3.1 Participants
A total of 22 Canadian caregivers of children with CP and LFS who had received rehabilitation services and 39 Canadian clinicians who provided rehabilitation services to children with CP and LFS participated in the surveys (Table 1). Most caregivers and clinicians were female (n = 21, 95%; n = 36, 92%), Caucasian (n = 19, 86%; n = 34, 89%), educated at the post secondary level (n = 19, 86%; n = 39, 100%), residing or practicing in Ontario (n = 14,
Table 1. Participant demographics.
Characteristic
|
Caregivers
|
Clinicians
|
N
|
22
|
39
|
Age (yrs), mean (SD)a
|
42 (9)
|
41 (11)
|
Female, n (%)
|
21 (95)
|
36 (92)
|
Mother, n (%)
|
20 (91)
|
N/A
|
Ethnic or cultural background, n (%)ab
|
|
|
Caucasian
|
19 (86)
|
34 (89)
|
Asian
|
3 (14)
|
10 (26)
|
First Nations
|
0
|
2 (5)
|
Black
|
0
|
1 (3)
|
Latin American
|
0
|
1 (3)
|
Highest level of education, n (%)
|
|
|
Highschool credits or diploma
|
3 (14)
|
0 (0)
|
Post-Secondary Education
|
19 (86)
|
39 (100)
|
Province/territory of residence/practice, n (%)c
|
|
|
Ontario
|
14 (64)
|
19 (53)
|
British Columbia
|
3 (14)
|
6 (17)
|
New Brunswick
|
1 (5)
|
5 (14)
|
Quebec
|
2 (9)
|
3 (8)
|
Nova Scotia
|
1 (5)
|
1 (3)
|
Alberta
|
0 (0)
|
1 (3)
|
Manitoba
|
0 (0)
|
1(3)
|
Size of community of residence/practice, n (%)bc
|
|
|
Large Urban (>100 000)
|
12 (55)
|
21 (58)
|
Medium (30 000 – 99 000)
|
3 (14)
|
12 (33)
|
Small (1 000 – 29 999)
|
4 (18)
|
5 (14)
|
Rural (<1 000)
|
3 (14)
|
3 (8)
|
Professional training, n (%)
|
|
|
Speech-language pathology
|
N/A
|
28 (72)
|
Occupational therapy
|
N/A
|
21 (8)
|
Physiotherapy
|
N/A
|
2 (5)
|
Otherd
|
N/A
|
1 (3)
|
Years of practice experience, n (%)
|
|
|
10 yrs +
|
N/A
|
19 (49)
|
5 – 10 yrs
|
N/A
|
9 (23)
|
2 – 5 yrs
|
N/A
|
8 (21)
|
<2 yrs
|
N/A
|
3 (8)
|
a N (clinician) = 38; 1 clinician missing data
b Participants could identify multiple cultural backgrounds, sizes of community of practice, clinical practice contexts
c N (clinician) = 36; 3 clinicians missing data
d Other included adapted spiral praxis/somatic movement education
64%; n = 19, 53%) in large urban communities (n = 12, 55%; n = 21, 58%) with mean ages of 42 (SD = 9 yrs) and 41 (SD = 11 yrs) years respectively. Caregivers typically self-identified as mothers of the children with CP and LFS (n = 20, 91%). Clinicians were mainly speech-language pathologists (SLPs; n = 28, 72%) with greater than 5 years clinical practice experience (n = 28, 72%).
3.2 Children with CP with LFS
Demographics of the children with CP and LFS who informed survey responses are summarized in Table 2. All caregivers cared for a single child with CP and LFS while at least 10% of the caseloads of most clinicians (n = 22; 61%) were composed of children with CP and LFS. Caregivers reported a mean child age of 9 years (SD = 6 yrs) while the vast majority of clinicians reported working with children between the ages of 18 months and 5 years (n = 29; 74%), 6 years and 12 years (n = 31; 79%), and 13 and 18 years (n = 28; 72%).
