Mothers' experiences with the Pediatric Evaluation of Disability Inventory (PEDI).

Parents of a child with a disability are often asked about their child's functioning in daily activities. One way to gather this information is through parent-report functional questionnaires such as the Pediatric Evaluation of Disability Inventory (PEDI). The purpose of this study was to explore parental experiences associated with completion of the PEDI before and after a functional therapy intervention. Semi-structured interviews were conducted with 12 mothers of children with cerebral palsy (CP) or developmental delay (DD) who had completed the PEDI within a larger study. A content analysis approach was used to code and organize the data into five themes. PEDI completion was associated with increased parental awareness of developmental patterns, and greater insight into levels of assistance they give to their child. Parents described various challenges and concerns with the PEDI that have implications for test administration processes. The findings have potential to enable more sensitive and focused PEDI use.

Functional outcomes associated with adaptive seating interventions in children and youth with wheeled mobility needs.

OBJECTIVE: To determine the parent-reported functional outcomes associated with adaptive seating devices for wheeled mobility devices used by young people aged 1 to 17 years. DESIGN: Longitudinal case series. SETTING: Homes of participating parents. PARTICIPANTS: Parents (N=70, 63 mothers, 6 fathers, 1 grandmother) who had children with adaptive seating needs. INTERVENTION: Adaptive seating system for wheeled mobility devices. MAIN OUTCOME MEASURE: Family Impact of Assistive Technology Scale for Adaptive Seating (FIATS-AS). RESULTS: All parents completed the FIATS-AS 4 times-2 times before and 2 times after their child received a new adaptive seating system. Mixed-design analysis of variance did not detect significant mean differences among the FIATS-AS scores measured at baseline and 2 and 8 months after receiving the seating system (F2,134=.22, P=.81). However, the FIATS-AS detected a significant interaction between age cohort and interview time (F4,134=4.5, P<.001, partial η(2)=.16). Post hoc testing confirmed that 8 months after receiving the seating system was associated with a large improvement in child and family functioning for children <4 years, maintenance of functioning for children between 4 and 12 years, and a moderate decline in functioning for youth between 13 and 17 years. CONCLUSIONS: Adaptive seating interventions for wheeled mobility devices are associated with functional changes in the lives of children and their families that interact inversely with age. Future controlled longitudinal studies could provide further empirical evidence of functional changes in the lives of children and their families after the introduction and long-term use of specific adaptive seating interventions.

Electronic aids to daily living and quality of life for persons with tetraplegia.

PURPOSE: To compare the satisfaction with quality of life (QOL) of adults with tetraplegia from spinal cord injury (SCI) who use and do not use electronic aids to daily living (EADLs). METHOD: This study used a cross-sectional design. Thirty-six persons with spinal cord injuries or conditions at or above C5/6 level participated. Fifteen participants used EADL at home and 21 formed the comparison group of non-users of EADL; all were living in the community. We used the Quality of Life Profile-Physical Disabilities (QOLP-PD) to examine participant's QOL. RESULTS: Both groups rated the levels of importance of all aspects of QOL equally. The EADL users rated their satisfaction with QOL significantly higher for total QOLP-PD scores and for four of the nine domains, including all three domains of belonging. The groups did not differ in age, FIM scores, level of education, and hours of paid attendant care. The EADL user group had significantly more males than females, and had higher levels of SCI. CONCLUSIONS: EADLs appear to contribute to the experience of greater subjective QOL for persons with severe physical disability from high SCI. Prospective cohort studies designs that employ methods and analytic plans to study the causal effect of EADLs on QOL are recommended. The QOLP-PD was found to be a valid measure of QOL for this population.

Randomised controlled trial comparing two school furniture configurations in the printing performance of young children with cerebral palsy.

AIM: This randomised controlled trial compared the same-session effects of two different school furniture configurations on printing legibility. METHODS: A total of 30 school-age children with ambulatory cerebral palsy participated in this study. Each child provided one near-point printing sample of up to 34 letters while positioned on Mandal-type specialty school furniture and on standard school furniture. An assessor who was unaware of the intervention assignment scored printing errors. RESULTS: No significant difference in legibility score mean values between the interventions was detected and the effect size was small. CONCLUSIONS: Compared with standard school furniture, the use of specialty school furniture did not lead to immediate gains in printing legibility and other printing performance areas for children with cerebral palsy. Further study of the influence of functional abilities, other contextual factors and the longer-term use of school furniture on handwriting performance is recommended.

Effect of adaptive seating devices on the activity performance of children with cerebral palsy.

