INTRODUCTION AND PURPOSE
Children and youth with disabilities typically have decreased fitness, which often prevents them from participating with their peers and places them at risk for secondary health problems.1–4 According to the U.S. Department of Health and Human Services Healthy Children 2010 report, individuals with disabilities are less likely to participate in sustained or vigorous exercise than individuals without disabilities.5 This is, in part, the result of physical and social barriers that hamper equal access to community facilities. In addition, fitness programs for children with disabilities present unique challenges. Adaptive exercise equipment, fitness assessments specifically designed for children with disabilities, behavioral management interventions, and medical precautions may be required for safe and effective participation. Community fitness staff also need education and training to support these accommodations.6 Pediatric physical therapists and other medical professionals may be needed to assist community fitness staff with developing and implementing safe and effective fitness programs for children with disabilities.
Fitness has been defined in the publication “Guide to Physical Therapist Practice” as a dynamic physical state in which a person can optimally and efficiently participate in daily and leisure activities. Components of fitness include cardiovascular/pulmonary endurance, muscle strength, power, endurance, flexibility, relaxation, and body composition.7 For children with physical disabilities, ongoing fitness training often is essential for attaining and maintaining independence in functional activities of daily living. Traditionally, exercise programs for children with disabilities have been limited to school and medical settings. Each of these two settings, however, has resource constraints that restrict frequency of participation. Further, community centers provide a setting for families of children with disabilities to engage in recreation together and to develop friendships among families.
Little research is available on the effectiveness of comprehensive fitness programs for children with neuromuscular and developmental disabilities. Although the validity of case reports is limited given their research design, four case reports8–11 suggest that fitness programming may be effective for children with disabilities. In a case report of a three-year-old child with hemiplegia, Wiepert and Lewis8 described improvements in energy expenditure and strength following a two-times-per-week home exercise program lasting six weeks. In addition, the parents reported that their child was willing to participate in more-challenging activities and fell less during play. In the second case report, a 10.5-year-old girl with Down syndrome made improvements in aerobic performance, strength, and gross motor skills after a six-week home fitness program of 30 to 60 minutes’ duration, five to six days per week.9
Positive findings were reported by Schreiber and colleagues in a case report of a child who participated in “Off the Couch,” a weekly community fitness program. At the end of 10 weeks, the 11-year-old girl, who was diagnosed with hypotonia and mild mental retardation, exhibited a reduced Energy Expenditure Index (EEI) and improved maximum running velocity.10 Positive findings also were reported by Fragala-Pinkham and colleagues, 11 who implemented a group strength and endurance training program, held twice weekly for 14 weeks. In their case series, nine children with physical or developmental disabilities, ages five to nine years, safely participated in a hospital-based group program. Program adherence was high during the group exercise program, and improvements in EEI, muscle strength, and mobility were observed. This case series provides preliminary information on the safety and feasibility of a hospital-based group exercise program for young children with physical or developmental disabilities.
We found only one quasi-experimental study, which evaluated the effectiveness of a group exercise program combining strength and endurance training for children and youth with cerebral palsy. A pretest-posttest design was used to evaluate the effectiveness of a community-based group exercise program for 23 individuals with cerebral palsy aged 11 to 20 years.12 Three pretest sessions were held to establish a stable baseline before the start of the intervention. The program was held three times per week for 10 weeks at a community-based fitness center and consisted of warm-up, aerobic exercise, weight training using machines, and flexibility cool-down exercises. In that study, Darrah and colleagues12 reported significant improvements in strength and perceived competence for children and youth with cerebral palsy. They did not find significant changes; however, in the cardiovascular endurance measures of EEI or submaximal heart rate.
The purpose of this study was to expand the scope of current knowledge on comprehensive fitness programs for children with disabilities. Specifically, the objectives were to evaluate the feasibility, safety, and effectiveness of shifting a hospital-based fitness program for children with neuromuscular and developmental disabilities to a community setting. A vital part of this project was partnering with three well-established family oriented, community fitness centers. Findings from our previous case series11 on outcome sensitivity, feasibility, and activity programming in a hospital-based program guided development of the protocols for this project.