Children with high gross motor, fine motor and speech needs mainly informed the responses of both participant groups. The majority of caregivers reported that their children with CP and LFS presented as GMFCS level IV or V (n = 20; 91%), MACS level VI or V (n = 15; 68%), and VSS level III or IV (n = 18; 82%). Similarly, the overwhelming majority of clinicians indicated that their caseloads included children with CP and LFS with GMFCS level IV (n = 30; 83%) or V (n = 29; 81%) gross motor abilities, MACS level IV (n = 32; 89%) or V (n = 29; 81%) fine motor skills, and Viking Speech Scale level III (n = 30; 83%) or IV (n = 31; 86%) speech abilities. Forty-one percent (n = 9) of caregivers reported that their child with CP and LFS had a visual impairment while 29% (n = 10) of clinicians indicated that at least 10% of their caseload of children with CP and LFS had a diagnosis of cortical visual impairment (CVI).
Table 2. Demographics of children with cerebral palsy (CP) and complex communication needs (LFS).
Characteristic
|
Caregivers
|
Clinicians
|
Number of children with CP and LFS, n (%)a
|
1 (100%)
|
N/A
|
Caseload % composed of children with CP and LFS, n (%)b
|
|
|
<10%
|
N/A
|
14 (39)
|
10 – 25 %
|
N/A
|
13 (36)
|
- – 50 %
|
N/A
|
4 (11)
|
50 – 75 %
|
N/A
|
3 (8)
|
>75%
|
N/A
|
2(6)
|
Age (yrs), mean (SD)
|
9 (6)
|
N/A
|
Age range of all children seen in practice, n (%)bc
|
|
|
<18 months
|
N/A
|
14 (36)
|
18 mos – 5 yrs
|
N/A
|
29 (74)
|
6 – 12 yrs
|
N/A
|
31 (79)
|
13 – 18 yrs
|
N/A
|
28 (72)
|
>18 yrs
|
N/A
|
13 (33)
|
Gross motor abilities of children with CP and LFS, n (%)bc
|
|
|
GMFCS I
|
1 (5)
|
13 (36)
|
GMFCS II
|
1 (5)
|
21 (58)
|
GMFCS III
|
0 (0)
|
26 (72)
|
GMFCS IV
|
8 (36)
|
30 (83)
|
GMFCS V
|
12 (55)
|
29 (81)
|
Fine motor abilities of children with CP and LFS, n (%)bc
|
|
|
MACS I
|
0 (0)
|
8 (22)
|
MACS II
|
4 (18)
|
14 (39)
|
MACS III
|
3 (14)
|
28 (78)
|
MACS IV
|
8 (36)
|
32 (89)
|
MACS V
|
7 (32)
|
29 (81)
|
Speech of children with CP and LFS, n (%)bc
|
|
|
Viking I
|
0 (0)
|
7 (19)
|
Viking II
|
4 (18)
|
12 (33)
|
Viking III
|
4 (18)
|
30 (83)
|
Viking IV
|
14 (64)
|
31 (86)
|
Number of children with a visual impairment
|
9 (41)
|
N/A
|
Caseload % composed of children with CP, LFS & CVId, n (%)e
|
|
|
Unknown
|
N/A
|
10 (29)
|
<10%
|
N/A
|
15 (43)
|
10 – 25 %
|
N/A
|
2 (6)
|
26 – 50 %
|
N/A
|
3 (9)
|
51 – 75 %
|
N/A
|
4 (11)
|
>75%
|
N/A
|
1 (3)
|
a N = 21; 1 caregiver missing data
b N (clinicians) = 36; 3 clinicians missing data
c Clinicians indicated all relevant age ranges, abilities of children with CP and LFS on caseload
d CVI = cortical visual impairment
e N = 35; 4 clinicians missing data
3.3 Experience with Language Comprehension Assessment
Most caregivers (Table 3) (n = 17; 77%) also reported that their child with CP and LFS had language comprehension assessment in the past but, of those who had experienced such an assessment, most indicated that they were at best only ‘somewhat confident’ in the results (n = 10, 63%). Nonetheless, most caregivers who had experienced language comprehension assessment (n = 14; 82%) indicated that it was ‘very important’ for clinicians to have an accurate understanding of a child’s language comprehension, the highest level on a 5-point descriptive scale. When asked to explain why it was important for clinicians to understand a child’s language comprehension (n = 14), caregiver responses frequently identified multiple reasons. For example, one caregiver stated:
How can they serve him best if they don’t know him very well? If you’ve spent time with him and know him well, you’ll understand what he’s saying. He has an opinion and needs to be involved in discussions and decisions.
