1. technology and computing

Infants & Young Children
Vol. 23, No. 3, pp. 169–183
c 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins
Copyright Young Children With
Physical Disabilities
Caregiver Perspectives About
Assistive Technology
Adria Kling, OTR/L; Philippa H. Campbell, PhD;
Jeanne Wilcox, PhD
Caregiver reports of problematic activities/routines with their young children with physical disabilities and types of assistive technology used as solutions were investigated in this study. In
addition, caregiver competence with assistive technology use and ways in which caregivers received information and training were also examined. A subset of 164 caregivers who identified
their children as having physical disabilities was retrieved from an archived database and used for
analysis. Results indicated that children experienced various problems when participating in daily
activities/routines. An average of 60.4% of their caregivers found solutions to these problems and
64.5% of these solutions involved the use of assistive technology. Only a small percent (13.4%) of
caregivers reported feeling very competent at using assistive technology and 68.2% of those had
received information from an early intervention provider. This research exemplifies the importance of both using assistive technology interventions for children with physical disabilities and
ensuring that early intervention providers are sufficiently knowledgeable to train caregivers so that
their children gain maximal opportunities to participate and learn. Key words: assistive devices,
assistive technology, caregiver, cerebral palsy, early intervention, physical disabilities
A
SSISTIVE TECHNOLOGY has the potential to enhance the lives of all people, including infants and toddlers with disabilities,
by providing the means to actively participate
in daily activities/routines. The barriers to active participation that are often present may
be circumvented by assistive technology, allowing young children to explore, learn, and
play within their natural environments (Mistrett, 2001; Sullivan & Lewis, 2000). When
assistive technology is used as an intervention and incorporated into a child’s natural environment, learning opportunities that were
previously unavailable will emerge, encourag-
Author Affiliation: Thomas Jefferson University,
Philadelphia, Pennsylvania (Ms Kling and
Dr Campbell); and Arizona State University, Tempe
(Dr Wilcox).
Corresponding Author: Adria Kling, OTR/L, Thomas
Jefferson University, 130 South 9th St, Ste 500, Philadelphia, PA 19107 ([email protected]).
ing the child’s active engagement with both
the physical environment and the children,
parents, and other adults within that environment (Langone, Malone, & Kinsley, 1999).
The increased learning opportunities afforded
through assistive technology support children’s growth and development, promote the
acquisition of new skills, and foster independence (Mistrett, 2001; Weintraub & Wilcox,
2006). The use of assistive technology may
also allow for more efficient and effective
caregiving even for children with severe and
profound disabilities (Daniels, Sparling, Reilly,
& Humphry, 1995).
Assistive technology is defined as “any
item, piece of equipment, or product system,
whether acquired commercially off the shelf,
modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities” (IDEA,
2004). This definition includes both low-tech
and high-tech devices. Low-tech items tend
to be more readily available and of lower
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cost and are generally used by all young children, such as bath seats, Velcro, and adaptive spoons and bowls. In contrast, high-tech
items are typically more specialized, difficult
to obtain, complex, and costly. These include
items such as computerized devices, alternative and augmentative communication, and
powered wheelchairs (Campbell, Milbourne,
Dugan, & Wilcox, 2006).
CEREBRAL PALSY AND
PHYSICAL DISABILITIES
Infants and toddlers with cerebral palsy and
other physical disabilities often experience
difficulties participating in their daily activities/routines due to impairments in mobility
and positioning as well as other neurological limitations (Chung et al., 2008). A wide
range of environmental modifications may be
used with these children to support participation including adaptations to the environment
and assistive technology devices (Østensjø,
Carlberg, & Vøllestad, 2005). In interviews
with 204 parents of children of all ages with a
neurological diagnosis (89% were diagnosed
with cerebral palsy), 77% of the parents reported that technical aids lightened the caregiver’s burden and promoted the child’s independence (Korpela, Seppänen, & Koivikko,
1992). In a second study where 95 children
with cerebral palsy were assessed and their
caregivers were interviewed, assistive technology was reported as having a large effect
on mobility, self-care, and social functioning
(Østensjø et al., 2005).