This quasi-experimental clinical study used a single group pretest-posttest design to examine the feasibility, safety, and effectiveness of a community-based fitness program for school-aged children with disabilities. A convenience sample of 28 children, 17 boys and 11 girls, with neuromuscular or developmental disabilities participated in this study. Table 1 presents participant characteristics. The children were between the ages of six years and 14 years, eight months, with a mean age of nine years, one month (SD 2.32). The criteria for inclusion were that the children: (1) had a neuromuscular or developmental disability, (2) had decreased fitness as compared with their peers without disabilities (ie limitations in muscle strength, endurance, and gross motor skills), 3) were medically able to participate in a group exercise program, 4) did not need individualized attention for monitoring medical or behavioral status, 5) were able to follow simple directions and actively participate during a 60-minute group session, and 6) were not currently participating in another community-based exercise program. Screening for decreased fitness was done by parent report and then confirmed later by decreased performance on outcome measures. Forty-six percent of the participants were receiving physical therapy at school and continued the same type and intensity of therapy services. Children who had a medical procedure (ie orthopedic surgery) within six months of the start of this project or who were scheduled for a procedure during the study period were excluded. Children were recruited from schools and pediatric hospitals nearby the three participating fitness centers. Recruitment flyers were mailed to pediatric physical and occupational therapists and to chairpersons of school special education parent advisory committees. The study was approved by the Institutional Review Board at Franciscan Hospital for Children, and parents and children signed consent or assent forms.
All but two of the participants were independent in community ambulation without assistive devices. One of the participants used a wheelchair, and the other used a cane for community mobility. Five children used ankle- foot orthoses. To provide a clinical picture of each child, participants were classified using criteria from the Gross Motor Function Classification System (GMFCS).13 The majority of the children (n = 23) matched Level I, ie, had the ability to walk without restrictions but had limitations in advanced gross motor skills. Three children were classified as GMFCS Level II, ie, walked without assistive devices but had difficulty with walking outdoors and in the community. Two children, classified in GMFCS Level III, walked with an assistive device and had limitations in walking outdoors and in the community.
Children also were grouped by diagnostic category according to their primary impairment because we wanted to examine any differences in response to exercise related to diagnosis. The developmental disability category (n = 17) included children with intellectual disabilities (n = 6), pervasive developmental disorders (n = 7), or genetic disorders with intellectual and/or behavior components (n = 4). The neuromuscular disability category (n = 11) included children with cerebral palsy (spastic diplegia [n = 4], hemiplegia [n = 3]), Duchenne muscular dystrophy (n = 1), traumatic brain injury (n = 1), Lupus and gross motor delays (n = 1), or congenital heart disease and gross motor delays (n = 1).
Dependent measures were tested before and after the exercise program by four pediatric physical therapists with an average of 10.5 years of experience. Tester training and practice sessions were held before the start of the study. High inter-rater reliability between testers and times was established for each outcome variable with a sample of four children with one to two weeks between test sessions. Inter-rater reliability data are reported within each outcome measure section that follows. The stability of the measures was also documented during the inter-rater reliability testing because the two test sessions were held one to two weeks apart.
Pretests were completed one to two weeks before the start of the intervention, in two one-hour sessions on different days. Isometric muscle strength, energy expenditure, and functional mobility were tested on the first day and the Presidential Fitness Test was conducted on the second day of testing. Post-tests were completed within two weeks of the end of the intervention using pretest protocols. Body mass index data and progress toward nutrition goals also were collected and will be reported elsewhere. Tester blinding was not possible as therapists had prior knowledge of the purpose and design of the study because they had access to participant recruitment flyers, but the testers did not view pretest data during the post-test sessions. Testers did observe some of the fitness sessions for some of the children.
Peak isometric muscle strength of the knee extensors, hip abductors, and ankle plantarflexors was measured using a Chatillon® hand held dynamometer (Ametek, Fargo, FL). To streamline the measurement protocol, only one side was measured. If the child had unilateral weakness, the involved side was measured and if a child had bilateral involvement, the nondominant side was measured. An established protocol specifying the child’s position, stabilizer’s position, and landmarks for the placement of the dynamometer was used.14,15 Children were first given a practice attempt to make sure that they understood the task. If a child had difficulty with the practice attempt, another demonstration and verbal instructions were provided. Then the child performed three trials for each muscle group. The largest peak value for each muscle group was selected from each pretest and post-test session and compared. Inter-rater reliability was established on four of the children and the intraclass correlation coefficient (ICC2,1) for hip abductors was 0.968, for knee extensors 0.996, and for ankle plantarflexors 0.998. For correlational analysis, we combined the three lower-extremity strength variables into a composite by simply summing the force (kg) values for each muscle group.
