Disability and Rehabilitation, 2005; 27(14): 849 – 861

The use and impact of assistive devices and other environmental modifications on everyday activities and care in young
 

children with cerebral palsy

 

SIGRID ØSTENSJØ1, EVA BROGREN CARLBERG2, & NINA K. VØLLESTAD3

1Faculty of Health Sciences, Oslo University College, 2Department of Woman and Child Health, Karolinska Institute, Stockholm, Sweden, and 3Institute of Nursing and Health Sciences, University of Oslo, Norway

Abstract

Purpose: The study describes use of assistive devices and other environmental modifications, and their impact on everyday activities and care in young children with cerebral palsy (CP).

Method: Ninety-five children (55 boys, 40 girls; mean age 58 months, SD 18 months) and their parents were studied using a cross-sectional design. The Pediatric Evaluation of Disability Inventory (PEDI) was applied to assess daily activities using the three measurement scales: functional skills, caregiver assistance, and modifications of the environment. Use of modifications was described related to the five severity levels of the Gross Motor Function Classifications System (GMFCS). Impact was rated on the Caregiver Assistance scale of the PEDI and on a five-point Likert scale.

Results: Out of the 1075 provided environmental modifications, 980 were in regular use to support mobility, self-care and social function among 84 children. The number increased with GMFCS levels; children at levels IV and V used 80% of the modifications, with large variations between the children at same level. Adaptations of housing and transportation facilitated effective use of assistive devices. Half of the parents rated the modifications to have moderate to very large effect on the child’s mobility, 25% on self-care skills, and 20% on social function. Furthermore, 65% reported that the modifications lightened the caregiving for mobility, 75% for self-care and 25% for social function. Functional independence and care demands often benefited from different types of modifications.

Conclusion: The variations in use and benefits of environmental modifications indicate need of comprehensive assistive technology assessments, including child factors, family factors, technology factors and service system factors.

Keywords: Assistive devices, environmental modification, cerebral palsy, mobility

Introduction

Cerebral palsy (CP) is the most frequent motor disability in childhood with a prevalence rate about 2 – 2.5 per 1000 live birth [1,2]. These children can have many neurological deficits that interfere with motor function and everyday activities [3 – 7]. Traditionally, intervention for CP was based on impairment-oriented models with the child as the only focus of intervention, denying the mediating role of the environment on functioning. In paediatric rehabilitation today, the environmental influences on development and disability are recognised. Multidimensionalconcepts, such as the International Classification of Functioning, Disability and Health (ICF) advances the assumption that human functioning is a product of a person’s interaction with the physical and social environment [8]. The concept of the environment in the ICF includes both the immediate environment of a child (e.g., products and technology, housing, and support fromthe family) and the more distant environments (e.g., services, societal attitudes, and policies). Facilitators are factors in a child’s environment that could improve functioning,whereas barriers are factors that through their presence or absence could limit functioning.

Each day a child must eat, groom, dress, maintain continence, change positions, move around, climb stairs, understand requests, communicate basic needs, solve problems, play, and interact with peers. A wide range of environmental modifications, including assistive devices can be used to support performance of daily activities. Assistive devices refer to any item, piece of equipment, or product system that is used to increase, maintain or improve functioning in people with disabilities [9]. Other environmental modifications such as grab bars, ramps, lifts, and adaptations of home interiors or exteriors are often delivered in conjunction with assistive devices. A unifying characteristic of any modification is its purpose to modify the way a child interacts with the immediate environment to maximize performance of daily life activities. There are three pivotal points of performance for which environmental modifications may be effective. The first point to the child’s functional independence, defined as ability to perform essential tasks in the areas of self-care, mobility and social function [10]. The second refers to the amount of caregiver assistance required to perform these activities [11]. The third point focuses on the demands associated with the day-to-day caregiving to the child [12]. Service systems that take part in provision of assistive technology need knowledge on how environmental modifications affect these aspects of functioning in daily life.

There is scarce systematic documentation of use and benefits of assistive devices and other alterations for everyday activities in children with disabilities. In a regional study, Korpela et al. [13] found that 77% of the families benefited from use of assistive devices for bathing, eating, dressing and toileting. The most common diagnosis in the study was CP. In CP, research has focused on the functional impact of single devices, such as adaptive seating and powered wheelchairs [14 – 18]. Thus, there is a lack of studies that describe the wide range of environmental modifications that are used for daily activities. The aim of the present study was to describe all assistive devices and other environmental modifications provided to support everyday activities in young children with CP, and the benefits of these modifications for functioning and caregiving. We posed the following questions:

To which extent is use of environmental modifications related to severity of CP?

