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Developmental Neurorehabilitation

ISSN: 1751-8423 (Print) 1751-8431 (Online) Journal homepage: https://www.tandfonline.com/loi/ipdr20

Eyes on communication: trialling eye-gaze control technology in young children with dyskinetic cerebral palsy

Petra Karlsson, Anna Bech, Helen Stone, Cecily Vale, Suzan Griffin, Elegast Monbaliu & Margaret Wallen

To cite this article: Petra Karlsson, Anna Bech, Helen Stone, Cecily Vale, Suzan Griffin, Elegast Monbaliu & Margaret Wallen (2019) Eyes on communication: trialling eye-gaze control technology in young children with dyskinetic cerebral palsy, Developmental Neurorehabilitation, 22:2, 134-140, DOI: 10.1080/17518423.2018.1519609

To link to this article: https://doi.org/10.1080/17518423.2018.1519609

Published online: 25 Sep 2018.

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Eyes on communication: trialling eye-gaze control technology in young children with dyskinetic cerebral palsy Petra Karlssona, Anna Bechb, Helen Stonec, Cecily Valed, Suzan Griffine,f, Elegast Monbaliug, and Margaret Wallen a,h,i

aCerebral Palsy Alliance, The University of Sydney, Sydney, Australia; bSpeech Pathologist, Cerebral Palsy Alliance, Sydney, Australia; cTeam Leader Northern Beaches Child & Family Health Services, Sydney, Australia; dSpeech and Language Therapist, NHS Oxleas Foundation Trust, London, UK; ePerson with lived experiences of cerebral palsy and eye-gaze control technology, Sydney, Australia; fResearch partner, Cerebral Palsy Alliance, Sydney, Australia; gDepartment Rehabilitation Sciences Campus Brugge, Research group Neuromotor Rehabilitations, KU Leuven, Belgium; hAustralian Catholic University, Sydney, Australia; iHonorary Research Fellow, Cerebral Palsy Alliance, The University of Sydney, Sydney, Australia

ABSTRACT Purpose: This study aims to identify eye-gaze control technology outcomes, parent perception of the technology and support received, and gauge the feasibility of available measures. Methods: Five children with dyskinetic cerebral palsy, mean age 4 years, 4 months (1 year, 0 months); n = 4 males; trialled two eye-gaze control technology systems, each for six weeks. Parents completed pre- and post-questionnaires. Results: Parents found the 6-week home-based trial period to be the right length. Written guidelines and instructions about set-up, calibration, and play and learning activities were perceived as important. Children demonstrated improvements in goal achievement and performance. Parents found question- naires on quality of life, participation, behaviours involved in mastering a skill and communication outcomes challenging to complete resulting in substantial missing data. Conclusion: Eye-gaze control technology warrants further investigation for young children with dyski- netic cerebral palsy in a large international study.

ARTICLE HISTORY Received 28 January 2018 Revised 30 August 2018 Accepted 31 August 2018

KEYWORDS Assistive technology; communication; dyskinetic cerebral palsy; eye-gaze

Introduction

Dyskinetic cerebral palsy is the most complex and often most severe form of cerebral palsy.1 When children with dyskinetic cerebral palsy and significant physical disability are unable to speak, and options for alternate forms of communication are limited, their ability to express wants and needs, interact socially, gain information about the world we live in and benefit from educational contexts are significantly compro- mised. Such children are at risk of severe restriction of parti- cipation in family, school and society.2

Children with motor and communication difficulties have the same right to, and greater need for, the range of technology, learning, play and communication options available to everyone else. These children may need an alternative method to access many mainstream technologies, applications and activities. A single system, like eye-gaze control technology, can provide early access to assistive technology in the form of speech generat- ing devices, specialist computer software and other alternative and augmentative communication methods. Eye-gaze control tech- nology involves a camera mounted to a computer screen which monitors the user’s eyes to allow the user to move the mouse on a computer screen and activate selected targets.3 This access can provide a window to understand children’s cognitive and intellec- tual abilities, communication, interest and personality. Through this opportunity young children may be assisted to reach their full potential, which otherwise may be underestimated.4