UNDERUTILIZATION OF
ASSISTIVE TECHNOLOGY
Assistive technology is underutilized with
children receiving early intervention services
despite the legislative mandates and research supporting its use (Dugan, Campbell,
& Wilcox, 2006; Judge, Floyd, & Wood-Fields,
2010; Long, Woolverton, Perry, & Thomas,
2007; Wilcox, Dugan, Campbell, & Guimond,
2006). Reports concerning both the extent of,
and reasons for, underuse are conflicting and
suggest many potential reasons to account for
underuse ranging from cost/funding, parents’
unwillingness to accept the device, insufficient emphasis on training about assistive
technology for both parents and providers,
and provider biases to work on typical
skill development (Campbell, Milbourne, &
Wilcox, 2008; Kemp & Parette, 2000; Lahm
& Sizemore, 2002). In addition, reports suggest that because caregivers are unlikely to
receive training, device use may not be well
integrated into naturally occurring activities/
routines, and situations may be inadvertently
created, where caregivers view the devices
as a burden and abandon them (Lesar,
1998; Parette, VanBiervliet, & Hourcade,
2000). However, underutilization has not
been reported in other studies where caregivers (Cardon, Wilcox, & Campbell, in press;
Wilcox, Dugan, et al., 2006) and early intervention providers (Wilcox, Guidmond, Campbell, & Weintraub, 2006) were asked questions in surveys about their use of assistive
technology. For example, 55% of the
providers who completed an online survey regarding their knowledge, beliefs, and
practices reported using assistive technology
with infants and toddlers.
COMPETENCY WHEN USING
ASSISTIVE TECHNOLOGY
Psychologist Albert Bandura referred to
“self-efficacy” as a belief in one’s ability to
successfully perform a specific behavior (Bandura, 1989, as cited in Weintraub & Wilcox,
2006). Self-efficacy, or confidence, tends
to increase with training and experience
according to Weintraub & Wilcox (2006),
who studied the confidence levels of early
intervention providers at using assistive technology with infants and toddlers. Training and
experience, such as workshops or on-the-job
training experiences, had the greatest influence on providers’ confidence. Few studies
of caregiver confidence when using assistive
technology with very young children have
been conducted; however, on the basis of
these findings and Bandura’s theory, it would
be expected that caregiver competence
would also increase with more training and
Caregiver Perspectives on Assistive Technology
experience. For example, in a study where
caregivers of children with autism were
asked about competence, few caregivers
(6.9%) felt very competent when using
assistive technology with their children and
17.2% reported being not at all competent.
These caregivers were most likely to receive
information and training about assistive
technology from other parents or by using
trial-and-error tactics as opposed to receiving
it from early intervention providers (Cardon
et al., in press). Similarly, in telephone interviews with caregivers whose children were
using assistive technology, the majority of
respondents reported learning about devices
through friends and families (Wilcox, Dugan,
et al., 2006).
RESEARCH OBJECTIVES
The extent to which caregivers of young
children report competence in using assistive
technology with their children and the ways
in which they learn about assistive technology varies across studies. Yet the use of assistive technology impacts in major ways on
young children with physical disabilities’ performance in activities/routines. The purpose
of this research was to investigate the perspectives of caregivers of children with physical disabilities about their daily activities/
routines and the use of assistive technology.
Specifically, the research was designed to
• examine which activities/routines are
most problematic for these children;
• determine to what extent caregivers find
solutions to their problems and to what
degree assistive technology is used as a solution;
• identify the amount of information and
training caregivers receive about assistive
technology and the sources of that information; and
• examine the impact of these factors on
caregiver-reported competence levels.
METHODS
An archival database of caregiver responses
to a Tots ‘N Tech Research Institute (http://
171
tnt.asu.edu) Web-based survey served as the
data source. A total of 549 nationally distributed caregivers of infants or toddlers with
disabilities responded anonymously to questions focused on their use of assistive technology within their daily activities/routines.
Survey
The survey consisted of a combination of
forced choice and open-ended questions related to 10 activities/routines in which infants
and toddlers typically participate. These included bath time, morning routine, evening
routine, mealtime, play, physical activities,
leaving the house, running errands, family
outings, and family chores. Caregivers were
asked whether there was ever a time their
child was unable to fully participate in the
activity/routine. If the caregivers reported
“yes,” they were asked a sequence of questions regarding solutions to the problem.
They were asked whether they were able to
find a solution, and if so, did it include assistive technology (yes/no). They were then
asked to describe the solution in an openended format so that both assistive technology and non–assistive technology solutions
were described. Definitions of assistive technology were not provided for the respondents. For each activity/routine, caregivers
were also asked how they found out about the
solution and what type of information or training they had received about its implementation. After responding to these questions for
each activity/routine, caregivers were asked
general questions regarding the use of assistive technology with their children, including how much information and training they
had received, the ways it had been received,
and how competent they felt at using assistive
technology.
