Hi, it’s been a while. I’ve been very busy with Newborn Screening advocacy/travel for LDNBS, where I am now the Director of Advocacy, and I’m still working on my Master’s – three more classes! That hasn’t left me much time to write for fun, even though I’m writing all the time. The boys are loving school and are doing SO well. We are so encouraged by their progress (and by the fact that they already switched places at school! They are so smart!).

My final exam assignment for my most recently completed class (Strategic Communication Theory and Practice) was a reflection paper on how communication theories have been or would be useful in our lives and careers. I thought my paper was worth sharing here on my blog because it reflects on the difficult lessons I have learned in my eight years of Newborn Screening advocacy, and I believe these same lessons can be applied to every aspect of life.

So, even though it’s a bit (a lot) long for a blog post, here it is. If you’ve been reading my writing for a while, you know that listening to understand is one of my favorite topics, so you won’t be surprised to see it appear in this paper as well. Don’t worry – this isn’t written in super academic style. 🙂

I truly hope this is helpful to you and brings you more peace and grace in this crazy world we call home,

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Introduction

When I first began advocating for expanded Newborn Screening in Pennsylvania in 2017, I was unprepared for what I was about to experience; it is no exaggeration to say that my experiences have changed who I am and how I approach the world. As I began to learn the complex public health system and tried to navigate the legislature in an effort to bring major changes here, I faced roadblocks that I previously would have thought to be unthinkable: two of my nonpartisan, life-saving (and money-saving) bills “died” because of partisan politics. I didn’t learn the true reason behind the failure of those efforts until I was three years into this advocacy journey; I was told by the Speaker of the House that the majority party wouldn’t even look at the bills because the other party introduced them. It was then that I was forced to face the changing reality of our political climate and realized that I was going to have to change my approach if I was going to make any difference. 

However, the overarching lesson I learned between 2017-2021 was the concept of listening to understand. I believe that this alone is the foundation of effective advocacy and something every person needs to learn if we are to improve the road we are on as a country and as a democracy. Listening to understand is well-supported by many of these theories and is an integral part of effective communication (and a healthy democracy): if we cannot – or will not – engage in dialogue with those who see things differently, there is no point in advocacy. 

In addition, by listening to understand, we will lessen the spread of misinformation (at least by us as strategic communicators and advocates) and increase trust because we will have taken the time to truly learn how the other side believes and feels rather than assuming.

In retrospect, at least five communication theories were part of my changed approach and attitude. These same theories continue to shape my advocacy efforts and how I educate parent advocates through my organization: Framing Theory, Narrative Paradigm Theory, Situational Theory of Publics, Social Judgment Theory, and Systems Theory. 

Theory Application

When speaking with decision-makers and stakeholders about adding a condition to a state’s Newborn Screening panel, it is easy to become defensive and assume that they are an enemy (as has been my personal experience). I made the mistake early on of taking those stances because I didn’t fully understand the systems or how they worked together (systems theory) and I didn’t appreciate the concept of fully listening to understand because I was still stuck in the partisan mindset of the “other party” being an enemy.

However, another layer to this work is that a vast majority of us enter this arena of Newborn Screening advocacy because we lost a child, bringing grief and trauma along with us, and I am not an exception to that rule. My first engagement with the Pennsylvania Newborn Screening Advisory Board was only three weeks after my daughter, Victoria, died from Krabbe disease; hearing their opposition to Newborn Screening for Krabbe disease was, therefore, infuriating to me and, at the moment, I was unable to understand their reasoning. However, through my learning of the system, and the complexity of it, and as a result of this class, the way I approach advocacy and the way I teach advocacy is much stronger. Knowledge of the theories likely would have made my journey a bit easier, but reflection and future application are equally valuable. Most importantly, listening to understand has transformed my life and continues to impact my work and relationships.  

Framing Theory teaches us that effective advocacy happens by speaking their language and knowing what they will respond to, which you learn by listening to understand (Bullock & Shulman, 2021; Chong & Druckman, 2007). Framing only works if you know what matters to those you speak with. Narrative Paradigm Theory identifies stories as being the most impactful vessel for a message or request (Green & Dill, 2013). In advocacy, this theory is integral to our work and is found in us telling our own stories well, but also in choosing to listen to the stories of those who believe differently. It is by listening that we learn and find the pathway to a solution, even in the most challenging of situations (Lane, 2023).

Situational Theory of Publics fits in with the previous two theories by highlighting that people tend to want to listen and take action if it’s something that pertains to them (Xifra, 2015). How we frame an issue and how good the story is can make all the difference in bringing someone to our side to make change possible (Grunig, 1997). In line with that theory, Social Judgment Theory states that people will accept or reject our message based on their own ego/principles/lens/what they believe (Park et al., 2007, p. 81; Sarup et al., 1991). This allows us to carefully select the language we use in order to have the greatest impact, and finding those words requires us to listen to understand. Systems Theory describes how relationships are interdependent and the role of communication is imperative in helping those relationships function well (Musheke & Phiri, 2021). If we don’t understand the system, the players, and the viewpoints, we cannot help connect the different parts of the whole using communication (Almaney, 1974). Listening to understand helps us know how to connect with those we are trying to persuade.

Each of these theories (and many more) describes aspects of Newborn Screening advocacy and has given me ideas and insight for how to be more effective in my role. As Director of Advocacy for the Leukodystrophy Newborn Screening Action Network, I develop all of the social media content, stay up-to-date with relevant news and policy changes, create education programs, and meet with advocates who are ready to learn and be engaged. It is up to me to set the tone, enforce the ethics, and communicate effectively while modeling all of this for others at the same time.

The Importance of Listening to Understand in Advocacy Efforts

Listening to understand requires humility, a willingness to be wrong, and the ability to change one’s mind when new information is obtained (Bilanich, 2017). It humanizes those on the other side and helps us to better understand the motivations behind their stance. While I have learned these lessons repeatedly as a parent advocate, the clearest example comes from my work in Pennsylvania as I attempted to reform the Newborn Screening program. My motivation (and, therefore, my framing and narrative) shifted from wanting to force them to screen for Krabbe disease through legislative mandate (something I now do not believe is ethical) because of what I had lost, to wanting to fix the program as a whole to save the lives of many more children than just those with Krabbe disease because of what I had lost. 

As I listened in Newborn Screening Advisory Board meetings, I began to understand the complexity of the system, how it worked together, and what was broken; that led me to see how it could be fixed. This pattern continued as I took these ideas to the legislature; it was at this point that partisanship entered the room in cruel ways that shaped me and my viewpoints even further. Yet, I learned the game they wanted me to play and successfully advocated an even stronger bill than we originally had (thanks to listening to stakeholders and being willing to change) all the way to the governor’s desk in November 2020. 

Because I was willing to genuinely learn not only how the other stakeholders felt about components of the bill but also what they perceived as needing to be fixed, Pennsylvania now has one of the strongest, most effective Newborn Screening programs in the country. Had our original bill passed in 2017, that wouldn’t be the case.

Listening to understand changed how I framed the narrative I was telling because I understood my audience and what motivated them, and I knew which public they belonged to (Aldoory, 2016); understanding the numerous factors that go into a complex public health system like Newborn Screening – babies, parents, hospitals, couriers, labs, scientists, clinicians, state health program employees, hospital associations, insurance companies, and more – helped me to identify unique solutions that fit our situation in Pennsylvania and enabled me to communicate those solutions to each stakeholder in their language. Because I was not just listening to respond, I began to understand. 

Framing the Narrative in the Media

One realization I have had as I have reflected on my advocacy experiences thus far is that, in the beginning, none of us were listening to understand. Even more unfortunate, none of us were listening at all. The Department of Health and the Newborn Screening Advisory Board weren’t listening to me or to the Krabbe disease experts and instead held on to their biases and their “this is just how it’s done” type of thinking. I wasn’t listening to their concerns about the inadequacies and limits of their Newborn Screening program and was solely focused on seeing Pennsylvania screen for Krabbe disease, no matter the cost. I made statements that were great for sound bytes and quotes but were not helpful for the unification of stakeholders and solving the actual problems that existed.

Additionally, the media decided to frame our story solely as another failure of the government; while partially true, that framing didn’t attempt to help find solutions because it put stakeholders on the defensive. Two articles and the accompanying television segments from the beginning of these efforts (Miller, 2015; Maisel, 2016) had a vastly different feel than more recent ones, and that partially goes back to how I presented the issue to them (and what I included/omitted as I framed it). However, the sources Miller (2015) interviewed from the Department of Health shifted blame to the lab (blame which I had proven was not true), and Maisel (2016) received the same blame-shifting statements more than a year later, which also showed a lack of interest from the Department of Health to take this issue seriously. There were no visible attempts by the reporters to learn the true reasons why the bill wasn’t being implemented and certainly no visual attempts to solve them. The verbiage used felt slightly hostile instead of curious, accusatory instead of factual.

In contrast, an excellent piece was produced earlier this year by an investigative reporter who not only told our story to a national audience, but dove deep into learning about Newborn Screening, finding the problems, and identifying potential solutions (Sherman & Molina, 2023). This piece was well-researched, was in print and video, and continues to be shown on local TV networks around the country as well as on social media.

Finally, the most recent local news piece about my advocacy efforts used proper framing, excellent use of narrative, and a positive tone. Hendricks (2023) highlighted our “Ceremonial Signing” of Act 133 of 2020 (which took place two years after the bill was signed because of COVID-19 restrictions). She wrote it as a follow-up to the original piece she wrote (Hendricks, 2018), which was encouraging, highlighted the issues while telling our story, and also identified potential solutions.

The largest difference in how our story and efforts were portrayed in the media comes down to what I said and how I said it as I tried to get their attention. At the beginning, I was angry, grieving, frustrated. By the time our ceremonial signing occurred, I had learned to listen to understand, understood the system more fully, formed relationships with stakeholders that continue to this day, and was overall more at peace. 

Conclusion

Advocacy is how I continue to be Tori’s mother, and I have come to recognize that how I accomplish her legacy is just as important as the legacy itself (Newborn Screening for Krabbe disease). Understanding these communication theories (and reflecting on how I saw them play out in my own life) has been incredibly useful, interesting, and encouraging. It has inspired me to continue learning throughout my career and has reinforced the reality that listening to understand is the most important aspect of any successful advocacy efforts, family, and country. 