A recent systematic review 5 of eye-gaze control technology used by children and adults with significant physical disability concluded that, despite the potential for this technology to make a substantial impact on the lives of people with significant disability, little research is available to guide assessment for optimal config- urations of hardware and software technology, instruction of users and their communication partners. No research has used direct measures to evaluate communication outcomes of eye-gaze con- trol technology for people with significant disability. Very little research has been completed which evaluates the communication, play, work or quality of life outcomes across an eye-gaze control technology user’s different daily environments. The existing research provides weak evidence supporting the positive impact of eye-gaze control technology for children with cerebral palsy, supporting further work to develop research-informed knowledge to inform (1) considerations when assessing and matching eye- gaze control technology with the user and (2) when and how eye- gaze control technology is best introduced for children with severe cerebral palsy, for example, the intensity and duration of imple- mentation, and the nature of follow up. This paper contributes to the limited body of knowledge by addressing eye-gaze control technology use by young children with dyskinetic cerebral palsy.

Aims of the present study

This study’s overall aims are to generate new knowledge about eye-gaze control technology and its potential to promote early

CONTACT Petra Karlsson [email protected] Cerebral Palsy Alliance, The University of Sydney, PO Box 6427, Frenchs Forest, NSW 2086, Australia Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/ipdr.

DEVELOPMENTAL NEUROREHABILITATION 2019, VOL. 22, NO. 2, 134–140 https://doi.org/10.1080/17518423.2018.1519609

© 2018 Taylor & Francis

communication skills in young children with dyskinetic cere- bral palsy with the purpose of informing an international multi-site study. Parents’ evaluations of two eye-gaze control systems on factors such as ease of use, and access to games and early learning apps are reported elsewhere.4 The specific aims of this study are to: (1) identify goal achievement, com- munication and participation outcomes when using eye-gaze control technology for young children with dyskinetic cere- bral palsy; whilst simultaneously; (2) gauging the feasibility of available measures for use in future research; 3) and report parent experiences of their child’s response to eye-gaze con- trol technology, and the education and support they received during the eye-gaze control technology trials.

Methods

Design

This study was designed to trial two eye-gaze control technol- ogy devices. Each device was trialled for 6 weeks with assess- ments completed prior to and after its implementation. The study was developed in collaboration with an eye-gaze control technology user and families of young eye-gaze control tech- nology users. It is part of the research programme of the ‘Eyes on Communication’ research group. This international colla- boration comprises researchers, clinicians and parents whose children use eye-gaze control technology. Ethics approval was obtained from Cerebral Palsy Alliance Human Research Ethics Committee (2015-08-01) and all parents/caregivers gave written informed consent to participate.

Participants

Participants were eligible for inclusion if they: were diagnosed with predominantly dyskinetic cerebral palsy; aged 3–5 years; with a markedly better ability to understand language than to express themselves as reported by their parents; living in New South Wales (NSW) or Australian Capital Territory (ACT) in Australia; with speech function classified at Viking Speech Scale 6 Levels III–IV and Levels IV–V on the Communication Function Classification System (CFCS),7 Gross Motor Function Classification Systems – Expanded and Revised (GMFCS-E&R) 8 and Manual Ability Classification System (MACS).9 Furthermore, participants needed a stable seating position, an ability to successfully maintain and shift their eye fixation which was evaluated using Sensory Eye-FX 10 eye-gaze games, and an emergent yes/no response evaluated using parent report and clinician assessment. Participating parents were required to communicate their own and their child’s needs and goals in English and indicate that they had time to have an active role in the intervention.

Recruitment of participants

Participants were recruited through Cerebral Palsy Alliance, a large disability organisation providing services to people with cerebral palsy in NSW and the ACT. Clinicians were invited to refer children to the investigators to discuss involvement in the study. Recruitment was assisted by emails sent to families

of potentially eligible children on the NSW/ACT Cerebral Palsy Register. Community awareness was generated through campaigns on social media moderated by Cerebral Palsy Alliance.