Two of the survey questions were openended and responses were coded into different categories. For the first question, caregivers were asked to describe the problem
within each activity/routine. Responses were
coded into the following categories: (a) Motor Disability or Significant Delay: Child
has motor disability or motor delay that
impacts on performance of the particular
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INFANTS & YOUNG CHILDREN/JULY–SEPTEMBER 2010
activity/routine (eg, “child with cerebral
palsy cannot sit up in tub due to tone”);
(b) Motor Inability: Child cannot perform the
activity/routine or participate because of motor skill limitations that are not linked with
the motor disability or significant delay in motor skills (eg, “child unable to open hands to
use wash cloth to wash face”); (c) Positioning: Child’s positioning during the activity/
routine is the primary issue identified; (d)
Independence/Self-Help: Includes activities/
routines such as bathing, dressing, and play
(eg, “child afraid to ride bike alone”); (e) Eating: Includes general problems with eating
such as chewing, swallowing, and self-feeding
as well as issues related to learning to eat independently (eg, “using silverware appropriately”) and oral motor situations (eg, “child
cannot swallow without gagging”); (f) Problems With Behavior: Primary issue relates to
behavior and includes negative or uncooperative behavior related to sensory processing
problems; (g) Problems With Communication: Child is unable to talk or vocalize, socialize with others, listen, understand, or follow directions; and (h) Other: Child’s diagnosis is stated as the problem, problem does
not fit the previous categories, or there is
not enough information provided to code the
statement.
In the second open-ended question, caregivers described how they had solved a reported problem within an activity or routine. The open-ended responses were coded
into the following categories: (a) grips, mats,
Velcro, duct tape, bath mats, or grips to use
in securing objects; (b) pictures to illustrate
steps in a routine, daily schedule, or labeling
of items related to a schedule or routine; (c)
communication aids such as pictures, PECS,
picture boards, or single or few choice devices such as Big Mac or cheap talk; (d) child
positioning devices (low-tech) such as bath
seats, strollers, pillows, stools, bean bags, and
towels; (e) eating utensils such as sippy cups,
bent spoon, deep dishes, or items used to hold
utensils and tableware in place; (f) personal
care items for dressing, bathing, etc, such as
adapted clothing, vibrating toothbrushes, and
elastic shoelaces; (g) mobility devices such as
push walker toys, strollers, and riding vehicles; (h) play items such as switch operated
toys or specially selected materials to address
the child’s interests/abilities; (i) customized
positioning or mobility equipment (fabricated
to address individual child needs or purchased
from an equipment vendor); (j) other: lowtech device or adaptation that does not fit
previous categories; and (k) high-tech devices
such as computers and assistive listening devices.
Frequency counts for the demographic information and to determine the percentage of
caregiver responses for each survey question
were obtained. Chi-square and ANOVA analyses were also conducted to measure distribution and variance, respectively.
Participants
A subset of 164 caregivers who described
their children as having a physical disability or
cerebral palsy was extracted from the larger
database and used as the sample for addressing the research questions for this study. The
characteristics of the caregivers are outlined
on Table 1. A majority of the sample comprised of white mothers with college educations who lived in 2-parent households. Income was reported as distributed across all
categories. The children’s average age was
26 months. Approximately half of the children were male. Cerebral palsy was selected
as the category to describe the child’s disability by 54 caregivers, 121 identified the child
as having a physical disability, and 11 checked
both categories. These 3 response categories
were combined into 1 category of 164 children with physical disabilities.
RESULTS
Responses from the archived database were
analyzed to gain a clearer understanding of the
perspectives of caregivers of children with
physical disabilities regarding their daily activities/routines and the use of assistive technology. Responses were used to identify the types
Caregiver Perspectives on Assistive Technology
Table 1. Demographic Characteristics of
Caregivers
Caregiver
Characteristics
Person reporting
Mother
Father
Grandmother
Grandfather
Sister
Brother
Household structure
Two-parent
One-parent
Household income
Under $15 000
$15 000–29 999
$30 000–49 999
$50 000–74 999
$75 000–99 999
$100 000+
Did not report
Race/ethnicity
White
African-American
Asian/Pacific Islander
Hispanic/Latino
Native American
Multiracial
Education
Less than high school
High school/GED
Some college
Associates degree
College/university degree
Graduate school degree
Community setting
Urban/large city
Suburban
Rural
Did not report
Percentage of
All Caregivers
(n = 164)
68.9
25.0
3.7
1.2
0.6
0.6
83.5
16.5
4.3
14.6
28.0
24.4
17.1
6.7
4.9
68.9
7.3
12.8
4.3
1.8
4.9
2.4
15.9
20.1
10.4
40.2
11.0
23.8
50.3
25.6
0.3
of problems affecting the child’s participation
in activities/routines and the extent to which
caregivers found solutions to these problems.