Energy Expenditure Index.
We used EEI to assess walking energy expenditure.16–18 Children sat quietly for five minutes, and a resting heart rate was recorded using a Polar® heart rate monitor (Polar Electro Inc., Woodbury, NY). Next, children walked continuously and as fast as possible without running for three minutes. A working heart rate and the distance covered in the three minutes was recorded and energy expenditure index was calculated using the formula: (Working heart rate − resting heart rate)/speed.18 The inter-rater reliability was high (ICC2,1 = 0.9565) for four children.
The Pompe-Pediatric Evaluation of Disability Inventory (Pompe-PEDI), Functional Skills Mobility scale was used to measure mobility and gross motor function. This disease-specific version of the PEDI19 was developed for children ages birth to 15 years with Pompe Disease, which is a rare, genetic, neuromuscular disorder. We decided to use the Pompe-PEDI in this study because, unlike many other functional measures, its items covered the age range and content needed for this sample. The Functional Skills Mobility scale has 161 items ranging from being able to crawl independently to being able to climb a freestanding rope or run three miles without stopping. Normative profiles and scaled scores have been developed for this measure.20 The inter-rater reliability for the Pompe-PEDI was found to be high (ICC 2,1 = 0.972). Test-retest reliability on an earlier version of the Pompe-PEDI was also high (ICC = 0.98).19
The Presidential Physical Fitness test (PFT), which is composed of five subtests (one mile walk/run, shuttle run, sit-ups, pushups, and sit and reach) was used to measure changes in fitness. The subtests provide information on endurance, power, core muscle strength, and low back and hamstring flexibility. The PFT is commonly used in school-based physical education programs to test fitness in children with and without disabilities. Normative values for the PFT were determined based on 18,857 U.S. public school students ages six to 17 years.21 Although the President’s Council on Physical Fitness and Sports recommends that the PFT be modified to accommodate the needs of students with disabilities, information about how to modify the test is not available. We modified the pushups and allowed children to use a bent-knee position instead of a straight knee position. If a child could not complete the one mile walk/run, a maximum value of 30 minutes was entered for that item. As our outcome metric, we used raw scores rather than percentiles because most of the children in the sample had very low age-based percentiles, and our expectation from the intervention program was not to have them achieve age-appropriateness but to improve in some of the individual tests. High inter-rater reliability was achieved for all of the PFT subtests and the ICC2,1 ranged from 0.9634 to 0.9880.
Falls and Injuries.
The physical therapist supervising the group recorded on a flow sheet all falls and other potential injuries that occurred during the group exercise sessions. In addition, before each session, parents were asked to report any physical concerns that they believed were related to the exercise program, such as pain, soreness, or fatigue, which limited the child’s functional mobility after the last group.
Attendance was recorded for each child at the beginning of every session. Percentage of program attendance was calculated by dividing the number of sessions attended by the total number of exercise sessions and multiplying by 100.
Fitness Intervention Program
The fitness program was designed by a pediatric physical therapist (M.F.-P.) with 20 years of clinical experience and validated by a panel of physical therapy experts during an earlier phase of this research. It had originally been implemented in an outpatient hospital setting.11 The program consisted of three to five minutes of warm-up exercises, 15 to 20 minutes of strength training, 10 to 30 minutes of aerobic conditioning, and five minutes for cool down. Sessions were held two times per week for 16 weeks at each of three YMCA sites, which are nonprofit, fitness facilities that focus on the health and well being of children and families. Two YMCAs were located in the Boston suburbs, and one was located within the Boston city limits. Site assignment was based on proximity to the children’s homes (Table 1).
