Bringing lung cancer above ground through storytelling: Creating a lung cancer advocacy network

Abstract

Objective

We developed a conceptual framework for creating lung cancer advocacy networks (LCANs) that engaged diverse advocates with complex relationships to lung cancer (LC) across disciplinary settings to address the challenges associated with the medical care and social complexity of LC.

Methods

This qualitative research used participatory action research and grounded theory methods to construct a conceptual framework for LCAN development.

Results

Twenty-four LC advocates across disciplines participated in 7 focus groups and 4 interviews. Four major themes and a singular subtheme emerged from transcript analysis: a) historic stigma has broad implications for LC; b) discordant communication impacts LC care, c) the future of LC care is hopeful due to medical advances; d) a LCAN requires intentional organizational communication. Storytelling emerged as a subtheme of intentional organizational communication. Storytelling is a primary communication tool that can address the medical and psychosocial challenges of LC.

Innovation

This model provides an innovative framework for LCANs to engage diverse advocate-types and use storytelling as a primary organizational communication strategy to improve LC care.

Conclusion

Our model promotes storytelling as integral to address medical and psychosocial challenges associated with LC care.

Graphical abstract

Highlights

• •Participatory action research challenges hegemonical roles for lung cancer advocates.
• •Constructivist grounded theory can inform lung cancer advocacy network development.
• •Lung cancer advocacy networks can create organizational identification among diverse advocates.
• •Storytelling is integral to address the complex needs of lung cancer care.
• •Lung cancer stigma creates multifaceted challenges for advocacy efforts.

1. Introduction

Lung cancer (LC) is the leading cause of cancer deaths in the United States [1]. Lung cancer care requires multidisciplinary management, including medical specialists and lay caregivers. However, the U.S. healthcare system is structurally inadequate to address the needs of those experiencing LC despite medical advances that have improved survivorship [2]. Due to structural challenges, people with LC and their caregivers cannot easily navigate healthcare systems resulting in inadequately addressed medical and psychosocial needs. Psychosocial needs often relate to tobacco-related stigma; this can limit knowledge about, and utilization of, recent medical advances that improve LC care and outcomes [2], [3]. To address these challenges, LC advocates can form lung cancer advocacy networks (LCANs). Lung cancer advocacy networks serve to bridge gaps in communication, equity and research to provide improved testing, treatment, planning and support for those experiencing LC [4]; this in turn can lead to improved quality of life for those with LC [5] and increase overall LC survivorship [5], [6]. One recently developed LCAN grew out of an online LC support group [5]. However, other disease-state care models benefitted from being co-designed with patients and caregivers [7]. We sought to systematically develop a LCAN to fill this gap and improve medical and psychosocial needs for people experiencing LC.

We used extant communication theory and a participatory action research (PAR) approach to design a LCAN in partnership with a large, Midwestern academic health center in the U.S. We sought to democratize power by considering those with LC and their caregivers as experts of their own experiences [8]. Co-designing a LCAN that promotes awareness through stories about the human experience of LC allows the LCAN to address multiple issues concurrently [9], [10], including the inadequately structured U.S. healthcare system, challenges associated with utilizing medical advances, and the social issue of stigma.

In this paper, we describe how a LCAN can be co-designed to improve the lives of those experiencing LC. Using a PAR approach, we present focus group findings integrating the voices of those living with LC and other advocates.

2. Literature review

Lung cancer is a complex disease-state, medically and socially. Lung cancer is difficult to diagnose early, and most people diagnosed with LC die within one year of diagnosis [11]. Treating LC is challenging partially due to the complex multidisciplinary care required (e.g., oncologists, radiologists, surgeons). However, recent scientific advances have improved LC diagnosis and outcomes [2], [12], although advances remain underutilized [13].