The data were also used to examine whether
caregivers used assistive technology as a solution, ways they learned about assistive tech-
173
Table 2. Caregiver Perspectives on Problems
Within Activities and Routines
Routine
Bath time
Morning routine
Evening routine
Mealtime
Play
Leaving the house
Running errands
Family routines
Physical activities
Family outings
Problem Count, %
(Count)
17.4 (128)
14.4 (106)
9.2 (68)
13.3 (98)
9.0 (66)
6.7 (49)
5.6 (41)
7.2 (53)
11.7 (86)
5.6 (41)
nology, and their perceived level of competence at using assistive technology.
Caregivers’ perceptions about daily
activities and routines
Caregivers were asked to indicate activities/
routines in which their child was unable to
participate and to describe the problem that
prevented their participation. Table 2 illustrates that bath time was the most problematic routine with 17.4% of caregivers reporting a problem within this routine. Morning
routine (14.4%), mealtime (13.3%), and physical activity (11.7%) were also among the
most problematic routines for infants and toddlers with a physical disability. Caregivers
were also asked to report the type of problem that inhibited their child’s participation
for each of the activities/routines reported
in Table 3. Overall, motor inabilities (30.1%)
and a lack of independence/self-help skills
(25.2%) were reported most frequently. Motor inabilities were reported as being most
problematic during play (62.2%) and physical activities (57.7%). This category included
problems such as not being able to reach
to play games or use arms to swim. A lack
of independence/self-help skills was reported
most problematic during morning (53.5%)
and family routines (57.5%) and included situations such as not brushing teeth or zippering
jacket independently.
a Full
29.6 (29)
25.6 (22)
15.5 (9)
7.9 (7)
62.2 (28)
43.6 (17)
44.4 (12)
12.5 (5)
57.7 (30)
36.7 (11)
30.1 (170)
4.1 (4)
8.1 (7)
1.7 (1)
1.1 (1)
8.9 (4)
5.1 (2)
22.2 (6)
7.5 (3)
11.5 (6)
6.7 (2)
6.4 (36)
Motor Inability
6.2 (35)
13.3 (4)
1.9 (1)
0
3.4 (3)
0
2.6 (1)
7.4 (2)
10.3 (6)
16.3 (16)
2.3 (2)
Positioning
25.2 (142)
0
5.8 (3)
57.5 (23)
1.1 (1)
11.1 (5)
28.2 (11)
0
37.9 (22)
31.6 (31)
53.5 (46)
Independence/
Self Help
titles and operational definitions can be found in the “Methods” section. Values represent % (count).
Bath time
Morning
Routine
Evening
Routine
Mealtime
Play
Leaving the house
Running
Errands
Family
Routines
Physical
Activities
Family
Outings
Total
Routine
Motor
Disability/
Delay
Table 3. Types of Problems Within Daily Activities and Routinesa
13.3 (75)
3.3 (1)
0
0
79.8 (71)
0
0
0
3.4 (2)
0
1.2 (1)
Eating/
Feeding
11.2 (63)
23.3 (7)
7.7 (4)
12.5 (5)
3.4 (3)
6.7 (3)
15.4 (6)
22.2 (6)
22.4 (13)
12.2 (12)
4.7 (4)
Behavior
2.5 (14)
3.3 (1)
1.9 (1)
7.5 (3)
1.1 (1)
8.9 (4)
2.6 (1)
0
1.7 (1)
2.0 (2)
0
Communication
5.1 (29)
13.3 (4)
13.5 (7)
2.5 (1)
2.2 (2)
2.2 (1)
2.6 (1)
3.7 (1)
6.9 (4)
4.1 (4)
4.7 (4)
Other
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INFANTS & YOUNG CHILDREN/JULY–SEPTEMBER 2010
Caregiver Perspectives on Assistive Technology
175
Table 4. Caregiver Reports of Solutions to Problems, the Use of AT, and Actual Use of ATa
Routine
Solution Count
Caregiver Reports Use of AT
Actual Use of AT
Bath time
Morning routine
Evening routine
Mealtime
Play
Leaving the house
Running errands
Family routines
Physical activities
Family outings
Totals
71.9 (92/128)
56.2 (59/105)
60.3 (41/68)
62.2 (61/98)
61.2 (41/67)
53.1 (26/49)
65.9 (27/41)
43.4 (23/53)
58.6 (51/87)
58.5 (24/41)
60.4 (445/737)
66.3 (61/92)
57.6 (34/59)
61.0 (25/41)
75.4 (46/61)
56.1 (23/41)
69.2 (18/26)
70.4 (19/27)
78.3 (18/23)
58.8 (30/51)
54.2 (13/24)
64.5 (287/445)
47.6 (39/82b )
38.9 (21/54b )
48.6 (18/37b )
57.5 (31/54b )
44.4 (16/36b )
60.8 (14/23b )
56.6 (13/23b )
68.5 (13/19b )
42.6 (20/47b )
45.5 (10/22b )
49.1 (195/397)
Abbreviation: AT = assistive technology.
a Values represent % (count).
b Responses that could not be coded because of insufficient information or no description provided were omitted from
the calculation.
