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RESEARCH AND PRACTICE |
All authors are from the School of Medicine, University of Washington, Seattle. Kurt L. Johnson, Brian Dudgeon, and Carrie Kuehn are also with the Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle. William Walker is with the Department of Pediatrics, Division of Genetics and Developmental Medicine in the Department of Medicine, School of Medicine, University of Washington, Seattle.
Correspondence: Requests for reprints should be sent to Kurt L. Johnson, PhD, Box 356490, School of Medicine, University of Washington, Seattle, WA 98195 (kjohnson{at}u.washington.edu).
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ABSTRACT |
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Objectives. We sought to determine the use of assistive technology among a population of individuals with spina bifida.
Methods. We performed a descriptive analysis of individuals aged 13 to 27 years diagnosed with myelomeningocele (n=348) using data obtained from an existing database at Children’s Hospital and Regional Medical Center, Seattle, Washington. We summarized disease characteristics, utilization of assistive technology, community and self-care independence, and other variables.
Results. Eighty-four percent of the respondents lived with at least 1 of their natural parents. Fifty-seven percent used wheelchairs, 35% used braces, and 23% used walking aids. Independent self-care was a common skill, but 72% reported limited participation in structured activities. Half were aged 18 years or older; of those, only 50% had completed high school and 71% were unemployed. Those aged younger than 18 years were all still in school (100%).
Conclusions. Adolescents and young adults with spina bifida rely on assistive technology and specialized care routines to maintain their health. Assistive technology use for mobility is common; little is known about secondary complications associated with use of these technologies or the use of assistive technology to address learning disabilities and other societal barriers. Underutilization of assistive technology could delay successful transitions to independent living and community participation.
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INTRODUCTION |
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Although it is logical to assume that individuals with spina bifida are candidates to use assistive technologies, comprehensive reviews of their actual use and effect on performance have been relatively sparse. No data are available indicating the prevalence of use for different types of assistive technology by people with spina bifida. In addition, few rigorous evaluations of the public health benefits and rehabilitation outcomes from use of assistive technology by people with spina bifida have been conducted. Based on our review of the literature and clinical experience, we expect that individuals with spina bifida utilize assistive technology to enable or enhance mobility, manipulative skills, personal care independence, and cognitive performance.
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Mobility and Community Participation |
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To actively participate in the community, individuals with spina bifida extend their mobility through driving and use of public transportation, but community mobility can be problematic for wheelchair and other adaptive mobility device users.12 Andrén and Grimby13 found that adults aged 24–43 years with spina bifida in Sweden experienced difficulty with mobility outdoors and when using public transportation because of interactions between personal assistive technology and inaccessible environments.
Mobility is of primary importance for participation in the community, but limitations in hand function and manipulation skills may also be problematic for individuals with spina bifida. When individuals have difficulty performing personal care, such as clean intermittent catheterization (use of a flexible catheter to drain the bladder), managing external collection devices, and digital stimulation for bowel programs (initiation of a bowel movement by insertion of the index finger into the anus to empty one’s rectum), additional accommodations (including use of personal assistants or help from others) may be required. This results in reduced independence in activities of daily living, and the need for specialized personal care routines.13
Difficulty with fine-motor skills, such as handwriting, requires assessment and adaptation, and provides an opportunity for utilization of assistive technology. Manipulation difficulties may be further complicated by cognitive deficits that are characterized by short attention span, learning disabilities, intellectual delay, distractibility, and overall delay in adaptive skill development. Recent studies have confirmed a 50% prevalence rate of specific or general cognitive deficits among individuals with spina bifida and hydrocephalus, and associated enrollment in special education.14,15 Simeonsson et al.16 noted that challenges with tactile perception, auditory concentration, visual perceptual organization, and visual–motor integration are seen in a disproportionate number of children with spina bifida. In addition, a growing number of young adults with spina bifida are facing challenges with respect to education, vocation, housing, and relationships.14
Assistive technology has often been recommended to enhance performance and advance independence outcomes in daily living, community participation, education, and employment, primarily with reference to mobility and bladder or bowel care. The selection of mobility aids such as wheelchairs, walking aids (e.g., crutches), or lower-limb braces (e.g., ankle–foot orthosis) is primarily determined by lesion level. Bartonek and Saraste17 evaluated a series of patients with spina bifida and contrasted those who achieved expected ambulatory function outcomes with those who did not. They found that although lesion level predicted the type of mobility aid, it did not predict the successful use of that aid. Rather, a wide range of other factors seemed to influence successful use of mobility devices.