Systematically, LC stigma creates multi-level barriers that affect stakeholders [11], [14]. Specifically, stigma limits the healthcare system's engagement with those at high-risk for LC, and negatively impacts diagnosis and outcomes [3], [14], [15]. Additionally, stigma increases psychosocial needs for high-risk individuals and limits interest in LC screening [3]. Many individuals with LC self-stigmatize; they believe they deserve LC because they smoke(d) [16]. The medically and socially complicated nature of LC leads to the need to create LCANs that are different than other cancer advocacy networks.

2.1. Advocacy networks can make the system work

Cancer advocacy networks improve public awareness, care, and outcomes [6]. In turn, these networks address cancer stigma by promoting awareness and engagement [8], [17], and can improve medical and psychosocial outcomes for those with cancer [17], [18], [19]. Further, networks that engage stakeholders with diverse identities to cancer are better equipped to address the array of challenges associated with complex disease-states such as LC [20], especially when the network foregrounds patient experiences [21]. Increased LC survivorship increases the number of LC survivor advocates [2] who can share their stories to mitigate long-held smoking-related stigma, given that stigma is a product of ignorance [11]. Diverse advocate types strengthen the organization and also add complexity.

2.2. Advocates' multiple organizational identifications add complexity

Like other cancer advocates, LC advocates have complicated intersectional identities especially given the increased numbers of survivors. For instance, HCP caring for LC patients can also have LC themselves [22], [23], [24]. These intersectional identities provide a “rich and layered window” into lived experiences for those with LC [20]. For a LCAN designed to incorporate the perspectives of advocates, intersectional identities also create organizational complexity. Advocates may serve multiple roles simultaneously which can create confusion. For example, oncologists may care for those with LC patients and volunteer at LCAN events. These different perspectives both strengthen and complicate an organization [20].

Similarly, LC advocates can have multiple targets of organizational identification (OIDs). Organizational identification refers to a sense of belonging and membership to a particular social group, profession, or organization, which can be influenced by both implicit and explicit socialization processes [25]. This identification can vary over time and is shaped by the context of the organization and inter-group relationships, allowing individuals to identify with multiple targets both inside and outside organizations [25]. As individuals develop an OID, they are more likely to cooperate and communicate with others with similar interests [25]. Attentive LCANs can build upon advocates' complex OIDs to engage more advocates; however, without careful attention, advocates' complex OIDs can create conflict. For instance, a HCP who has LC might have multiple conflicting views about LC as a clinician and a patient. Conflict within a LCAN organization could occur when presenting an advocate with multiple identities (e.g., patient and HCP). The LCAN might ask: which perspective is this advocate representing?; for what responsibilities might the advocate be well-positioned? Organizations must consider the complexity of the intersectional identities of LC advocates to best accomplish the organization's communicative and other goals. The complex OIDs of LC advocates highlight the importance of engaging in a participatory, co-design process where each advocate's identity and perspective is valued.

2.3. Participatory action research can capitalize on advocates' identification

Participatory action research (PAR) offers a valuable approach for LCAN development because it creates practical knowledge democratically [26]. This approach involves shifting the power dynamics between researcher and participant; community member participants are positioned as experts of their lived experiences [8]. Simply stated, PAR is an approach in which researchers and participants reflectively collaborate to co-create knowledge to solve problems [27], [28]. This approach centers action, democratization, and contextual understandings [27] throughout the research process [29]. For a LCAN, PAR foregrounds the experiences of those with LC and their caregivers [21].

Participatory action research is both an inquiry and an intervention [30]. It can be used to create organizations that address complex issues (e.g., a LCAN) by promoting democracy among advocates; this is salient to a LCAN due to the complex identities and OIDs of LC advocates, and the power dynamics involved in medically treating LC. Health communication scholars have used PAR similarly to engage and promote the perspectives of diverse stakeholders to address local concerns [31], [32]. The hierarchical nature of the U.S. health care system informed the need to co-create a LCAN from a participatory perspective, about which there is little extant research. We seek to fill this gap in the literature by describing the creation of a LCAN using a communication lens. In doing so, we provide future scholars and health advocates with the tools to create effective advocacy networks.

3. Methods

3.1. Procedures

The main purpose of this project was to use PAR to develop an integrated LCAN which incorporated the perspectives and needs of multiple advocate types. After receiving institutional review board approval, we conducted focus groups and interviews with individuals with varied identities connected to LC. Participants included patients and survivors, lay caregivers/advocates, researchers, and HCPs with topical interest. This purposeful approach was two-fold. First, these conversations served as a needs assessment to understand how the organization should be constituted using the PAR approach. Second, these data collection strategies answered the following research question: How can a diverse group of LC advocates (patients/survivors, HCPs, researchers, and lay advocates) co-design and create a LCAN to address existing gaps in the system of LC care? Based on our data collection and analysis, we developed a conceptual framework to guide the LCAN creation process.

3.2. Approach

We used constructivist grounded theory (CGT) methods, including initial and focused coding, constant comparison, memo writing, and theoretical sampling, to move from process description to sensitizing concepts [33]. Our aim was to employ these methods to create a context-specific conceptual framework that could orient and support the design of future LCANs and other types of advocacy networks [34]. Further, CGT methods provide flexible but systematic guidelines for collecting and analyzing data [33], [35].

The paradigm positionality of CGT involves a relativistic position encompassing some elements of positivistic and interpretivistic paradigms useful to the creation of a conceptual framework [35]. Using CGT methods allowed the research team to recognize the subjectivity of the data and its analysis, which informed the development of a LCAN based upon the diverse perspectives of constituents.

3.2.1. Participant recruitment and characteristics

We employed theoretical, snowball sampling of participants with diverse and existing relationships with LC (e.g., people diagnosed with LC, LC survivors, caregiver to someone with LC) who had differing levels of interaction with the academic Midwestern cancer center where the study took place. Sample participants provided rich data that could support emerging concepts for framework development [33], [34], [35], [36]. Throughout the sampling process, we analyzed results and purposefully recruited participants who could add new perspectives to the LCAN design process.

Participants were recruited through newsletters of a large Midwestern university in the U.S. and its National Cancer Institute-designated cancer center between February and March 2021. We recruited 24 participants who participated in a semi-structured focus group; in 4 cases, interviews were conducted due to low attendance. Participant demographics are reported in Table 1.

Table 1.

Participant characteristics.

Characteristic	Total (n = 24)
Age, mean	46 (SD 13.4, range 21–76)
Sex, female, n (%)	17 (70.8)
Race, n (%)
White	19 (79)
Black	3 (12.5)
Asian	1 (4.2)
Mixed	1 (4.2)
Role, n (%)
LC patient/survivor	4 (16.7%)
Family Member	4 (16.7%)
Supporter	4 (16.7%)
Healthcare Provider	9 (37.5%)
Researcher	3 (12.5%)

Pseudonyms were used to protect confidentiality. Focus groups were completed and recorded via the Zoom videoconferencing platform and lasted 45–75 min. Rev. AI software and the first author transcribed recordings. Data were stored in a secure server. Semi-structured interview guide questions (see Appendix A) were developed to understand how diverse advocate types (e.g., LC survivors, lay and professional caregivers, researchers) can collaboratively engage with a LCAN that centers on community engagement around LC advocacy.

3.2.2. Reflexivity

Each researcher brings bias and complex identities into research. We acknowledge that our backgrounds influenced our perceptions of data and analysis. We are both White women with different professional and social experiences that position our expertise with LC and advocacy. The first author, DJIS, provides a clinical background, and KJL provides a communication background. We took a remedial pedagogical approach during the interview process [37] and provided participants with scholarly information about LC research and advocacy to empower participants to share their perspectives. Additionally, in focus groups we enacted formal approaches to conversational turn-taking, to democratize the data collection process for all participants.

3.3. Data analysis

As CGT methods suggest, we conducted a review of the literature before, during, and after data collection and analysis to aid in our ability to “claim, locate, evaluate, and defend [our] position” [33]. We followed a systematic process in which we alternated between exploring and analyzing data. Themes embedded within the interviews and focus groups were generated by each researcher individually in the open coding phase. Both researchers then compared and discussed ideas to create a common code list with accepted definitions and examples. In this process, we construct overall meanings between and within data.

