should be better.

B – Yes, you would think so.

A – Like, more forgiving. And that calibration that needs to be done in order for it to work.

B – Yes, exactly. Yes it is. So that it is specifically set up for each user then.” (Group 5)

Access to technology can be related to the users’ financial situation. Adult users may have a limited budget with difficulties buying technology and services necessary.

“A – Then you belong to the child- and youth rehabilitation unit and I think that one can see a large difference when you move to the adult rehabilitation unit. Our students do receive quite a lot, but I do see many of my old students that are 35-40 now, perhaps …

B – Who have almost nothing.” (Group 4)

Need for increased knowledge to provide support

Participants describe how there is a vast and constantly changing variety of technology for remote communication and participants find it hard to be updated and in getting a grasp of the market. They lack information on what services society can provide to meet the users’ complex needs. The participants discuss the need of a physical location where one can see what’s available and try the technology, such as more expensive apps, before purchase.

Staff and professionals need to have improved competency in remote communication in order to provide necessary support to users. This involves knowledge about remote communication technology and how to support users. Participants describe how interest in remote communication vary widely between staff and how some are afraid to use technology. It is described as being a lottery whether to have staff that are competent in remote communication or not. The participants want remote communication to be a clearly stipulated responsibility in the professional role of staff and it should not be possible to opt out of that. Participants describe how it is the employer’s responsibility to ensure that their staffs have the right competence and that they need a better understanding of remote communication.

“A – When living in sheltered housing, for example, one receives necessary help with cleaning and showering and so on. But I think one must also be able to get everyday help with one's smartphone and iPad.

B – With one's communication with the rest of the world.

A – […] Then the person should be able to get help with that too. You can compare it to needing help with cleaning. It is a basic need.” (Group 1)

The participants describe how it is important to cooperate in assessments, interventions and support around each user, with involvement of the user him- or herself and the entire network. It becomes vulnerable if only a few people have the necessary knowledge. The participants discuss how staffs need sufficient guidance from professionals and prescribers of assistive technology. Experts should not be needed in everyday work, but should be available when necessary. Large staff turnover can affect of remote communication negatively. Participants describe how family members teach staff over and over again.

Participants describe how transitions between different services and different periods in users’ lives are problematic because knowledge about their communication is lost. Participants express that no category of professionals takes on a long-term responsibility for the users’ communication development between different settings and stages of life.

“A – You shouldn’t need to have to wait for an IT expert to appear.

B – Well, as there are other people who know, as everyone keeps saying ’I don’t know for sure, but we do have an IT manager, but, he isn’t here.’

C – But there is a therapist, isn’t there, who is good at muscles. There ought to be an IT therapist. I mean I don’t think it’s odd. I think you have to simply create a completely new working role.” (Group 1)

Lifelong support to users

Users need support and training in respect of their difficulties in understanding, getting on and coping with remote communication. Support needs to be provided continually throughout life. The participants describe how users who are not familiar with remote communication hesitate to use it. They might not understand how it can be useful to them and may feel resistance in trying new technology. The participants argue that people cannot make informed decisions if they never had the opportunity to try remote communication with relevant support.

Users need support in the form of individually designed, structured training based on practical and motivational activities that create understanding and interest in remote communication. It may take a significant period of time before the training gives results, and the support persons involved need to have endurance. As communication technology and user needs are constantly changing, training needs to be a lifelong and ongoing process so that communication development does not cease.

“A – Someone who is responsible and that there are clear goals. […]

B – It might be easier in sheltered housing where he is most of the time because there are assistants, he has three assistants, who are responsible for a goal. […]

A – How clever.

B – Then it is not always possible to accomplish all, but still one holds on to them for several years perhaps sometimes. […] Documenting progress on a scale of independence, working like that. I think that’s really great.” (Group 3)

Increased control in life through access to remote communication

Remote communication can enable increased control in one’s own life. Independent remote communication can affect self-determination and participation in daily life by social interactions. Independent remote communication can result in increased safety and security. It can also enable users to be anonymous in terms of their disability and the user can have control over their own online persona.

Self-determination in daily life

Remote communication enables users to have control and be more independent in daily life. The participants describe how users, by using remote communication, manage to handle their social interactions independently. They are able to choose their social contacts, which also means choosing whom not to have contact with. To be in control of one’s own social network, to be able to decide how, when, if and where to contact someone, is seen as important in the transition to adulthood and onwards into independent living.

