Identification to Intervention: A Perspective From Parents of Children With Cerebral Palsy

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. Methods 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. Results 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. Discussion 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, answer...
Source: Nursing Research - Category: Nursing Tags: ORIGINAL ARTICLES Source Type: research