Children with developmental coordination disorder (DCD) have a motor impairment that affects their ability to perform everyday tasks. Although severity of motor impairment can be measured, methods for assessing the perceived impact of DCD on daily activities have not been established. The purpose of this study was to use a child-focused approach to understand children’s views of the impact of DCD on the activities that they perform daily. Children aged 5-10 years, referred with coordination difficulties to occupational therapists, were assessed using the Movement Assessment Battery for Children: children who received scores below the 15th percentile were included. The Perceived Efficacy and Goal Setting System (PEGS), a pictorial scale validated as a method for engaging children with disabilities, was administered to examine the children’s perceptions of their competence in performing everyday activities and to identify goals for therapy. Parent and teacher concerns were collected by a questionnaire. The children, parents and teachers shared many concerns about the impact of DCD on physical tasks and on academic activities such as handwriting. The children expressed additional concerns, however, about their ability to perform daily self-care tasks and leisure activities, which were rarely recognised by the adults. Children require specialised methods to enable them to express their views and the PEGS appears to be suitable for this purpose.

Occupational Therapy with Children

Children’s Perceptions of the Impact of Developmental Coordination Disorder on Activities of Daily Living Carolyn Dunford, Cheryl Missiuna, Eddy Street and Jo Sibert

Introduction Children with developmental coordination disorder (DCD; American Psychiatric Association 2000) have difficulties with everyday tasks that require motor coordination, such as handwriting, dressing and sports. DCD can severely affect school performance, self-esteem and age-appropriate activities of daily living (Losse et al 1991, Hellgren et al 1993, Soorani-Lunsing et al 1993, Schoemaker et al 1994). In most instances, coordination difficulties persist into adulthood and have negative secondary consequences (Rasmussen and Gillberg 2000, Cantell and Kooistra 2002). A recent survey of 134 paediatric occupational therapy service providers throughout the United Kingdom showed that children with DCD comprised 30.4% (11,817) of the total caseload of children receiving occupational therapy services and 61.7% (6,719) of the total number of children who were waiting for assessment (Dunford and Richards 2003). Although many children may experience coordination difficulties, a diagnosis of DCD can only be made if the children meet four diagnostic criteria, as outlined by the American Psychiatric Association (2000). These are:

A. Performance in daily activities that require motor coordination is substantially below that expected given the person’s chronological age and measured intelligence. B. The disturbance in criterion A significantly interferes with academic achievement or activities of daily living. C. The disturbance is not due to a general medical condition (e.g. cerebral palsy, hemiplegia or muscular dystrophy) and does not meet criteria for a Pervasive Developmental Disorder. D. If mental retardation is present, the motor difficulties are in excess of those usually associated with it (p53).

A recent study investigating the application of the diagnostic criteria found that many of these children may not, in fact, meet all the criteria (Dunford et al 2004). Methods of applying diagnostic criteria in clinical practice have not been clearly described (Geuze et al 2001) and require further investigation. The present study furthers the understanding of one of the diagnostic criteria that is of particular relevance to occupational therapists, criterion B. Criterion B requires the clinician to establish whether the child’s motor coordination difficulty ‘significantly interferes with academic achievement or activities of daily living’.

