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Assistive Technology The Official Journal of RESNA

ISSN: 1040-0435 (Print) 1949-3614 (Online) Journal homepage: https://www.tandfonline.com/loi/uaty20

Gaze-controlled communication technology for children with severe multiple disabilities: Parents and professionals’ perception of gains, obstacles, and prerequisites

Eva Holmqvist, Gunilla Thunberg & Marie Peny Dahlstrand

To cite this article: Eva Holmqvist, Gunilla Thunberg & Marie Peny Dahlstrand (2018) Gaze- controlled communication technology for children with severe multiple disabilities: Parents and professionals’ perception of gains, obstacles, and prerequisites, Assistive Technology, 30:4, 201-208, DOI: 10.1080/10400435.2017.1307882

To link to this article: https://doi.org/10.1080/10400435.2017.1307882

Published online: 04 May 2017.

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Gaze-controlled communication technology for children with severe multiple disabilities: Parents and professionals’ perception of gains, obstacles, and prerequisites Eva Holmqvist, MSc a,b, Gunilla Thunberg, PhD b, and Marie Peny Dahlstrand, PhD a,c

aDepartment of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Göteborg, Sweden; bDart Centre for AAC and AT, Sahlgrenska University Hospital, Gothenburg, Sweden; cRegional Habilitation Centre, Sahlgrenska University Hospital, Gothenburg, Sweden

ABSTRACT The aim of this study was to explore parents’ and professionals’ thoughts of how a gaze-controlled computer can be beneficial to children with severe multiple disabilities. All systems were provided primarily for symbol- based communication, but were also used for other purposes such as play, leisure and school activities. A further aim was to investigate factors affecting usability, specifically for communication.

The study used a qualitative approach, involving content analysis of semistructured interviews with the children’s key persons (N = 11). The analysis yielded three categories and twelve subcategories. There were gains for the children in terms of empowerment, social interaction, learning opportunities and efficient computer use. Inaccessibility, liability issues and technical failure were seen as obstacles, while the prerequisites included time, collaboration, stimulating content, know-how and opportunities. To sum up, this study suggests that gaze-controlled technology can provide children who have multiple disabil- ities involving severe motor dysfunction and communicative and cognitive problems with new opportu- nities to communicate, interact and perform activities independently, as long as conditions are right.

ARTICLE HISTORY Accepted 13 March 2017

KEYWORDS augmentative and alternative communication; communication; computer access; pediatrics; usability

Introduction

Children with severe multiple disabilities are a heterogeneous group. Their problems may entail both motor and cognitive dysfunction and can also be combined with difficulties such as visual and hearing problems. Communication is often severely affected (Lancioni et al., 2016; Olsson, 2006; Socialstyrelsen, 2011). Regardless of their differing symptoms and underlying causes and diagnoses, these children typically have difficulties within all areas of activities and depend on a personal assis- tant or parent to assist them in order for them to play, communicate, and perform any other daily activities (Hewitt-Taylor, 2008; Lancioni et al., 2016; Olsson, 2006). Thus, to support participation and communication with others, there is a need for long-term support (Cress, 2002; De Bortoli, ArthurKelly, Mathisen, & Balandin, 2014). For this group of children, augmentative and alternative commu- nication (AAC) intervention is crucial (De Bortoli et al., 2014). AAC comprises methods, tools, and interventions that enable and optimize communication for persons having problems in using and/or understanding oral speech (Beukelman & Mirenda, 2005). In regard to children with severe motor problems, one common AAC method is eye pointing, meaning that the communication partner follows the child’s direction of eye gaze in order to understand his or her intentions (Clarke & Price, 2012; Hetzroni & Rubin, 2006; von Tetzchner et al., 2004). Assistive technology (AT)