Solutions and use of assistive technology
Caregivers were asked whether they were
able to find a solution to their problem and,
if so, were asked whether the solution included assistive technology. Table 4 indicates
that overall, caregivers found solutions to
their problems 60.4% of the time and when
solutions were found, caregivers identified a
majority (64.5%) of these solutions as assistive technology. They were asked to provide
descriptions of all solutions (ie, all assistive
technology or non–assistive technology solutions). These descriptions of solutions were
coded by categories of types of assistive technology and, during the coding process, a number of the solutions identified as assistive technology by caregivers did not meet the assistive
technology coding categories. For example, 1
caregiver reported, “his sister washes his hair
when they take baths together.” Since this is
not considered assistive technology, a third
column was created in Table 4 to represent
the actual use of assistive technology (49.1%)
as determined by the coders (and not by the
caregivers’ categorizations).
The open-ended descriptions of solutions
were coded into 10 different categories that
are reported in Table 5. More than 45.1%
of the described solutions were positioning
devices, with 26.3% being classified as lowtech devices such as pillows, pool noodles,
or rolled towels and with 18.8% being categorized as customized positioning devices such
as wheelchairs and gait trainers. Personal care
items, such as a vibrating tooth brush or a hair
brush with a built-up handle, were also frequently reported (17.9%). Caregivers did not
report any instances in which high-tech devices had been used.
Amount and sources of information
and training
A general question was asked about ways
in which caregivers had received information
and training about assistive technology using
response options from a fixed choice list. A
total of 46% of the caregivers reported receiving information and training from an early intervention provider compared with 54% who
learned about assistive technology from more
than 6 different combined sources reported
in Table 6 (eg, lending library; expo or fair).
In addition, caregivers were also asked about
how they learned about assistive technology
for each specific activity/routine. For 7 of the
10 activities/routines, the early intervention
Grips/
Velcro
a Full
0
3.7 (1)
0
0
0
0
0
7.1 (1)
4.0 (1)
0
1.3 (3)
Pictures
0
7.4 (2)
0
0
0
0
0
7.1 (1)
0
16.7 (2)
2.2 (5)
56.6 (30)
11.1 (3)
16.7 (3)
9.7 (3)
17.6 (3)
7.7 (1)
35.7 (5)
21.4 (3)
28.0 (7)
8.3 (1)
26.3 (59)
9.4 (5)
11.1 (3)
11.1 (2)
6.5 (2)
41.2 (7)
53.8 (7)
35.7 (5)
14.3 (2)
20.0 (5)
33.3 (4)
18.8 (42)
Communication
LT
Custom
Aids
Positioning Positioning
titles and operational definitions can be found in ”Methods” section. Values represent % (count).
Bath time
3.8 (2)
Morning routine
0
Evening routine
0
Mealtime
0
Play
5.9 (1)
Leaving the house 0
Running errands
7.1 (1)
Family routines
0
Physical Activities 12.0 (3)
Family outings
0
Total
3.1 (7)
Routine
Table 5. Types of AT Reported by Caregiversa
0
0
0
77.4 (24)
0
0
0
7.1 (1)
0
0
11.2 (25)
Eating
Utensil
30.2 (16)
59.3 (16)
33.3 (6)
0
0
7.7 (1)
7.1 (1)
0
0
0
17.9 (40)
Personal
Care
0
3.7 (1)
27.8 (5)
3.2 (1)
0
0
7.1 (1)
7.1 (1)
8.0 (2)
41.7 (5)
7.1 (16)
Mobil.
0
0
0
0
23.5 (4)
0
0
0
12.0 (3)
0
3.1 (7)
Play
0
3.7 (1)
11.1 (2)
3.2 (1)
11.8 (2)
30.8 (4)
7.1 (1)
35.7 (5)
16.0 (4)
0
8.9 (20)
Other
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INFANTS & YOUNG CHILDREN/JULY–SEPTEMBER 2010
Caregiver Perspectives on Assistive Technology
Table 6. Caregivers Report on Ways They Received Information or Training About AT
Information/Training
Source
% (Count)
Formal workshops
Local expos/fairs
Local lending library
Program specific training
Early intervention personnel
provided information
Help from another parent
Other
11.7 (40)
8.2 (28)
12.3 (42)
4.4 (15)
46.0 (157)
15.5 (53)
1.8 (6)
provider was the primary source of caregivers’ information and training (Table 7).