How are types and numbers of environmental modifications distributed across activity areas of

mobility, self-care and social function?

What is the impact of environmental modifications on functional independence and care?

Methods

Sample population

This study followed a cross-sectional design. The participants were recruited from five counties in south-east Norway, comprising a total population of 1.7 million inhabitants. The study covered the birth year 1994 to 1999. All types of CP were included. The rehabilitation centres in the counties, in which most children with physical disabilities are registered, identified 189 children with CP (age range 2 – 7.5 years). Initially, a letter describing the study invited the parents of the 189 children to participate. Participants consisted of those 95 children whose parents returned the consent form. The studied children were younger and more severely impaired compared to the population of the study [4]. Ethical approval for the study was given by the Regional Committee for Medical Ethics.

Measurements

The Gross Motor Function Classification System (GMFCS) [19] was used to classify severity of CP. The GMFCS classify limitations in gross motor function at five severity levels, from level I with least limitations to level V with most limitations. Distinctions between the five levels are based on functional limitations and need for assistive mobility devices. To accommodate the changing functional disabilities at different ages, the system describes gross motor function for four age bands: less than 2 years, 2 – 3 years, 4 – 5 years, and 6 – 12 years. A summary of the expected gross motor function for children 6 – 12 years for each level is provided in Appendix I. The GMFCS has established validity and reliability [19 – 21].

The PEDI [11] was used to measure functioning in mobility, self-care and social function using the three measurement scales: functional skills, caregiver assistance, and modifications. The Functional Skills scale includes 197 activities from all the nine domains of the activity and participation dimension of the ICF [22], measuring if the activities can be performed or not (scored 1/0). The Caregiver Assistance scale assesses the required amount of help in seven areas of mobility, eight areas of self-care, and five areas of social function using a six point scale (see Appendix II). Summary scores are transformed into scaled scores (0 – 100) that provide an estimate of the child’s achievements of activities and amount of assistance. Both the Functional Skills and the Caregiver Assistance scale measure functioning with use of environmental modifications. The Modification scale is a frequency count of alterations to support performance in the same areas as for caregiver assistance. The PEDI has established validity and reliability [11,23 – 26].

The Classification of Technical Aids for Persons with Disabilities (ISO 9999) [27] was used to classify the environmental modifications. In this system, the products are classified according to their principal 850 S. Østensjø et al. function. Non-technical solutions are not included in this classification. In Norway, assistive devices and some modifications of the housing are provided free of cost from the National Insurance Scheme, if necessary to improve the child’s functioning or to be nursed at home [28]. The register for provision of assistive technology was used to get an overview of the children’s history of provided modifications from the Assistive Technology Centre in the county that administers the provision system. It was also used to validate the caregivers’ reports of environmental modifications in use or not in use.

Data collection

Parents (and the primary caregiver of the two children in residential care) completed questionnaires collecting information about sociodemographic factors and associated problems (such as epilepsy, learning difficulties and visual problems), before the parent interview. Everyday activities were assessed using the Norwegian translation of the PEDI [29]. During the interview the parents described all equipment and other environmental modifications in use or not in use related to the activity areas of the PEDI. To cover all alterations for everyday activities, mobility for longer distances was incorporated into the area of outdoor locomotion, all play activities into the area of peer play, and technical monitoring into the area of safety. Reasons for non-use were told in one’s own words. Second, the parents were asked to rate the amount of assistance the child required in each of the 20 activity areas, if no modifications were available, using the Caregiver Assistance scale of the PEDI. Finally, the parents estimated to what extent the modifications had improved the child’s functional independence and/or lightened the caregiving in mobility, self-care and social function. These estimates were done grading the impact on a five point scale (1= no, 2= minor, 3= moderate, 4 = large, 5= very large). Those that rated the impact of the modifications to be moderate to very large were asked to list modifications with significant contribution.