may be used to compensate for a motor dysfunction, such that individuals can carry out certain activities independently; for example, listening to music, access the Internet, or environ- mental control (Lancioni et al., 2016; Lidström & Zachrisson, 2005). AT can also constitute a part of a comprehensive AAC- system—most often including both high- and low-technolo- gical solutions and partner strategies. AT most often includes the use of an individually tailored software interface with “dynamic displays”—a vocabulary organized on different pages that are linked to each other and provide access to spoken language (synthesized or digitized) represented by pictures, symbols, or text (Beukelman & Mirenda, 2005). Alternative access methods, such as scanning, head mouse, and joystick constitute important AT for persons with motor dysfunction, as they support access to information and com- munication technology (ICT; Lancioni et al., 2016; Lidström & Zachrisson, 2005). In some cases, eye movement is the only body movement the person can control voluntarily, and gaze- controlled technology may therefore be the only option of access and independent action (Lidström & Zachrisson, 2005). Gaze control includes a camera to record the movements of the eyes and a computer to analyze the gaze data; calibration is performed by having the user look at a set of on-screen targets. Gaze replaces the mouse and keyboard as the input method, which means that a target is selected when the user fixates on it a certain period of time. There are three cate- gories of eye-gaze systems available: all-in-one (providing all

CONTACT Eva Holmqvist, MSc [email protected] Dart Centre for AAC and AT, Sahlgrenska University Hospital, Kruthusgatan 17, 411 04 Göteborg, Sweden. Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/UATY.

ASSISTIVE TECHNOLOGY 2018, VOL. 30, NO. 4, 201–208 http://dx.doi.org/10.1080/10400435.2017.1307882

© 2018 RESNA

components in a single device), dedicated modular (devices that support a range of input methods), and add-on systems (devices used with any desktop or laptop computer; Majaranta & Donegan, 2012; Witzner Hansen & Majaranta, 2012).

Gaze-controlled technology can provide children with severe multiple disabilities a way to communicate and per- form activities such as playing and listening to music (Lariviere, 2014). Children may learn to use this technology if given time and specific training, even if they initially have problems understanding cause and effect (Fager, Bardach, Russell, & Higginbotham, 2012). A computer with a speech synthesizer can also be used to teach the concept of using pictures and symbols for communication (Schlosser & Lee, 2003; Schlosser & Sigafoos, 2006).

One study available indicates that long-term interven- tions have a positive effect: children with severe disabilities became both faster and more accurate in their gaze-control performance, for up to 19 months after starting to use it in daily activities (Borgestig, Falkmer, & Hemmingsson, 2013). In a recently published study of children with cerebral palsy using a gaze-controlled computer, it has been found that a range of between three and 25 symbols on each page and a total of between 60 and 800 symbols was used to compen- sate for their different individual skills (Borgestig, 2016). Clinical experiences indicate that gaze control requires less motor control and energy than other computer access methods, and that children with cognitive problems may learn to use the technology, also including those who do not understand other access methods such as scanning or moving a head mouse cursor (Donegan, Cotmore, et al., 2009; Holmqvist & Buchholz, 2012).

Assessing the appropriateness of gaze control in children with severe disabilities, introducing it to them and preparing appro- priate vocabulary and other content are time-consuming tasks that require specific competence. However, clinical experience shows that gaze-controlled computers can give these children a way to interact more easily with people around them. In the long run, this may have a positive effect on the child’s communicative progress (Donegan, Cotmore, et al., 2009; Holmqvist & Buchholz, 2012), but so far, there is little research to prove this. We need to know more about how, and for what purposes, children use their computers, as well as about the factors that should be considered during assessment, implementation, and regular use (Donegan, Cotmore, et al., 2009; Donegan, Morris, et al., 2009; Holmqvist & Buchholz, 2012).

The aim of this study was to explore parents’ and profes- sionals’ thoughts of how a gaze-controlled computer can be beneficial to children with severe multiple disabilities and their experience of the factors affecting usability—specifically for communication.

