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

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Alonso Soriano, C ; Hill, Elisabeth L. ; Crane, Laura (2015)

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.
  • References (18)
    18 references, page 1 of 2

    Ahern, K. (2000). "Something is wrong with my child": A phenomenological account of a search for a diagnosis. Early Education & Development, 11(2), 187-201. doi: 10.1207/s15566935eed1102_4

    Blank, R., Smits‐Engelsman, B., Polatajko, H., & Wilson, P. (2012). European academy for childhood disability (EACD): Recommendations on the definition, diagnosis and intervention of developmental coordination disorder (long version). Developmental Medicine & Child Neurology, 54(1), 54-93. doi: 10.1111/j.1469-8749.2011.04171.x

    Crane, L., Chester, J., Goddard, L., Henry, L.A., & Hill, E.L. (2015). Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism doi: 10.1177/1362361315573636

    Denckla, M. B. (1984) Developmental dyspraxia: the clumsy child. In: Middle Childhood: Development and Dysfunction (eds M. D. Levine & P. Satz), pp. 245-260. University Park Press, Baltimore, MD, USA.

    Forsyth, K., Howden, S., Maciver, D., Owen, C., Shepherd, C., & Rush, R. (2007). Developmental coordination disorder: A review of evidence and models of practice employed by allied health professionals in Scotland - summary of key findings. NHS Quality Improvement Scotland.

    Hadders-Algra, M. (2010). Variation and variability: key words in human motor development. Physical therapy, 90 (12), 1823-1837.

    Hamilton, S. S. (2002). Evaluation of clumsiness in children. American family physician, 66(8), 1435-40.

    Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2014). Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom. Journal of Autism and Developmental Disorders, 1-12. doi: 10.1007/s10803-014-2161-3

    Maciver, D., Owen, C., Flannery, K., Forsyth, K., Howden, S., Shepherd, C., & Rush, R. (2011). Services for children with developmental co‐ordination disorder: the experiences of parents. Child: care, health and development, 37(3), 422-429. doi: 10.1111/j.1365-2214.2010.01197.x

    Missiuna, C., Moll, S., King, S., King, G. & Law, M. (2007). A trajectory of troubles: parents' impressions of the impact of developmental coordination disorder. Physical & Occupational Therapy in Pediatrics, 27, 81-101.

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