A trained physiotherapist in the children’s rehabilitation centre performed the GMFCS classification on the same day as the interview, except for one child. After the interview, each child’s history of provided devices was collected from the Assistive Technology centre in the county.

Data analysis

Nappies and fences in use after 4 years of age were coded as assistive aids, because few non-disabled children use this equipment regularly after this age. Preliminary inspections of the data showed that use of environmental modifications was identical for some activity areas and led to the decision that these areas could be combined or excluded. Dressing upper and lower body and also functional comprehension and expression were combined to one area. Problem solving was excluded because modifications used for communication covered this area. The number of modifications per child was counted for each of the remaining 17 areas. To sum up the use within the domains, any modification used across areas was only counted once. Statistical analyses were performed with the SPSS software (version 11.0). Because the data sets of modifications were not normally distributed, median and range were used for descriptive statistics and the Mann – Whitney U-test to detect differences between severity groups. The chi-squared test was applied to investigate associations between functional independence and caregiver demands. The parents’ reasons for no or limited use of the provided modifications were analysed by coding for emerging themes that supported or illuminated the quantitative findings.

Results

Characteristics of the children and their caregivers Main characteristics of the children and their disabilities are presented in Table I. The children’s need of caregiver assistance varied a lot across the activity areas of the PEDI, ranging from independent to totally dependent on help (Figure 1). In mobility, many children could move independently indoors whereas they needed a great amount of assistance for transfer activities. The children required extensive help in all areas of self-care, except for eating. Amount of assistance was more evenly distributed across the areas of social function.

Eighty-seven children lived with two parents/caregivers, six with their mothers and two in residential care. Most parents were born in Norway (91 and 92%, respectively, for the mothers and fathers) and only a few outside Europe (4 and 3%). About half of the mothers and fathers (51 and 47%) had finished education at university level. Most fathers worked full time (92%). Among of the mothers, 22% were working or studying full time, 44% worked part time and 34% were out of work. Whereas 16 of the 42 mothers with children classified at levels I and II worked full time, this was the situation for only three of the mothers of children at level IV and V (n=44). Twenty-one of these 44 mothers were out of work.

Overall use of environmental modifications

Eighty-six of the 95 children were provided with 1497 environmental modifications from the National Insurance Scheme; assistive devices and other alterations for everyday activities (n=1075), aids for therapy and training (n=299), and orthopaedic devices (n=123). The present study includes the 1075 modifications, which were provided to enhance everyday functioning among 84 children. About 9% were not in regular use. Thus a total of 980 modifications were used to support mobility, self-care and social function. The main reasons for limited use could be grouped in four categories. The first category referred to no or minimal need of the present device or need of a more appropriate aid. The phrase ‘no or limited need’ was often used for eating utensils, and the phrase ‘need of a more appropriate aid’ was frequently used for toilet and bathing equipment that did not fit the child. The second category was related to time demand and handling of the child. Devices for transfer was perceived as less practical and more time-consuming than lifting the child, and communication aids as less natural than using personal signs and gestures. The third category referred to housing conditions and transportation that hindered functional use of equipment in the bathroom and devices like walkers and powered mobility. The last category pointed at lack of immediate and ongoing training of the child and the parents for effective use of powered mobility, alternative communication, computers and toys.

Use of modifications in relation to severity of CP

In general, use of environmental modifications increased with GMFCS levels (Table II). The variations within the severity levels were large, except for level I, in which few modifications was used. As much as 80% of the modifications were found among children at levels IV and V. Numbers in use did not differ significantly between these two severity groups. Further comparisons showed that children at level II used more modifications than children at level I in all domains (Mann – Whitney U-test, P=0.001 to 0.042). No significant difference appeared between children at levels II and III, whereas children at level IV used more modifications than children at level III (P=0.048 to 50.001).

Use of modifications across areas of mobility, self-care and social function

Frequency and number of modifications in use across the activity areas of mobility, self-care and social function are shown in Table III. The majority of the modifications were used for car transfer, indoor and outdoor locomotion, eating and playing.