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Self-Care and Cognitive Support |
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Assistive technology to support cognitive functioning has also been used for children with spina bifida. These technologies include electronic time prompts and alarm avoidance to improve performance of wheelchair push-ups,21 memory aids to assist in health maintenance routines,22 word-prediction software to improve the rate and accuracy of text entry on computers,23 and hand-held electronic predictive spelling aids.24 Although these interventions appear promising, long-term efficacy for any device has not been established.
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Barriers to Assistive Technology Use |
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It is important to understand the impact of assistive technology on health and function. However, measuring outcomes of assistive-technology use is complex. Complex interactions between physical, functional, psychosocial, and quality-of-life variables all contribute to either technology use or abandonment.26 The positive benefits of enhanced function afforded by assistive technology may not outweigh dissatisfaction with its appearance, difficulties with maintenance, cost, and other factors.
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Critical Transitions |
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Shultz and Liptak28 proposed that characteristics such as high self-esteem, positive social orientation, warm and cohesive family life, friendship networks, and previous success in coping with stressful experiences are helpful for this transition. Adolescents with spina bifida may have fewer opportunities to develop these characteristics within the context of their complex health, physical, cognitive, and social challenges. Low engagement in typical activities of adolescence such as decisionmaking, friendship activities, and household responsibilities are likely to impair successful transition to adulthood, particularly in terms of self-management and employment.29
Adolescents and young adults with disability who rely on assistive technology are often transitioned toward unclear or tentative post-secondary education, employment, and independent living outcomes.30 In the kindergarten-through-12th-grade educational and pediatric medical environments, adolescents may have access to a broad range of support for assistive technology and other activities. In the postschool and adult medical environments, assistive technology and related services are less well integrated and less available. In addition, assistive technology support needs may increase even though funding for services tends to diminish.
Advocacy and networking skills are often required to successfully access services, and these may not be well developed in young adults with disabilities. For example, young adults may need to build relationships with vendors who sell assistive technology and other experts to receive the support they need for their assistive technology. A recurrent cycle of technology evaluation, selection, acquisition, training, use, and modification may lead to frustration because of changing needs, device failure, or new options and features of technology that necessitate retraining. Although expectations about the value of assistive technology vary across adolescents with various types of disability, most hope for greater access to assistive technology and, with it, a higher level of social acceptance in the community.30
The purpose of this research was to examine a historical database for information about adolescents and young adults with spina bifida to gain a better understanding of their use of assistive technology and level of community participation. The results of this descriptive study will define goals for more in-depth future research into the use of and satisfaction with assistive technology among adolescents and young adults with spina bifida and the relationships between assistive technology, quality of life, and secondary conditions that emerge while these individuals function and age.
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METHODS |
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We selected individuals from the database aged between 13 years and younger than 28 years as of December 1, 2003, with a diagnosis of myelomeningocele (n=348). A cross-sectional data set was created using the most recent record for each individual for each type of assessment (i.e., demographic, physical therapy, occupational therapy, etc.). Descriptive statistics were generated for nonmissing data to determine the prevalence of assistive technology use and to describe the biological, demographic, and functional characteristics of the study sample. To examine personal care independence, we created a composite variable by calculating the sum of each person’s reported ability to do 8 self-care items independently: dress completely, prepare meals, make a sandwich, perform hygiene, use the toilet, do own laundry, wash hands without help, and bathe alone (each coded 1=pass, 0=fail). This total score was divided into low (0–2), medium (3–5), and high (6–8) personal care independence.
Characteristics were examined for 2 groups to account for potential differences that might exist between adolescents (aged 13–17 years) and young adults (aged 18 years and older).
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RESULTS |
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) and ages ranged from 13 to 27 years (mean age = 18 ±2.46 years). Sacral lesions were most common (37%) among adolescents, whereas mid and low lumbar-level lesions were most common (37%) among young adults. Overall, 68% had a shunt in place, of whom 93% had received the shunt before they were aged 6 months.
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). Forty-three percent of the adolescents attended regular education classes within 2 grades of their expected level, 27% were in special education, 9% were in regular education with more than 2 years delay, and 21% were in regular education placements with a resource room, where students were offered the opportunity for additional educational services outside the regular classroom. Of the young adults, 35% were still attending special education and 17% were in regular education classes within 2 grades of expectation. Only 50% of the young adults had completed high school and only 14% had completed college degrees or vocational or technical training. (Some students may have reported that they had graduated from high school when they were still receiving special education services.) Among the young adults, 71% reported no current employment.
More than half of the individuals (57%) used manual or electric wheelchairs (Table 2). In addition, 35% used braces and 23% used some form of walking aid to assist with ambulation (Table 2). Ninety percent of individuals reported some kind of stool management program (digital stimulation, timed program, enema, suppository). Furthermore, 97% reported a program for bladder management (clean intermittent catheterization, diapers, incontinence pants, external collector). These characteristics were similar for both age groups.
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).
