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

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).

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 Instrument, 2 focus groups, and 6 interviews. Data were analyzed using descriptive and inferential statistics and thematic analysis.

Findings revealed no significant group-level empowerment changes in Year 2, though individual improvements were noted. In Year 3, caregivers reported strong emotional and social support but low tangible support. Thematic analysis identified 5 themes: SCD awareness gaps, caregiving burden, psychological toll, support variability, and caregiver-identified solutions. Caregivers emphasized a need for peer connection, mental health support, practical advocacy training, and expanded access to retreat programming.

This program evaluation demonstrates the meaningful support provided by community-based caregiver retreats while highlighting areas for enhancement. The findings underscore the value of systematic evaluation in identifying program strengths and opportunities for improvement to better serve caregiver needs.

Community-based partnerships can enhance support for caregivers of children with SCD. This evaluation identifies essential program components and demonstrates how systematic assessment can inform program development to better address unmet caregiver needs and advance health equity.