Mobility

The 440 environmental modifications used for mobility were classified in three classes and 27 categories of the ISO 9999. Grants for vehicles and rebuilding houses are not classified in this system. About 20 modifications were not in use; these were manual and powered wheelchairs, orthotic walking systems, tricycles, hoists, and portable ramps. Table IV shows the types of modifications in use related to the areas of mobility. Environmental modifications for mobility could be grouped in two categories: (1) mobility devices and (2) modifications of housing and transportation. The most commonly used mobility devices were walkers, manual and powered wheelchairs, tricycles, push-chairs, seating systems and car seats. Eight children used their walking system or powered wheelchair only at kindergarten or school because of housing or transportation conditions. Twenty-nine families have made some modifications of their housing such as elimination of thresholds, extra handrails for flights and stairs, alterations related to bathrooms, ramps, and a new or larger terrace. Further, 28 children had received grants to get a suitable van for transportation of the child and the mobility devices. However, twenty parents reported that the physical environment hindered incorporation of mobility devices into their daily routines.

Self-care

The 340 environmental modifications that were used to assist self-care activities were classified in four classes and 17 categories of the ISO 9999. Feeding tubes, nappies and laxatives are not classified in this system. About 40 assistive devices were not in use. The abandoned devices were cutlery or cups for eating, shower chairs and bath seats, stools for dressing, and toilet equipment. Table V shows the types of modifications in use related to the areas of self-care. A large number of devices, such as adaptive seating, eating and drinking utensils, and feeding tubes were used for eating. Adjustable seating systems and shower and changing tables were frequently used across activity areas. Bathing and toilet equipment were most often abandoned. Seven shower chairs and the same number of bath seats were not in regular use. Six toilet seats and eight toilet chairs were not used, although they were needed to improve bladder and bowel management. As many as 36 of the 63 children that had passed their fourth birthday used nappies, and 23 children used laxatives regularly.

Social function

The 287 environmental modifications used to support social function belonged to five classes and 18 categories of the ISO 9999. Sign language and gestures are not classified in this system. About 35 modifications were not in regular use. The non-used devices were aids for communication, sitting furniture, tables, computers, switches and toys for playing. Table VI shows the types of modifications in use related to the areas of social function. Twenty-one of the 35 children with severe limitations in communication used alternative or augmentative methods to support receiving messages and for expression. These methods could be grouped in two categories: (1) personal signs and gestures and (2) communication aids. Half of the communication aids was used only in kindergarten or school. Adapted seating was frequently used to increase sitting stability when playing with toys or on the computer. Playing activities were modified with use of switches to control objects, battery-activated toys, and adapted toys and games.

Impact of modifications on functional independence and care

Strong to moderate correlation was seen between amount of caregiver assistance and number of modifications in use for mobility, self-care and social function (rs= 0.78, 0.65 and 0.60, P50.001, respectively). Substantial reduction in need of caregiver assistance with use of modifications was reported mainly for indoor and outdoor mobility, and eating (Table VII).

The parents’ ratings of the impact of the modifications on functional independence and caregiving complemented these findings (Figure 2). To investigate how functional independence was related to care demands in mobility, self-care and social function, the data of the impact of modifications were dichotomised into benefits (moderate to very large impact) and no benefits (no or minor impact). In all domains, there was a strong association between the child’s independence and caregiver demands (w2 = 9.8 – 60.0, df = 1, P=0.002 to 50.001).

For mobility, about half of the 79 parents rated the modifications to have moderate to very large effect on the child’s functioning, and two-thirds reported similar effects on caregiver demands. The largest benefits were seen for children at GMFCS level IV, for which modifications improved mobility in 18 users and facilitated care in 19 of the 22 users. In the 22 users at level V, modifications lightened care in 18 and improved functioning in half as many. Seven out of 17 users at level II and four out of nine users at level III gained advantage for both functioning and care. Independence in mobility improved from use of walking systems, powered mobility and adapted tricycles, whereas devices such as seating systems, pushchairs, manual and powered wheelchairs, and suitable vans lightened the care. Powered mobility and modifications of the housing facilitated both the child’s mobility and caregiving.

For self-care, four out of five parents (n=65) reported no or minor effect of the alterations on the child’s performance, whereas three out of four judged the modifications to facilitate the care, at least moderately. Modifications improved self-care skills in nine of the 22 users at GMFCS level IV and facilitated care in 17 users. No user at level V improved their skills, whereas the modifications lightened caregiving in 19 of the 22 users. Out of seven users at level III, two improved skills and four benefited for caregiving. Only two out of 12 users at level II gained any advantage of modifications. Adaptive seating, eating utensils, and non-skid mats enhanced independence in eating and drinking, whereas seating systems, height adjustable bathtubs, and shower and changing tables facilitated caregiving in children that could not sit independently (levels IV and V).

