- Email: [email protected]
Youth With Cerebral Palsy With Differing Upper Limb Abilities: How Do They Access Computers?
1952
BRIEF REPORT
Youth With Cerebral Palsy With Differing Upper Limb Abilities: How Do They Access Computers? T. Claire Davies, PhD, Tom Chau, PhD, Darcy L. Fehlings, MD, MSc, Shanthi Ameratunga, MD, PhD, N. Susan Stott, MD, PhD ABSTRACT. Davies TC, Chau T, Fehlings DL, Ameratunga S, Stott NS. Youth with cerebral palsy with differing upper limb abilities: how do they access computers? Arch Phys Med Rehabil 2010;91:1952-6. Objective: To identify the current level of awareness of different computer access technologies and the choices made regarding mode of access by youth with cerebral palsy (CP) and their families. Design: Survey. Setting: Two tertiary-level rehabilitation centers in New Zealand and Canada. Participants: Youth (N⫽60) with CP, Manual Ability Classification Scale (MACS) levels I to V, age 13 to 25 years. Interventions: Not applicable. Main Outcome Measure: Questionnaire. Results: Fifty (83%) of the 60 youth were aware of at least 1 available assistive technology (AT), such as touch screens and joysticks. However, only 34 youth (57%) were familiar with the accessibility options currently available in the most common operating systems. Thirty-three (94%) of 35 youth who were MACS I and II used a standard mouse and keyboard, while few chose to use assistive technology or accessibility options. In contrast, 10 (40%) of 25 youth who were MACS III to V used a variety of assistive technologies such as touch screens, joysticks, trackballs, and scanning technologies. This group also had the highest use of accessibility options, although only 15 (60%) of the 25 were aware of them. Conclusion: Most youth with CP were aware of, and used, assistive technologies to enhance their computer access but were less knowledgeable about accessibility options. Accessibility options allow users to modify their own computer interface and can thus enhance computer access for youth with CP. Clinicians should be knowledgeable enough to give informed advice in this area of computer access, thus ensuring that all youth with CP can benefit from both AT and accessibility options, as required. Key Words: Cerebral palsy; Computers; Rehabilitation; Self-help devices. © 2010 by the American Congress of Rehabilitation Medicine
From the Department of Surgery (Davies, Stott), Section of Epidemiology and Biostatistics, School of Population Health (Ameratunga), University of Auckland, Auckland, New Zealand; Department of Paediatrics (Fehlings), Institute of Biomaterials and Biomedical Engineering (Fehlings, Chau), Holland Bloorview Kids Rehabilitation Hospital (Fehlings, Chau), University of Toronto, Toronto, ON, Canada. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated. Reprint requests to T. Claire Davies, PhD, University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand, e-mail: [email protected]. 0003-9993/10/9112-00534$36.00/0 doi:10.1016/j.apmr.2010.08.013
Arch Phys Med Rehabil Vol 91, December 2010
EREBRAL PALSY IS the most common cause of physiC cal disability in children and is caused by a static insult to the developing neurologic system before the age of 2 years. 1
Children with cerebral palsy can have deficits in fine and gross motor control of the upper limb that lead to difficulties in targeting computer screen icons when using a standard mouse and keyboard. Traditionally, assistive technologies such as scanning technologies, joysticks, trackballs, and more complex devices such as head-pointers and gesture recognition are used to enable access for those who cannot use a standard keyboard and mouse.2 However, the published literature addressing the effectiveness of these devices is limited, with most studies classified as either level IV or level V evidence by the American Academy of Cerebral Palsy and Developmental Medicine guidelines.2,3 More recently, Microsoft Corpa and Apple Incb have introduced accessibility options into the Windows and Mac operating systems for all computers, which aim to provide the user with greater independent control of their own computer