Fitness sessions were led by a YMCA fitness staff member or a physical or occupational therapy student. One pediatric physical therapist was present to supervise all classes. In addition, other YMCA staff and physical and occupational therapy students provided assistance during the sessions to maximize participation and safety so that there was one adult for every two children. Before the start of the study, a 1.5-hour long training session was held for the YMCA fitness staff and physical and occupational therapy students who served as assistants to the children during the group sessions. Physical therapists who supervised the classes also participated in a one-hour training session. Written information on exercise guidelines, how to modify activities for children with a variety of disabilities, and specific class activities for the group fitness program were provided and taught during the training session. A manual with a schedule and description of class activities also were provided to all fitness staff to increase consistency across the three YMCA sites.
The warm-up consisted of arm and leg movements such as arm circles, marching, and leg kicks while sitting on therapy balls or in a standing position.
Children used cuff weights, resistance bands, floor exercises such as sit-ups and pushups, and closed chain exercises such as wall squats and heel raises. During the first week of the exercise sessions, children started with six repetitions and increased by two repetitions per week until they reached 15 repetitions. Six to 15 repetitions were chosen because higher repetitions and lower resistance are recommended for strength training with young children22 and because several other researchers have used similar protocols for strength training in children with cerebral palsy.12,23–25 Initially, the amount of weight lifted was determined for each child using a six-repetition maximum. The weight was then increased by one half to one pound (0.2 to 0.5 kg) as tolerated. During the group exercise sessions, children performed one set of hip flexion, knee extension, bicep curls, proprioceptive neuromuscular facilitation diagonals, and trunk lean backs using resistive exercise bands or cuff weights while sitting on therapy balls. Hip extension was done in quadruped position over the therapy ball, and hip abduction was done in a side lying position while on the floor using cuff weights. Wall squats, wall pushups, and heel raises were all done in a standing position using the wall for support. For the first week, the children started with five strengthening activities and, during a three-week period, progressed to completing all 10 activities.
Children moved continuously while participating in parachute games, obstacle courses, follow the leader (walking, running, skipping, hopping, etc), movement to music using ribbon wands, or sports drills such as running the bases, playing catch, and fielding ground balls with emphasis on continuous movement. A variety of activities was used to keep the children motivated. During the first week of the fitness classes, 10 minutes of aerobic training was done. The time spent doing aerobic activities increased so that by the end of the third week, children were doing 30 minutes of aerobic training. Attempts were made to have the training intensity start at 50% to 60% maximum heart rate (HR) and increase so that the children were at approximately 75% to 80% maximum HR by week five. During the group sessions, training heart rate was monitored on one or two children per week using a Polar® heart rate monitor. This provided a general guideline of the intensity of that session; however, we were unable to determine the exact amount of time children were in their target HR during each of the sessions. Attempts were made to keep the children moving and working hard during the aerobic conditioning segment.
Children ended the exercise sessions with cool down activities consisting of walking one to two laps around the gym or slow movement activities in a standing position, followed by stretching. Stretches were held for at least 30 seconds for the major muscle groups, including back extensors and lateral trunk muscles, pectoral muscles, triceps, hip flexors, hip adductors, hamstrings, quadriceps, and plantarflexors.
In addition to the exercise component of this community-based fitness program, parents received two group and three individual nutrition counseling sessions from a registered dietitian and two group wellness education sessions presented by a physical therapist. The results of these interventions will be reported elsewhere.
For the overall group analyses, paired sample t tests were used to compare the pretest and post-test mean scores of strength, EEI, function, and fitness measures. An adapted Bonferroni step-down procedure26 to maintain study-wise Type I error rate was used, as the unadjusted Bonferroni correction for more than five outcome variables is thought to be too conservative.27 The procedure ranks the p-values and starts with the most extreme, and then the p-value is adjusted sequentially according to the number of tests.
Change was described by reporting two sensitivity-to-change coefficients which are often reported in a pretest to post-test designs.28 One statistic, effect size, is a standardized coefficient obtained by dividing the average change between initial and follow-up measurements, divided by the standard deviation of the initial measurement. Effect size was interpreted according to Cohen’s d guidelines: 0.20 as small, 0.50 as moderate, and 0.80 as large.29
The other statistic, minimal detectable change (MDC), is the magnitude of change over and above measurement error of two repeated measures at a specified confidence level.30,31 It is the product of the standard error of measurement (which is the standard deviation multiplied by the square root of one minus the test-retest reliability coefficient), the confidence level of choice (1.96 for 95% confidence, 1.64 for 90% confidence, or 1.00 for 68% confidence), and the square root of two (to account for the inflation of error associated with replicate measurements).32 MDC was calculated for variables in which test-retest reliability data were available from a previous study11; specifically, muscle strength and EEI. A z-score of 1.64 was chosen to reflect an acceptable 90% confidence level for clinical application to individual patients.33 In addition, reliable change proportion, defined as the proportion of the sample with positive change scores (indicating an intervention effect) exceeding the MDC at a 90% confidence level,34 was then calculated using the MDC data for the four variables for which it was available.