Methods

The study used a qualitative method with semi-structured interviews, took an inductive approach, and applied content analysis. This has been characterized as a flexible method for analyzing qualitative data (Hsieh & Shannon, 2005), and it highlights both differences and similarities in a transcribed text (Graneheim & Lundman, 2004; Krippendorff, 2013).

Participants

The participants were 11 parents and professionals, each of whom had taken on the role of key person in work with a child on gaze control. In this study, they are referred to as “informants.” The children had been in contact with a regio- nal centre for AAC and AT in Sweden and the informants were involved in the assessment process, as part of the net- work surrounding for the child. The informants were selected with a view of ensuring the heterogeneity of the group of children they were referring to. They included three parents, one personal assistant, and seven professionals working at schools or habilitation centres; five of them were males.

The children the informants referred to had been between 3 and 17 years old (M = 12) when assessment and implementation of gaze-controlled computers started. They all had severe motor dysfunction—three of them to a very high degree, even impact- ing their eye movements. Two of the children were able to use joystick as an access method, but it was very time- and energy- consuming for them. For the other nine children, gaze control was the only option of voluntary control. None were able to use oral speech. Four of them communicated with low-tech com- munication boards. The others primarily used body communi- cation, though four had some experience of using simple communication boards accessed by eye pointing. Their cognitive level varied; five of them had a cognitive dysfunction—making them unable to follow verbal instructions. None were able to read; however, three of them used a combination of symbols and letters for documentation and teaching of writing. All of the children had gaze-controlled devices prescribed and provided as symbol-based communication aids. All children’s systems were also used for other purposes such as play, leisure, and school activities. Two children used add-on systems with a lap- top computer and a dynamic communication software. They also had access to an external monitor. The rest of the children used an all-in-one system with gaze control imbedded in the computer, and a software aimed for communication as well as for other activities; for example, control a music player, playing games, and watching video clips. Two of the children had the option to mount the computer on the wheelchair. The content in the software applications differed based on the children’s cogni- tive level and motor dysfunction. Three of the children had access to a larger content for communication; the others had a very limited vocabulary. Further information about the children and technology used is given in Table 1.

Procedures

The 11 informants were contacted by telephone and all of them agreed to participate. An interview guide was designed, with open questions concerning the informants’ experiences and thoughts about important factors facilitating use and problems encountered, both during the assessment phase and during regular use. Additional questions concerned what the child was able to do with the gaze-controlled computer and the importance of the software content. An information letter, including a consent form, was sent out. The time and place for the interview were chosen by each informant during a second telephone conversation once the written consent form

202 E. HOLMQVIST ET AL.

had been signed and returned. Two of the interviews were held at a regional AAC centre, five at the child’s school, and three in the child’s home; one interview had to be performed over the telephone, because the informant and the interviewer (always the first author) were unable to meet in person. The interviews took about 30 to 40 minutes and were recorded using a digital recorder. All interview content was transcribed, with smiles, laughs, and hesitation indicated.

Data analysis

Figure 1 shows the steps of the analytical process. First, all the transcribed interview material was read several times. Then all text related to the interview guide was divided into meaning units in a table to facilitate efficient organization (Krippendorff, 2013); any text not relevant to the aim and the questions was not included in the analysis, but still kept to make it possible to go back to it during the process. In the next step, all meaning units were condensed, a new table was made, and the condensed units were coded. All codes were sorted into categories and subcategories (Graneheim & Lundman, 2004).

Throughout the analytical process, the transcribed interviews were read several times; the process involved back-and-forth movements within the different steps of analysis and between categories to ensure credibility (Figure 1). Principal responsibility for the work was assumed by the first author, but discussions were held during the process with a colleague who has experience with gaze control in the group concerned as well as with the last author, who also has experience with the group of children and of the

analytical method. Further, the last author read all the transcribed material and was involved throughout the analytical process.

Ethics statement

Written informed consent was obtained from all informants. The informants were made aware that they could withdraw from the study at any time without stating a reason. The Regional Ethical Review Board of Gothenburg, Sweden was consulted prior to the study; formal Board approval was deemed unnecessary.

