SPARCCC: A Community-Academic Partnership Addressing the Needs of Siblings of Children with Cancer

Melissa A. Alderfer, PhD, Sandi Ring, MS, and Kristin A. Long, PhD, on behalf of the Child and Family Health and Cancer SIGs

Community-academic partnerships are the backbone of developing and producing research that is highly relevant to those we most want to serve. The Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC), established in 2005, is a committed community-academic partnership with the goal of advancing advocacy, research, and care of siblings of children with cancer. Over 270,000 children in the United States today have a pediatric cancer diagnosis. Based upon 2017 census data regarding family composition, this means that approximately 243,000 siblings are currently living with pediatric cancer in their family. Family-centered care in pediatric oncology needs to attend to these brothers and sisters who too often feel insignificant, forgotten, abandoned, angry, sad, and frightened for long periods.

SPARCCC has three related goals. First, we facilitate research, both directly and indirectly, to: a) describe the sibling experience, identify siblings’ needs, and examine short- and long-term outcomes within their social ecology; and, b) develop, implement, evaluate, and disseminate effective screening tools and interventions. Second, we are committed to providing education to professionals and the general public through dissemination of research findings. Finally, we support advocacy and the provision of screening and adequate care for siblings and families of children with cancer, based on a combination of clinical expertise and research findings. Our Board is comprised of sibling and parent stakeholders, professionals from community organizations serving siblings, academic researchers, and sibling advocates. Our current community partners include SuperSibs, powered by Alex’s Lemonade Stand Foundation and the Children’s Oncology Camping Association-International.

SPARCCC recently began distributing an electronic newsletter, SPARCCC Notes, with the goal of sharing information and resources relevant to advocacy, research, and care of siblings of children with cancer. The inaugural issue was distributed in October and included updates on SPARCCC initiatives, described opportunities to become involved in upcoming projects, provided resources for supporting siblings, showcased a sibling story, and described two sibling camp programs. Our initial plan is to publish this newsletter three times per year and archive old issues on our website. To be added to the mailing list, please email siblingpartnership@gmail.com.

Our community-academic partnership model facilitates high-quality research that translates into care with direct implications for policy. To promote this model of collaboration, SPARCCC (then called the Sibling Research Advisory Board) published a brief report describing the lessons we learned along the way including the need to establish a common language, identify each team member’s unique expertise, and acknowledge differences in approach between research and community service. We strongly believe that proactively identifying and addressing common pitfalls of community–academic partnerships helps promote community engagement and acceptability and facilitates high-quality research. (For additional details, please see Long et al. (2015). Major Lessons Learned From a Nationally-Based Community–Academic Partnership: Addressing Sibling Adjustment to Childhood Cancer. Families, Systems, & Health. http://dx.doi.org/10.1037/fsh0000084).

With financial support from Alex’s Lemonade Stand Foundation, SPARCCC has hosted two breakthrough International Sibling Summits. The Inaugural Summit was held in November 2016, and the Second Summit was hosted in March 2018. These invitation-only conferences brought together researchers, clinicians, sibling and parent stakeholders, and advocates with experience championing sibling issues. The goal of these Summits was to increase awareness of ongoing research regarding siblings and families of children with cancer and to stimulate collaboration and partnerships among researchers, clinicians, advocates, and sibling and parent stakeholders.

Several notable accomplishments have come out of these two Summits. Most recently, a research idea developed at the second Summit received grant funding from Mattie Miracle Cancer Foundation. Spearheaded by SPARCCC’s co-Chair, Dr. Kristin Long of Boston University, the project entitled, On the Outside Looking In: A Nationwide Examination of Barriers to and Facilitators of Implementing the Standard of Psychosocial Care for Siblings of Children with Cancer, aims to: 1) characterize the range and nature of existing sibling-focused psychosocial assessment and intervention services; 2) describe providers’ perceptions of barriers to providing sibling-specific screening and support and identify feasible solutions to sibling support barriers; and, 3) apply findings to the creation of a blueprint outlining an acceptable, feasible model for delivery of sibling psychosocial care. The full research team on this project includes Drs. David Buchbinder and Melissa Alderfer as mentors to Dr. Long; Drs. Maru Barrera, Lynn Fainsilber Katz, Cynthia Gerhardt and E. Anne Lown as collaborators; and Christina Amaro and Christina Sharkey as trainees. Results of the proposed study will be used as pilot data to support a future larger grant proposal focused on implementation of the blueprint for sibling service delivery.

As mentioned above, our group is comprised of multi-disciplinary academic researchers, community partners, sibling advocates, and graduate student trainees. Led by Chair Melissa A. Alderfer, PhD (Principal Research Scientist, Nemours Children’s Health System & Associate Professor of Pediatrics, Sidney Kimmel Medical College at Thomas Jefferson University) and co-Chair Kristin A. Long, PhD (Assistant Professor, Boston University), our current board members and trainee members are profiled on our website. If you are interested in becoming involved in the work we are doing, please contact our Gmail account (siblingpartnership@gmail.com) or contact Dr. Alderfer at melissa.alderfer@nemours.org.