From a caregiver perspective, accurate clinician understanding of language comprehension skills was deemed necessary to communicate effectively with these children (n = 7; 50%), understand children’s needs (n = 6; 43%), accurately describe children’s skills (n = 5; 36%) and empower and/or promote independence (n = 5; 36 %).
Most clinicians (Table 4) participated in language comprehension assessment (n = 26; 72%), suggesting a mean time for completion with children with CP and LFS of 3.4 hrs (SD = 2.4 hrs). Clinicians indicated that language comprehension assessments occurred across a variety of settings, but most often in schools (n = 17; 74%), clinics/hospitals (n = 14; 61%) or in children’s homes (n = 12; 52%). Language comprehension assessments completed as part of a
Table 3. Caregiver experience with language comprehension assessment.
Characteristic
|
Caregivers
|
Receiving rehabilitation services of any kind, n (%)
|
22 (100)
|
Physiotherapy
|
22 (100)
|
Occupational therapy
|
21 (95)
|
Speech-language pathology
|
18 (82)
|
Vision services
|
8 (36)
|
Recreation therapy
|
4 (18)
|
Psychology
|
3 (14)
|
Othera
|
5 (23)
|
Location of therapy, n (%)b
|
|
School
|
15 (68)
|
Pediatric therapy center
|
13 (59)
|
Private practice
|
12 (55)
|
Children’s hospital
|
11 (50)
|
Home
|
10 (45)
|
Community hospital
|
2 (9)
|
Otherc
|
2 (9)
|
Experienced language comprehension assessment, n (%)
|
17 (77)
|
Confidence in language comprehension assessment results, n (%)d
|
|
Not at all confident
|
1 (6)
|
Slightly confident
|
4 (25)
|
Somewhat confident
|
5 (31)
|
Fairly confident
|
6 (38)
|
Completely confident
|
0 (0)
|
Importance of accurate language comprehension results, n (%)e
|
|
Not at all important
|
0 (0)
|
Low importance
|
0 (0)
|
Neutral
|
1 (6)
|
Somewhat important
|
2 (12)
|
Very important
|
14 (82)
|
Reasons that accurate language comprehension results are important (n, %)f
|
|
Communicate effectively
|
7 (50)
|
Understand needs
|
6 (43)
|
Accurately describe abilities
|
5 (36)
|
Empower/promote independence
|
5 (36)
|
Set realistic goals/challenges
|
4 (29)
|
Support social/emotional connections
|
3 (21)
|
a Other included conductive education, applied behavioural analysis, augmentative communication, hippotherapy
b Caregivers indicated all relevant locations
c Other included March of Dimes
d N = 16, 1 caregiver whose child experienced language comprehension assessment missing data
e N = 17, all caregivers whose child experienced language comprehension assessment rated importance
f N = 14, 3 caregivers whose child experienced language comprehension assessment missing data, caregiver comments may have included multiple reasons for importance
Table 4. Clinician experience with language comprehension assessment for children with CP and LFS.
Characteristic
|
Clinicians
|
Involved in language comprehension assessment, n (%)a
|
26 (72)
|
Time to complete language comprehension assessment (hrs), mean (SD)b
|
3.4 (2.4)
|
Location of language comprehension assessment, n (%)c
|
|
School
|
17 (74)
|
Clinic/hospital
|
14 (61)
|
Home
|
12 (52)
|
Childcare
|
8 (35)
|
Otherd
|
2 (9)
|
Assessments completed as part of a team with other disciplines, n (%)e
|
|
None
|
2 (8)
|
<10%
|
3 (13)
|
10 – 25%
|
3 (13)
|
26 – 50%
|
3 (13)
|
51 – 75%
|
2 (8)
|
>75%
|
11 (46)
|
Strategies to improve confidence in language comprehension assessment, n (%)f
|
|
Population specific test/testing procedures
|
3 (75)
|
Population specific norms
|
2 (50)
|
Methods for confirming child’s ability to participate
|
2 (50)
|
a N = 36; 3 clinicians missing data
b N = 19; mean and SD calculated by taking an average between the end points of reported range of time; one clinician who participated in language assessment missing data, 4 clinicians who participated in language assessment indicated that assessment was ongoing
c N = 23; 3 clinicians who participated in language comprehension assessment missing data; clinicians indicated all relevant locations
d Other included alternate education settings, group homes, adult day programs, sheltered workshops, community outings
e N = 24; 2 clinicians who participated in language comprehension assessment missing data
f N = 4; 22 clinicians who participated in language comprehension assessment missing data, clinician comments may have included multiple reasons for importance
team with other professional disciplines were common, occurring in greater than 75% of all assessments for many clinicians (n = 11; 46%).