interface.4,5 For example, StickyKeys (Windows and Mac) allows the user to serially press buttons, rather than holding 2 or 3 at the same time (eg, control, alt, delete to initiate log-on), while FilterKeys (Windows)/Key Delay (Repeat) (Mac) minimizes inadvertent multiple selections of the same letter or icon by those who have a tremor. An onscreen keyboard that allows scanning (with a keyboard key, mouse, or serial port connection acting as the switch) can also be used in Windows. Although these options have been available for at least 10 years, it is not clear how widely they are used to enhance computer access. The MACS is a reliable and valid way to classify upper limb ability in children and young adults with CP.6 The MACS is based on reports of ability to handle objects and can be either self-reported by young adults with CP7 or reported by parents of children with CP8,9 with high levels of test retest reliability.6,7,9,10 The MACS spans a wide range of ability from “handles objects easily and successfully” (MACS level I), through “handles objects with difficulty; needs help to prepare and/or modify activities” (MACS III), to “does not handle objects and has severely limited ability to perform even simple actions” (MACS V).6 We have recently reported that, as upper-limb impairment increases (as classified by the MACS), there is a doubling of the time taken to complete a simple computer task using a mouse.11 Although the current literature discusses assistive technologies used to aid computer access,12 there is little written about the use of accessibility options and how these might facilitate computer access, either independent of, or in conjunction with, assistive technology. The aim of this pilot study of youth with CP was therefore to identify the current level of awareness of different computer access technologies and the choices made regarding mode of access. List of Abbreviations CP MACS
cerebral palsy Manual Ability Classification System
1953
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
METHODS
5 (8%) used laptops. Although too small to analyze statistically, there were no evident differences in computer use between the youth from Toronto and the youth from Auckland. Fifty (83%) of the 60 participants were aware of assistive technology to aid in computer access. Many participants had heard of a touch screen (n⫽40; 67%) and speech recognition software (n⫽32; 53%), but almost none had heard of a camera mouse (n⫽7; 12%) or gesture recognition (n⫽4; 7%). Thirty of the 35 youth MACS level I and II had heard of at least 1 or more assistive technologies, but few chose to use them (see table 1). Twenty of the 25 youth who were MACS level III to V were aware of assistive technology, but only 10 used 1 or more assistive devices. Those who did use assistive technologies were not limited to 1 device but often used a combination. For example, 1 participant (denoted by ‡ in table 1) used a joystick, trackball, or touch screen depending on his needs for each program. Only 34 (57%) of the 60 participants were aware of accessibility options within the computer’s operating system (i.e., Mac or Windows). Nineteen (54%) of 35 youth MACS I and II were aware of accessibility options, but only 3 youth chose to use them. One participant, who was MACS I, used SoundSentry/Visual Alert to provide visual cues when sounds were made by the system. Two youth who were MACS level II used StickyKeys, with 1 also using FilterKeys and cursor changes. Fifteen (60%) of the 25 youth MACS levels III to V were aware of accessibility options, and 8 chose to use them in varying combinations. One, who was MACS level III, used StickyKeys. Four participants who were MACS IV accessed a combination of accessibility options including StickyKeys (3), FilterKeys (2), SerialKeys/Alternative Input Devices (2), SoundSentry/Visual Alert (1), cursor modifications (1), extra keyboard help (1), and narrator (1). Finally, 3 participants with MACS V used high contrast, of whom 2 also used ToggleKeys and SoundSentry. One of these 3 participants also used extra keyboard help and MouseKeys, and the other used the onscreen keyboard.