Procedure

Prior to starting the device trials participants completed two baseline assessments to judge stability of measures and the child’s abilities without intervention. Figure 1 lists the assess- ments completed at each of these two assessment points which were completed 6 weeks apart. Two eye-gaze control technology systems were then trialled, each for 6 weeks, with an intervening 6-week washout period and an assessment at the end of each period. See Figure 1 which lists the assess- ments completed following the trial of the first device, and before and after the trial of the second device. At the instiga- tion of the trial of each device, a researcher (occupational therapist), in consultation with either a local or study speech pathologists set up the eye-gaze control system in the family’s home and supported families and children to calibrate the device; navigate software, games and apps provided; and increase the level of difficulty as required throughout each of the trials. Weekly follow-up visits or phone calls were performed during each 6-week trial as requested by partici- pating families. Parents were encouraged to embed eye-gaze control activities in their daily routine, starting with engaging their child in highly motivating activities in the software programme Look to Learn. 11 In the first week of the trial, session were 5–10 minutes a day, gradually expanding to 30 minutes sessions at least 5 days a week. Parents were guided to introduce activities of increasing complexity in response to mastery of skills.

A diary for parents to record the activities the child was performing each day during the trials was provided along with handouts and resources addressing procedures for seating, set up, activity selection and calibration.

Equipment The two systems trialled were Tobii PCEye Go (Tobii Dynavox) 12

and myGaze® eye tracker (myGaze®).13 Each was mounted to a Surface Pro 3 tablet PC using a bracket and desk mount or clamp mount. Families were assisted to position the eye-gaze control technology system for use at home. Prior to interacting with the technology each system was calibrated for each unique user. The calibration procedure usually took about 15 seconds.

Learning activities Families were introduced to specialised software (Look to Learn and Grid 3 11 to assist children to learn and practice interaction with the eye-gaze control technology systems. Children’s level of learning and eye-gaze control skills was observed and appropriate software selected to target cause and effect, turn taking, exploring and control, choice making and early communication. Written guidelines and instructions were provided to families about set-up, calibration, games and activities. Throughout the 6-weeks trial of each system, the child’s skills were monitored, by weekly follow-ups, and activities modified to meet skill development.

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Measures

The Viking Speech Scale, CFCS, GMFCS E&R and MACS, were used to classify children’s speech and communication, gross motor and manual abilities, respectively. The assess- ments that were used in the study are described in Table 1 and the assessments carried out at each time point are speci- fied in Figure 1. None of the measures were completed blinded to the phase in the study. The child’s receptive lan- guage ability, communication participation, quality of life, behaviours and abilities to focus and persist on mastering a skill were reported by parents using the Preschool Language Scale-4 (PLS-4),14 Focus on the Outcomes of Communication Under Six (FOCUS©),15 Young Children’s Participation and Environment Measure (YC-PEM),16 Cerebral Palsy Quality of Life Questionnaire – Child version 17 and the Dimensions of Mastery Questionnaire (DMQ) – toddlers/preschool version, respectively.18 Parents were also asked to identify priorities for communication and play activities that they would like their children to be able do using a tablet PC but that they currently experienced difficulty with due to verbal and motor limita- tions. Parents rated these areas on performance and satisfac- tion with performance using the Canadian occupational performance measure (COPM).19 The families, in collabora- tion with the researchers identified up to three goals using goal attainment scaling (GAS).20 Finally, parents’ responsivity to their child while using AAC was evaluated using the

Responsive Augmentative and Alternative Communication Style Scale Version 3 (RAACS) 21 scored from a short video of the parent and child interacting. A parent questionnaire was developed in consultation with allied health professionals and parents to comprehensively capture valuable perceptions and experiences of using the eye-gaze control technology systems. The questionnaire consisted of 60 forced response categories and open-ended questions items, of which 12 are reported elsewhere.4 Parents were also asked two questions regarding level of fatigue (i) interfering with, and (ii) resulting from, using eye-gaze control technology. These were rated on a 7-point Likert scale (ranging from 1 = no fatigue through to 7 = extreme fatigue).

