ArticlePediatric blood & cancer2024
"I was very scared when I found out my son had sickle cell": Caregiver knowledge and attitudes toward early intervention for young children with sickle cell disease: Implications for policy and practice from a multi-site study.
Article in Pediatric blood & cancer, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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The trial behind it
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Who cites it
4 citing papers in PubMed.
- Adapting a school readiness intervention for children with sickle cell disease: an intervention mapping for adaptation approach.Frontiers in public health · 2026Article
- Low depression rates among caregivers of young children with sickle cell disease: a rapid report.Journal of sickle cell disease · 2026Article
- Early Intervention as a Way of Reducing Neurocognitive Delay in Pediatric Sickle Cell Patients.Cureus · 2025Review
- Community Support for Caregivers of Children With Sickle Cell Disease: A 3-Year Process Evaluation.Advances in rehabilitation science and practiceArticle
Corrections and comments
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Authors and funding
13 authors.
Funding
Abstract
objectiveThis study characterized caregivers' beliefs related to early intervention services for children with sickle cell disease (SCD) to gain an indepth understanding of caregivers' experiences and desires for early intervention services.
methodsBoth qualitative and quantitative data were collected from caregivers of children aged 0-4 years with SCD across two sites in the United States. Caregivers completed the Knowledge of Infant Development Inventory, a custom survey about their experiences with early intervention, and a qualitative interview.
resultsA total of 127 caregivers were approached, 47 participated in surveys, and 20 completed interviews. Caregivers expressed varying levels of confidence and understanding of developmental milestones across sites. Interviews highlighted three main themes: fear of SCD-related complications, variable buy-in to early intervention, and the importance of provider-caregiver relationships. While some caregivers appreciated early intervention, others questioned its necessity. Caregivers communicated interest in connecting with other families facing similar challenges, emphasizing the need for increased awareness of available resources.
conclusionsFear about their child's well-being was expressed by many caregivers, emphasizing the need for a supportive healthcare team that can help families connect with preventive interventions. While about a quarter of children had been referred to rehabilitation services, caregivers were unaware of the elevated risk for developmental delay, which diminished caregiver interest in participating in programs like early intervention. This study underscores the importance of addressing knowledge gaps and overcoming barriers to enhance care for families affected by SCD.
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