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References

Aldoory, L., Roberts, E. B., Bushar, J., & Assini-Meytin, L. C. (2016). Exploring the use of theory in a national text message campaign: Addressing problem recognition and constraint recognition for publics of pregnant women. Health Communication, 33(1), 41–48. https://doi.org/10.1080/10410236.2016.1242034 

Almaney, A. (1974). Communication and the Systems Theory of Organization. Journal of Business Communication, 12(1), 35–43. https://doi.org/10.1177/002194367401200106

Bilanich, B. (2017, July 6). Success common sense: Listen to understand not to criticize others’ point of view. Retrieved October 7, 2023, from https://www.proquest.com/blogs-podcasts-websites/success-common-sense-listen-understand-not/docview/1916492326/se-2?accountid=8459

Bullock, O. M., & Shulman, H. C. (2021). Utilizing framing theory to design more effective health messages about tanning behavior among college women. Communication Studies, 72(3), 319–332. https://doi.org/10.1080/10510974.2021.1899007 

Chong, D., & Druckman, J. N. (2007). Framing theory. Annual Review of Political Science,
10(1), 103–126. https://doi.org/10.1146/annurev.polisci.10.072805.103054

Green, Melanie C., and Karen E. Dill, ‘ Engaging with Stories and Characters: Learning, Persuasion, and Transportation into Narrative Worlds’, in Karen E. Dill (ed.), The Oxford Handbook of Media Psychology, Oxford Library of Psychology (2012; online edn, Oxford Academic, 28 Jan. 2013),
https://doi.org/10.1093/oxfordhb/9780195398809.013.0025, accessed 11 Sept. 2023.

Grunig, J. E (1997). A situational theory of publics: Conceptual history, recent challenges and new research. D., Moss, T., MacMannus, & D., Vercic (Eds). Public relations research: An international perspective, 3-48.

Haudan, J. (2019). What Happens When You REALLY Listen? Recognition and Engagement Excellence Essentials. Retrieved October 5, 2023 from https://www.proquest.com/magazines/what-happens-when-you-really-listen/docview/2307429577/se-2

Hendricks, K. (2018, June 25). A Loss, a Purpose: Hershey woman advocates for greater newborn screening laws. TheBurg. Retrieved October 5, 2023, from https://theburgnews.com/home-front/a-loss-a-purpose-hershey-woman-advocates-for-greater-newborn-screening-laws

Hendricks, K. (2022, September 23). Birthing a Legacy: Ceremonial bill signing celebrates Hershey woman’s 7-year quest to improve Pennsylvania’s newborn screening laws. TheBurg. Retrieved October 5, 2023, from https://theburgnews.com/news/birthing-a-legacy-ceremonial-bill-signing-celebrates-hershey-womans-7-year-quest-to-improve-pennsylvanias-newborn-screening-laws

Lane, A. (2023). Towards a theory of organizational storytelling for public relations: An engagement perspective. Public Relations Review, 49(1), 102297. https://doi.org/10.1016/j.pubrev.2023.102297 

Maisel, M. (2016, November 15). PA law that could save newborns’ lives still waiting to be implemented. fox43.com. Retrieved October 5, 2023, from https://www.fox43.com/article/news/local/contests/advocates-push-for-pa-to-implement-two-year-law-screening-krabbe-disease-at-birth/521-7204e163-f321-45ec-97cc-145c38f1b820

Miller, B. (2015, March 13). “You never expect to hear your little baby is dying” says mom of child with Krabbe disease. Pennlive. Retrieved October 5, 2023, from https://www.pennlive.com/midstate/2015/03/you_never_expect_to_hear_your.html

Musheke, M. M., & Phiri, J. (2021). The effects of effective communication on organizational performance based on the systems Theory. Open Journal of Business and Management, 09(02), 659–671. https://doi.org/10.4236/ojbm.2021.92034

Park, H. S., Levine, T. R., Westerman, C. Y. K., Orfgen, T., & Foregger, S. (2007). The effects of argument quality and involvement type on attitude formation and attitude change: A test of Dual-Process and Social Judgment Predictions. Human Communication Research, 33(1), 81–102. https://doi.org/10.1111/j.1468-2958.2007.00290.x

Sarup, G., Suchner, R. W., & Gaylord, G. (1991). Contrast Effects and Attitude Change: A Test of the Two-Stage Hypothesis of Social Judgment Theory. Social Psychology Quarterly, 54(4), 364–372. https://doi.org/10.2307/2786848

Sherman, J., & Molina, D. (2023, May 22). Tasked with critical testing, newborn screening programs feel pinch of funding struggles. InvestigateTV. Retrieved October 5, 2023, from https://www.investigatetv.com/2023/05/22/tasked-with-critical-testing-newborn-screening-programs-feel-pinch-funding-struggles/

Xifra, J. (2015). Climate change deniers and advocacy. American Behavioral Scientist, 60(3),
276–287. https://doi.org/10.1177/0002764215613403