We used the constant comparative method throughout the coding process to systematically approach the data sense-making process. Data were iteratively collected and, analyzed until saturation was reached. Data saturation was evaluated after the fourth and eighth interview/focus group; saturation occurred after the eleventh interview/focus group when no new themes emerged. This concluded the first level of data abstraction in the analytic process. In the axial coding phase, we related open-coding categories to subcategories. We then developed a list of code families to facilitate the next level of data abstraction (i.e., code families represent a cluster of conceptually-related items). Table 2 presents an excerpt of a coding tree for the theme of stigma.

Table 2.

Stigma Coding Tree with Exemplar Quotes.

Parent Code	Short Code	Code	First-level [descriptive] code definition	Second-level [analytical] code definition	Example: Raw Data Quotes
Stigma	STI-type of cancer matters	LC stigma differs from other cancers which impacts treatment.	LC receives fewer treatment options.	LC has unique stigma that results in its different treatment when contrasted to other addictive disease-states.	Angela, LC patient, researcher, and HCP with experience in smoking cessation efforts: “But lung cancer is not treated like any other addiction. You don't go off for 30 days while you work through all the issues and you come back out. You're expected to continue with your life, raising your children, working your job…”
	STI-LC unfairly deserved	LC stigma creates blaming that brings people together.	LC stigma inspires participants to engage further with an advocacy organization.	People with LC get unfairly blamed for their disease state which unites advocates.	Lexi, HCP: “Sometimes with lung cancer there is this blaming going on…oh, you smoked and this is this is what you got. And I think that is so unfair. I think that's so unfair. Dealing with this disease.”
	STI-consequences of LC stigma	LC stigma impacts advocacy efforts.	LC stigma results in fundraising challenges.	LC is perceived as deserved because of smoking behaviors which has advocacy implications.	Kimberley, lay advocate/caregiver: “…the general public feels, [or] believes that if you get lung cancer, you deserve it because you smoked. There's…a stigma to lung cancer. I've tried to raise money before…it was hard. It's very hard.”

4. Results

In this section we present the four major themes and singular subtheme that emerged in our data. First, historic stigma has broad implications for the current state of LC care. Second, LC as a disease-state experiences a lack of coordinated communication across the continuum of care, from diagnosis to treatment and survivorship. Third, the future of LC care is hopeful, because of medical advances that improve care and outcomes. Fourth, a LCAN requires intentional organizational communication. Storytelling is a subtheme in this area: storytelling emerged as a primary LCAN communication strategy to address LC care challenges. Fig. 1 presents focused codes with exemplar quotes.

Fig. 1.

Focused Codes with Exemplar Quotes.

4.1. Theme 1: Stigma casts a long shadow on lung Cancer

Lung cancer remains a cancer that is uniquely stigmatized, which is a major theme that emerged from participants. Kimberley, a family member/lay caregiver of a person with LC, noted: “…the general public feels, [or] believes that if you get lung cancer, you deserve it because you smoked. There's…a stigma to lung cancer. I've tried to raise money before…it was hard. It's very hard.” Lexi, a HCP, stated her perspectives regarding the stigma of LC: “Sometimes with lung cancer there is this blaming going on… oh, you smoked and this is this is what you got.” These statements denote societal stigma.

Pamela, a participant whose family member died from LC, shared her thoughts about societal views about LC, and its impact to LC awareness and association with intelligence: “There's not the care and compassion for the lung cancer patients as there is for the colon cancer or breast cancer…Because you smoked, obviously you weren't bright enough to quit. So you deserve to get what you get…” However, participants made biased statements in focus groups that could unwittingly contribute and allude to a potential internalized stigma within LC advocate groups. Specifically, multiple participants highlighted the smoking status of people with LC, which contributes to implicit bias associated with stigma.