Results

The process of analyzing the text yielded three categories with 12 subcategories (Table 2).

Gains

The informants mentioned gains associated with gaze-con- trolled technology: it increased the children’s ability to perform activities independently, to express themselves, and also to show their competence. Gaze control was used for schoolwork, face- to-face communication, Internet access, and leisure activities.

Empowerment

The informants experienced that the children were able to decide and perform activities independently without always having an adult by their side; for example, playing computer games, reading books, looking at or taking photos, and listening to music. The Internet became accessible to some of them, even though this might be tricky for those who cannot read. Gaze control also gave them a way to pass time other than waiting passively. It enabled them to participate in play activities; for example, a child who cannot play with dolls owing to motor dysfunction was able to control such play by deciding what was going to happen—was the doll supposed to eat, take a bath, etc.? Certainty of being able to sit a test at school was said to increase confidence and cause a feeling of empowerment:

In a test situation when she was under heavy strain because she couldn’t get started immediately, or when things didn’t work out the way she intended, then she noticed that moving and

Figure 1. Diagram of the analytical process.

Table 2. Categories and subcategories.

Category Subcategory

Gains Empowerment, social interaction, learning opportunities, efficient computer use

Obstacles Inaccessibility, liability issues, technical failure Prerequisites Time, collaboration, stimulating content, know-how,

opportunities

Table 1. Profiles of the children.

N

Sex Boys 5 Girls 6

Diagnosis Severe cerebral palsy 4 Rett syndrome 3 Mitochondrial disease 2 Traumatic brain injury 1 Leukodystrophy 1

School Special preschool 1 Special school 8 Mainstream school 2

Technology Tobii PCEye Go 2 Tobii c12 (31,2 x 26,4 x 4,6 cm; 2,9 kg) (12,3 x 10.4 x 1,8 inches; 6,5 lbs)

5

Tobii c15 (37 x 30 x 5,7 cm; 4 kg) (14.6 x 11,8 x 2,2 inches; 8,8 lbs)

3

Tobii i12 (30,7 x 27,4 x 10,5 cm; 2,8 kg) (12,1 x 10,8 x 4,1 inches; 6.2 lbs)

1

Use Only at school 2 Only at home 2 Both home and school 7

Experience of gaze-controlled technology

1 year 5 2–3 years 3 4–6 years 3

ASSISTIVE TECHNOLOGY 203

recalibrating helped. Then she knew that if I do this process, it’ll work. This calmed her at the same time as making things better. (I 4, personal communication, August 13, 2014)1

Social interaction

The informants expressed that access to gaze-controlled compu- ters made social interaction possible in a way not previously achievable. In this context, the importance of having a voice output was stressed. The devices were used to express desires and needs, and to answer “yes” and “no” in an adequate way. They were also used for longer conversations in a more practical and natural way, as the parents did not have to be right next to the child to see what symbol was being pointed at. Some children obtained the ability to share events by showing pictures or film clips. Others gained access to social media and the opportunity to have their own blog. Children already familiar with using low- tech communication boards often found this to be faster and more efficient, but gaze control added a communication channel for those not used to other AAC tools, as well as those whose motor dysfunction was so severe that they had difficulties point- ing at symbols. One informant stressed how important it is for a teenager to be able to have a conversation with your parent in the same way as your peers: “She says, now I want to stop this. Or, you don’t understand a thing. And it feels so great when she says things like that. It’s mother and daughter, it’s just wonderful” (I 9, personal communication, September 4, 2014). The informants took a positive view of the children’s opportunity to protest and complain when something was wrong. Further, the children were able to show those close to them that they knew about and remembered events in the past—something that had been unclear earlier. The informants said that peers and classmates became curious and interested, as the gaze-controlled computers could be used for activities such as listening to music or watching film clips. They gathered around the child to watch what was happening on the screen and to listen. This gave the children the opportunity to become “one of the bunch.” One professional experienced how a child was able to make a joke, and in that way, showed interest in socializing with others:

When she noticed that we were laughing at what she was doing— because this is a person who is a little bit aloof—it became such a nice joint attention and suddenly she really looked at us to share that she was joking. (I 11, personal communication, August 28, 2014)

Some of the children had special pages with specific voca- bulary for chatting and socializing during break time.