Data analysis

Due to the small sample size descriptive statistics were used to summarise results of outcome measures and responses to the parent questionnaire were reported using narrative summary.

Results

Five children with predominantly dyskinetic cerebral palsy, mean age 4 years, 4 months (range = 3–5 years, SD 1 year, 0 months); n = 4 males; GMFCS E&R IV = 1, V = 4; MACS IV = 2, V = 3; and CFCS IV = 1, V = 4 were enrolled. One

Figure 1. Study procedure.

136 P. KARLSSON ET AL.

child had a second diagnosis of cortical vision impairment but able to track objects on the screen. Another child was wearing glasses for myopia. Two additional children had been screened for inclusion but excluded due to inability to suc- cessfully maintain and shift eye fixation (n = 1) and absence of emergent yes/no response (n = 1). Data were collected from May 2016 to January 2017.

All five children completed the trial of the first device. Only one child was able to independently calibrate the device. For the others the primary caregiver calibrated at the initial set up and when required. Two children withdrew prior to the second device trial due to ill health (n = 1) or inability to sit in their seating system while waiting for scheduled Botulinum toxin-A therapy (n = 1). None of the five participants were using any type of alternative and augmentative communica- tion prior to trialling the devices. One child had prior contact with an eye-gaze control system in a 4-week trial, 6 months earlier.

Goal achievement

Parents selected one or two priority areas on the COPM and one (n = 2), three (n = 2) or four (n = 1) goals were set using GAS. The priority areas that the parents selected on the COPM and for intervention goals were (i) engaging with onscreen activities for increasing periods of time (several of these goals specified absence of fatigue) and (ii) making choices, for instance in daily activities (e.g., selecting bath or shower) or in early education activities (e.g., selecting colours and numbers). Table 2 shows that parents of all five children reported clinically significant improvement on performance on COPM and parents of four out of five children reported clinically significant increases in their satisfaction with

performance. After the trial of the first device, all five children achieved their goals including three who achieved beyond expectations. Of the six goals for three children for the trial of the second device, four were achieved and two remained at baseline. These latter two goals, for the same participant, related to the use of the device for communication, whilst the previous goals were related to mastering the eye-gaze device.

Feasibility of administering commonly used activity and participation measures

Parents found DMQ, FOCUS©, YC-PEM and CPQoL chal- lenging to complete. This resulted in substantial missing data and rendering reporting of the findings meaningless. The main challenge was that the measures are more readily applic- able to individuals with less severe motor disability. The PLS- 4 is challenging to complete with children with severe motor impairments who are non-verbal, such as our group of eye- gaze control technology learners. Therefore, parents were asked to complete the caregiver questionnaire of the PLS-4 which does not yield outcome data but is useful for discussion in goal setting.

To minimise assessment burden for families, video record- ings of the RAACS were completed during sessions in which parents were teaching or supporting their child to use eye- gaze control technology. This contravenes the administration instructions which are to record during an activity that parent and child like doing together. Consequently, the ratings made of the video recordings were of little value for this study. However, the process of rating the video recordings was highly informative. RAACS, when completed correctly, would provide valuable outcome data in future studies, and

Table 1. Assessments used in this study.

Domain measured Assessment used Description of the assessment

Parent perceptions Parent questionnaire 60 forced response items and open-ended questions, of which 12 are reported elsewhere. 4

Fatigue Parent report Parent report of their child’s fatigue (i) interfering with, and (ii) exacerbated by eye- gaze control technology activities was rated using a 7-point Likert scale where 1 = no fatigue and 7 = great fatigue.