4.2. Theme 2: A lack of coordinated communication haunts lung Cancer

The second theme that emerged is how LC care lacks coordinated communication about resources throughout the continuum of care. Anita, a lay caregiver, reported her experiences with discordant communication “…we've got to get people to understand what warning signs are…get physicians to listen…I think [my dad] would still be here today if we did things a little differently.” In this story, her dad who had LC experienced a delayed diagnosis because of poor communication about screening, even though screening was readily available.

Other participants indicated that LC has less communication about existing resources compared to other cancers. One participant, Angela has LC, is a LC researcher, and a HCP. She identified that LC has a “disparity in disease…due to financial reports, due to legislative changes where they're more focused on one population versus another.” Janet, a HCP, was baffled by the lack of communication about LC due to statistics when she clarified LC is “…the number one killer cancer…The public should know that.”

Participants explained LC's unique lack of awareness and LC's outsized impact on minoritized groups in the following dialogue:

Levi (an advocate): Smoking really isn't a choice…addiction is literally a medical condition. So, I think the stigma should be redirected toward the companies that sell cigarettes.

George (a LC survivor and advocate): Absolutely, that's the way they've marketed to entice certain people.

Levi: It's even worse in developing nations. It's terrible.

Participants also discussed barriers for minoritized groups in research access and participation. Mary, a HCP, emphasized her experience regarding clinical trial participants: “…almost all the patients that I put on clinical trials…are White. I don't see a lot of African-Americans, Blacks, Hispanics…coming in to see us.” These comments demonstrate how communication about LC shapes public perception, which contributes to difficult-to-access resources.

4.3. Theme 3: The hopeful future of lung Cancer requires improved communication

The need for clearer communication about LC emerged as participants shared their future hopes and perceived challenges. Participants built consensus around the idea that new treatments provided a hopeful, albeit sometimes confusing, future. Thomas, a HCP, stressed: “[It] was really exciting that we had enough research to…be able to start treating patients with medicines that would spare them a lot of side effects and still could be really, really effective.” With similar optimism, Eva, a lay caregiver, declared:

What keeps me shouting from the rooftops in the three years since my husband died…the changes, the progress…it's just stunning! It's so exciting how much has changed just in that short time in the diagnostics, in the treatments. It's just amazing.

Kay, a woman with LC, revealed: “[My oncologist] indicated that people can live for many, many years with lung cancer. I think is very comforting to hear… that made me feel a lot better from the get-go…I think promoting that aspect is important.” Optimism surrounding new treatments also presents challenges, due to the complex nature of LC and therapies. Lena, a HCP, explained; “[Providers] don't keep up with things…rightfully so, because it's an ever-changing situation with the new treatments.” George, a LC survivor and advocate, identified the complexity of clinical trials and informed consent as an issue:

The person that's involved in the clinical trial is a partner in this, but they're not being treated as a partner. …I see that as a real gap and a real problem. …[Patients] are looking for ways to save their lives and, most people who do clinical trials in lung cancer, are generally really, really sick. This is their last hope…they're backed into a corner and don't have a choice but to sign up and sign these release documents. There needs to be a change in how that's administered.

Overall, these participants highlight the promising but challenging future of LC and the need for clearer communication across sectors and roles.

4.4. Theme 4: Intentional communication is required to develop an advocacy network

Participants repeatedly raised the importance of intentional organizational communication to create LCANs. Two distinct types of communication were identified. First, messaging strategies require a heightened, ongoing level of complexity; second, messaging should be personalized to promote engagement. Participants suggested the salience of providing multiple channels of communication. Thomas, a HCP, reflected about social media channels: “I don't use Facebook anymore, so I don't hear from [organizations that use Facebook] anymore.” Blake, a lay advocate and HCP, noted how communication should occur in different places: “If you can get marketing in different avenues…in different ways, people can say ‘of course I'm going to that event.’” Lena, a researcher and HCP, agreed: “Social media is great, but there's still nothing like face-to-face.” As these advocates indicated, participants' specific personal preferences should inform organizational communication strategy.