For social function, the benefits were generally low. One out five parents (n=60) reported positive effects from the modifications. Benefits occurred in parallel for the child’s functional independence and caregiver demands. Five users out of 21 at level IV, four users out of 22 at level V, and only two users out of 17 at levels I – III gained advantage from modifications. Various sitting furniture, and adapted toys and games could enhance the child’s playing and the parent’s participation in play situations.

 

Discussion

The results showed frequent use of environmental modifications to support everyday activities. High proportions of the provided modifications were in use and functioned properly. The extent of use and non-use was within the range of previous reports in children [30,31]. Use of modifications increased with GMFS levels, and most of the modifications were applied among children at levels IV and V. This result support that severity of gross motor limitations is closely associated with use of assistive devices and other environmental modifications for daily activities [13].

Results from impact of modifications on functional independence and caregiving discoveredinteresting differences for mobility, self-care and social function. With regard to mobility, the benefits were significant for both functioning and care. For indoor and outdoor locomotion, half of the caregivers reported reduced amount of assistance by one or more levels on the Caregiver Assistance scale under the environment-adjusted conditions. The same amount perceived that devices such as orthotic walkers, powered mobility and adapted bikes had improved the child’s overall mobility. These findings show that specific mobility devices can offer children with severe limitations in self-mobility alternative means of independent mobility. Wright et al. [32] observed that 11 of the 20 studied children with severe CP succeed to walk at least 30 metres with an orthotic walker, while the rest partially completed the distance after 12 months training. Bottos et al. [14] reported that 21 of 27 of children with severe motor deficiency were able to operate a powered wheelchair with little or minimal assistance after a 6 – 8-month training. Other devices such as movable seating systems, pushchairs and manual wheelchairs were listed to facilitate care. Pushing the child in a device represents an alternative mean of dependent mobility that implies less physical strain than carrying the child.

In contrast to the considerable benefits of mobility devices, the benefits of devices for transfer were limited. Equipment such as hoists, portable ramps, and height adjustable technology was often in irregular use, and using them seemed less practical and more time-consuming than lifting the child. Statements like ‘we have to use them when she gets heavier’ and the high level of caregivers assistance for transfer activities, indicate that transfer in and out of chairs, toilet, bed, bathtub, and car are critical activities for care burden, and therefore need to be focused during childhood.

The usability of devices for mobility and transfer seemed to be related to housing and transportation conditions. About one third of the families had done some modifications of their home and/or van, yet many still experienced physical barriers in the immediate environment. These results support previous findings that more attention must be paid to housing and transportation circumstances to support independence and care in children with motor disabilities [33,34].

For self-care, the impact of the modifications on caregiving was much larger than the impact on functional independence. Most children required extensive assistance to perform self-care activities. Eating was the only area which modifications could reduce the amount of assistance. Beneficial effects were reported for adjustable seating systems and eating and drinking utensils. These finding support previous studies that adaptive seating could improve eating abilities and reduce caregiver support in some children with limitations in sitting [16,17]. However, small improvements in self-feeding and drinking skills can lead to increased feeding time [18]. Impaired oral-motor function is a another common feature of children with severe CP, which can be associated with extended feeding time, fatigue during eating, food refusal and malnutrition [35,36]. Use of feeding tubes appeared to reduce care burden. Statements like ‘no longer pressing the child to eat more and faster’ suggest reduced intensity of care and greater satisfaction with the feeding process. However, all the parents remarked that tasting food or eating part of the meals orally was important for the stimulation and the interaction with the child.

Postural support devices that function properly seemed to be essential for functional ndependence and care in many daily activities [16,17,37]. Dissatisfaction and non-use of toilet equipment, that was needed, demonstrate the difficulties of finding a device that fit the child and the activity [37]. Frequent use of nappies after 4 years of age and laxatives support that urinary incontinence and constipation is a major issue in the basic care of many children with CP [37,38]. The need of toilet equipment was also confirmed by high return to the Assitive Technology centres and provision of other models. Inadequate sitting comfort and discomfort when seated are likely explanations for the bad match between the child and toilet devices. Zhang et al. [39] suggested that comfort and discomfort are different but related entities. Whereas comfort is associated with relaxation and well being, discomfort is associated with fatigue and biomechanical factors. Toilet systems that fall in short in addressing positioning needs could hinder toilet training [37]. Using the ICF classifications: body functions (b), Activities and Participation (d), and environmental factors (e) [8], we showed that lack of appropriate toilet equipment (e 1151)* was a barrier for bladder and bowel management (d5300 and d5301) that could lead to increased bladder problems and constipation (b620 and b525).

