Introduction
Public health agencies, clinicians, and researchers acknowledge the need to implement new community strategies to address infant mortality through both community engagement and addressing the social determinants of health (Institute of Medicine (US) Roundtable on Health Disparities, 2008). Despite the long-time improvement in the State of Kansas, large black-white gaps (Black infant mortality rate of 10.7 compared to the White infant mortality rate of 4.1) in infant mortality remained unchanged. The Kansas Sisters and Brothers for Healthy Infants (K-SBHI) was formed to increase community engagement strategies to reduce black-white gaps in infant mortality and address social determinants of health in Sedgwick County, Kansas, a community with a high Black infant mortality rate (15.1 per 1000 live births) (Sedgwick County Division of Health Issue Brief, 2017).
The K-SBHI is an innovative community engagement strategy designed to reduce black-white gaps in infant mortality and socioeconomic disparities in infant mortality and birth outcomes in Sedgwick County, Kansas. The strategy involves planning and implementing community engagement actions designed to build on the Black community strengths; influence how existing resources are directed; acquire and apply new resources to reduce social determinants of health; and improve the knowledge and awareness of infant mortality disparities.
The K-SBHI strategy engages four critical sectors in communities that can affect improvement in Black birth outcomes: public awareness and education; public health; health care; and community services—to strengthen community conditions that support healthier Black infant outcomes.
The K-SBHI uses the Theory of Change (Weiss, 1995) framework and methodology to increase community engagement by organizing, planning, and implementing activities that will stimulate local social movements, elevate local community voices, and mobilize multiple sectors for the reducing social determinants of health and improving Black infant health. The K-SBHI is also guided by the Collective Impact Model advanced by Kania and Kramer (2011), described as “the commitment of a group of important actors from different sectors to a common agenda for solving a specific social problem” (p. 36). Thus, the K-SBHI uses the Theory of Change methodology, beginning with the participation of the KU researchers and interested Black fraternities and sororities, to bring about a collective impact involving persons and organizations from a range of sectors working together to achieve the common agenda and associated outcomes.
The K-SBHI was planned, organized, and initiated by population health researchers at the University of Kansas School of Medicine-Wichita who recruited historically Black fraternities and sororities to assume an active leadership role in the initiative (See Table 1 for a complete list of organizations who are involved in K-SBHI). The primary community actors who supported and conducted the start-up activities of the K-SBHI were the historically Black fraternities and sororities in Wichita, KS, and faculty at the University of Kansas-Wichita. The efforts to plan and activate the initiative were at first undertaken from within the existing resources of the involved individuals and organizations, but later grants were obtained to fully enable the implementation of the K-SBHI strategy.
Table 1.
Kansas sisters and brothers for healthy infants local fraternity and sorority chapters
| Alpha Phi Alpha Fraternity, Inc., Eta Beta Lambda Chapter |
|---|
|
|
| Alpha Kappa Alpha Sorority, Inc. Beta Kappa Omega Chapter |
| Delta Sigma Theta Sorority, Inc. Wichita Alumnae Chapter |
| Kappa Alpha Psi Fraternity, Inc. Wichita Alumni Chapter |
| Sigma Gamma Rho Sorority, Inc. Gamma Chi Sigma Alumnae Chapter |
| Zeta Phi Beta Sorority, Inc., Sigma Zeta Chapter |
The lessons of the first 4 years of the K-SBHI are presented in this paper to provide valuable insights to maternal and child health (MCH) professionals who are interested in implementing similar community engagement initiatives, and especially those working with diverse stakeholders of color. To explore the dynamics of community engagement, to present lessons learned, and to inform future efforts to reduce infant mortality by addressing racial disparities and social determinants of health, this paper describes our application of the Theory of Change/Collective Impact and highlights our early activities to create awareness, and community engagements, including the successes and challenges. We also describe both short and long-term outcomes and recommended next steps.
The University of Kansas School of Medicine (KUSM) served as the backbone organization of the K-SBHI, and the K-SBHI fraternities and sororities are centrally involved in planning, leadership, and performance of activities. As the initiative has continued, it has also been able to expand its activities and influence by adding partnerships with local community members, including academics, social workers, medical professionals, community advocates, and representatives from non-health sectors. Together, the research experts and community experts who care, continue to work for change that helps to address social determinants of health and reduce infant mortality disparities.