Caregivers were asked to report how competent they felt about using adaptations or
assistive technology with their child using a
scale from “not at all” to “very” competent.
A total of 10.4% caregivers self-reported that
they were “not at all competent,” 51.2% reported that they were “competent in some situations but not in others,” 25.0% felt “overall,
somewhat competent in all areas,” and 13.4%
felt “very competent.”
Caregiver self-ratings of competency and
the general question about sources of information and training were analyzed using the χ 2
statistic to examine whether caregivers who
177
received more information and training were
more competent than those who received less
information and training. Results were significant for both the received amount of information [χ 2 (9, N = 164) = 58.85, P = .0001] and
training [χ 2 (9, N = 164) = 64.61, P = .0001]
indicating that these variables were related
to competence. Figure 1 indicates that caregivers who felt very competent received more
information (77.3% caregivers) and training
(45.5% caregivers) than those who were not
at all competent. None of the caregivers who
reported receiving a lot of information and
only 5.3% who reported receiving a lot of
training felt not at all competent. Chi-square
analyses were also used to examine competency and the source identified by caregivers
as the way in which they learned about assistive technology. Results were significant
[χ 2 (3, N = 164) = 9.69, P = .02], suggesting
that the source of information was related to
competence. Competency when information
and training were received from an early intervention provider was compared with competency when received from another source,
such as another parent, local expos or fairs,
a local lending library as represented in
Figure 2. Of the caregivers who reported being very competent, 68.2% had received information from an early intervention provider
and 31.8% received it from another source. Of
the caregivers who reported being not at all
Table 7. Caregivers Report Sources for AT Solutions for Specific Activities and Routinesa
Routine
Bath time
Morning routine
Evening routine
Mealtime
Play
Leaving the house
Running errands
Family routines
Physical activities
Family outings
a Values
EI Provider
Internet
Workshop
Friend/Family
Trial and Error
33.9 (41)
32.5 (25)
36.7 (18)
47.3 (35)
45.7 (21)
35.3 (12)
30.3 (10)
26.9 (7)
30.0 (20)
36.4 (12)
17.4 (21)
18.2 (14)
8.2 (4)
12.2 (9)
10.9 (5)
8.8 (3)
15.2 (5)
19.2 (5)
9.0 (6)
9.1 (3)
9.1 (11)
13.0 (10)
8.2 (4)
5.4 (4)
4.3 (2)
11.8 (4)
9.1 (3)
7.7 (2)
7.5 (5)
9.1 (3)
17.4 (21)
15.8 (12)
22.4 (11)
8.1 (6)
10.9 (5)
14.7 (5)
12.1 (4)
11.5 (3)
11.9 (8)
15.4 (5)
22.3 (27)
20.8 (16)
24.5 (12)
27.0 (20)
28.3 (13)
29.4 (10)
33.3 (11)
34.6 (9)
41.8 (28)
30.3 (10)
represent % (count).
178
INFANTS & YOUNG CHILDREN/JULY–SEPTEMBER 2010
100
Number of Caregivers (%)
90
80
70
60
Very competent
caregivers
50
Not competent
caregivers
40
30
20
10
0
A lot
Some
A little
None
A lot
Some
A little
None
Amount of information and training
Information
Training
Figure 1. Amount of information and training received and competency.
competent, only 23.5% had received information from an early intervention provider and
76.5% had received it from another source.
Caregivers’ report of finding solutions
and using assistive technology
A series of one-way ANOVAS was conducted to examine the relationship between
competency and solutions and competency
and assistive technology. A one-way betweensubjects ANOVA (with P value set to .10) compared the effect of number of times a solution
was found when caregivers identified themselves as not at all competent, competent in
some situations but not others, overall competent in all areas, and very competent. There
was a significant effect of reported compe-
Frequency (%)
100
80
60
40
20
0
EI provider
Other
Sources of AT
Not competent
Very competent
Figure 2. Sources of assistive technology and competency.
tence on success in finding a solution for the 4
competence levels (F3,152 = 2.66, P = .050).
Post hoc comparisons using the Tukey HSD
test indicated that the mean score for caregivers rating themselves as very competent
(M = 0.82, SD = 0.28) was significantly different from the mean score of caregivers
who rated themselves as not at all competent
(M = 0.51, SD = 0.32), P = .06. The mean
score of caregivers who rated themselves as
competent in some situations (M = 0.59,
SD = 0.38) was different from that of caregivers who rated themselves as overall competent (M = 0.61, SD = 0.28), P = .06. Significant differences were not found between the
other groups.