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). A greater percentage (36%) of young adults was wheelchair independent compared with the younger group (25%). More than half (53%) of the young adults used independent transportation (either automobile or public transit), compared with only 33% of the adolescents.
Despite apparently satisfactory mobility with or without aids, 72% reported no participation in structured activities and 63% reported no participation in unstructured activities (Table 3).
Limited information was available regarding the developmental status of the individuals in the database. For approximately half of the sample, verbal IQ (mean=87.28 ±18.02) and performance IQ (mean=82.79 ±17.48) scores were available. Although the means scores were not in the range of developmental disability, they fell below the 16th percentile compared with the scores of age-matched peers in the general population (e.g., mean IQ score= 100 ±15 for Wechsler instruments).
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DISCUSSION |
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The results of this study also provide a method for comparing experiences of adolescents and young adults with spina bifida to those of peers with other kinds of disabilities as well as with developing peers without disabilities. For example, the employment rate for individuals of working age in the database is approximately the same as that reported by the National Council on Disability on the basis of census data for adults with disabilities.31 However, the unemployment rate is mediated to some degree by the 14% who are attending some type of postsecondary education or training. Given that most people with disabilities are able and would prefer to work with appropriate supports, including assistive technology, and that employment confers significant advantage in terms of health status, perceived quality of life, and economic well-being, this high rate of unemployment is of concern.31
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Limitations |
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Analysis of these data was limited by time (age) differences between the most recent assistive technology and medical technology assessments and demographic updates (i.e., education, employment, living status, and so on). Changes may have occurred in an individual’s use of assistive technology and the database information may not be current with respect to independent living, employment, or community participation status for some participants. On the basis of age and date of last assessment, we estimate that time differences would only affect 10% of the study sample and would not have a significant impact on our conclusions.
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Recent Assistive Technology Developments |
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For students with learning disabilities, a variety of compensatory software programs are now available. For example, students with writing difficulties can now use speech-recognition software for text entry. Alternatively, they may use word-prediction software, with correction for words begun with phonetic spelling, to increase the speed and accuracy of writing. Students with reading disabilities can use a variety of software applications to convert text to speech. Memory and other executive-function deficits may be aided with personal digital assistants, text pagers, cell phones with calendar or text page capacity, watches with alarms or calendars, and other tools.32 No research is available on the prevalence of use of assistive technology to address learning difficulties among youth with spina bifida, and there is no research to support the efficacy of these interventions for this group, so this would be fertile ground for future research. Currently, assistive technology is not available to effectively compensate for those students with overall diminished intellectual resources.
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Public Health Implications |
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A recent survey of adults with disabilities in Washington State showed that moderate-to-severe secondary conditions were 2 to 3 times more likely in adults with disability than in adults in general.34 The most commonly reported secondary conditions included pain, obesity, fatigue, difficulty getting out into the community, falls and injuries, sleep problems, muscle spasms, and bowel and bladder problems. These findings are consistent with the secondary conditions expected and found among those who have spina bifida.16 Furthermore, though research has shown that adolescents with physical disability, including those with spina bifida, may be less likely than nondisabled counterparts to smoke, drink, or use drugs, they are much more likely to have unhealthy eating patterns and to engage in sedentary leisure activities that diminish opportunities to maintain fitness.35
Although the incidence of spina bifida is on the decline, the number of individuals affected with a childhood disability is on the rise. Individuals with spina bifida could benefit from programs and approaches proposed for use with others who have developmental disability. Ayyangar36 contended that although conditions resulting in childhood disability are varied, using a general health framework approach to their care and management is most advantageous. A broad focus on anticipatory guidance, growth, development, medical care, psychological and vocational counseling, and resource planning is recommended to address particular challenges. Promoting healthy eating habits, encouraging exercise and socialization behaviors, and strengthening bonds between children with disability, family, and community are essential to minimize disability-related problems in adulthood.
There is variable success with independence and full community participation among those with spina bifida, which may relate to the complexity of the disorder and associated disability management methods, including uses of assistive technology. Although using assistive technology can result in significantly enhanced independence, employment, and life satisfaction, the technology must be carefully matched with the individual to achieve successful outcomes.37
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Conclusions |
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Acknowledgments |
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Human Participant Protection
Approval to conduct this study was given by the institutional review board of Children’s Hospital and Regional Medical Center, Seattle, Wash, and was obtained prior to the analysis of this data set.
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Footnotes |
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Contributors
K. L. Johnson originated the study and led the writing of the article. B. Dudgeon and W. Walker contributed to the interpretation of the data and the writing of the article. C. Kuehn led the data analysis and collaborated in writing the article.
Accepted for publication January 27, 2006.
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References |
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
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ABSTRACT
INTRODUCTION