Early diagnosis of cerebral palsy (CP) promotes early intervention, symptom management, and support for parents. There is little evidence showing whether parents actually receive these benefits.
The objectives of this study were to explore and describe the experiences of parents of children with CP, including their journey to diagnosis, access to services and resources, and what they would want other parents or healthcare providers to know and understand about their experiences.
Using a qualitative descriptive design, semistructured interviews were conducted from January 2021 to April 2021. A purposive sampling method with a snowball effect was used to recruit parents through therapists, a children’s hospital, a pediatric rehabilitation center, and social media CP support groups. An inductive approach to content analysis was used to categorize the data. ATLAS.ti was employed to arrange and code data.
Three themes emerged: (a) Something Was Off: I Simply Didn’t Know; (b) Coping With the Unknown: Uncharted Territory; and (c) What We Needed Then and Now: Advocacy, Education, and Research.
Parents emphasized a lack of knowledge of developmental milestones and their inability to recognize delays in their children. Healthcare providers dismissed persistent unexplained symptoms and developmental delays; parents were expected to “watch and wait” for their child to catch up. The CP diagnosis, although delayed, validated their concerns and gut intuitions about their child’s symptoms and connected them to early intervention services and specialty care. Therapists became a lifeline for parents, providing education, answering questions, obtaining adaptive equipment, and offering care management strategies. Parent support groups provided emotional support, lessened parent isolation, and offered realistic hope. Parents reported a need for an earlier diagnosis and earlier access to services, direct and open communication about CP diagnosis, and follow-up phone calls after the diagnosis. They also asked for a tip sheet to guide them after the diagnosis.