Major lessons learned from a nationally-based community-academic partnership: addressing sibling adjustment to childhood cancer

Abstract

Prolonged, intensive treatment protocols for childhood cancer disrupt family routines and daily functioning, with effects extending to all family members. Despite their unique needs, siblings of children with cancer receive limited attention from community organizations and researchers. Community-academic partnerships may foster research that effectively assesses and addresses siblings' unmet needs. In this article, "community" refers to siblings of children with cancer who participate in SuperSibs!, a national nonprofit organization for siblings of children with cancer. This article (a) describes a replicable model for successful community-academic partnerships: the Sibling Research Advisory Board (SRAB) and (b) articulates "lessons learned" from this partnership, including documenting the ability to recruit a representative sample through a community organization. Lessons emerged from an iterative process of discussion and revision that involved all SRAB members. This case study describes approaches to overcoming practical obstacles in community-partnered research planning and implementation. To meet the common goals of identifying and addressing unmet sibling needs, SRAB partners learned to establish a common language, identify each team member's unique expertise, and acknowledge differences in approach (e.g., methodology, pace of accomplishment) between research and community service. SRAB's ability to recruit a representative sample was achieved through close collaboration with SuperSibs! and implementation of active recruitment strategies to overcome barriers to research participation. Protection of community member privacy was emphasized alongside methodological rigor. Community-academic partnerships enable research with high-need, hard-to-access populations. Proactively identifying and addressing common pitfalls of community-academic partnerships promotes community engagement and acceptability and facilitates high-quality research.