Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD)

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.

Keywords: Developmental coordination disorder; Diagnosis; Dyspraxia; Experiences; Parents; Satisfaction.