“A – She was able to interact with those she wanted to because she could see who contacted her on the display of the phone. She could contact whom she wanted to. […] It became a great possibility to choose, speaking of self-determination, to choose her social network and be able to reject it. […]

B – Also if you want to be in contact with someone special, someone not living close by for instance.” (Group 2)

Use of remote communication enables decision-making in choosing activities and choosing places to be. Participants describe how use of remote communication enables independent traveling and planning of activities within a social network.

Participation on equal terms

Use of remote communication can result in increased participation by enabling social interaction on equal terms as for others. Remote communication can compensate for restricted movement in society and can replace physical meetings. It can also help users in creating and keeping important relationships. Participation on equal terms enables control in life.

The participants describe how assistive technology can be used to manage independent remote communication, achieving the same results as others. Users with limitations in cognitive and social skills benefit from support functions in technology which they can use to manage social interaction on their own terms adapted to their needs. Well-functioning remote communication creates possibilities for participation online on equal terms as for others in society. Remote communication is therefore described as being more important for persons with disabilities than for others.

“A – Now when she communicates with her classmates on a distance, they are more equal in their communication or she is even faster than they are. […] Then they are more equal, if you know what I mean, which she doesn’t experience in shool because there she falls behind all the time. […]

B – Really important aspect, I think.” (Group 1)

Sending pictures and emojis is described as an easy way to achieve participation for the users. Users who cannot manage independent use of social media can feel part of the social community by looking at content shared by others.

Independence and safety

The participants describe how independent remote communication can increase a sense of security among the users in everyday life. The possibility of contacting someone for support at a distance enables users and encourages them to dare more. They may dare to stay at home by themselves, to be outdoors on their own, or to try new activities they feel insecure about. The participants find these aspects to increase the users’ control in life.

Participants themselves describe an increased sense of safety when they can rely on remote communication working reliably for the users. They describe how they feel safe in knowing that a user can manage to contact them to get help or that they can get in touch with the user when they need to.

“A – Like my daughter, we use a glucose meter that she scans in. She comes home on her own, and she takes a photo of it and then she sends me a text message at work. […] I can reply with a ‘thumbs up’ and write ‘OK’ […] Or if her reading is low I might write ‘drink milk’ […] making her feel more at ease. She’ll drink some milk and then she’s good to stay at home alone for a while, and it works perfectly.

B – Small steps.

A – […] I feel it has made her a little more independent.” (Group 3)

To be like everyone else

It is important to master a level of reading and writing skills to be able to use common written remote communication like texting, chat and social media. Being able to handle text enables users to participate in the same communication situations, and in the same way as others. To use assistive technology is described as being seen as equal to independent reading and writing. What matters is that messages are displayed in normal text to the communication partner(s). For example, there is a description of users that can interact with others in online gaming where they can be perceived as anyone else in the group. The disability is not noticeable in remote communication unless the user wants it to be.

The participants describe how it is important to be able to use standard technology in order to appear like everyone. The users can feel different in many ways and it can be important not to stand out more than they already do.

“A – Because my daughter is very sensitive to things that are different, it has worked very well with texting and a smartphone, because you look like everyone else. Her sister is texting and there is a normality in that, which I think that she likes.

B – Exactly, that’s the same way as with my daughter too.” (Group 1)

Functional remote communication can enable users to have control over their persona in social media. They can choose to be anonymous or what personal qualities they want to display; they can decide whether or not to let others know about their disability. Users who can share pictures of their hobbies and interests in social media communicate about them like others do.

Challenges in responsibilities of support persons

There are challenges in the participants’ role as support persons. Participants describe feelings of concern, insecurity, frustration and insufficiency. Perceived risks with remote communication lead to ethical dilemmas. Participants describe feelings of uncertainty about how much they should encourage users and when they are entitled to decline. Participants describe feelings of frustration and insufficiency in the responsibility for the users’ communication.

Risks and possibilities

Participants find themselves in a dilemma when they consider online safety on the part of the users; they want to strengthen the users’ self-determination at the same time as they want to protect them. They describe how the ability for users to create new social contacts themselves can extend their social life. At the same time, the participants do not want to encourage and contribute to remote communication that could become harmful to users.

A concern emerges about use of the internet and social media and the dangers this may entail. Participants describe how it can be difficult for users to understand the consequences of their behavior online. Users may have difficulties imagining and understanding the perspective of the communication partner and knowing what information is appropriate to share on social media which could potentially lead to problems.