Learning opportunities

Access to gaze-controlled computers gave the children learn- ing opportunities according to the informants. Teaching materials became accessible when the professionals adapted and scanned the material into the computer as working docu- ments, so the child was able to access them independently. One professional said, “Well, we try to make it possible to do all schoolwork in the gaze-controlled computer” (I 4, personal communication, August 13, 2014). The children gained the opportunity to express themselves through writing with letters and pictures and symbols. Gaze control also offered a way to

explore cause and effect, to understand the possibility of influencing people around you, and to try new, previously impossible activities:

And then she usually sits with another pupil, using her computer to throw a dice. And then we move the pieces. This is what’s so great about her, that she understands right away. Every time you look, it’s a different number. (I 6, personal communication, October 9, 2014)

Efficient computer use

According to the informants, gaze control made computer use more efficient and also reduced hypertension and involuntary movements: “When she’s using the gaze control, she seems more relaxed. She moves a lot when she’s using the joystick, and then her entire body tenses up all the time. With the gaze control, at least you’re sitting more still” (I 7, personal communication, August 29, 2014).

Gaze control made work on the computer faster and less energy-demanding than previous access method used, accord- ing to the informants.

Obstacles

It emerged that practical problems, technical failure, and the need for parents to pay insurance for the devices could inter- fere with their use.

Inaccessibility

According to the informants, inaccessibility hindered use. The devices were perceived to be heavy and ungainly, and hence they were sometimes left at home or at school even though the child would have benefited from having access to it. Attaching a stand for the computer to the wheelchair was considered helpful in that it meant the helpers did not have to set up and take down the computer as often, which had a positive impact on frequency of use. Another helpful method mentioned was to have a routine where the computer was set up and switched on as soon as the child came home. Some schools applied a rule requiring the computer to be stored in a locked cabinet, which decreased use.

Liability issues

Parents were sometimes required to take out insurance for the computer to cover its use at school. One parent explained that this put an end to the plan for using the computer at school:

And then the insurance issue has been a huge problem. I called the insurance company about this and they said, hang on a minute. So it was a doubtful case. And then people at the school also said, no, we don’t have any insurance. And then you can’t get anywhere. This is a problem that nobody knows how to solve. (I 2, personal communication, August 28, 2014)

Technical failure

Almost all informants experienced technical problems, espe- cially at the beginning, but also later on. This affected the

204 E. HOLMQVIST ET AL.

child’s motivation to use the device. The computers were deemed to work slowly and to take a long time to start. In one professional’s experience, the gaze-controlled computer was fragile and could not be used as planned:

So every time she drove across a threshold it stopped working. It was much too sensitive to use in the way you had shown us, the way we thought would work. In the end we put the computer on the desk and she had to work on it there, and she had to start communicating with her Bliss board again. (I 4, personal communication, August 13, 2014)

If technical problems arose, the computers were often sent away for repair and so were inaccessible for a long period of time. In some cases, informants needed to contact the respon- sible authority several times to speed up the process. In addi- tion, school staff sometimes failed to report immediately that the computer was broken.

Prerequisites

It was found that certain prerequisites had to be met in order to make the use of gaze-controlled computers established and functional. It seemed essential that enough time was allocated to the work involved, that support and training from experts was available when needed, and that there was collaboration among the people closest to the child. Further, fun and moti- vational software content as well as opportunities for use were important in order for the children to understand the useful- ness of the gaze-controlled computer.