OBJECTIVE: To evaluate the short-term impact of 2 adaptive seating devices on the activity performance and satisfaction with performance of children with cerebral palsy (CP), as observed by their parents. DESIGN: Baseline-intervention-baseline study. SETTING: Homes of participating families. PARTICIPANTS: Parents and their children (N=30), mean age of 4 years 6 months, with Gross Motor Function Classification System levels III and IV CP participated. INTERVENTIONS: Two special purpose seating devices: one for sitting support on the floor or on a chair, the other for postural control on a toilet. MAIN OUTCOME MEASURES: Changes in activity performance and satisfaction were measured through parent ratings on the Canadian Occupational Performance Measure. We interviewed parents biweekly using the Home Activity Log to describe and explain their child's activity performance during the 3 study phases. RESULTS: Parents identified 139 activity performance issues (4.6 a child): 58.3% in self-care, 34.5% in play, and 7.2% in socialization and quiet recreation. We used paired t tests to demonstrate significantly improved performance and satisfaction with self-care and play activities when the children used the adaptive seating devices during the 6-week intervention phase. Three themes arose from the analysis of comments made by parents during Home Activity Log interviews: adaptive seating can have an enabling influence on the child, caregivers and family find adaptive seating useful, and the adaptive seating devices did not meet every family's needs. CONCLUSIONS: Parents reported that their young children with CP were more able to engage in self-care and play activities when using specific adaptive seating devices in their home. Parents indicated that their child's activity performance decreased after the seating devices were removed from their homes.

The impact of adaptive seating devices on the lives of young children with cerebral palsy and their families.

OBJECTIVE: To determine the parent-perceived effect of adaptive seating devices on the lives of young children with cerebral palsy (CP) (aged 2-7y) and their families. DESIGN: Baseline-intervention-baseline study. SETTING: Homes of participating families. PARTICIPANTS: Thirty parents and their children with Gross Motor Function Classification System level III or IV CP. INTERVENTIONS: Two special-purpose seating devices: 1 for sitting support on the floor or on a chair and the other for postural control on a toilet. MAIN OUTCOME MEASURES: Family Impact of Assistive Technology Scale (FIATS) and Impact on Family Scale (IFS). RESULTS: Thirty parents (29 mothers, 1 father) and their children with CP participated. Repeated-measures analysis of variance detected significant mean differences among the FIATS scores (F(1.4,40.6)=19.25, P<.001). Post hoc testing confirmed significant mean differences in overall FIATS scores between baseline and intervention and intervention and postintervention phases. The test of within-subject effects did not detect a significant change among IFS mean scores. CONCLUSIONS: The introduction of adaptive seating devices for young children who need support to sit had a meaningful, positive impact on child and family life. Removal of the study devices showed a concomitant negative impact on key aspects of child and family life. Environmental resources, such as seating and other assistive technology devices, may have an important role to play in the lives of young children with physical disabilities and their families.

Reliability of the family impact of assistive technology scale for families of young children with cerebral palsy.

OBJECTIVE: To examine the internal consistency and test-retest reliability of the Family Impact of Assistive Technology Scale (FIATS) when used to measure the perceptions of parents about important aspects of family life that may be influenced by their children's use of assistive devices. DESIGN: Repeated measure. SETTING: Homes of 50 participating families. PARTICIPANTS: Parents of young children with cerebral palsy. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The FIATS. RESULTS: Through an a priori item-reduction process, we reduced the length of the FIATS from 89 to 64 items. We retained 8 of the 9 original subscales. The 8 subscales included the following: autonomy, caregiver relief, contentment, doing activities, effort, family and social interaction, caregiver supervision, and safety. Remaining items of the removed subscale (technology acceptance) correlated well with the subscale total, but did not relate well to the FIATS total score. This construct was retained as a separate but noncontributing scale within the FIATS. The overall FIATS and its 8 contributing subscales had acceptable internal consistencies and test-retest reliabilities. CONCLUSIONS: The FIATS shows promise as a homogeneous and reproducible multidimensional measure of dimensions of child and family life. We plan further testing to examine the sensitivity and clinical meaningfulness of change scores on the FIATS.

Stability of playfulness across environmental settings: a pilot study.

The Test of Playfulness (ToP) was used in this pilot study to examine the stability of playfulness of 16 children with cerebral palsy (CP), aged 4-8 years, across three environmental settings: home, community, and school. Each videotaped play segment was scored using the ToP. The ANOVA statistic demonstrated a significant variance (p < 0.05) in the playfulness of the children across the 3 settings. The children were most playful at home and least playful at school (p < 0.05). The variability in playfulness across settings suggests that playful behaviors are influenced by factors external to the child. Eleven children were playful (achieving a positive ToP score) in at least one environment, which demonstrates that they had the capacity to be playful. Their play was supported in some settings and not in others. However, there was a lack of playfulness in 65% of the play segments suggesting that these children experience many barriers to their participation in play. Future research is needed to identify factors that help and hinder the playfulness of children with CP.