Finally, a series of post-hoc analyses was performed to examine the effects of YMCA site and diagnostic group, and the associations among the outcomes and attendance. Differences in the amount of change across the three sites were analyzed using one-way analyses of variance and Scheffe post-hoc comparisons. Outcomes across the two broad diagnostic groups (developmental disabilities verses neuromuscular disabilities) were tested using a series of independent t tests. Finally, bivariate Pearson product moment correlations were performed among changes in the outcome variables during the intervention period and attendance.
Significant improvements were found for all of the clinical outcomes (Table 2). The effect size was large for the Pompe-PEDI and moderate to small for the other outcome variables. MDC calculations and the proportion of individual cases that changed in a positive direction beyond what would be expected due to measurement error are presented in Table 3. The number of children whose performance changed above and beyond measurement error ranged from 21% to 50% in lower extremity muscle strength and EEI.
No injuries resulting from the exercise classes were reported by the children or parents. Thirty-one falls occurred during the 16-week period; none resulted in injury. Three children with cerebral palsy (GMFCS Levels II and III) experienced the majority of falls (n = 29). Two children in the developmental disability category each had one fall during the 16-week period.
For nine of the 10 outcomes, there were no significant main effects or interactions across the three fitness sites for the repeated tests. Site A participants as a group had greater pretest ability to do modified pushups (F = 4.17, df = 2, p = 0.027) and improved more (Scheffe; p < 0.036) than children at Site B. No significant main effects or interactions were found between the two diagnostic groups (neuromuscular and developmental disabilities) for any of the outcome variables. Nonsignificant correlations were found between program attendance and the amount of change in combined strength measures, (r = 0.32, p = 0.10) EEI (r = 0.31, p = 0.11), or functional mobility scores (r = 0.03, p = 0.88).
The purpose of this study was to examine the feasibility, safety, and effectiveness of a 16-week community-based group fitness program designed for children with neuromuscular and developmental disabilities. Feasibility of the fitness program was supported. It was implemented as designed, no sessions were cancelled, and attendance was good. In addition, after the study was completed, two of the three sites continued the fitness program with occasional support from a pediatric physical therapist only when new children entered the program or when a new eight-week session was starting. By providing a written instruction manual of specific activities and staff training, these community facilities were able to conduct this program with little differences in site results. Safety also was confirmed.
Because the single-group design does not control for threats to validity as the result of maturation and environmental factors, only clinically important changes will be discussed. Children who participated in this study had functional mobility and gross motor skills that were below that of their peers at the start of this study. Upon pretest, 27 of the 28 children scored two or more standard deviations below the norm on the Pompe-PEDI Functional Skills Mobility scale. At post-test, this result was markedly reduced to 13 children. In addition, the large effect size of the Pompe-PEDI scaled scores supports a meaningful clinical change in functional mobility.
Improved functional mobility may be the result of the incorporation of functional activities into most aspects of the fitness program. For example, during endurance training children practiced moving on and off the floor, slow and fast walking, running, hopping, and jumping. Also, activity-focused interventions involving structured practice and repetition have been shown to assist children with neurological conditions in developing increased independence in functional tasks.35 Third, several of the strength training activities, such as squats, lunges, and heel raises, were done in an upright position and involved functional movement skills, balance and motor planning skills so this may also have contributed to the functional gains. Further, strength training has been shown to affect functional mobility in individuals with neuromuscular disabilities.36 A positive effect of the fitness intervention on knee extensor strength for 59% of the children was found and would support findings of improved transitional skills and upright functional mobility.