Time

There must be time to carry out the work to implement the devices in daily activities. Integrating such a sophisticated device in daily life and making adequate content took time, and owing to a lack thereof, the devices were used less than those involved would have wanted them to be. In collabora- tion teams, where someone had time set aside specifically to design suitable software content and create opportunities of use, this turned out to benefit the whole group. It was claimed to be necessary for adults to set aside time to teach the children, and before doing so, those adults had to have famil- iarized themselves with the content. In addition, the children also needed time on their own to explore the content. Having regularly scheduled time for doing so was positive, especially at the beginning. However, the informants stressed that the time devoted to the children’s development was time well spent. In the words of one professional, “it really was a huge task, but I don’t at all regret doing it, because seeing how much she uses it, it’s worth all that time” (I 6, personal communication, October 9, 2014). Receiving training and support at the right time was also stressed as essential—if the key persons were not able to get started on regular use immediately after receiving training, they soon forgot what they had learned.

Collaboration

There had to be collaboration among the persons closest to the child. Without someone else to use as a sounding board, it

was easy to feel alone, and as a result, the work would feel too hard and be delayed or even stopped. There was a need for opportunities to discuss suitable vocabulary and content, the prioritisation of activities, etc.: “We have sat ourselves down a few times when the content sprawled too much, when the layout was not really the same. And then we had to take these decisions, and we did so together, as a team” (I 5, personal communication, October 16, 2014).

Some informants talked about situations involving team members having different opinions about the importance and usefulness of the computer, but they also stressed that their confidence in the children had grown over time as they had shown new skills.

Stimulating content

The informants said that they would like to be able to receive suitable software content immediately, so as to be able to start using the device as soon as possible. The content had to be motivational—the computer was sup- posed to be enjoyable and play was important, especially during the introductory phase. Pages designed for interac- tive play should be given priority. Further, it was necessary to know what would motivate each child. The content had to be at an adequate level, with the focus on helping the child understand how to control and use the computer: “What is highly motivating to this particular person? What is fun, what is appealing? Because the first step into this is that this must be fun, the feeling has to be, I really want to do this” (I 10, personal communication, October 21, 2014). The content should be easy to use both for the child and for the helpers, and it should be easily expandable as the child becomes more skilled. In the informants’ experience, the vocabulary for communication was often too restricted; for example, it did not allow the child to talk about what had happened during the day. Having many inter-linked pages at several levels might also be proble- matic, but a relevant and well-structured layout made it feasible. The need to regularly update content was often greater for children with severe cognitive problems. For those already familiar with using AAC, this was not as necessary. The need for ready-made applications and tem- plates was stressed, with reference to the time-consuming and difficult nature of content creation.

Know-how

The informants stressed that know-how was important in order to feel secure about the device and capable of handling it, expressing that they had a great deal to learn in order to parti- cipate in and provide training, especially during the initial phase. The gaze-controlled computer was perceived as a technologically sophisticated device, and this created a feeling of uncertainty. The need for support and training from experts was obvious. Without a high level of support, there was a risk that the computer would not be used as planned or, in a worst-case scenario, not used at all. The informants emphasized that the experts involved in the assessment should also assume respon- sibility for this and set aside time for frequent visits: “Getting the

ASSISTIVE TECHNOLOGY 205

help and support you need. And you really do need a lot of that at first, because if you haven’t done this before, it’s really difficult. So you need help” (I 6, personal communication, October 9, 2014).

Some informants said that they were still stuck in the train- ing phase, although several years had passed since the computer had been introduced. Continual, regular, and well-planned sup- port and follow-up by experts was seen as a prerequisite also for later use. Failures on the part of the support structure were seen as negative: having to contact someone who did not have the requisite skills was considered both time-consuming and unne- cessary. There was also a need for recurrent training of new team members or of key persons wanting to improve. In addi- tion, frequent follow-up would create an incentive for regular use of the computer: “Follow-up also makes the people around the child shape up” (I 1, personal communication, September 28, 2014). Having clearly described outcomes and an action plan was also seen as important. Without a joint plan, especially at the beginning, the work became hard. Where the collaboration team had worked with experts on goal setting, this had a positive impact.