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Neither academic achievement nor activities of daily living are defined further in the most current Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association 2000). As a result, criterion B has been interpreted in a multitude of ways and little attention has been given to it in many studies (Barnett and Henderson 1998, Geuze et al 2001). In the case of older children with DCD, the criterion regarding impact on academic achievement is usually easy to satisfy; however, younger children may not yet be showing evidence of academic difficulties. If early identification is to be facilitated, there must be a way of establishing whether their motor coordination difficulties are having an effect on other activities of daily living (Geuze et al 2001, Henderson and Henderson 2002). Assessing the impact of motor impairments on everyday tasks is a core occupational therapy skill within the context of family-centred practice (Hanna and Rodger 2002). Children’s right to express their views is enshrined in the United Nations Convention on the Rights of the Child (United Nations 1989) and most therapists are willing to listen. However, obtaining the perspectives of young children can be very challenging. Parents are a valuable and reliable source of information (Glascoe 2000) and, thus, parents are often used as proxies for their children’s views. Children and young people have clearly stated a desire to be actively involved in decisions regarding their health and its management (Turner 2003). Furthermore, research has shown that adults and children do not always have the same priorities for intervention (McGavin 1998, Pollock and Stewart 1998). The child needs to be able to share his or her perspective with the therapist if they are going to be collaborators in identifying goals for intervention (Clark and Bell 2000). Although some might have assumed that young children were unable to participate in this process, recent research suggests otherwise (Missiuna and Pollock 2000). Sturgess et al (2002) reviewed self-report instruments that could be used with children and identified several measures that were valid and reliable with younger children. Instruments are available that help young children to self-report their perceptions of pain (St-Laurent Gagnon et al 1999), quality of life (Bouman et al 1999) and perceived competence (Harter and Pike 1984). There have not previously been tools to assist children to share their perspectives of the impact of their disability on everyday activities. Newer methods are needed that give careful attention to the language that is used in the questions, provide concrete stimuli such as pictures and present clear response options (Missiuna et al, in press). One instrument that uses these techniques and enables children with disabilities to share their perspectives is the Perceived Efficacy and Goal Setting System (PEGS; Missiuna et al 2004). The PEGS resulted from integrating All About Me (Missiuna 1998), a pictorial self-efficacy measure that focused on 24 tasks that children were expected to perform during any school day, with a goal-setting approach that was similar to that used in the Canadian Occupational Performance Measure (COPM; Law et al 1998). The latter

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tool is recognised worldwide as a method that assists clients to identify daily occupational performance issues that are of concern to them. Although the COPM can be modified for use with children 9-10 years of age, children younger than that have difficulty in responding to its abstract format. A pilot study used the PEGS with 37 children with disabilities who were 5-9 years of age and showed that the children were able to report their perceptions of competence in performing everyday tasks and were able to identify occupational performance issues that were priorities for intervention (Missiuna and Pollock 2000). The purpose of the present study was to use a new method to further the understanding of children’s views of the impact of DCD on their daily lives and to compare these views with those identified by parents and teachers. In so doing, it was anticipated that new knowledge about ways of measuring criterion B in children identified with DCD would be gained.

Method Sample Children aged 5-10 years who had been referred with coordination difficulties to an occupational therapy team in Gwent, Wales, over a period of 6 months were included in this study. Ethical approval was received from the Gwent Local Research Ethics Committee and anonymity and confidentiality were well assured. The referrals to this study included all children who did not clearly have a new or emerging neurodevelopmental diagnosis. The source of referral is shown in Table 1. During the initial screen, the children were seen by a paediatrician to eliminate any other medical causes for their motor difficulties: children with obvious diagnoses other than DCD were excluded (n = 9) as outlined by criterion C of the diagnostic criteria for DCD (American Psychiatric Association 2000). In order to apply criterion D, information on the child’s general level of cognitive ability was sought. Where possible this was done by using psychometric data that were available to the researchers: the Wechsler Intelligence Scale for Children (WISC) and the British Ability Scales (BAS). Those children found to have verbal IQ (WISC) or general cognitive ability level (BAS) within one standard deviation from the norm (standard

Table 1. Referral source by profession Profession Number Paediatrician ...............................................................................11 ......... School health nurse .....................................................................10 ......... Education......................................................................................5 ......... General practitioner.......................................................................3 ......... Speech and language therapist ......................................................2 ......... Health visitor.................................................................................2 ......... Orthopaedic surgeon .....................................................................1 ......... Physiotherapist..............................................................................1 ......... Total ...........................................................................................35 .........

Table 2. Description of the sample Age

Movement Assessment Battery for Children