The participants try to make sure that users are safe on the internet. There is a concern about not knowing who the users are in contact with. When users have apps with restrictions in chat and video calls where they cannot be contacted by unknown persons, the participants describe how they feel a level of control and security. When using other social media, the participants cannot control whom the users add as friends, which creates a concern that users will put themselves in danger.

The participants acknowledge a risk as they limit users’ remote communication by acting as their arbiter, monitoring them and censoring their communications. The participants discuss how measures to create security for the users can create restrictions and describe it as a balance to find the right level.

“A – ’Can you post this on Facebook for me?’ There’s a risk that we as staff adopt the role of censor, or that we just say ’of course’ and contribute to something which is not in the individual user’s best interests. […] I think it’s a difficult line to tread at times.

B – Yes, I recognise this. You do want to encourage independence, to manage by yourself and see what advantages can be gained. Then you can also see that it doesn’t always work out so well every time.

C – That’s exactly what can happen – there are potential consequences. […]

D – But if you look on the positive side they gain a lot of social communication.” (Group 2)

Nagging and motivating

The participants describe how they feel uncertain about how to act. They try to influence users to become more positive to remote communication on the basis that they think it would be useful to them and that it could increase self-determination and participation.

An ethical dilemma emerges in how their work of encouraging and supporting can be perceived as “nagging”. Here, thoughts arise that they may put pressure on a person to use remote communication, when the individual concerned does not really want to. Participants sometimes find it difficult to determine if the person wants to use remote communication. They describe how they feel uncertain about what amount of encouragement is sufficient to enable them to make an informed decision whether to use remote communication or not.

“A – And then it’s like we add our own, what we think that they want…

B – Yes that’s it. You do not know either.

A – No! He might not want to talk.

B – No.

A – He might not want to communicate. […] When this has come you feel” Wow!”, like this is fantastic and it means participation for so many. But we cannot change our people up here. We cannot force things on them.” (Group 3)

Frustration and dedication

Participants do not have sufficient time to keep up to date on technology developments due to other responsibilities. Feelings of frustration and insufficiency emerge as they see how users’ communication needs are not met because they lack time or adequate knowledge themselves.

The participants express that professionals (in the field of habilitation, rehabilitation, and elsewhere) give advice as consultants, but that responsibility for something to be done and developed, continues to fall back on family members. Adult users are expected to identify their own communication needs and seek advice from service providers by themselves, which does not work. There are descriptions about how relatives become project managers concerning communication interventions, and become the ones who coordinate the extensive network. Participants who are family members themselves describe feelings of frustration when they do not manage to take on the responsibility of the users’ remote communication in a way they think that the users would benefit from. They worry about the future when they can no longer manage to take responsibility for the users’ communication: Who will ensure that the user receives his communicative needs then? They also describe a risk of handing over responsibility to someone else, as they cannot be sure that the user’s needs will be met.

“A – Everything becomes digitalized so it cannot be done without it, so what the heck…

B – […] It is so humiliating to have these questions. Then, it’s like being drained of power over and over again. […] Someone must – excuse my language – goddammit, take responsibility to make sure that things work.

C – No, but I think so to…

B – I feel like crying.” (Group 1)

Discussion

The results of this study show how support persons acknowledge users’ rights for communication and stress for important factors that need to be fulfilled. They see how functioning remote communication can benefit people with communicative and cognitive disabilities. They can have increased control over their own lives, which can lead to increased self-determination and participation. Managing independent remote communication can make a difference regarding the possibility to develop social contacts, meaningful activities and interests, and a meaning in life. Independent remote communication becomes more important in the transition to adulthood which was also found in a previous study [3]. The finding that remote communication can compensate for physical, cognitive, and social limitations has also been described by others. It can be manifested by virtual meetings replacing physical meetings that can help to create and maintain important relationships over distances increasing participation [8,25]. Another way is by using assistive technology that helps users to overcome obstacles and communicate on equal terms [8,14,20,25]. Therefore, the view of the participants that remote communication is more important for persons with disabilities than to others, makes sense.

The results of this study show how also partial use of social media by viewing and posting of pictures can increase participation. This is in line with a study by Caron [20] describing how only watching content on social media has benefits in participation and despite minimal interaction allows connection with the world for persons experiencing online barriers. It is important to be aware that even limited use of social media can be very valuable and involve this aspect in goal setting and interventions. The fact that users build their own online persona and can chose to be anonymous in terms of disability stresses the need for access to standard technology, services and internet. Previous research showed that users preferred to use standard technology or similar products, which is confirmed by this study [14].

