Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.

Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.

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

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.