Participants The data analyzed in this report were collected as part of a larger study of motor control and computer use in 60 youth with CP and their families. This study had been approved by the Northern X Regional Ethics Committee in Auckland, New Zealand, and the Bloorview Research Ethics Board in Toronto, ON, Canada. The inclusion criteria were that participants had to be age between 13 to 25 years with a diagnosis of CP. Potential participants were recruited from tertiary level orthopedic and pediatric clinics, where they were attending routine follow-up appointments. Procedure Participants completed a computer-related assistive technology questionnaire, either independently or with the assistance of parents or researcher if required. The questionnaire explored the locations of computer access, the method of access, and the awareness and use of computer access technology (appendix 1). All participants were classified by the MACS, with usual ability levels self-reported by the participant and/or the parent as recommended by the developers.7,10 RESULTS Sixty youth with CP, Gross Motor Function Classification System levels I to V (mean age ⫾ SD, 16.3⫾3.9y; range, 13–25y; 29 male and 31 female subjects) were recruited (table 1). All 60 participants used a computer, 54 (90%) both at school and at home. Twenty-six participants (43%) had accessed computers at the library and 22 (37%) at a friend’s home. Only 7 participants (12%) had used an internet cafe. Of the 58 (97%) students who attended school, 12 (20%) used laptops and desktops, 27 (45%) used desktops, 16 (27%) used laptops, 1 used a tablet (2%), and 2 did not access computers at school (3%). At home, similar numbers were reported (11, 30, 14, 1, 1, respectively). For those who used computers at their place of employment, 3 (5%) accessed a desktop and a laptop, 7 (12%) used desktops, and
Table 1: Participant Demographics and Computer Use
Demographic
Age (y) Mean ⫾ SD Sex, n (%) Male Female Anatomic type of cerebral palsy, n (%) Unilateral Bilateral Current computer access, n (%) Use of standard mouse and keyboard Use of accessibility options Use of assistive technologies ● Joystick ● Trackball ● Touch screen ● Scanning technologies ● Speech recognition software
MACS Level
All Participants n⫽60
Level I n⫽16
Level II n⫽19
Level III n⫽11
Level IV n⫽6
Level V n⫽8
16.3⫾3.9
14.6⫾2.1
16.6⫾4.2
19.2⫾5.5
15.7⫾2.0
15.8⫾2.3
30 (50) 30 (50)
8 (13) 8 (13)
12 (20) 7 (12)
6 (10) 5 (8)
3 (5) 3 (5)
1 (2) 7 (12)
10 (17) 50 (83)
10 (17) 6 (10)
0 19 (32)
0 11 (18)
0 6 (10)
0 8 (13)
48 (80) 10 (17)
16 (27) 1 (2)
17 (28) 2 (3)
10 (17) 0
3 (5) 4 (7)
2 (3) 3 (5)
4 3 5 7 2
0 0 0 0 1*
1† 0 1 1† 0
1 0 0 0 0
2‡§ 2*‡ 2‡§ 1 0
0 1储 1储 6储¶ 1¶
*Assistive technology used in combination with standard mouse and keyboard. †‡§储¶ Use of multiple forms of assistive technology in combination. Each symbol represents 1 participant.
Arch Phys Med Rehabil Vol 91, December 2010
1954
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
DISCUSSION The advantages of computer use in childhood and adolescence are well recognized and include enhanced educational attainment, improved social networks, and promotion of fine motor, visual, and perceptual skills.13 For youth with CP, internet and e-mail use has particular salience, providing an opportunity to play and work within a virtual environment, enhancing societal participation. Given the benefits of computer use for youth with CP, it is surprising that they appear to have important gaps in knowledge about computer access technologies that might be relevant to them or aid them in using computers more effectively. Further targeted research is required to understand better the reasons for these gaps in knowledge, the consequent effects, and how they might best be addressed. Most participants were aware of at least 1 assistive device to aid access. However, of concern, only just over half of the participants were aware of the accessibility options that are freely available within the operating system environment. This is despite information on accessibility options being included as part of the operating system (Ease of Access within the control panel of Windows systems, or Mac OS X in Apple systems). Accessibility options have been present in all computers (both Mac and Windows) since 1995 and include an on-screen keyboard, the ability to increase the size of the cursor or icons, and options to adjust the color or contrast or the speed of movement.4,5 Accessibility options allow customization of the computer interface by the user to suit themselves, rather than having to rely on an expert or external equipment. Another benefit is the ability to integrate combinations of assistive technologies and accessibility options as necessary. This study did not explore why so many of the youth with CP appeared unaware of the full range of computer access technologies available to them. One reason may be that many clinicians find prescription of specific computer access technologies for children and youth with CP challenging because of a paucity of published evidence, a large number of commercially available devices, and the heterogeneity of the individuals’ needs.14 Rapid changes in computer design also mean that
Arch Phys Med Rehabil Vol 91, December 2010
clinician or educator knowledge regarding computer access technologies may be incomplete or out of date. Addressing these issues requires research that is (1) responsive to the needs and preferences of the individual with CP and (2) leads to solutions are both feasible and cost-effective. For example, empowerment of youth with CP to self-explore accessibility options available within the computer operating system is an attractive solution. However, identification of the best combinations of assistive technologies and accessibility options for any 1 individual also requires that health and educational professionals are up-skilled in the changing computer environment. Study Limitations Limitations of this study include the small sample size and the selection bias inherent in recruitment from a tertiary-level center. Those youth attending a tertiary-level center might be expected to have greater access to professional assistance in using various computer access technologies compared with those who receive services in more remote areas. Thus, the level of awareness of computer access technologies found in this study may overestimate the level of knowledge in the population of youth with CP as a whole. CONCLUSIONS These findings provide some insight into the knowledge and practical choices made by youth with CP with different abilities regarding computer access technologies. Deficits in knowledge of computer access technologies appear common, particularly around the use of accessibility options, despite these being freely available to all who use a standard computer. Both youth with CP and the clinicians who advise them need to be aware of the accessibility options within computer operating systems to ensure effective and efficient use both in conjunction, or independent of, assistive technology. Up-skilling youth with CP and the professionals who work with them on currently available computer access technologies should be a priority for both the educational and health sectors.