Forty-three percent of the children in our sample demonstrated improvements in energy expenditure on the three minute fast walk test (EEI) after the 16-week fitness program. Darrah and colleagues12 reported no change in EEI after a 10-week fitness program. However, differences in program intensity and duration may have influenced our outcomes. Positive changes in walking energy expenditure may impact a child’s ability to move around in their school, home or community environments.
We anticipated that diagnostic group would account, in part, for differences across participants, but instead we found very little difference between the two diagnostic groups. Some differences among participants were found at pretest and may have created a “ceiling effect.” For example, several of the children in the developmental disabilities group scored higher on the pretest, demonstrating better baseline leg strength. An alternative explanation, based on informal observation, is that the children with developmental disabilities had greater impairments in coordinating movement than in strength. It was also noted that many participants with developmental disabilities started with slightly higher levels (albeit nonsignificant) of endurance, strength, and mobility function, but both groups made approximately the same magnitude of improvement. Larger sample sizes within each group, however, are needed in future studies to determine if this trend is real and generalizable.
It was surprising that program attendance did not correlate with improvements in the outcomes. This may, in part, be explained by variations in active participation and exercise intensity that the child achieved during the class. Some children needed more encouragement than others to continue to move during the endurance component or to lift more weight during the strength training component so training intensity might have been low or variable even though attendance was high.
Modifications for Children in Wheelchairs
All of the children who participated in this study were able to walk independently with or without an assistive device; however, this fitness program could easily be modified for children who use wheelchairs for mobility. All of the walking or running activities (ie follow the leader, obstacle courses, sport drills) could be done using a wheelchair. Fast propelling could be substituted for running activities, skipping could be done by having children periodically turn slightly so that the wheelchair faces in or out of the path to represent a “skip.” For soccer, children can maneuver around the gym using a wheelchair and could kick an oversized ball or use a hockey stick to move the ball. Or, children could play scooter board soccer in a prone or sitting position using floor scooters. For children who cannot tolerate prone or cannot sit without a back support, floor scooters with seat backs could be used. For playing catch, children can use long-handled ball retrievers to pick up tennis balls from the floor. An obstacle course can be easily adapted to accommodate children who use wheelchairs for mobility. When using a tunnel, children can be assisted out of their wheelchairs so that they can crawl through or the tunnel can be modified so instead they wheel and duck under tubing placed at a height that can accommodate their wheelchair. A long-handled reacher can be used to pick up items placed on the floor for children who cannot reach or get to the floor. Another option is to place bean bags or rings on an elevated surface within their reach. Some regulation-sized basketball hoops can be lowered or an attachment can be placed on the net to bring the hoop down to a reasonable height. These are just a few examples of how tasks can be modified so that a child who uses a wheelchair can fully participate in group fitness activities.
Implications for Implementing Community Fitness Programs
The children in this study required modifications for their physical, behavioral, and cognitive needs. By providing a high adult to child ratio, a training session for fitness staff, written instructions and exercise guidelines, and a program designed and supervised by an expert pediatric physical therapist, the safety of this community-based fitness program was high. In addition, by providing a written instruction manual of specific activities and staff training, two of the community facilities, with only occasional physical therapy consultation, offered additional sessions of fitness classes.
When partnering with community centers, therapists need to consider several challenges: equipment, transportation, individualized program design to address special needs and precautions, and staffing. This program was designed to use standard exercise and sports play equipment, including cones, hula hoops, floor scooters, playground balls, and bean bags. Although this equipment is readily available for purchase at retail sports stores, some community centers may need start-up funding for the equipment. This expense should not be prohibitive because most equipment is re-usable. Second, children most likely will require transportation to and from the fitness classes, but this would also be true for a hospital-based program. One benefit of the community center is that families can integrate physical activity into a healthy family lifestyle. A few of the families affiliated with the study already had family memberships in the YMCA, and they used other facilities at the YMCA during their child’s fitness class. Other families recognized this benefit and said that they planned to have the family join the center.
Pediatric physical therapy consultation is advised when children with disabilities begin a community-based program, even though the program procedure manual explicitly describes how to establish and progress the difficulty of the fitness workout. Pediatric physical therapy consultants can also serve an important role in educating the staff on the nature of health conditions that are new to them and on how to handle specific medical precautions.