The vast majority of clinicians who participated in language comprehension assessments used informal tools to determine the abilities of children with CP and LFS, including clinical observation (n = 26, 100%), parent/caregiver interview (n = 26; 100%) and informal questions/directions (n = 25; 96%). Fewer (n = 9; 35%) used formal tools including traditional and modified standardized/norm referenced and criterion referenced tests (Table 5). According to ratings for frequency of use using a 4-point scale (1 = Rarely, 4 = Always), clinicians most often
Table 5. Tools used by clinicians involved in language comprehension assessment.
Tool/Method
|
In Use
n (%)a
|
Frequencyb
Mode Rating (Range)
|
Confidencec
Mode Rating (Range)
|
Importanced
Mode Rating (Range)
|
Clinical observatione
|
26 (100)
|
4 (3 – 4)
|
4 (2 – 4)
|
5 (2 – 5)
|
Parent/caregiver interviewf
|
26 (100)
|
4 (3 - 4)
|
4 (2 – 4)
|
5 (2 – 5)
|
Informal questions/directionsgh
|
25 (96)
|
4 (2 – 4)
|
3 (1 – 4)
|
4 (2 – 5)
|
Traditional standardized/norm referenced tests
|
9 (35)
|
2 (1 – 5)
|
2 (1 – 4)
|
2 (2 – 5)
|
Modified standardized/norm referenced testsij
|
9 (35)
|
2 (1 – 5)
|
2 (2 – 4 )
|
4 (2 – 5)
|
Traditional/modified criterion referenced testsk
|
9 (35)
|
2 (2 – 4)
|
2 (1 – 4)
|
3 (2 – 5)
|
Otherl
|
5 (19)
|
4 (2 – 4)
|
3 (2 – 4)
|
4 (3 – 5)
|
Language comprehension never/ rarely directly assessed
|
3 (12)
|
N/A
|
N/A
|
N/A
|
a N = 26; only clinicians who indicated involvement in language comprehension assessments rated tools
b Frequency rated on a 4-point descriptive Likert scale: 1 = rarely, 2 = occasionally, 3 = often, 4 = always, 5 = unsure
c Confidence rated on a 5-point descriptive Likert scale: 1 = not at all confident, 2 = slightly confident, 3 = somewhat confident, 4 = fairly confident, 5 = extremely confident
d Importance rated on a 5-point descriptive Likert scale: 1 = very unimportant, 2 = unimportant, 3 = neutral, 4 = important, 5 = very important
e N = 25; 1 clinician who indicated using clinical observation missing data
f N = 25; 1 clinician who indicated using parent/caregiver interview missing data
g N (frequency and confidence) = 24; 1 clinician who indicated using informal questions/directions missing data
h N (importance) = 23; 2 clinicians who indicated using informal questions/directions missing data
i N = 8; 1 clinician who indicated using modified standardized/norm referenced tests missing data
k Included self-developed tests
l Other included AAC specific assessments including the Dynamic AAC Goals Grid, Accessible Literacy Learning, Communication Matrix, dynamic teaching, screening apps
selected ‘always’ (Mode = 4; Range = 2 – 4) for all informal tools and ‘occasional’ (Mode = 2; Range = 1 – 5) for all formal tools. When rating their confidence in assessment results using the various assessment methods (5-point scale; 1 = not at all confident, 5 = extremely confident) and the importance of assessment results for informing their intervention approach (5-point scale, 1 = very unimportant, 5 = very important), clinicians were most often ‘fairly confident’ (Mode = 4; Range = 2 – 4) in the results of clinical observation and parent/caregiver interviews, both of which were most commonly rated as ‘very important’ (Mode = 5; Range = 2 – 5). Clinicians who used informal questions/directions most often considered these tools ‘important’ (Mode = 4; Range = 2 – 5) and most commonly indicated feeling ‘somewhat confident’ (Mode = 3; Range = 1 – 4) in the results. Clinicians most often indicated feeling only ‘slightly confident’ (Mode = 2; Range = 1 – 4) in the results of all formal tools. Of formal tools, only modified standardized/norm referenced tests were rated ‘important’ (Mode = 4; Range = 2 – 5). Traditional standardized/norm referenced tests were most often rated ‘unimportant’ (Mode = 2; Range = 2 – 5) while traditional/modified criterion referenced tests were most often considered of ‘neutral’ importance (Mode = 3; Range = 2 – 5). Four clinicians entered comments when asked what would increase their confidence in the accuracy of their current language comprehension assessment approaches (n = 4; 15%). Identified strategies included access to a population specific test and/or testing procedures (n = 3; 75%), population specific normative data (n = 2; 50%), and methods for confirming a child’s ability to participate in assessment (n = 2; 50%) (Table 4).