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
1955
APPENDIX 1:
Arch Phys Med Rehabil Vol 91, December 2010
1956
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
References 1. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 2007;109:8-14. 2. Davies TC, Mudge S, Ameratunga SN, Stott NS. Enabling selfdirected computer use for individuals with cerebral palsy: a systematic review of assistive devices and technologies. Dev Med Child Neurol 2010;52:510-6. 3. Darrah J, Hickman R, O’Donell M, Vogtle L, Wiart L, Treatment Outcomes Committee. AACPDM Methodology to develop systematic reviews of treatment interventions. Revision 1.2. American Academy of Cerebral Palsy and Developmental Medicine; 2008. Available at: http://www.aacpdm.org/membership/members/ committees/treatment_outcomes_methodology.pdf. Accessed October 16, 2010. 4. Microsoft Corp. Make Windows XP more accessible for everyone. Available at: http://www.microsoft.com/windowsxp/using/ accessibility/default.mspx. Accessed May 10, 2010. 5. Apple Inc. Accessibility 2010. Available at: http://www.apple. com/accessibility/. Accessed May 10, 2010. 6. Eliasson AC, Krumlinde-Sundholm L, Rosblad B, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol 2006;48:549-54. 7. van Meeteren J, Nieuwenhuijsen C, de Grund A, Stam HJ, Roebroeck ME. Using the manual ability classification system in
Arch Phys Med Rehabil Vol 91, December 2010
8.
9.
10.
11.
12.
13. 14.
young adults with cerebral palsy and normal intelligence. Disabil Rehabil 2010 (EPub ahead of print May 8, 2010). Imms C, Carlin J, Eliasson AC. Stability of caregiver-reported manual ability and gross motor function classifications of cerebral palsy. Dev Med Child Neurol 2010;52:153-9. Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL. Reliability of the manual ability classification system for children with cerebral palsy. Dev Med Child Neurol 2006;48:950-3. Ohrvall AM, Eliasson AC. Parents’ and therapists’ perceptions of the content of the Manual Ability Classification System, MACS. Scand J Occup Ther 2010 (Epub ahead of print Feb 27, 2010). Davies TC, Chau T, Fehlings D, Ameratunga S, Stott NS. How is cursor control during computer use by youth with cerebral palsy (CP) related to their MACS levels? Proceedings of the American Academy for Cerebral Palsy and Developmental Medicine. Washington DC; 2010. Dev Med Child Neurol 2010; 52(Suppl 5):29. Burton M, Nieuwenhuijsen ER, Epstein MJ. Computer-related assistive technology: satisfaction and experiences among users with disabilities. Assist Technol 2008;20:99-106; quiz 84-5. Straker L, Pollock C, Maslen B. Principles for the wise use of computers by children. Ergonomics 2009;52:1386-401. Mazer B, Dumont C, Vincent C. Validation of the assessment of computer task performance for children. Technol Disabil 2003; 15:35-43.