Reliable remote communication is an issue of safety for everyone in society and being able to get in touch with family, friends and healthcare is necessary for everyone who spends time on their own. The participants describe the importance of functioning remote communication for safety issues which is in line with the results of a previous study [14]. Buchholz et al. [3] interviewed persons with communicative and cognitive disabilities and results showed that only a few had managed to ask for help by using remote communication. This is alarming in terms of safety. The need for further knowledge concerning how adults could use social media to better interact with healthcare professionals and exchange information with them is stated by Paterson [19].

Persons with communicative and cognitive problems often have low or no income which makes it hard to purchase the necessary technology and services. Even though there is extensive provision of assistive technology for communication in Sweden, the participants in this study described how users’ communicative rights weren’t being met. To achieve fulfillment of communicative rights involving remote communication, there are several prerequisites that need to be obtained. The participants describe shortcomings on several levels: at a societal level, due to regulations regarding access to technology and support, and technology not being accessible. At an organizational level there is a lack of support and cooperation between providing bodies as well as a lack of available information on remote communication. At an individual level there is a lack of compensatory efforts and support for the users.

In order to provide access to remote communication meeting the needs of the users, there must be better access to technology and support. Even though available in theory, it seems to be far from satisfying when it comes to remote communication for this group of people which was also found in a previous study [3]. It is of interest to further investigate how the provision system works regarding remote communication in daily life for the users.

The need of support to the users is described as continuous and lifelong due to changes both in technology and needs of the user. In an intervention study by Grace et al. [26] youths with complex communication needs received training in social media use and results showed that performance and satisfaction among them increased regarding internet use for social contacts. Users as well as persons in their network needed intensive support and technical assistance. This is in line with our participants’ call for increased competency of the network and coordination in order for them to be able to help the users.

The challenges in responsibilities of the support persons are immense. The participants express feelings of frustration and inadequacy when they themselves must take on responsibilities that they think should be shouldered by professionals. Support persons express a lack of trust in support functions in society which they describe as not being sufficient. The participants also express feelings of worry and insecurity when it comes to their role as support persons in remote communication for the users. The participants described a dilemma when they had to balance between wanting to motivate the users and still not pushing them to do something against their will. People with communicative and cognitive difficulties may hesitate to try new and unfamiliar technology for remote communication [3]. This is also described in a study by Raghavendra et al. [27] who found that digital skills in family and friends influenced the users’ online communication.

The findings showing how access to remote communication can increase safety in daily life stand in contrast to the issues of online safety which is an issue for everyone today. Sallafranque and Normand [25] described how persons with intellectual disabilities or autism spectrum disorders had been insulted, mocked or threatened online, and had experienced unwanted sexual solicitation. They also had agreed to meetings putting themselves at risk for assault. Sorbring et al. [28] described how parents of intellectually challenged young people worried that their children were in danger of unwelcome content and interactions on the internet. The dual elements of safety is an interesting paradox which can be connected to the participants’ dilemma in risking obstructing the users’ self-determination when trying to protect them from online risks. Sallafranque and Normand [25] showed that alongside of online risks, the users reported increased self-determination, social contacts, maintained long-distance relationships and received social support. Support persons who worry for users can provide safety and help the users to identify online risks. The drawback is that support persons themselves can become a barrier to internet access, self-determination and participation for the users [18]. Several studies deal with the problem of balancing between safety and self-determination. Seale [29] and Seale and Chadwick [30] describe how the potential of positive risk-taking can be a useful conceptual framework to find the right level of support. A study by Grace et al. [26] involved youths in an intervention program to learn to use internet for connecting with others. They reported concern by parents but showed that participants could learn to use remote communication and to be safe online. Seale and Chadwick [30] showed how persons providing support to adolescents and adults with intellectual and developmental disabilities negotiated and handled risks online. They found that normal life means to be digitally included, involves taking risks and exercising the same human rights as others. They scoped components of a positive risk taking framework in relation to supporting the users. These findings are important and can lead the way to increased knowledge on how support persons can help users handle online risks without interfering with their participation and self-determination. Today there are no guidelines for support persons on remote communication. Support persons need knowledge and support on how to deal with the challenges and ethical dilemmas they encounter.

Strengths and limitations

In our previous study, persons with communicative and cognitive disabilities were interviewed about remote communication [3]. The findings represent the situation of persons with communicative and cognitive disabilities as expressed by themselves. However, due to their disabilities and lack of experience, it was difficult for the participants to reflect on factors that could support communication and enable self-determination and participation. Support persons meet persons with disabilities in daily life and have experience of their remote communication which are important. Their views on the needs of users and factors that can enable self-determination and participation are unique and expands previous knowledge which is a strength of this study.