Given the need for a high adult to child ratio, staffing may be the most common challenge voiced by community center administrators. Community centers in urban areas may be able to contact nearby physical and occupational therapy programs for student volunteers. Many programs require community service, which can be an excellent opportunity for physical and occupational therapy students to integrate health promotion with community service. Even in suburban and more rural areas, most high schools encourage community service, and these students also may be available as volunteers.
Changes in staff, however, can be particularly challenging. Initially, partnering with community centers requires that at least one individual within the administration and one individual at the implementation level are motivated to conduct the program. The community center has to be dedicated to implementing the program because space and time for staff training represent financial expenditures. If key community center personnel leave, the therapist will need to assess the readiness of the new staff to assume the fitness program, and provide educational information on the benefits of such programming to the center, the community, and to the participating families and children.
Ideally, program evaluation should be conducted and could consist of fitness testing or a child/parent satisfaction survey. One option for fitness testing would be to perform group testing by setting up three to four testing stations. Examples of fitness tests may include subtests from the PFT (ie timed sit-ups or push-ups, sit and reach or shuttle run) or a one-minute37 or three-minute walk test. The testing could be performed on the first day of the fitness program session during a regular class time and then again at the end of an eight- or 10-week program. The type of tests would depend on the age and abilities of the children and the type of fitness class. Also, when designing program evaluation measures, a quarter or half mile may be more appropriate distance for evaluation of endurance in children with neuromuscular and developmental disabilities. Although improvements in the one-mile walk/run were significant, seven of the children were unable to complete the one-mile walk/run even at the end of 16 weeks of fitness training. The one-mile subtest takes a long time to complete, and it was difficult to keep some children interested and motivated to complete the activity, especially in a gym where many laps were required.
This community-based group fitness program for school-aged children with disabilities was feasible and safe to implement and may serve as a template for physical therapists to use when partnering with community centers. Specific aspects of this program may, of course, need adaptation based on the characteristics and health conditions of the participating children. By enhancing community access to family-oriented fitness centers, children with disabilities will be afforded more opportunities to incorporate physical activity as a healthy lifestyle, improve physical fitness, develop friendships with children and families of all abilities, and more fully participate in the community.
We would like to thank the Massachusetts YMCA coordinators Leah Atkinson, Waltham YMCA, Mathew LaPorte, Brighton YMCA, and Alison Foley, Beverly YMCA; Boston University physical and occupational therapy students (Christine Soussou, Jen Cardella, Laura Gavin, Christine Cahalan, Katie Wolford, Kelley Kuzak, and Sally Moll), and the physical therapists (Jodi Leahy, Suzanne Francesconi, Amy Pasternak, Tracey Rich, Dina Petrosino, and Naseem Challawalla) who assisted with this study. We would also especially like to thank the children who participated in this study and their parents.
1. Campbell J, Ball J. Energetics of walking in cerebral palsy. Orthop Clin North Am.
2. Durstine J, Painter P, Franklin B, et al. Physical activity for the chronically ill and disabled. Sports Med.
3. Dichter C, Darbee J, Effgen S, et al. Assessment of pulmonary function and physical fitness in children with Down syndrome. Pediatr Phys Ther.
4. Horvat M, Croce R, Pitetti K, et al. Comparison of isokinetic peak force and work parameters in youth with and without mental retardation. Med Science Sports Exerc.
5. United States Department of Health and Human Services, Office of Disease Prevention and Health Promotion; Healthy Children 2010 Report.
6. Rimmer J. Health promotion for individuals with disabilities: the need for a transitional model in service delivery. Disease Manage Health Outcomes.
7. American Physical Therapy Association. Guide to Physical Therapist Practice. Phys Ther.
8. Wiepert S, Lewis C. Effects of a 6-week progressive exercise program on a child
with right hemiparesis. Phys Ther Case Rep.
9. Lewis C, Fragala-Pinkham M. Effects of aerobic conditioning and strength training with a child
having Down syndrome: a case study. Pediatr Phys Ther.
10. Schreiber J, Marchetti G, Crytzer T. The implementation of a fitness program for children with disabilities: a clinical case report. Pediatr Phys Ther.
11. Fragala-Pinkham M, Haley S, Rabin J, et al. Case report: a fitness program for children with disabilities. Phys Ther.