BRIEF REPORT
Youth With Cerebral Palsy With Differing Upper Limb Abilities: How Do They Access Computers? T. Claire Davies, PhD, Tom Chau, PhD, Darcy L. Fehlings, MD, MSc, Shanthi Ameratunga, MD, PhD, N. Susan Stott, MD, PhD ABSTRACT. Davies TC, Chau T, Fehlings DL, Ameratunga S, Stott NS. Youth with cerebral palsy with differing upper limb abilities: how do they access computers? Arch Phys Med Rehabil 2010;91:1952-6. Objective: To identify the current level of awareness of different computer access technologies and the choices made regarding mode of access by youth with cerebral palsy (CP) and their families. Design: Survey. Setting: Two tertiary-level rehabilitation centers in New Zealand and Canada. Participants: Youth (N⫽60) with CP, Manual Ability Classification Scale (MACS) levels I to V, age 13 to 25 years. Interventions: Not applicable. Main Outcome Measure: Questionnaire. Results: Fifty (83%) of the 60 youth were aware of at least 1 available assistive technology (AT), such as touch screens and joysticks. However, only 34 youth (57%) were familiar with the accessibility options currently available in the most common operating systems. Thirty-three (94%) of 35 youth who were MACS I and II used a standard mouse and keyboard, while few chose to use assistive technology or accessibility options. In contrast, 10 (40%) of 25 youth who were MACS III to V used a variety of assistive technologies such as touch screens, joysticks, trackballs, and scanning technologies. This group also had the highest use of accessibility options, although only 15 (60%) of the 25 were aware of them. Conclusion: Most youth with CP were aware of, and used, assistive technologies to enhance their computer access but were less knowledgeable about accessibility options. Accessibility options allow users to modify their own computer interface and can thus enhance computer access for youth with CP. Clinicians should be knowledgeable enough to give informed advice in this area of computer access, thus ensuring that all youth with CP can benefit from both AT and accessibility options, as required. Key Words: Cerebral palsy; Computers; Rehabilitation; Self-help devices. © 2010 by the American Congress of Rehabilitation Medicine
From the Department of Surgery (Davies, Stott), Section of Epidemiology and Biostatistics, School of Population Health (Ameratunga), University of Auckland, Auckland, New Zealand; Department of Paediatrics (Fehlings), Institute of Biomaterials and Biomedical Engineering (Fehlings, Chau), Holland Bloorview Kids Rehabilitation Hospital (Fehlings, Chau), University of Toronto, Toronto, ON, Canada. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated. Reprint requests to T. Claire Davies, PhD, University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand, e-mail: [email protected]. 0003-9993/10/9112-00534$36.00/0 doi:10.1016/j.apmr.2010.08.013
Arch Phys Med Rehabil Vol 91, December 2010
EREBRAL PALSY IS the most common cause of physiC cal disability in children and is caused by a static insult to the developing neurologic system before the age of 2 years. 1
Children with cerebral palsy can have deficits in fine and gross motor control of the upper limb that lead to difficulties in targeting computer screen icons when using a standard mouse and keyboard. Traditionally, assistive technologies such as scanning technologies, joysticks, trackballs, and more complex devices such as head-pointers and gesture recognition are used to enable access for those who cannot use a standard keyboard and mouse.2 However, the published literature addressing the effectiveness of these devices is limited, with most studies classified as either level IV or level V evidence by the American Academy of Cerebral Palsy and Developmental Medicine guidelines.2,3 More recently, Microsoft Corpa and Apple Incb have introduced accessibility options into the Windows and Mac operating systems for all computers, which aim to provide the user with greater independent control of their own computer interface.4,5 For example, StickyKeys (Windows and Mac) allows the user to serially press buttons, rather than holding 2 or 3 at the same time (eg, control, alt, delete to initiate log-on), while FilterKeys (Windows)/Key Delay (Repeat) (Mac) minimizes inadvertent multiple selections of the same letter or icon by those who have a tremor. An onscreen keyboard that allows scanning (with a keyboard key, mouse, or serial port connection acting as the switch) can also be used in Windows. Although these options have been available for at least 10 years, it is not clear how widely they are used to enhance computer access. The MACS is a reliable and valid way to classify upper limb ability in children and young adults with CP.6 The MACS is based on reports of ability to handle objects and can be either self-reported by young adults with CP7 or reported by parents of children with CP8,9 with high levels of test retest reliability.6,7,9,10 The MACS spans a wide range of ability from “handles objects easily and successfully” (MACS level I), through “handles objects with difficulty; needs help to prepare and/or modify activities” (MACS III), to “does not handle objects and has severely limited ability to perform even simple actions” (MACS V).6 We have recently reported that, as upper-limb impairment increases (as classified by the MACS), there is a doubling of the time taken to complete a simple computer task using a mouse.11 Although the current literature discusses assistive technologies used to aid computer access,12 there is little written about the use of accessibility options and how these might facilitate computer access, either independent of, or in conjunction with, assistive technology. The aim of this pilot study of youth with CP was therefore to identify the current level of awareness of different computer access technologies and the choices made regarding mode of access. List of Abbreviations CP MACS
cerebral palsy Manual Ability Classification System
1953
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
METHODS
5 (8%) used laptops. Although too small to analyze statistically, there were no evident differences in computer use between the youth from Toronto and the youth from Auckland. Fifty (83%) of the 60 participants were aware of assistive technology to aid in computer access. Many participants had heard of a touch screen (n⫽40; 67%) and speech recognition software (n⫽32; 53%), but almost none had heard of a camera mouse (n⫽7; 12%) or gesture recognition (n⫽4; 7%). Thirty of the 35 youth MACS level I and II had heard of at least 1 or more assistive technologies, but few chose to use them (see table 1). Twenty of the 25 youth who were MACS level III to V were aware of assistive technology, but only 10 used 1 or more assistive devices. Those who did use assistive technologies were not limited to 1 device but often used a combination. For example, 1 participant (denoted by ‡ in table 1) used a joystick, trackball, or touch screen depending on his needs for each program. Only 34 (57%) of the 60 participants were aware of accessibility options within the computer’s operating system (i.e., Mac or Windows). Nineteen (54%) of 35 youth MACS I and II were aware of accessibility options, but only 3 youth chose to use them. One participant, who was MACS I, used SoundSentry/Visual Alert to provide visual cues when sounds were made by the system. Two youth who were MACS level II used StickyKeys, with 1 also using FilterKeys and cursor changes. Fifteen (60%) of the 25 youth MACS levels III to V were aware of accessibility options, and 8 chose to use them in varying combinations. One, who was MACS level III, used StickyKeys. Four participants who were MACS IV accessed a combination of accessibility options including StickyKeys (3), FilterKeys (2), SerialKeys/Alternative Input Devices (2), SoundSentry/Visual Alert (1), cursor modifications (1), extra keyboard help (1), and narrator (1). Finally, 3 participants with MACS V used high contrast, of whom 2 also used ToggleKeys and SoundSentry. One of these 3 participants also used extra keyboard help and MouseKeys, and the other used the onscreen keyboard.
