Developmental coordination disorder: "It's not on people's radars… They're not interested".

Area of Science:

• Neurodevelopmental Disorders
• Child Psychology
• Family Studies

Background:

• Developmental Coordination Disorder (DCD) affects 5-6% of children, yet its impact across the lifespan and life domains is under-researched.
• Existing research primarily focuses on motor skill deficits, neglecting broader life consequences.

Purpose of the Study:

• To explore the lived experiences of parents raising children diagnosed with DCD.
• To understand the multifaceted impact of DCD on children and families.
• To identify gaps in knowledge, support, and care for individuals with DCD.

Main Methods:

• Conducted 10 online semi-structured interviews with parents of children with DCD.
• Recruited participants nationally and internationally to explore cultural variations.
• Utilized inductive thematic analysis to interpret interview data on primary care, education, social, and well-being experiences.

Main Results:

• Key themes included the profound impact of DCD on families, widespread lack of awareness, and insufficient support systems.
• Parents reported feeling abandoned and compelled to become advocates for their children.
• The diagnostic process and its implications were significant factors in parental experiences.

Conclusions:

• Children with DCD and their families encounter substantial obstacles in obtaining necessary help and support.
• There is a critical need for integrated support across healthcare, education, and community sectors.
• Developing evidence-based training informed by parental experiences is essential for effective cross-sector care.