Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis.

ABSTRACT:

Introduction

Sickle cell disease (SCD) is a monogenic blood disorder characterized by neurodevelopmental delays. Most children with SCD do not receive developmental services due in part to disparities in care access. To inform the design of a developmental intervention for children with SCD, we evaluated factors that influence access to developmental services.

Methods

Interview data were collected from educational and medical providers (n = 15) and caregivers (n = 15) of children aged 4-6 years with SCD at a single center and the surrounding area. Caregivers completed questionnaires about their child's background/medical history, caregiver depression (PROMIS SF v1.0-8a), and caregiver knowledge of early development (Knowledge of Infant Development Inventory). A

SUBMITTER: Tamboli M 

PROVIDER: S-EPMC11968433 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature