Journeying with developmental coordination disorder: The family experience.

Abstract

Developmental coordination disorder (DCD) is a neurodevelopmental disorder impacting 5% - 6% of children and continues into adulthood for 50% - 70% of cases. Despite the multidomain and lifelong influence of this disorder, little consideration has been given to the experiences of the family. Post-diagnostic support has been recommended however, the specific areas requiring support remain vague. This study described the familial experiences of living with a member diagnosed with DCD. A qualitative descriptive study using a phenomenological approach allowed insight into the lived experiences of families journeying with DCD. Forty-four participants representing 8 countries participated in an online questionnaire with 12 participating in an online semi-structured interview. Themes generated reveal that obtaining a diagnosis and navigating the healthcare and education systems can be troublesome. Upon diagnosis, families tend to experience positive emotions such as relief. However, the daily challenges soon result in dominant negative emotional responses. DCD places significant financial burdens on families and impacts marital, parental and sibling relationships. Families often feel isolated from their communities as DCD is poorly understood. DCD places families at risk as daily struggles require support which targets identified motor, cognitive, academic and emotional challenges. Creating awareness in society, education and healthcare would alleviate continual frustrations. This study provides insight into the wide-ranging impact that DCD has on families so that individualised support can be tailored, and general awareness raised.