3.4 Perceptions of the C-BiLLT-CAN
Caregivers with experience in language comprehension assessment were asked to respond to questions about the C-BiLLT-CAN. The mode rating by responding caregivers (n = 16; 73%) of the magnitude of impact that access to the C-BiLLT-CAN would have on their child with CP and LFS was 5 (5-point scale, 1= no effect, 5 = a major effect). Caregivers rated the C-BiLLT-CAN as impacting activities at home, school/daycare, medical appointments, community, and rehabilitation services ‘to a great extent’ (Table 6). When asked to describe the impact of access to the C-BiLLT-CAN on their child with CP and LFS across environments (n = 11; 50%), comments from over half of the responding caregivers referenced improved communication/interactions (n = 10, 91%), improved participation/independence (n = 8, 73%),
Table 6. Perceptions of the C-BiLLT.
Characteristic
|
Caregivers
|
Clinicians
|
Magnitude of impact across environments, mode rating (range)ab
|
|
|
Home
|
5 (1 – 5)
|
N/A
|
School/daycare
|
5 (1 – 5)
|
N/A
|
Medical appointments
|
5 (1 – 5)
|
N/A
|
Community
|
5 (1 – 5)
|
N/A
|
Rehabilitation services
|
5 (1 – 5)
|
N/A
|
Otherc
|
1 (1 – 1)
|
N/A
|
Description of impact across environments, n (%)d
|
|
|
Improved communication/interaction
|
10 (91)
|
N/A
|
Improved participation/independence
|
8 (73)
|
N/A
|
Improved services
|
7 (64)
|
N/A
|
More accurate understanding of child’s abilities
|
7 (64)
|
N/A
|
Reduced frustration
|
2 (18)
|
N/A
|
Magnitude of effect on clinical practice, n (%)e
|
|
|
No effect
|
N/A
|
1 (5)
|
Minor effect
|
N/A
|
0 (0)
|
Neutral
|
N/A
|
4 (19)
|
Moderate effect
|
N/A
|
7 (33)
|
Major effect
|
N/A
|
8 (38)
|
Presence of impact on families served, n (%)f
|
|
|
Yes
|
N/A
|
19 (95)
|
No
|
N/A
|
1 (5)
|
Benefits and limitations, n (%)g
|
|
|
Improve language comprehension assessment results
|
N/A
|
18 (95)
|
Improved interventions and outcomes
|
N/A
|
14 (74)
|
Improve language comprehension assessment procedures
|
N/A
|
8 (42)
|
Accessibility concerns
|
N/A
|
7 (37)
|
Support information sharing between team members
|
N/A
|
4 (21)
|
Measure change in language comprehension over time
|
N/A
|
4 (21)
|
Negative impact of results
|
N/A
|
2 (11)
|
a Magnitude of effect rated on a 5-point descriptive Likert scale: 1 = not at all, 2 = to a small extent, 3 = to some extent, 4 = to a moderate extent, 5 = to a great extent
b N = 16; 6 caregivers missing data with the exception of Other
c N = 5; only 5 caregivers rated Other, 4 caregivers did not specify Other, 1 caregiver specified travel destinations
d N = 11; 5 caregivers who rated magnitude of impact across environments did not describe impact in qualitative comments, caregiver comments may have described multiple impacts
e N = 21; 5 clinicians who participated in language comprehension assessment missing data
f N = 20; 1 clinician who rated the magnitude of effect on clinical practice missing data
g N = 19; 2 clinicians who rated the magnitude of effect on clinical practice missing data; clinician comments may have included multiple benefits and/or limitations
improved services (n = 7, 64%), and a more accurate understanding of their child’s abilities (n = 7, 64%). One caregiver captured these themes by stating:
The medical staff spend such a limited amount of time with my child and are forced to assess his needs in that short moment. I often feel like they really aren't listening to what I relay and are more focused on their immediate observations in the moment, so if there was a tool available that could help my son express his own needs this would be life changing!