For social functions, fewer parents experienced positive impact of modifications on both functional independence and care. This finding indicates that it may be more difficult to capture the effect of modifications because of the complexity of activities such as communication and playing. Many of the functionally non-speaking children did not use alternative or augmentative communication. Limited use could be due to our categorisation of alternative communication, not including facial expression and body movements that are usual modes of communication for children with severe expressive impairments [40]. Another reason could be the children’s difficulties to produce consistent and readable movements and vocalisation [41]. The result that half of the provided communication aids were used in kindergarten and schools, and not at home, indicate that parent – child communication was dominated of natural methods, such as vocalisation, signs, and gestures. Communication with aids requires new skills of the caregivers and developing of positive attitudes toward the devices [42,43]. Incorporation of communication aids into everyday life call for involvement of the families in development of communication systems and in ongoing training.

Play is viewed as a vital part of daily life for all children. In a developmental context, play is not recreation, but seen as a fundamental aspect of learning that encompasses engagement in purposeful activities with objects or toys alone or in context with others [44,45]. Assistive technologies can offer an opportunity to those children with CP that have difficulties in playing with toys or are not able to play at all. One fourth of the children used switches to control battery-powered toys, tape recorders and computers. This basic assistive technology could have an important role in normalising the early life experience of young children with motor, sensory and cognitive impairments [46,47]. In addition, adapted toys for sensory stimulation and manipulation, and computer games enhanced playing in some children. Efforts to understand the effects of computer technology on children’s play are just starting to emerge [48]. The interactive capabilities of computer software extend this tool to a ‘virtual play environment’ that is highly child-centred.

The Caregiver Assistance scale showed high parental participation in playing. Parents of children with disabilities have to mediate the environment to let the child learn through active exploration and interaction with materials and other children [49]. Providing the child with adequate toys and devices is only one among several contextual factors that can influence playing. Positioning the child, the toy itself, how to interact and use material, attitudes, and limited time because of the child’s other needs are all factors that could explain the relatively small benefits of modifications [49 – 51]. However, we are in lack of knowledge on how playing material interact with other contextual and personal factors to facilitate social interaction and play in children with severe motor and cognitive impairments.

Conclusions

The study documented a clear relation between use of environmental modifications and GMFCS levels. The modifications were distributed across the activity areas of the PEDI, however there were considerable variations in use and benefits. Functional independence and caregiving demands often benefited from different types of assistive devices. Matching devices with the child, the activity and the caregivers was identified as a challenge. Furthermore, more attention must be paid to housing and transportation circumstances to support use of assistive devices.

The results suggest use of the GMFCS for planning of assistive technology services and the PEDI to describe the use of environmental modifications for everyday activities. Since the PEDI measures functioning including modifications, other tools are needed to assess the effect of environmental changes. The parents had a great deal of impact on use and benefits and need to be involved in comprehensive assistive technology assessments including child factors, family factors, technology factors and service system factors. Evaluation of needs, use and benefits of modifications is an ongoing process that should be integrated into rehabilitation plans for children with moderate to severe CP.

The study was limited in being cross-sectional and descriptive. The results need to be expanded upon within studies designed to examine the specific influence of modifications, using a multidimensional concept, such as the ICF. Additional qualitative studies would help us to better understand the observed differences in use and benefits of modifications.

Acknowledgements

We are grateful to all the children and the parents who participated. We acknowledge the contribution of the assistive technology centres and the habilitation centres in Akershus, Buskerud, Oslo, Vestfold and Østfold, and particularly the physiotherapists Wenche Bjorbækmo, Bente Molin Kongsga˚rd, Jorun Longva, Gro Thorbjørnsen and Berit Weum. The Norwegian Ministry of Education and Research Affairs provided a grant for this research.

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