Using Formative Evaluation and National Stakeholder Engagement to Inform Universal and Consistent Messaging: A Case Study with Sickle Cell Trait

Abstract Information: Introduction
Sickle cell trait (SCT) is carried by 1 in 13 African Americans, yet awareness of the potential adverse health outcomes is both lacking and inconsistent across the scientific, research, and practice communities. SCT is often incorrectly marketed as benign, yet people who have SCT can experience life-threatening conditions and death. Guided by an implementation science framework this initiative developed and tested new, relevant messaging using a data-driven approach. The process assessed the effectiveness of existing SCT messaging through the evaluation of stakeholder motivations for and reactions to existing messaging; engaging experts from public health, medicine, advocacy, policy, and service delivery in collaborative learning communities; and, pre-testing messages with people who have SCT to inform uniform messages to be delivered by SCT organizations.

Methods
Mixed-method formative evaluation was conducted through: 1) engaging in a comprehensive scan of messages that currently exist; 2) conducting interviews (n=13) and focus groups (n=19) with national SCT stakeholders (organization leaders, providers, and experts); and, 3) drafting messages that combined the existing evidence with themes that emerged from interviews and focus groups. The draft messages were shared through a multi-session learning collaborative with SCT stakeholders, then refined based on feedback, and pre-tested with people who have SCT (n=66). The Consolidated Framework for Implementation Research (CIFR), an implementation and evaluation framework, guided data collection, analysis, and message development to ensure the process, recommendations, and final messages were action-oriented, reflected both internal participant perceptions and attitudes, and the external context.

Results
Interviews and focus groups with organization leaders yielded rich discussions, provided consensus on message tone and purpose, and informed the testing process with people who have SCT. A prominent theme was extensive incorrect and conflicting information in the field, which leaves SCT carriers unaware of potential health-related outcomes. The results and recommendations of message testing included: 1) Presenting numbers within messages in percentage format is the least confusing. 2) Using non-stigmatizing words that prompt action were preferred (i.e., “potential” over “possible” since “potential” is more urgent; “complications” over “conditions” since “complications” is more serious and motivating; use “could save your life” over “may be warranted/needed/helpful” for urgency). 3) Ensure messages have a clear call to action provided through a website link or QR code. 4) De-emphasize focus on provider knowledge and use a positive tone that fosters self-advocacy. Additionally, participants indicated preferred modes of communication to receive these messages, including provider consultation, reputable websites and SCT organizations, and on certain forms of social media.

Discussion
Engaging stakeholders during formative evaluation and message development allowed for the development of messages to test with the target population. Pre-testing discerned appropriate terminology, tone that encourages action and self-advocacy, and direct and factual phrasing. This process results in refined messages that are consistent and drive behavior change, particularly in an area where there is misinformation. This process ensures the creation of universal messages supported by organizations that increase awareness of SCT carrier status and provide a model of message development and refinement for other sensitive topics with misinformation in the field.