Similarly, according to participants, specific communication channels required tailored strategies. Particularly, frequency of communication depends upon the channel. Neda, a researcher, suggested a balanced approach, “…my philosophy is always just getting it out there as many times as possible, without annoying people, especially email stuff.” The concept of too much communication surfaced in a separate focus group when Kay, a person with LC, contended:

It's kind of a double-edged sword. You support a cause and then all of a sudden you are on their mailing list for every single thing they send out. It becomes too much…causes have to find a happy medium between keeping their folks engaged, but…not bothering them too much.

Yet, participants identified value in an ongoing communicative strategy. Lexi, a HCP, described a non-profit organization with which she had previously volunteered:

…there wasn't a lot of communication the rest of the year, …[if] I'm seeing regular updates…touch points throughout the year…not an overwhelming level, but at a level that says, oh, the money that I'm donating is really making a difference…There is something about repeated, not an overwhelming level, but…this is what we're doing with your funding. Thank you for supporting us.

For ongoing communication, storytelling emerged as a potential way to cut through the clutter.

4.4.1. Subtheme 4 a: Storytelling should be a primary communication tool

Participants repeatedly shared the value of storytelling as a primary communication tool. Among the multiple types of intentional communication, storytelling offered a specific and nuanced approach to connecting with various audiences in a deliberate way. Participants elucidated how storytelling creates connection opportunities to facilitate the development of a LCAN. For instance, Lexi, a HCP, highlighted: “We can't underestimate the power of narrative, the power of stories. I think that people often connect to real stories of human beings.” Regarding storytelling, Kathryn, a lay advocate stated, “you can supplement stories with statistics…but statistics don't get people in the heart the way someone's personal story does…and that will grab their attention.” Participants understood that storytelling is a powerful tool, with implications to creating an advocacy network that works.

In sum, the results from our focus groups and interviews emerged into four themes and one subtheme: (1) stigma casts a long shadow on lung cancer; (2) a lack of coordinated communication haunts lung cancer; (3) the hopeful future of lung cancer requires improved communication; (4) intentional communication is required to develop an advocacy network; and (4a) storytelling should be a primary communication tool. These themes created the basis for an approach to creating the organizational structure for LCANs that can address the broad needs of various constituents.

5. Discussion and conclusion

5.1. Discussion

The previous thematic analysis illustrates that LC exists within a complex system of communication that requires targeted and person-centered communication strategies. As such, if designed well, LCANs have the potential to improve the wellness of patients, caregivers, and HCPs [4], [5], [6].

Stigma constitutes the foundational challenge facing LC advocacy, compounded by a systemic lack of coordinated communication. Establishing a LCAN can effectively address both challenges by engaging stakeholders across diverse identities. The LCAN development process highlights OID as a mechanism for fostering community among advocates and the public. Communicatively, a LCAN should employ two core strategies: intentional organizational communication, and organizational and personal storytelling. Intentional communication strengthens advocate engagement and supports OID, while storytelling builds public awareness and cultivates empathy as a counter to stigma. Together, these components position a LCAN to advance a salient and hopeful future for LC thereby addressing the continuum of challenges the disease presents [4], [5], [6]. Fig. 2 provides a visual representation of the conceptual framework that resulted from participant data.

Fig. 2.

Conceptual Framework for Creating Lung Cancer Advocacy Networks.

5.1.1. The long shadow of the past: Stigma and LC

Participants identified LC's unique societal smoking-related stigma when compared to other cancers. Beyond societal stigma, participants themselves often used smoking history as a descriptor for someone with LC. For example: “My dad had lung cancer and never smoked a day.” While such remarks were not intended as judgmental, they nonetheless reinforce smoking-related stigma. This reflects a form of implicit bias, which is closely tied to stigma. Both impact LC. Notably, participants simultaneously acknowledged that LC has numerous non-smoking related causes. From societal stigma to implicit bias of LC advocates, stigma carries long-term sequalae for LC.