Background
Infant Mortality is a public health crisis. In the US and Kansas, Black infants are more than twice as likely to die during infancy than their white counterparts (United Health Foundation, 2021). For decades, infant mortality reduction in the U.S. and Kansas has been addressed predominantly through clinical care such as prenatal care and enhanced neonatal care (Alexander & Kotelchuck, 2001; Heisler, 2012). While the efforts have reduced the US and Kansas infant mortality rate overall, persistent black-white gaps in the outcomes indicate that clinical interventions alone are insufficient to bring about birth equity for Black infants (Alexander & Kotelchuck, 2001; Bryant, et al., 2010; Heisler, 2012; Kim & Saada, 2013). Nationally, public health agencies, clinicians, and researchers have acknowledged the need to implement new community strategies to address infant mortality through both community engagement and ‘social determinants of health’ approaches (Institute of Medicine (US) Roundtable on Health Disparities, 2008). The K-SBHI is the first effort in Sedgwick County, Kansas to intentionally apply community engagement to improve Black infant outcomes and to apply the Theory of Change/Collective Impact to guide its efforts, evaluate outcomes, and discern lessons learned.
Building on Weiss’s (1995) work, Makowiecka et al (2019) brought attention to the Theory of Change as a methodology and framework for bringing about improvements and innovations in maternal and newborn health. Use of the Theory of Change has been recommended for working for community engagement because of its utility in helping stakeholders to specify and make explicit the outcomes they intend to achieve, and its utility in helping stakeholders to gain an understanding of how the engagement activities contribute to the outcomes. Theory of Change also requires users to consider and specify the contextual factors that are likely to help or hinder the achievement of the specified outcomes. Thus, the Theory of Change provides a conceptual framework and methodology for integrating and linking planning, outcomes, context, and activities in ways that facilitate success (Gooding et al., 2018).
While the Theory of Change gained traction within the MCH field, Kania and Kramer’s Collective Impact model also emerged as a promising strategy to reduce MCH disparities. The key aspect of the Collective Impact model that influenced the K-SBHI was the requirement to work to combine and sustain the energies of many actors through coordinating agendas and sharing the same outcome definitions and measurements.
The Theory of Change, in combination with the Collective Impact model, was used by the K-SBHI to guide its pathway, and especially to guide its collaboration agenda with the participating local fraternities and sororities. In applying the K-SBHI pathway, The KU researchers started the initiative by reaching out to the fraternities and sororities who had expressed an interest. Next, KU researchers worked with the fraternities and sororities to apply the Theory of Change/Collective Impact by developing a common agenda; establishing a shared understanding of how outcomes would be measured; creating plans for mutual activities designed to address social determinants of health; and working together to build mutual trust. Additional information about how K-SBHI proceeded, along with lessons learned and challenges, is described below.
Description of K-SBHI, Lessons Learned, and Challenges
While this innovative MCH work produced early wins, the launch and implementation were not without challenges in recruiting, establishing trust, fostering mutual goals and activities, and communication. One key lesson learned was the criticality of creating a shared community agenda and shared measurement in recruiting, activities, and local assessments.
Forming Kansas Sister and Brothers for Health Infant (K-SBHI): A University-Community Partnership
The K-SBHI began when the KU researchers sent community interest letters to each of the seven active local fraternity and sorority presidents to obtain support and buy-in for their engagement in K-SBHI. The letter was a formal invitation to a community meeting to discuss infant mortality disparities in Sedgwick County, KS, and the possibility of forming an initiative to create awareness of the Black infant mortality crisis and social determinants of health contributing to the infant mortality crisis. At the kick-off meeting, the KU research team provided the attendees with an overview of the problem, including a review of the disparity data; health behaviors to be taught; racial stereotyping; the landscape of the community including the discussion of social determinants of health; an overview of the community initiative; the goals and objectives of the researchers: and information about other community initiatives addressing disparities in infant mortality. The attendees were also informed that K-SBHI would complement existing infant mortality reduction programs by partnering with community members and local organizations in Wichita, Kansas to help facilitate and provide local solutions.
Six of the seven invited fraternity and sorority chapters attended the kick-off meeting, and each of the six then sent a representative to the following monthly K-SBHI committee meetings to discuss what could be done to create a collective community impact that could reduce infant mortality disparities. After a review of the initial start-up plans, each organization’s representative pledged their chapter’s support for and participation in the initiative. Through this University-Community partnership, the Kansas Sisters and Brothers for Health Infants was formed.