After learning about the C-BiLLT-CAN, most responding clinicians (n = 15; 71%) indicated that the tool would have at least a moderate effect on clinical practice while the vast majority (n = 19; 95%) anticipated an impact on the families receiving services (Table 6). From qualitative clinician descriptions (n = 19; 90%) of the potential effect of the C-BiLLT-CAN on practice, how they would use C-BiLLT-CAN results, and the impact the C-BiLLT-CAN would have on families, the most common benefits of the C-BiLLT-CAN were its potential to improve the results of language comprehension assessment (n = 18; 95%), the interventions or outcomes emerging from language comprehension assessment (n = 14; 74%), and/or the procedures for language comprehension assessment (n = 8; 42%). Clinicians expressed that the C-BiLLT-CAN could improve language comprehension assessment results by providing access to a standardized tool and/or a more accurate representation of a child’s true abilities compared to currently used approaches. For example, one clinician stated, “I would have a reliable and valid way to measure the language comprehension skills of children with CP on my caseload.” Clinicians postulated that results from the C-BiLLT-CAN could improve interventions and outcomes for children with CP and LFS by informing the design of AAC systems, supporting appropriate goal setting, and guiding the use of effective interaction strategies. For example, one clinician wrote:
It would enable decisions to be made about vocabulary that would be at the right level for the child from the beginning rather than the current "hypothesis testing" approach, which is more trial and error. The C-BiLLT-CAN results could also influence the level of curriculum material in schools, the access to the right kind of literature and math and the AAC programming to support participation at the right curriculum level.
Clinician-identified ways that the C-BiLLT-CAN could improve language comprehension assessment procedures included increasing efficiency of the assessment process and expanding the breadth of tools and response methods available for measuring language comprehension in children with CP an LFS. For example, one clinician suggested that the C-BiLLT-CAN “would provide valuable information in addition to current tools that we use (informal observation; TASP [Test of Aided-Communication Symbol Performance]; AAC evaluation genie app, etc.)” and also stated that “having the ability to use multiple access methods is particularly exciting”. Clinicians also noted the potential to support information sharing between team members (n = 4; 21%) and to measure change in language comprehension abilities over time (n = 4; 21%) as potential benefits of the C-BiLLT-CAN.
The most common limitation of the C-BiLLT-CAN identified by clinicians’ optional qualitative comments was accessibility concerns (n = 7; 37%). These concerns included the cost of the tool and/or required equipment, confusion regarding the tool’s customization capabilities for children with a variety of abilities and the need for a prerequisite age, cognitive ability, and/or proficiency with a compatible response method. One clinician noted that the “client would need to be experienced and competent using the adapted access method prior to introducing C-BiLLT-CAN,” while another summarized several of these concerns by writing: “Can parents participate by providing translations if the therapist does not know child’s language? Hard to tell from the video if images are suitable for wide range of ages, and I don't know if [there is an] option for high contrast images.” Clinicians also expressed concern about the possibility of a negative impact of C-BiLLT-CAN results (n = 2; 11%) on children with CP and LFS and their families if these were surprising to families and/or were misinterpreted. For example, one clinician stated “I think it could be very disheartening for families to have this kind of information about their child if the results were less than what they expected” while another wrote “I would caution use of negative results [i.e., results that do not align with parent beliefs/expectations of a child’s abilities] because the physical access demands or other variables may be limiting performance versus showing competence.”