Language Preschool Language Scale-4 (PLS-4).14 PLS-4 measures young children’s expressive and receptive language from birth through to 6 years 11 months.

Communication Focus on the Outcomes of Communication Under Six (FOCUS©).15

The FOCUS© evaluates and describes real-world changes in a child’s communication skills (e.g., socialisation, independence, talking and being understood) after communication interventions.

Participation Young Children’s Participation and Environment Measure (YC-PEM).16

YC-PEM measures frequency (8-point scale) and involvement (5-point scale) of participation in home, day-care or the community for children aged 0–5 years.

Quality of life Cerebral Palsy Quality of Life Questionnaire – Child version.17

This parent report questionnaire assesses quality of life across seven domains including social well-being and acceptance, feelings about functioning, participation and physical health, and emotional well-being. It has been validated for children aged 4 years and older.

Motivation and mastery Dimensions of Mastery Questionnaire (DMQ) – toddlers/preschool version.18

Parents’ perceptions of their child’s behaviours and abilities to focus and persist on mastering a skill. Parents rate 45 statements on a scale of 1 (not at all typical of child’s behaviour) to 5 (very typical).

Individualised occupational performance areas

Canadian Occupational Performance Measure (COPM).19

COPM is an individualised client-centred measure, completed by semi-structured interview, of change in prioritised self-care, productivity and leisure activities. Change scores of 2 or more are considered clinically meaningful.

Goal attainment Goal Attainment Scaling (GAS).20 Goals were scaled, using a 5-point (−2 to + 2) scale. The baseline, current level of performance was allocated −2 and the desired performance on the goal given a zero.

Responsivity of parents interacting their child

The Responsive Augmentative and Alternative Communication Style Scale Version 3 (RAACS).21

RAACS assesses responsivity of parents interacting with a young child, aged 12–60 months, using AAC. It is scored from a 10-minute video of a parent and child interacting during an activity they like doing together in their own home. Each 1- minute segment of the video is rated according to a 3-point scale (0–2; never, sometimes, often) on 7 statements such as: ‘The parent gives the child space to communicate’ and ‘The parent expands on the child’s communication’.

DEVELOPMENTAL NEUROREHABILITATION 137

viewing the video recordings would provide a mechanism for parents to reflect on their interactions and devise strategies to optimise their interactions with their child.

Parent experience

The third study aim was to gather parents’ views on their child’s response to eye-gaze control technology and support that they received during the trials. Three of the five parents who completed the first trial and two of the three who com- pleted the second trial, found the 6-week home-based trial period to be the right length, two found it too short and one too long. Four of five parents reported that the eye-gaze control technology exceeded their expectations and expressed pride in their child’s achievements. Three families whose child had siblings reported positive opportunities for shared activ- ities with their siblings. The families reported that their chil- dren very quickly mastered the initial simple games but required more games and early learning software. Level of

fatigue interfering with, or resulting from, using eye-gaze control technology was highly variable between children (ran- ging from a rating of 1 to 7). No adverse events were reported apart from fatigue experienced from using the devices.

Overall, the devices were considered reliable and easy to set up when seating and head support were appropriate for the child. In contrast, parents identified that technical difficulties and frequent need for re-calibration of the devices were frus- trating. Easy access to support for families to trouble shoot was perceived as important. Parents highly rated the support they received during the study.

Portability of the tablet PC was viewed as an asset, although many families didn’t change the position of the device. The devices were most often kept in a prominent position on the kitchen table, allowing easy access and quick start up for spontaneous and scheduled activities using the device.

The written guidelines and instructions provided were perceived as useful for success and families welcomed the opportunity to have some of the instructions personalised for their child. Easy access to support for families to trouble shoot was perceived as important.

Discussion

Our overall aims were to generate knowledge about promot- ing communication in young children with dyskinetic cere- bral palsy using eye-gaze control technology and to inform a larger study with regards to feasibility of recruitment, imple- mentation of the technology and outcome measures. We examined goal achievement, communication and participa- tion outcomes in young children with dyskinetic cerebral palsy who use eye-gaze whilst simultaneously gauging the feasibility of available measures. Parent report of their experi- ences was also sought.