Opportunities

One way of teaching children how the content for commu- nication was organized was to use low-tech AAC in parallel. The importance of setting up activities and exploiting situa- tions where the gaze-controlled device could be functional was stressed:

And then all the pupils in the class will either write on their computer and have their texts shown on a big screen, or tell the story using their communication aid. Thus each pupil will be working on his or her task, and then there’s a joint meeting where the pupils tell their stories. (I 10, personal communication, October 21, 2014)

Children with learning difficulties needed continued sup- port from those close to them. Adults had to use aided language modelling when communicating with the child, both during the introduction phase to show how the compu- ter could be used, but for some children, also in the longer run in order to increase interaction. As one parent said, “it’s not a player-piano” (I 5, personal communication, October 16, 2014). It was stressed that continued training was crucial to ensure the device would be helpful in new settings and with people not familiar with the child. The need to make plans for the future when changing schools or for the transition into adult environments was emphasized.

Discussion

The findings of the present study (Table 2) showed that gaze- controlled technology was perceived as a beneficial tool for children with severe motor dysfunctions and no ability to speak orally, even for those with cognitive problems. However, the findings also pointed to the existence of obsta- cles that might hinder usage and identified prerequisites that need to be met. Given that gaze-controlled technology is

rather expensive, knowledge of what makes it functional in daily life is particularly important.

The work to make gaze-controlled computers useful may be both difficult and time-consuming, but the importance and gains for the children often outweigh the effort. The informants described how the children were able to perform activities, learn new skills, show competencies, and take part in social interaction with their families and at school in ways that were not always possible before. They stressed that gaze control enabled the children to try new activities and also to perform activities more independently. Earlier research found that experiencing new ways and abilities leads to increased oppor- tunities to learn and develop (Kielhofner, 2008). The present study also showed that the children were able to choose their activities and gained more control over situations. Law (2002) claimed that the ability to choose and control an activity leads to a feeling of being capable of influencing a situation. The importance of having a voice was also stressed in the present study, and it has been shown by Borgestig (2016) that gaze- controlled devices may give children a language to communi- cate with. Further, the opportunity for social interaction with peers was also mentioned; the informants pointed out that the gaze-controlled computers aroused interest among the chil- dren’s peers and had been used in suitable activities together with other pupils at school. Clarke and Kirton (2003) found that persons with disabilities, especially those using AAC, are at risk of becoming socially isolated from their peers. Earlier research supports our results by showing that, with sufficient support and interventions aimed at social interaction, children with access to AAC are better able to interact with their peers (Therrien, Light, & Pope, 2016). When it comes to the difficult and time-consuming nature of the work to implement gaze control, as identified in the present study, it should be kept in mind that there may be major gains for the children even during the training phase—the opportunity to explore and take part in activities while still learning to use gaze control is beneficial (Borgestig, 2016).

The present study also identified obstacles that need to be overcome: inaccessibility, technical problems, and the need to take out insurance. Some of the children were using quite old gaze-controlled computers, and with modern technology, pro- blems with inaccessibility and technical reliability most prob- ably have decreased, as the devices have become both smaller and lighter as well as more reliable. However, when a gaze- controlled computer is introduced, the need for a stand attached to the wheelchair should be considered.

Both the present study and earlier research indicate the importance of involving key persons in decision-making and goal-setting, and of ensuring that they have the necessary knowledge and skills (Baxter, Enderby, Evans, & Judge, 2012; Granlund, Björck-Åkesson, Wilder, & Ylven, 2008). This might help with some of the obstacles. Generally speak- ing, those closest to the child were of great importance for how and when the computer was used.

