Improving Support to Siblings of Children With Cancer Through a Community-Academic Partnership

Abstract

Objective: Siblings of children with cancer are a psychosocially at-risk group and have unmet needs that are typically not addressed within traditional hospital settings. The current study implemented a community-academic partnership model with SuperSibs—a nationwide, community-based, no-cost program for siblings of children with cancer, powered by Alex’s Lemonade Stand Foundation—to evaluate and improve their sibling resources. Method: Researchers and Alex’s Lemonade Stand Foundation staff partnered to plan and conduct research with siblings regarding desired support resources, with attention to the acceptability and feasibility of implementation. Siblings (N = 23) provided qualitative data regarding suggestions for new resources and feedback on existing and proposed SuperSibs programs. Qualitative data were analyzed using applied thematic analysis. Results: Siblings emphasize the importance of support that is meaningful, age-appropriate, consistently delivered and that offers autonomy. Siblings recommended revised SuperSibs program initiatives, such as yoga instruction, education for parents and teachers, and game-based interventions. Collaboration throughout the course of the research between researchers and Alex’s Lemonade Stand Foundation staff yielded improvements to SuperSibs programming. Conclusion: Community-academic partnerships are useful in conducting impactful research that is directly translatable into community-based support. Recommendations continue to inform resource development and evaluation goals.

Implications for Impact Statement

Siblings of children with cancer are a psychosocially at-risk group that receives limited support within traditional hospital settings. This project implemented a community-academic partnership to design and conduct qualitative research aimed at improving community-based sibling support resources from SuperSibs, a free program offered by Alex’s Lemonade Stand Foundation. Findings suggest that the community-academic partnership model has strong potential to improve evidence-based support for siblings.

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