During the third monthly committee meeting, one member suggested that K-SBHI could conduct a collaborative event each year to help create a shared community agenda, a venue for education and awareness activities, and education of Black women and their families about community resources that can address social determinants of health. Such an event would also provide a venue at which the impact of the previous year’s K-SBHI activities could be announced and celebrated, and at which community members including other fraternity and sorority members could get together to learn about, plan, and coordinate future efforts.
The KU researchers explored the literature, gray literature, and websites to cultivate an idea for such a yearly event and proposed a community event be named Celebrate Day 366 (CD366). Next, the KU researchers conducted a community assessment to identify community awareness of Black infant mortality and needs. Once the monthly committee meeting group approved the idea of hosting the Celebrate 366 event, the K-SBHI committee then agreed to meet every third Saturday at a local restaurant to strategize and plan the first annual CD366 event based on the findings from the community assessment.
During the following meetings, the team planned the first annual CD366 event agenda to include two empowerment sessions identified as needed in the community assessment; education sessions on infant mortality and the role of social determinants of health, safe sleep, prenatal care, co-parenting, and the importance of fatherhood; a community resources fair with local vendors that address the social determinants of health such as housing, real estate agent and finance officer, home visiting program, workforce, academic institutes, nutritionist, tobacco cessation interventions, federally qualified healthcare institutes that conducted a health fair including blood glucose checks; and a community birthday party to celebrate Black infants’ first birthdays. The K-SBHI members agreed to provide funding to conduct the initial CD366 event including building rental, incentives for attendees, supplies, and marketing. Building rental funding and participant bags came from the K-SBHI Sororities grant to conduct Maternal and Child health programming. The remaining K-SBHI member organizations provided resources in terms of gift card incentives, mom and dad baskets, lunch, and volunteer hours leading up to the event and the actual Celebrate Day 366 event. The provisions of the funds, participant incentives, time, and commitment confirmed ownership and buy-in of the shared community agenda.
Lessons Learned
Despite the early wins, which included the 6-months of planning, marketing, and other efforts by K-SBHI stakeholders to engage the community, five community members and 34 NPHC fraternity and sorority members attended the first annual event. The event was a success and provided education and awareness of social determinants of health and infant mortality disparities to 39 community members including parents and grandparents. One lesson learned for the K-SBHI committee was that this annual event sparked the interest of the K-SBHI organizations and confirmed their long-term support. One of the K-SBHI committee members also pointed out that the event was the first collaborative event with a University partner focused on maternal and infant health for the Wichita Chapters of the National PanHellenic Council (NPHC). However, low attendance by the general Black community in Wichita, KS was an indication our initiative needed to develop a stronger awareness campaign and advertisement plan for the event based on the community assessment. Another lesson learned that the team identified was that although the initiative had focused on the needs of local Black families, as perceived by members of the initiative team and early community assessment, more efforts were needed to solicit the community feedback on the community needs for education, awareness, resources/vendors, event time, and location.
During event wrap-up sessions K-SBHI and University partners discussed wins and losses for the event. Discussions centered around maintaining the interest of K-SBHI members, creating awareness in the community, how to target event recruitment in the general community, and another community assessment to determine what programming or education to provide on the day of the event to attract attendees. The community assessment revealed a lack of awareness of the infant mortality crisis, social determinants of health, overburden of events, and limited reach to create awareness of the event in the Black community. With the support of the fraternity and sorority team members, the KU team planned to focus the next year’s planning activities on the results of the assessment and marketing. The following year’s event focused on understanding infant mortality and social determinants of health and co-parenting and fatherhood, was scheduled to avoid overburden of events, and included a 3-month advertisement plan in local newspapers, commercials, and radio interviews including storytelling, and flyers at local churches. Implementation of the findings from the assessments and collaborations with Black local churches led to a 128% increase in 2nd annual CD366 event attendance and maintain the attendance of 34 fraternity and sorority members.
In addition to lessons learned around the annual event, the KU research team also learned about the need to foster mutually supportive activities with the sororities and fraternities.
One step toward achieving collective impact is recognizing and reciprocating community engagements. K-SBHI member organizations are steeped in service to the community. Another unique feature of the alumni fraternity and sorority chapters is that each has an emphasis on improving health outcomes in the communities where they live and work. After the first CD366 event, each of the six fraternities and sororities decided to adopt the K-SBHI and CD366 as an activity of their community service. The KU researchers developed a reciprocal response by becoming active in the K-SBHI fraternity and sorority chapters’ community activities, including events and community services. As a result, the KU researchers assisted with the Omega’s blood drive, Kappa safe sleep fatherhood initiative, and attending their local events and fundraisers.