Further, there turned out to be certain prerequisites that had to be met in terms of time spent, collaboration, know- how, and stimulating content. Because the work was seen as difficult, a high level of support from experts was deemed essential. Earlier research found this to be very important

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during the implementation phase (van Niekerk & Tönsing, 2015), but the present study also indicates that it is important to receive regular support later on to achieve sustainability. Experts must provide the collaboration team with the knowl- edge they need to ensure that the device matches the child’s needs and preferences. A winning concept seemed to be for one or two persons close to the child to have time set aside to design software content and assume responsibility to ensure regular use. Further, the present study shows the importance of motivational and suitable content to help the children understand the usefulness of the technology. The informants experienced a frequent need to add vocabulary and functions. Individualized content for communication purposes was important. When it comes to the future, the informants— particularly the parents—stressed the importance of func- tional use of the gaze-controlled computers so as to enable the children to influence their life situation when they are older and live by themselves or in special housing. This has been confirmed by Borgestig (2016): professionals need to cooperate with parents about the steps to take as the child grows older in order to support social interaction and independence.

A qualitative approach was chosen for the present study to enable the description of both differences and similarities between participants’ experiences. Given the small size of the study, its validity might be affected by the rather low number of informants. The representation of several profes- sions and both sexes strengthens the heterogeneity of the sample (Graneheim & Lundman, 2004), but all informants had been in contact with the same AAC centre and it would have been preferable to have a more geographically dispersed group. Further, the first author was known to the informants before the interviews, which may have influenced how com- fortable they felt during the interview. However, this did not seem to affect the interviews, as the informants appeared open, and described both gains made with the technology and problems encountered. The first author was working in the field of AAC and was also very familiar with gaze-con- trolled technology, meaning that her preconceptions might have affected both the content of the interviews and their subsequent interpretation during the analytical process. However, efforts were made to reduce this effect by applying the method carefully and often going back to the context of both text and meaning units (Graneheim & Lundman, 2004). In addition, the last author was not familiar with gaze control, meaning that the authors differ in their preconceptions. On the other hand, preconceptions may also have increased the level of trust between the first author and the informants (Trost, 2011). A further point to be noted is that the first author was able to ask follow-up questions based on the informants’ answers; the results would probably have been different if this had not been the case. Finally, one drawback of content analysis is that the results cannot be generalized. Hence, there is no transferability other than to children with severe disabilities using AAC and gaze-controlled technology. As this study’s purpose was to explore the informants’ experi- ence, we did not meet the children. A limitation is therefore a lack of detailed information about the children’s use and their specific content and systems. It would also have been both

interesting and important to explore the views of the children, but due to the quite comprehensive cognitive problems in the majority of the children, this was abandoned in this study.

Conclusion

The present study suggests that, if properly used, gaze-con- trolled technology can provide children who have severe multiple disabilities with new opportunities to communicate, interact, and perform activities independently. The results further indicate that time spent, expert support, collaboration within the closest circle of people around the child, and stimulating content are necessary to make the technology useful and sustainable. The most successful concept seems to involve regular collaboration between experts and profes- sionals on the one hand and persons in the child’s closest environment on the other, with follow-up and support to evaluate outcomes, develop action plans including revisions, and create new pages for the children. In addition, it seems to be beneficial if one or two persons have time set aside to design new content and to ensure that the device is used.

We conclude that children with severe motor dysfunction and communicative and cognitive problems should be offered the opportunity to try using a gaze-controlled device. Even though they may find this difficult at first, it may be the only way for them to have access to AT and achieve independence in some activities and communication.

Note

1. “I” stands for “Informant” throughout text with regard to perso- nal communications.

Acknowledgments

The authors would like to thank the parents and professionals who participated in this study and shared their experiences.

Funding

The study was funded by two Swedish foundations: Stiftelsen Sunnerdahls Handikappfond and Norrbacka-Eugeniastiftelsen.

ORCID

Eva Holmqvist http://orcid.org/0000-0002-5585-0390 Gunilla Thunberg http://orcid.org/0000-0002-9582-7814 Marie Peny Dahlstrand http://orcid.org/0000-0002-6026-1136

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