Abstract
Receiving a diagnosis of a developmental disorder has a major impact on an individual and their family. However, little is known about parental experiences of having a child diagnosed with developmental coordination disorder (DCD). In this study, 228 parents completed an online survey about their experiences of obtaining a diagnosis of DCD for their child in the United Kingdom. Results demonstrated that, on average, a diagnosis was confirmed two and a half years after parents initially sought professional help in relation to their child's motor difficulties. Satisfaction with the overall diagnostic process was mixed: 45% of parents were dissatisfied (26%=very dissatisfied, 19%=quite dissatisfied) and 39% were satisfied (16%=very satisfied, 23%=quite satisfied). Four factors were predictive of parental satisfaction with the overall diagnostic process: the stress of the diagnostic process; the manner of the diagnosing professional; satisfaction with post-diagnostic support; and the time taken to get a diagnosis. Post-diagnostic provision was the area in which parents reported most dissatisfaction; an unsurprising finding given that 43% of parents were not offered any practical help or support during the diagnostic process or in follow up appointments (although there was an indication that this was improving). Based on these findings (as well as previous research), we propose three key areas in which improvements in the diagnostic process for DCD are needed: (1) greater awareness about DCD in order to facilitate earlier recognition; (2) implementation of clear referral pathways, to reduce the time taken to receive a diagnosis; and (3) increased post-diagnostic support within health and educational systems.
Highlights
Developmental coordination disorder (DCD) is characterized by significant impairments in the acquisition of motor skills that interfere with activities of daily living, and/or academic achievements (Zoia, Barnett, Wilson, & Hill, 2006)
2.1 Participants Parents/guardians who have a child/children diagnosed with DCD, or who fit the criteria for DCD were invited to participate
255 parents completed the survey, 27 cases were removed from the final sample: two cases were adults with DCD who completed the survey themselves; one respondent was diagnosed outside the UK; five cases described their child’s age at various stages of the diagnostic processes inconsistently, making the process chronologically impossible; and 19 respondents had not received an official diagnosis of a motor difficulty for their child
Summary
Developmental coordination disorder (DCD) is characterized by significant impairments in the acquisition of motor skills that interfere with activities of daily living (e.g., dressing, using utensils), and/or academic achievements (Zoia, Barnett, Wilson, & Hill, 2006). Various labels have been applied to the condition, including ‘clumsy child syndrome’ (American Psychiatric Association, 1987), dyspraxia (Denckla, 1984) and Specific Developmental Disorder of Motor Function (World Health Organization, 1992), ‘developmental coordination disorder’ is the term favoured internationally (American Psychiatric Association, 2013; Polatajko, Fox, & Missiuna, 1995; Sugden, Chambers, & Utley, 2006) Parents notice their child’s motor difficulties from an early age (Maciver et al, 2011; Missiuna, Moll, King, King, & Law, 2007; Pless, Persson, Sundelin, & Carlsson, 2001; Rodger & Mandich, 2005). The routes to diagnosis vary from country to country but should always involve the collection of information, past and present, about the child from a range of perspectives (including input from a medical practitioner)
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