Community Support for Caregivers of Children With Sickle Cell Disease: A 3-Year Process Evaluation.

ABSTRACT:

Background

Sickle cell disease (SCD), the most common monogenetic childhood disorder, imposes a significant psychosocial and financial burden on caregivers of affected children. Despite the availability of community-based support programs, few are tailored to the specific identified needs of caregivers managing SCD. This study presents a comprehensive program evaluation of a community-partnered caregiver retreat hosted by the St. Louis Sickle Cell Association (SCA).

Methods

Researchers collaborated with the SCA to evaluate their annual weekend-long retreat. Year 1 employed a cross-sectional design using the General Self-Efficacy Scale. Year 2 implemented a pre-post design using the Family Empowerment Scale. In Year 3, a mixed-methods design included the Social Support Survey

SUBMITTER: Larson SC 

PROVIDER: S-EPMC12554937 | biostudies-literature | 2025 Jan-Dec

REPOSITORIES: biostudies-literature