Participants The data analyzed in this report were collected as part of a larger study of motor control and computer use in 60 youth with CP and their families. This study had been approved by the Northern X Regional Ethics Committee in Auckland, New Zealand, and the Bloorview Research Ethics Board in Toronto, ON, Canada. The inclusion criteria were that participants had to be age between 13 to 25 years with a diagnosis of CP. Potential participants were recruited from tertiary level orthopedic and pediatric clinics, where they were attending routine follow-up appointments. Procedure Participants completed a computer-related assistive technology questionnaire, either independently or with the assistance of parents or researcher if required. The questionnaire explored the locations of computer access, the method of access, and the awareness and use of computer access technology (appendix 1). All participants were classified by the MACS, with usual ability levels self-reported by the participant and/or the parent as recommended by the developers.7,10 RESULTS Sixty youth with CP, Gross Motor Function Classification System levels I to V (mean age ⫾ SD, 16.3⫾3.9y; range, 13–25y; 29 male and 31 female subjects) were recruited (table 1). All 60 participants used a computer, 54 (90%) both at school and at home. Twenty-six participants (43%) had accessed computers at the library and 22 (37%) at a friend’s home. Only 7 participants (12%) had used an internet cafe. Of the 58 (97%) students who attended school, 12 (20%) used laptops and desktops, 27 (45%) used desktops, 16 (27%) used laptops, 1 used a tablet (2%), and 2 did not access computers at school (3%). At home, similar numbers were reported (11, 30, 14, 1, 1, respectively). For those who used computers at their place of employment, 3 (5%) accessed a desktop and a laptop, 7 (12%) used desktops, and
Table 1: Participant Demographics and Computer Use
Demographic
Age (y) Mean ⫾ SD Sex, n (%) Male Female Anatomic type of cerebral palsy, n (%) Unilateral Bilateral Current computer access, n (%) Use of standard mouse and keyboard Use of accessibility options Use of assistive technologies ● Joystick ● Trackball ● Touch screen ● Scanning technologies ● Speech recognition software
MACS Level
All Participants n⫽60
Level I n⫽16
Level II n⫽19
Level III n⫽11
Level IV n⫽6
Level V n⫽8
16.3⫾3.9
14.6⫾2.1
16.6⫾4.2
19.2⫾5.5
15.7⫾2.0
15.8⫾2.3
30 (50) 30 (50)
8 (13) 8 (13)
12 (20) 7 (12)
6 (10) 5 (8)
3 (5) 3 (5)
1 (2) 7 (12)
10 (17) 50 (83)
10 (17) 6 (10)
0 19 (32)
0 11 (18)
0 6 (10)
0 8 (13)
48 (80) 10 (17)
16 (27) 1 (2)
17 (28) 2 (3)
10 (17) 0
3 (5) 4 (7)
2 (3) 3 (5)
4 3 5 7 2
0 0 0 0 1*
1† 0 1 1† 0
1 0 0 0 0
2‡§ 2*‡ 2‡§ 1 0
0 1储 1储 6储¶ 1¶
*Assistive technology used in combination with standard mouse and keyboard. †‡§储¶ Use of multiple forms of assistive technology in combination. Each symbol represents 1 participant.
Arch Phys Med Rehabil Vol 91, December 2010
1954
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
DISCUSSION The advantages of computer use in childhood and adolescence are well recognized and include enhanced educational attainment, improved social networks, and promotion of fine motor, visual, and perceptual skills.13 For youth with CP, internet and e-mail use has particular salience, providing an opportunity to play and work within a virtual environment, enhancing societal participation. Given the benefits of computer use for youth with CP, it is surprising that they appear to have important gaps in knowledge about computer access technologies that might be relevant to them or aid them in using computers more effectively. Further targeted research is required to understand better the reasons for these gaps in knowledge, the consequent effects, and how they might best be addressed. Most participants were aware of at least 1 assistive device to aid access. However, of concern, only just over half of the participants were aware of the accessibility options that are freely available within the operating system environment. This is despite information on accessibility options being included as part of the operating system (Ease of Access within the control panel of Windows systems, or Mac OS X in Apple systems). Accessibility options have been present in all computers (both Mac and Windows) since 1995 and include an on-screen keyboard, the ability to increase the size of the cursor or icons, and options to adjust the color or contrast or the speed of movement.4,5 Accessibility options allow customization of the computer interface by the user to suit themselves, rather than having to rely on an expert or external equipment. Another benefit is the ability to integrate combinations of assistive technologies and accessibility options as necessary. This study did not explore why so many of the youth with CP appeared unaware of the full range of computer access technologies available to them. One reason may be that many clinicians find prescription of specific computer access technologies for children and youth with CP challenging because of a paucity of published evidence, a large number of commercially available devices, and the heterogeneity of the individuals’ needs.14 Rapid changes in computer design also mean that
Arch Phys Med Rehabil Vol 91, December 2010
clinician or educator knowledge regarding computer access technologies may be incomplete or out of date. Addressing these issues requires research that is (1) responsive to the needs and preferences of the individual with CP and (2) leads to solutions are both feasible and cost-effective. For example, empowerment of youth with CP to self-explore accessibility options available within the computer operating system is an attractive solution. However, identification of the best combinations of assistive technologies and accessibility options for any 1 individual also requires that health and educational professionals are up-skilled in the changing computer environment. Study Limitations Limitations of this study include the small sample size and the selection bias inherent in recruitment from a tertiary-level center. Those youth attending a tertiary-level center might be expected to have greater access to professional assistance in using various computer access technologies compared with those who receive services in more remote areas. Thus, the level of awareness of computer access technologies found in this study may overestimate the level of knowledge in the population of youth with CP as a whole. CONCLUSIONS These findings provide some insight into the knowledge and practical choices made by youth with CP with different abilities regarding computer access technologies. Deficits in knowledge of computer access technologies appear common, particularly around the use of accessibility options, despite these being freely available to all who use a standard computer. Both youth with CP and the clinicians who advise them need to be aware of the accessibility options within computer operating systems to ensure effective and efficient use both in conjunction, or independent of, assistive technology. Up-skilling youth with CP and the professionals who work with them on currently available computer access technologies should be a priority for both the educational and health sectors.