Goals identified by parents included engaging with onscreen activities and making choices about daily or early education activities. Parents’ ratings indicated that children’s performance using eye-gaze control technology improved substantially and that goals were achieved. This was particularly the case for the first device that children trialled. Children who progressed well during the first device trial and whose choice making skills progressed to enable introduction of early communication dur- ing the second device trial, were able to use the device to make choices. However, two of the six goals set for the second device were not achieved. We believe this is because, rather than addressing ability to operate the eye-gaze control technology for simple activity, children had started to use the eye-gaze control technology device for communication. Although recep- tive language comprehension was examined using the parent report on the PLS-4, knowledge of other aspects of the child’s development, including cognition and social emotional func- tion, would have informed appropriate goal setting. Currently, options for assessing these important domains do not exist for young children with significant physical and communication difficulties. These findings have implications for the focus and ongoing support of learning and communication activities, sepa- rate to the skills related to operating the eye-gaze control device.22

Table 2. Occupational performance and satisfaction (COPM), goal attainment and parent reported fatigue.

Measured at baseline and completion of

study

COPM (Children n = 5) Performance – difference from baseline

Participant 1 7 Participant 2 4 Participant 3 5 Participant 4 7.5 Participant 5 3.5

Satisfaction – difference from baseline Participant 1 3 Participant 2 2.5 Participant 3 1 Participant 4 8 Participant 5 3

Device 1 Device 2

GAS (Children n = 5; goals set n = 6)

(Children n = 3;

goals set n = 6) a

Attainment levels −2 0 2 −1 0 0 0 3 4 +1 1 0 +2 2 0

Device 1 Device 2

Fatigue levels (children n = 5) (children n = 3)

Fatigue interferes with eye-gaze control activities

(range 1–7) (range 1–7)

Participant 1 5 5 Participant 2 6 – Participant 3 2 2 Participant 4 5 7 Participant 5 2 –

Eye-gaze control activities elicit fatigue (range 1–7) (range 1–7) Participant 1 1 1 Participant 2 6 – Participant 3 5 5 Participant 4 7 4 Participant 5 4 –

COPM: Canadian Occupational Performance Measure; GAS: Goal Attainment Scale; Attainment levels: 0 = expected outcome, +1 = Greater than expected outcome, +2 = Much greater than expected, −1 = Less than expected, −2 = Baseline; fatigue levels 1 = no fatigue, 7 = great fatigue. aOne missing goal for one participant.

138 P. KARLSSON ET AL.

We were unable to obtain helpful outcome information from the measures available for evaluating communication and participation – FOCUS©, YC-PEM and CPQoL, so do not have objective outcomes to report in these domains. Morgan et al.18 argue that determining children’s motiva- tional predispositions can assist in tailoring interventions based on individuals’ strengths. Similarly, it is important to gauge a child’s effective engagement in eye-gaze control technology activities for successful trials. Therefore, parents’ perceptions of their child’s behaviours and abilities to focus and persist on mastering a skill with the DMQ were sought, believing it would assist us in tailoring eye-gaze control technology implementation to the individual child’s motiva- tional predisposition. Parents found all these measures chal- lenging to complete because the measures are more readily applicable to individuals with less severe motor disability. The difficulties experienced by parents in completing these measures reflects the challenges involved in developing measures of mastery motivation, communication, quality of life and participation, amongst other domains, for chil- dren and youth with severe cerebral palsy. An alternative to CPQoL we considered was CPCHILD© 23 which was devel- oped specifically for children with severe cerebral palsy. However, CPQoL was chosen as it more directly addressed quality of life, whereas CPCHILD© was perceived as not sufficiently specific for measuring impact of eye-gaze con- trol technology. The difficulties in measuring these impor- tant outcomes reinforce the value of individualised measures such as COPM and GAS.