Focus group methodology was suitable for the aim of the study. In order to achieve dependable results from in-depth discussions, efforts were made to empower the participants and create a safe, relaxed and fruitful environment that facilitated exploration and expression of experiences and ideas. These are prerequisites to create in-depth discussions and for meaning to emerge [21–23]. The efforts were successful in the sense that all focus group discussions were rich and dynamic and resulted in a comprehensive body of material. Legitimacy was ensured during the discussions, in which participants confirmed and opposed each other’s views, and at the end of each session the group leaders summarized the discussion and the participants were invited to confirm, oppose or to add views.

An important aspect in achieving in-depth discussions is homogeneity in combination with a variety of perspectives [21,23]. The groups were created with the aim of achieving homogeneity in the specific topic (all being support persons of users of remote communication). From their common experience, the intention was to obtain a varied sample in regard to experiences of users in different situations, as well as a variation among the participants themselves in regard to roles, age and gender. The reason was to achieve sufficient variation to allow for contrasting opinions and aspects of the topic. This was reached except for gender, which is a limitation. All focus groups were evaluated after each session by the first and the last author to ensure legitimacy and they all were all evaluated to reach the aim of in-depth discussion on the subject.

Focus group analysis is systematic and purpose driven and it is a sequential and continuous process from raw data to interpretation, and it includes the complexity of the group discussions [21]. Dahlin Ivanoff and Hultberg [23] describe that it is an advantage when the moderator and the researcher is the same person due to insight in the project and collected data. This was a strength of this study where analysis could start immediately without having to put effort into getting to know and understand the material first. Analysis should be close to raw data in its context for as long as possible throughout the analytical process [21]. All three authors were involved throughout the process, and strictness to methodology was ensured throughout. In order to achieve transferability, results are presented as expressively as possible in themes, categories with illustrational quotes.

Clinical implications

This study shows support persons views that remote communication is important in giving users control over their own life and how they can choose how to present themselves through remote communication. It is a vital safety aspect to be able use remote communication independently. Users must be able to call for assistance and if necessary call for emergency help when they are on their own—just like anyone else in society would take for granted. Professionals should involve remote communication in AAC interventions just like any other common means of communication.

This study identifies several areas where there is a lack of access to remote communication for persons with communicative and cognitive disabilities. Technology provision is an area in which there are large gaps, even though the study was carried out in a country with state-funded provision of assistive technology for users. This can partly be explained by the lack of coordination, information and knowledge among staff. There is a call for a new type of profession to handle remote communication interventions and support. Today this is the responsibility of mainly speech language pathologists, occupational therapists and special educators. Professionals involved in the area of AAC and remote communication should look into how they could improve their services.

Support persons have a large responsibility and describe how they feel frustration and inadequacy when feeling unable to provide for the users. They are responsible for several ethical issues in remote communication in daily life of the users and they need better support. Professionals who want to provide support for persons with communicative and cognitive disabilities, should also cater for the needs of the support persons, in order to increase the users’ everyday support.

Future research

Recent research in the area of remote communication for people with disabilities often covers specific areas of remote communication, like types of social media or devices. It is important to look deeper into different types of use, but it is crucial to identify the overall picture of communication access. When persons with communicative and cognitive disabilities have restricted access to remote communication but still can use one or a few means, these can compensate for the lacking areas. For persons with no functional means of remote communication, restrictions in participation are extensive. The overall access to remote communication is important to identify and explore further to gather a clearer view of the situation for the users. Several areas in remote communication that are in need of further research were identified in this study.

Provision of support and technology to users and their networks must be designed to match their needs. Future research should focus on specific needs of the users and their networks, described by the target groups themselves.

Methodology for training users to manage independent remote communication in daily life needs to be developed and evaluated.

Technology for remote communication must work well for those who depend on it. In order to design technology, applications and services for remote communication, users, and their networks should be involved to help identify areas in need of further development. Support persons can have valuable ideas regarding specific technology and to give ideas for the development of new functions and services.

Acknowledgements

The authors wish to thank the participants for sharing their experiences and time.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The writing of this article was funded by the Research and Development Boards for Gothenburg & Södra Bohuslän and Västra Götaland, The Memorial Foundation of Petter Silfverskiöld and Sahlgrenska University Hospital foundations.