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
1955
APPENDIX 1:
Arch Phys Med Rehabil Vol 91, December 2010
1956
COMPUTER ACCESS FOR YOUNG PEOPLE WITH CEREBRAL PALSY, Davies
References 1. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 2007;109:8-14. 2. Davies TC, Mudge S, Ameratunga SN, Stott NS. Enabling selfdirected computer use for individuals with cerebral palsy: a systematic review of assistive devices and technologies. Dev Med Child Neurol 2010;52:510-6. 3. Darrah J, Hickman R, O’Donell M, Vogtle L, Wiart L, Treatment Outcomes Committee. AACPDM Methodology to develop systematic reviews of treatment interventions. Revision 1.2. American Academy of Cerebral Palsy and Developmental Medicine; 2008. Available at: http://www.aacpdm.org/membership/members/ committees/treatment_outcomes_methodology.pdf. Accessed October 16, 2010. 4. Microsoft Corp. Make Windows XP more accessible for everyone. Available at: http://www.microsoft.com/windowsxp/using/ accessibility/default.mspx. Accessed May 10, 2010. 5. Apple Inc. Accessibility 2010. Available at: http://www.apple. com/accessibility/. Accessed May 10, 2010. 6. Eliasson AC, Krumlinde-Sundholm L, Rosblad B, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol 2006;48:549-54. 7. van Meeteren J, Nieuwenhuijsen C, de Grund A, Stam HJ, Roebroeck ME. Using the manual ability classification system in
Arch Phys Med Rehabil Vol 91, December 2010
8.
9.
10.
11.
12.
13. 14.
young adults with cerebral palsy and normal intelligence. Disabil Rehabil 2010 (EPub ahead of print May 8, 2010). Imms C, Carlin J, Eliasson AC. Stability of caregiver-reported manual ability and gross motor function classifications of cerebral palsy. Dev Med Child Neurol 2010;52:153-9. Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL. Reliability of the manual ability classification system for children with cerebral palsy. Dev Med Child Neurol 2006;48:950-3. Ohrvall AM, Eliasson AC. Parents’ and therapists’ perceptions of the content of the Manual Ability Classification System, MACS. Scand J Occup Ther 2010 (Epub ahead of print Feb 27, 2010). Davies TC, Chau T, Fehlings D, Ameratunga S, Stott NS. How is cursor control during computer use by youth with cerebral palsy (CP) related to their MACS levels? Proceedings of the American Academy for Cerebral Palsy and Developmental Medicine. Washington DC; 2010. Dev Med Child Neurol 2010; 52(Suppl 5):29. Burton M, Nieuwenhuijsen ER, Epstein MJ. Computer-related assistive technology: satisfaction and experiences among users with disabilities. Assist Technol 2008;20:99-106; quiz 84-5. Straker L, Pollock C, Maslen B. Principles for the wise use of computers by children. Ergonomics 2009;52:1386-401. Mazer B, Dumont C, Vincent C. Validation of the assessment of computer task performance for children. Technol Disabil 2003; 15:35-43.