Toward development of effective custom child restraint systems in motor vehicles.

Traveling safely in motor vehicles can be challenging for many families who have young children with physical disabilities. Harnesses, simple adaptations, and special child restraint systems are available, but sometimes these devices do not adequately meet the unique postural support requirements of children with complex seating needs. Faced with no alternative, parents may choose to use the custom seating system from a wheeled mobility device to support their children in the family car. Transporting children in this way can increase the risk of motor vehicle-related injury because custom seating systems are not designed to meet the requirements of federal motor vehicle safety regulations. We studied whether assistive technology suppliers could build custom child restraint systems that met the crashworthiness requirements of a safety standard for production child restraint systems. We provided technical instructions to 10 suppliers from different parts of North America so they could each build a custom restraint system using a transit frame that we designed. This approach allowed suppliers to make custom seats that could be attached to the transit frame using special connection hardware. We crash tested the 10 custom child restraint systems to evaluate the effectiveness of our transit frame design and fabrication instructions. Six custom restraint systems met the dynamic performance requirements of the stringent Canada Motor Vehicle Safety Standard 213.3. The remaining four systems did not meet the compliance criteria due to the failure of postural belt assemblies or seat securement hardware. We recommend that future research include similar effectiveness studies to support the introduction of technical requirements for adaptive seating systems that improve occupant safety and are practical for wheelchair users, their families, and assistive technology professionals to implement.

Development of the new Family Impact of Assistive Technology Scale.

Children with physical disabilities generally require more care, attention and direct supervision than children without disabilities. Research demonstrates that these higher care-giving demands are associated with poorer psychological and physical health states for parents and other family members. Assistive technologies may have a role in mitigating caregiver stress and burden by improving functional performance, social interaction and autonomy in children with physical disabilities. In this paper, we report on the initial development and testing of the Family Impact of Assistive Technology Scale - a new measure designed to detect the multidimensional effect of assistive device use on families who have young children with disabilities. To study the content validity and face validity of the Family Impact of Assistive Technology Scale, we conducted structured evaluations of the proposed constructs and items with 14 clinical experts and parents of young children with cerebral palsy. Experts agreed that the Family Impact of Assistive Technology Scale contains the key variables needed to study the effect of assistive technology use on child and family functioning. Parents concurred that items on the preliminary version were relevant and clear. Further research is planned to estimate the reliability and other aspects of validity of the Family Impact of Assistive Technology Scale.

Community-based performance of a pelvic stabilization device for children with spasticity.

We developed a new type of pelvic stabilization device designed to help children be better positioned in their wheelchairs. The device replaces a wheelchair lap belt by providing firm anterior pelvic support for the seated user. We developed, tested, and evaluated instructions for installing, fitting, and using the device to study its performance in "typical" community settings in Toronto, Canada. Each of four therapists worked with a local rehabilitation technology supplier to install and fit the device onto an adaptive wheelchair seating system for a young child between 5 and 10 years of age. Therapists assessed the system's positioning effects, and children used the system for 12-14 days. Following the trials, therapists, parents, and children reported their levels of satisfaction with the performance of the device as compared with the children's existing lap belts. Participating therapists confirmed that the device provided better anterior pelvic stability for their clients. Parents felt that their children were generally better positioned in their seats and thought that the device was easy to use. Children had similar perspectives. Suppliers were confident that they could readily install the devices following the instructions provided. Based on the opinions of participants and our inspection of the installed devices, we proposed that minor modifications be made to the product design and instructions for installation, fitting, and use.

Impact of electronic aids to daily living on the lives of persons with cervical spinal cord injuries.

Structured interviews were used to evaluate the impact of electronic aids to daily living (EADL) on functional abilities and psychosocial well-being. The participants included 32 adults (26 men, 6 women; mean age of 39 years) with cervical spinal cord injuries. The experiences of 16 EADL users were compared with a control group of 16 nonusers, using the Functional Autonomy Measuring Scale, the Lincoln Outcome Measures for Environmental Controls, and the Psychosocial Impact of Assistive Devices Scale. Results show EADL users had significantly better performance (p < .05) than nonusers for instrumental activities of daily living and for 75% of 12 daily tasks. Many non-users had hands-free control of phones only, whereas EADL users had control over many other household devices, which optimized their independence. The psychosocial impact of this technology was very positive for competence, adaptability, and self-esteem. In conclusion, functional abilities were greater for a variety of daily tasks, and psychosocial impact was positive when EADLs were used.