Infants & Young Children:
Young Children With Physical Disabilities: Caregiver Perspectives About Assistive Technology
Kling, Adria OTR/L; Campbell, Philippa H. PhD; Wilcox, Jeanne PhD
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 (firstname.lastname@example.org).
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.
ASSISTIVE 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, encouraging 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 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 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).
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.
An archival database of caregiver responses to a Tots ‘N Tech Research Institute (http://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.
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 open-ended 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 open-ended 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 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: low-tech 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.
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.
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 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 technology, 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.
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 low-tech 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 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 χ2 statistic to examine whether caregivers who 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 [χ2(9, N = 164) = 58.85, P = .0001] and training [χ2(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 [χ2(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 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 between-subjects 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 competence 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 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.
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 self-help/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 mobility 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 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 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.
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.
Information resulting from this study offers a starting base on which to build additional research studies. Qualitative methodologies 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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assistive devices; assistive technology; caregiver; cerebral palsy; early intervention; physical disabilities
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