A one-way between-subjects ANOVA (with
P value set to .10) was conducted to compare the effect of reported competency on the
extent to which the identified solution was
assistive technology use. There was a significant effect of reported competence on success in finding a solution for the 4 competence levels (F3,152 = 7.98, P < .0001). Post
hoc comparisons using the Tukey HSD test
indicated that the mean score for caregivers
rating themselves as very competent (M =
0.68, SD = 0.33) was significantly different
from the mean score of caregivers who rated
Caregiver Perspectives on Assistive Technology
themselves as not at all competent (M = 0.17,
SD = 0.29), P = .00; somewhat competent
(M = 0.31, SD = 0.35), P = .00; and overall competent (M = 0.68, SD = 0.33), P =
.01. Significant differences were not found between the other groups.
DISCUSSION
Caregivers in this study reported that their
children faced barriers and obstacles throughout their day that prevented them from fully
participating in their daily activities/routines,
a finding that is consistent with other published reports (Chung et al., 2008; Korpela
et al., 1992; Mistrett, 2001; Østensjø et al.,
2005; Wilcox, Dugan, et al., 2006). Motor inabilities such as postural misalignment or positioning limitations were the most frequent
caregiver-reported problems but deficits in
self-help/independence were also frequently
reported. These barriers and obstacles such as
postural misalignment, positioning, and selfhelp/independence resulted in identification
of bath time, morning routine, mealtime, and
physical activities as the most problematic of
the listed activities/routines. These problem
activities/routines were similar to those reported by caregivers of children with autism
who also identified bath time and morning
routine as problems for their children and reported difficulties performing the task or doing it independently as main reasons why the
activity/routine was a problem (Cardon et al.,
in press).
Nearly half of the children with physical disabilities’ caregivers used some type of positioning device, including both low-tech items
and customized devices, a not surprising finding based on the types of problems these children commonly experience. Positioning devices allow children to maintain proper positioning and posture as well as provide trunk
support and stability to enable movement of
arms and legs, thereby promoting participation in a multitude of activities such as feeding or playing games (Chung et al., 2008).
Only 7% of caregivers reported using some
type of mobility device. The low use of mo-
179
bility devices may have been associated with
the young age of the study children and a
lack of priority for mobility due to children’s
ages. In addition, the children’s caregivers did
not report high numbers of communication
problems. Consistent with these low reports,
pictures and communication aids were rarely
used with these children.
Implications for early
intervention providers
Early intervention providers play instrumental roles in teaching caregivers about assistive technology use. The opportunities that
providers have to work directly with children
and caregivers within activities/routines contribute to caregivers’ feelings of competence
in using adaptation and assistive technology interventions with their children. When
providers and caregivers work together to use
assistive technology, caregivers report feeling competent particularly in identifying solutions for facilitating their children’s involvement in activities/routines and in using assistive technology to do so. The most competent
caregivers in this study reported receiving a
lot of information and training from their early
intervention providers, emphasizing the important role that early intervention providers
play as a source of information about assistive
technology for children’s caregivers.
Providers help families find solutions to
problem situations, first by learning that there
is a challenge being faced by caregivers and
second by working together to design and implement successful solutions. Although caregivers were successful in finding solutions for
60% of the situations they identified as problems, 40% of the reported problems remained
unsolved, indicating a need for providers to
help caregivers address all problems and to
be knowledgeable about a range of assistive
technology devices since these have been reported as successful solutions in this as well
as other research studies (Dugan et al., 2006;
Long et al., 2007; Wilcox, Guidmond, et al.,
2006).
Providers are also teachers of caregivers.
Once solutions are identified, providers can
180
INFANTS & YOUNG CHILDREN/JULY–SEPTEMBER 2010
teach caregivers how to successfully use
assistive technology within activities/
routines. Training includes ensuring that the
caregiver understands what the device is,
how to use it, why it is being used, or what
skills are being addressed. This training may
include demonstration, modeling, having the
caregiver practice, and offering feedback.
Since children are constantly growing and
developing, assessing the effectiveness of the
assistive technology in promoting the child’s
participation within an activity/routine is an
ongoing role of the provider. Making adaptations and modifications and even fabricating
simple devices are other roles for providers.
Caregivers need to feel supported so they are
able to feel confident when using assistive
technology with their children and so they
continue to use it in order to provide their
children with the maximum opportunities
to actively engage within their environments
(Judge, 2000).