12. Darrah J, Wessel J, Nearingburg P, et al. Evaluation of a community fitness program for adolescents with cerebral palsy. Pediat Phys Ther.
13. Palisano R, Rosenbaum P, Walter S, et al. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol.
14. Effgen S, Brown D. Long-term stability of hand-held dynamometric measurements in children who have myelomeningocele. Phys Ther.
15. Stuberg W, Metcalf W. Reliability of quantitative muscle testing in healthy children and in children with Duchenne muscular dystrophy using a hand-held dynamometer. Phys Ther.
16. Butler P, Engelbrecht M, Major R, et al. Physiological cost index of walking for normal children and its use as an indicator of physical handicap. Dev Med Child Neurol.
17. Rose J, Gamble J, Lee J, et al. The energy expenditure index: a method to quantitate and compare walking energy expenditure for children and adolescents. J Pediatr Orthop.
18. Rose J, Gamble J, Medeiros J, et al. Energy cost of walking in normal children and in those with cerebral palsy: comparison of heart rate and oxygen uptake. J Pediatr Orthop.
19. Haley S, Fragala M, Aseltine N, et al. Development of a disease-specific disability instrument for Pompe disease. Pediatr Rehabil
20. Haley S, Fragala-Pinkham M, Sheng Ni P, et al. Pediatric physical functioning reference curves. Pediatr Neurol.
21. President’s Council on Physical Fitness and Sports. Youth Physical Fitness in 1985; Washington DC: US Department of Health and Human Services; 1985.
22. Washington R, Bernhardt D, Gomez J, et al. Strength training by children and adolescents, Committee on Sports Medicine and Fitness. Pediatrics
23. Damiano D, Abel M. Functional outcomes of strength training in spastic cerebral palsy. Arch Phys Med Rehabil.
24. McCubbin J, Shasby G. Effects of isokinetic exercise on adolescents with cerebral palsy. Adapted Phys Activity Q.
25. O’Connell D, Barnhart R. Improvement in wheelchair propulsion in pediatric wheelchair users through resistance training: a pilot study. Arch Phys Med Rehabil.
26. Holland B, Copenhaver M. An improved sequentially rejective Bonferroni test procedure. Biometrics
27. Altman D. Practical Statistics for Medical Research.
Boca Raton, Fl: Chapman & Hall; 1991.
28. Stratford P, Binkley J, Riddle D. Health status measures: strategies and analytic methods for assessing change scores. Phys Ther.
29. Cohen J. Statistical Power Analysis for the Behavioral Sciences.
New York, NY: Academic Press; 1977.
30. Ottenbacher KJ, Johnson MB, Hojem M. The significance of clinical change and clinical change of significance: issues and methods. Am J Occup Ther.
31. Finch E, Brooks D, Stratford P, et al. Physical Rehabilitation Outcome Measures: A Guide to Enhanced Clinical Decision Making.
Hamilton, ON: BC Decker, Inc; 2002.
32. Beaton D, Richards R. Measuring function of the shoulder. A cross-sectional comparison of five questionnaires. J Bone Joint Surg.
33. Schmitt J, Di Fabio R. Reliable change and minimum important difference (MID) proportions facilitated group responsiveness comparisons using individual threshold criteria. J Clin Epidemiol.
34. Davidson M, Keating J. A comparison of five low back disability questionnaires: reliability and responsiveness. Phys Ther.
35. Valvano J. Activity-focused motor interventions for children with neurological conditions. Phys Occup Ther Pediatr.
36. Dodd K, Taylor N, Graham H. A randomized clinical trial of strength training in young children with cerebral palsy. Dev Med Child Neurol.
37. McDowell B, Kerr C, Parkes J, et al. Validity of a 1 minute walk test for children with cerebral palsy. Dev Med Child Neurol.
Keywords:© 2006 Lippincott Williams & Wilkins, Inc.
adolescent; activities of daily living; cerebral palsy/physiopathology; child; developmental disabilities; disabled children/rehabilitation; energy metabolism; exercise therapy/organization & administration; feasibility studies; physical endurance/physiology; physical fitness/physiology; physical fitness/psychology; physical therapy/methods; research support; non-U.S. government; safety; weight lifting/physiology; weight lifting/psychology