In addition to goal achievement, communication, quality of life and participation outcomes, we sought parents’ percep- tions of their child’s response to eye-gaze control technology and of their experiences of the process of device implementa- tion. As expected, the families reported that their children very quickly mastered the initial simple games and families were asking for more games and early learning software. The newly released Windows Control from Tobii Dynavox 24 and the Microsoft 25 initiative, Eye control which enables eye-gaze control in a Windows 10 environment, hold promise for supporting exploration and playfulness by facilitating access to mainstream early learning activities, previously only acces- sible for children who were able to operate a mouse or use a touch screen.

Parents considered the devices reliable and easy to set up when seating and head support were appropriate for the child. As reported elsewhere parents reported no particular prefer- ence between the two eye-gaze control devices.3 Although only one child in the study was able to independently calibrate the devices all participants achieved their goals and improved performance as measured on the GAS and COPM. Even though resources and regular support were provided, parents reported technical difficulties and frequent need for re-cali- bration of the devices. These findings suggest that easy and prompt access to support for families to trouble shoot are important during an intervention trial.

The ideal duration and intensity of trials to identify whether eye-gaze control technology is an appropriate access method for a child has yet to be determined. The 6-week trial in this small study, with provision of customised resource

materials and weekly reviews with a clinician, was perceived as sufficient for clinicians and families to determine if the device was appropriate as an access method for the child. Additional time and resources will also be required on an ongoing basis to fully develop eye-gaze control skills to exploit the capacity of technology for learning, play and communica- tion. Borgestig et al.,26 demonstrated positive outcomes when a team approach was adopted to support the set-up, upskilling and evaluation of eye-gaze control technology for young children.

Limitations

One limitation of this study was inclusion of measures that were not developed specifically for children with severe cere- bral palsy. We explored the feasibility of included measures and obtained valuable information of the necessity to develop measures tailored to this population. The small sample size and inability of two participants to complete the trial of the second devices are additional limitations.

Implications and conclusion

This study demonstrated that children as young as 3 years of age with dyskinetic cerebral palsy gain skills in controlling and using eye-gaze control technology and can play games and immerse themselves in learning activities otherwise denied them. Future study designs need to consider the com- plex nature of cerebral palsy and the vulnerability of this group of children that may prevent engagement in the study during times of illness or exacerbation of co-morbidities.

We recommend that continued support from allied health professionals is required for children and parents as the cog- nitive load and communication requirements of activities advanced to ensure success and ongoing mastery.

COPM and GAS are useful individualised outcome mea- sures, and PLS-4 parent questionnaire and RAACS provide opportunities for informed goal setting and self-reflection on behaviour that could inform home-based intervention pro- grammes for eye-gaze control technology.

The main aim of this pilot study was to begin to generate new knowledge about eye-gaze technology and its potential to promote early communication skills in young children with dyskinetic cerebral palsy. Our secondary aim was to identify the feasibility of a selection of outcome measures to inform conduct of a larger multi-site international study. Definitive assumptions about the impact eye-gaze control technology may have on outcomes such as: communication; participa- tion; mastery motivation; quality of life and parent responsiv- ity were not possible with this small study. However, the results point to the positive impact that eye-gaze control technology can have on children’s goal achievement.

Future research is required to inform clinical practice about when and how eye-gaze control technology can be introduced for children with a severe motor disability as in dyskinetic cerebral palsy. This knowledge is urgently required to optimise outcomes for these children and to support recommendations and funding for eye-gaze control technology provision.

DEVELOPMENTAL NEUROREHABILITATION 139

Acknowledgments

We thank the children and families who participated in this pilot study. We are also grateful for the contributions made by Ange McReynolds (device user) and Sarah Wick (parent to young eye-gaze control technol- ogy user) throughout the study. This study received funding from the Roger Montgomery Family Trust and the AuDa Foundation.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this paper.

ORCID

Margaret Wallen http://orcid.org/0000-0002-8040-5053

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