The next lesson learned was how to communicate with non-academics and the MCH communities about the value of being involved in an initiative to reduce Black infant mortality. The KU researchers addressed this by presenting the data to the community by distributing flyers and posters to churches, health clinics, businesses, schools, daycares, radio interviews, and social media campaigns. They also conducted presentations in the community, especially at churches and clinics. They worked with the fraternities and sororities to help align the fraternity and sororities priorities such as fatherhood, the NIH funded Kappa safe sleep regional program, stork’s nest program (i.e., March of dimes funded programs to increase the number of women receiving prenatal care), and women’s health with the K-SBHI strategies for improving Black infant mortality.
Another important lesson learned was that sharing personal experiences or local storytelling was an effective communication technique to highlight the strength used by the KU researchers to establish K-SBHI. This technique was also effective in illustrating the pathways to poor birth outcomes, social determinants of health’s role in poor outcomes, and the possibilities for improving those pathways through collaboration with diverse sectors. While the KU researchers did not share their personal stories, their discussions with the K-SBHI members involved sharing real-life experiences of others impacted by maternal and infant morbidity and mortality, knowledge of local stories in the community, sharing the association of social determinants of health and poor infant outcomes. This approach, presenting lived experiences, created relatability, helped to establish the importance of the infant outcomes in the minds of K-SBHI participants and team members, illustrated the need for cross-sector collaborations in the community, illustrated the need for increased awareness of the social determinants of health, created a sense of ownership in team members, and helped establish trust among team members and community members. Communication and listening techniques were also important strategies for sustaining K-SBHI members’ commitment to the work of reducing infant mortality.
Sustainability of K-SBHI
The original 2017 CD366 annual event is the signature event of the K-SBHI and was repeated in 2018 and 2019 but was transitioned to a virtual event for 2020 and 2021 due to the global pandemic. By applying the K-SBHI lessons learned to the annual event, Celebrate Day 366 has grown in terms of the number of members attending, increased the knowledge of the infant mortality crisis and social determinants of health, and established a platform to provide resources that address the social determinants of health. However, understanding how to achieve birth equity in Sedgwick County, KS is an ongoing challenge. K-SBHI has identified birth equity as a goal and has undertaken key steps to create awareness and educate the community on the root cause of health inequities. This work has unfolded in different forms, a birth equity community conversation at the 2019 Celebrate Day 366 event, a 2020 Juneteenth virtual panel on sharing birth stories and community resources, two virtual panels on the state of Black parents and the state of Black fathers during the 2020 Celebrate Day 366 event, and two panels on COVID and pregnancy during the 2021 Celebrate Day 366 event. K-SBHI recognizes the path to birth equity is acknowledging the historical perspectives and social determinants of health, elevating the voices of Black mothers and fathers, engaging diverse stakeholders through education and awareness, improving awareness of community resources that address the social determinants of health: physical environment, socioeconomic factors, and health behaviors.
Finally, K-SBHI stakeholders identified the need for a sustainable funding mechanism. The initial initiative was not funded but the yearly event (Celebrate Day 366) was funded by the K-SBHI members and other community sponsorships of food and travel expenses. While the establishment of an initiative with community ownership is a strength of the community, the lack of sustained funding resulted in limited attendance of non-fraternity and sorority community members of the event. Thus, the KU research team drafted and applied for a local community foundation grant which allowed for the facility rental in the community with the highest Black infant mortality rate for monthly meetings, marketing including material development and dissemination, a graduate research assistant, and event expenses such as lunch, presenter honorarium, and incentives for years two and three. The local grant also allowed the expansion of the project to conduct a community birth equity conversation. The community birth equity conversation receptiveness highlighted the need to obtain federal funding to expand the initiative and create birth equity in the state through the inclusion of 50 diverse stakeholders including Black parents, to focus on training, and a collaborative effort to create statewide solutions to reduce Black infant mortality.
Conclusion
The K-SBHI is an early attempt to apply the theory of change and collective impact strategically, engaging the NPHC as partners and engaging new tools to improve the root causes of poor Black birth outcomes. K-SBHI responded to the community’s unique and aligned priorities, embracing community engagement to enhance the existing MCH strategies to reduce poor Black birth outcomes and social determinants of health. While K-SBHI faced numerous hurdles, the continuous efforts to engage the community, rely on their strengths, empower Black families through awareness and education, and steps to create birth equity have led to community and statewide acknowledgment of diverse cross-sector collaborations. While this approach is still in its early phases, we recognize the importance of addressing racism, social determinants of health, and implementing and sustaining diverse cross-sector collaborations to reduce Black poor birth outcomes. We believe the efforts are not only sustainable but create a guide for implementation of efforts to empower Black families and promote equitable birth outcomes by relying on the strengths of the community.