Providing assistive technology devices and
services to children and their caregivers is a
process that extends further than simply suggesting particular devices. It is imperative that
caregivers be included in the assistive technology process from the beginning. Caregivers
must be considered part of the team and play
a major role in the assessment process by
providing essential information about their
children (Parette, VanBiervliet, & Hourcade,
2000). Providers can then present caregivers
with appropriate options and together make
a decision about what is best for the child.
It is important for providers to consider cultural and family values when selecting devices
in order to increase the likelihood the device
will be used and eliminate the possibility of
abandonment as much as possible (Parette &
Brotherson, 2004).
Competency and assistive
technology use
A majority of caregivers in this study reported feeling competent at using a device in
one situation but not others and only 13.4%
felt very competent across all situations. Caregivers with the highest levels of competency
were more likely to find solutions to their
problems, thereby promoting children’s participation in activities/routines; however, disappointingly, the percentage of caregivers reporting high competence was very low. That
caregivers who had received more training
and information felt more competent suggests that information and training activities
are 1 strategy to use to increase caregivers’
competency. A similar finding resulted when
measuring competency of early intervention
providers (Weintraub & Wilcox, 2006) where
the amount of training and experience with
assistive technology was related to increased
competency.
These implications are 2-fold. Results suggest that information and training from early
intervention providers increases both caregiver competence and successful use of
assistive technology as a solution to problems
encountered in their children’s activities/
routines. However, increased information and
training also contribute to providers’ competence and effectiveness in adequately supporting caregivers. When early intervention
providers do not or are unable to provide
caregivers with information and training, caregivers are not likely to learn about different assistive technologies or feel competent in using
them as solutions for children’s participation
in activities/routines.
Early intervention providers need to have
a lot of information and training about assistive technology because they are a primary source of information for caregivers.
Providers may not be receiving enough information and training about assistive technology that may be the root of their inadequacy
in helping caregivers. Some evidence suggests
that providers are not receiving enough education in school about assistive technology,
especially for young children with recommendations for more emphasis be placed on assistive technology during preservice preparation (Campbell, Milbourne, Chiarello, &
Wilcox, 2009; Weintraub & Wilcox, 2006).
However, technology is ever-changing and education needs to continue beyond school.
Providers need to take on the responsibility
Caregiver Perspectives on Assistive Technology
of keeping up-to-date about the latest assistive
technology approaches and ideas. Training
and continuing education courses emphasizing the use of assistive technology with
infants, toddlers, and caregivers should be
offered by professional development organizations, early intervention agencies, or professional associations.
Limitations
The caregivers of infants and toddlers with
physical disabilities who participated in this
study are not a good representation of the
general population. A majority of caregivers
were middle-class white mothers with a college degree living in a 2-parent household in
the suburbs. A more diverse population may
not have participated since the survey was administered online and access to a computer or
Internet may not have been possible for people from low socioeconomic status or various
age or culture groups. Further investigation
with a more representative sample may yield
different results.
There are also inherent limitations in survey
research that was the way in which data were
collected in this study. There is often disconnect between what respondents report and
what actually occurs (Wilcox, Dugan, et al.,
2006). The survey data provide important information as an initial investigation; however,
additional research needs to be conducted
that utilizes different methodologies in order
to yield more accurate results and better represent the general population.
Future research
Information resulting from this study offers a starting base on which to build additional research studies. Qualitative method-
181
ologies such as interviews or focus groups
provide a way in which a greater depth of information could be obtained. For example, interviews with caregivers may result in more
information about assistive technology including how the early interventionist introduced
the device, how the device is used, and other
devices or methods used by the caregiver to
find a successful solution. Direct observation
methods would also be useful in eliminating
the disconnect between what is reported by
caregivers and what is actually occurring by
allowing researchers to identify strategies that
providers use to explain and teach use of
assistive technology to caregivers. Similarly,
conducting interviews and focus groups with
providers would provide information about
how they have been trained and how they
teach caregivers to use assistive technology
within activities/routines.
Assistive technology continues to be underutilized, which suggests that traditional methods of disseminating information are not effectively reaching targeted audiences. Finding
ways in which information can be better disseminated to early intervention providers may
be 1 strategy to help increase the use of assistive technology. Early intervention providers
need to receive updated information about assistive technology, receive training on how to
use it in order to increase their competency,
and be educated on how to best support caregivers when using assistive technology. The
benefits of assistive technology have been
established; however, more information on
its specific uses with infants and toddlers
is needed. Strategies for increasing assistive
technology use are also needed so that underutilization and abandonment do not continue
to be reported trends.
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