3.5 Required Response Methods for C-BiLLT-CAN Participation
Just over half of responding clinicians involved in language comprehension assessment (n = 12; 57%) indicated sufficiency of current C-BiLLT-CAN response methods for children with CP and LFS on their caseloads (Table 7). In addition to eye gaze (n = 8; 89%) and touch screen (n = 7; 78%), both currently fully supported, those indicating insufficiency or uncertainty (n = 9; 43%) considered auditory access (i.e., access by listening) (n = 8; 89%), mechanical switch including joystick (n = 8; 89%), contact access (i.e., access by gently touching a sensor
or pad) (n = 6; 67%), and orofacial access (i.e., access using the mouth or face muscles) (n = 6; 67%) necessary for children with CP and LFS to complete the C-BiLLT-CAN. In addition to touch screen (n = 12; 63%) and eye gaze (n = 9; 47%), caregivers considered mechanical switch including joystick (n =10; 57%), auditory access (n = 9; 47%), contact access (n = 8; 42%), brain-computer interface (n = 5; 26%), and vocalization or humming based access (n = 5; 26%) necessary for successful completion of the C-BiLLT-CAN for their children with CP and LFS.
For responding caregivers, the five most important response methods not currently incorporated into the C-BiLLT-CAN according to the mode rating on a 10-point ordinal scale
Table 7. Required response methods for participation in the C-BiLLT.
Characteristic
|
Caregivers
|
Clinicians
|
Sufficiency of current C-BiLLT response methods, n (%)a
|
|
|
Yes
|
N/A
|
12 (57)
|
No
|
N/A
|
4 (19)
|
Unsure
|
N/A
|
5 (24)
|
Response method required to complete the C-BiLLT, n (%)bc
|
|
|
Touch Screen
|
12 (63)
|
7 (78)
|
Mechanical switch (including joystick)
|
10 (57)
|
8 (89)
|
Auditory access
|
9 (47)
|
8 (89)
|
Eye gaze
|
9 (47)
|
8 (89)
|
Contact access
|
8 (42)
|
6 (67)
|
Brain-computer interface
|
5 (26)
|
3 (33)
|
Vocalization or humming based access
|
5 (26)
|
5 (56)
|
Orofacial access
|
4 (21)
|
6 (67)
|
Electro- or mechanomyography
|
1 (5)
|
2 (22)
|
Otherd
|
2 (11)
|
3 (33)
|
Importance of response method, mode ranking (range)e
|
|
|
Touch Screen
|
6 (3 – 10)f
|
10 (1 – 10)
|
Mechanical switch (including joystick)
|
8 (3 – 10)f
|
8 (2 – 10)
|
Auditory access
|
10 (2 – 10)f
|
7 (3 – 10)
|
Eye gaze
|
10 (2 – 10)g
|
9 (4 – 10)
|
Contact access
|
8 (2 -10)f
|
7 (1 – 10)
|
Brain-computer interface
|
5 (1 – 9)h
|
2 (1 – 10)i
|
Vocalization or humming based access
|
4 (2 – 10)f
|
5 (1 – 8)
|
Orofacial access
|
5 (1 – 8)f
|
4 (2 – 9)i
|
Electro- or mechanomyography
|
2 (1 – 6)h
|
3 (1 – 8)
|
Other
|
1 (1 – 9)f
|
1 (1 -10)i
|
a N = 21, 5 clinicians who participated in language comprehension assessment missing data
b N (caregivers) =19, 3 caregivers missing data
c N (clinicians) = 9, Only clinicians who indicated ‘No’ or ‘Unsure’ when asked if current C-BiLLT response methods were sufficient were asked to indicate required response methods
d Other included partner-assisted scanning, language translation, headmouse, key guard, dwell time, head pointer/stylus, visual access modifications, trackball
e All response methods assigned an ordinal ranking of importance on a 10-point scale with 1 = least important and 10 = most important
f N = 17, 5 caregivers missing data
g N = 16, 6 caregivers missing data
h N = 18, 4 caregivers missing data
i N = 20, 1 clinician who rated importance of response methods missing data
were auditory access (Mode = 10; Range = 2 – 10), contact access (Mode = 8; Range = 2 – 10), mechanical switch including joystick (Mode = 8; Range = 3 – 10), brain-computer interface
(Mode = 5; Range = 1-9), and orofacial access (Mode = 5; Range = 1 – 8). For responding clinicians, the five most important response methods not currently incorporated into the C-BiLLT-CAN according to the mode rating were mechanical switch including joystick (Mode = 8; Range = 2 – 10), auditory access (Mode = 7, Range = 3 – 10), contact access (Mode = 7; Range = 1 – 10), vocalization or humming based access (Mode = 5; Range 1 – 8), and orofacial access (Mode = 4; Range = 2 – 9).