Significance:
Persistent racial disparities indicate that clinical interventions alone cannot reduce racial disparities in infant mortality, because birth outcomes, like overall health, are the product of one’s environment, opportunities, and experiences. The K-SBHI is one approach to transforming the social determinants that underlie poor reproductive and infant outcomes, and the lessons learned from K- SBHI’s initial years can inform other efforts working to enhance the connection between community engagement, research, and practice.
Funding
Patient-Centered Outcomes Research Institute,16945,Sharla Smith
Footnotes
Conflict of interest SS,MR,TS, SS, BS, TC, declare that they have no competing interests.
Ethical Approval The study is approved by the University of Kansas School of Medicine Internal Review Board.
Consent for Publication This manuscript has not been published previously, and it is not currently under consideration for publication elsewhere.
Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10995-021-03346-6.
Data Availability
N/A.
References
- Alexander GR, & Kotelchuck M (2001). Assessing the role and effectiveness of prenatal care: History, challenges, and directions for the future. Public Health Reports, 116, 306–316. 10.1093/phr/116.4.306 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bryant AS, Worjoloh A, Caughey A, & Washington AE (2010). Racial/ethnic disparities in obstetric outcomes and care: Prevalence and determinants. American Journal of Obstetrics and Gynecology, 202(4), 335–343. 10.1016/j.ajog.2009.10.864 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Gooding K, Makwinja R, Nyirenda D, Vincent R, & Sambakunsi R (2018). Using theories of change to design monitoring and evaluation of community engagement in research: Experiences from a research institute in Malawi. Wellcome Open Research, 3, 8. 10.12688/wellcomeopenres.13790.1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Heisler EJ (2012). The U.S. Infant Mortality Rate: International Comparisons, Underlying Factors, and Federal Programs. CRS Report for Congress, US Congressional Research Service. Retrieved from http://www.fas.org/sgp/crs/misc/R41378.pdf [Google Scholar]
- Institute of Medicine (US) Roundtable on Health Disparities. (2008). Appendix D, Community Approaches to Addressing Health Disparities, in Challenges and Successes. In Institute of Medicine (US) Roundtable on Health Disparities. Reducing Health Disparities: Workshop Summary. Washington (DC): National Academies Press (US). Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK215366/ [PubMed] [Google Scholar]
- Kania J, & Kramer M (2011). Collective impact. Stanford Social Innovation Review. Winter: 36–41. Retrieved from http://leveragingourstrengths.ca/reading/collective_impact.pdf [Google Scholar]
- Kim D, & Saada A (2013). The social determinants of infant mortality and birth outcomes in western developed nations: A cross-country systematic review. International Journal of Environmental Research and Public Health, 10(6), 2296–2335. 10.3390/ijerph10062296 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Makowiecka K, Marchant T, Betemariam W, Chaturvedi A, Jana L, Liman A, Mathewos B, Muhammad FB, Semrau K, Wunnava SS, Sibley LM, Berhanu D, Gautham M, Umar N, Spicer N, & Schellenberg J (2019). Characterizing innovations in maternal and newborn health based on a common theory of change: Lessons from developing and applying a characterization framework in Nigeria, Ethiopia and India. BMJ Global Health. 10.1136/bmjgh-2019-001405 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sedgwick County Division of Health. (2017). Infant Mortality Health Issue Brief, 3(3), 1–4. Retrieved from https://www.sedgwickcounty.org/media/22775/infant-mortality-issue-brief.pdf [Google Scholar]
- United Health Foundation. (2021). America’s health rankings, analysis of America’s health rankings composite measure, AmericasHealthRankings.org. Retrieved 23 April, 2021 from https://www.americashealthrankings.org/explore/health-of-women-and-children
- Weiss CH (1995). Nothing as practical as good theory: Exploring theory-based evaluation for comprehensive community initiatives for children and families. In Connell JP, Kubisch AC, Schorr LB, & Weiss CH (Eds.), New approaches to evaluating community initiatives: Concepts, methods, and contexts (pp. 65–92). Aspen Institute. [Google Scholar]
Associated Data
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Data Availability Statement
N/A.