5.1.2. Lack of coordinated communication

Participants further identified a lack of coordinated communication as a significant barrier to address LC challenges. Participants noted that a LCAN could serve as a coordinating infrastructure for communication strategies targeting these issues. From a communication scholarship perspective, such coordination also functions to mitigate implicit bias and stigma, as elaborated in the following section.

5.1.3. Creating a LCAN can address LC challenges

Our data indicate that a LCAN can fill important gaps in care [4], [5], [6]. A LCAN can be deliberately structured to coordinate communication strategies and facilitate problem-solving through the OID process. Specific LCAN strategies identified in this study emerged from, and are grounded in, the complex identities of our participants.

5.1.4. Stakeholders with complex identities should inform a LCAN'S creation

To create an effective LCAN, it is vital to integrate diverse perspectives of stakeholders with varied and intersecting identities. Engaging varied stakeholders to create a LCAN supports the complex communication demands inherent in multidisciplinary LC care [38]. In this study, engaging diverse participants informed the LCAN's need to address implicit biases of advocates within the organization.

5.1.5. Lung Cancer advocacy networks must create space for organizational identification

Participants expressed a clear desire to form a LCAN with which they could identify (i.e., develop OID), and cultivate a like-minded community. Participants emphasized the importance of recruiting advocates with community-building competencies: individuals capable of creating nuanced engagement opportunities and recognize the contributions of fellow advocates, thereby deepening collective identification with the organization.

5.1.6. Intentional communication is required of a LCAN

Intentional communication serves multiple functions within a LCAN. Beyond raising awareness and countering stigmatizing narratives, participants conveyed that intentional communication facilitates community development and the OID process. Our participants indicated that organizational communication with advocates should be a) based upon their preferences, b) targeted to the channel, and c) tailored to recipients. Electronic media emerged as an important, accessible medium; however, given that messages are distributed across varied platforms (e.g., social media or email) each with distinct formats and functions the LCAN must carefully assess advocate communication preferences s and adapt the frequency and content to sustain engagement without creating communication overload.

5.1.7. Storytelling is vital for organizational communication for LC

Due to the prominence of the storytelling theme, we foregrounded storytelling as an integral component of the LCAN model. Participants described storytelling as a primary communicative vehicle for creating community, facilitating OID, educating the public while eliciting empathy, and inciting action.

Organizational storytelling can provide contextual grounding in which advocates identify with one another, strengthening OID [25]. During data collection, participants themselves engaged in storytelling and commented on the affective power of sharing stories in contrast to statistics alone. In this way, participants began the process of OID with the LCAN across disciplines, and other LC advocates. Which could improve multidisciplinary communication for LC care [38].

Organizational storytelling could be also utilized to educate the public about organizational events (e.g., fundraisers) [39]. Storytelling provides education (e.g., medical advances) and humanizes the disease experience; both can diminish stigma, lower resistance to new ideas, and prompt action [39] which is salient to solve LC challenges. As our participant Thomas asked, “Now that you've learned about these stories, how are you going to make a change?” In this way, storytelling operates as a multi-functional communication strategy to accomplish LCAN objectives, especially given the hopeful future of LC.

5.1.8. The hopeful future of LC

Participants noted that recent medical advances create a hopeful future for LC, although this knowledge remains relatively unknown to the public. Despite its obscurity, the hopeful future serves as a powerful motivator for LC advocacy and, specifically, for the impetus to establish a LCAN. Lung cancer need not remain the number one cancer killer; a LCAN with an effective organizational communication approach can impact change for LC. As Eva described, recent LC progress “keeps me shouting from the rooftops…it's just stunning!”

5.2. Innovation

This study presents key innovations for a LCAN design. First, few LCAN models address the need for OID among multidisciplinary advocates with intersectional identities. While this can create confusion, it also opportunities to holistically address the needs of patients with LC and their caregivers [5]. Additionally, this study extends prior work on narrative and storytelling in health communication. Although storytelling has been established as a useful method for facilitating information processing, building community, and addressing emotional dimensions of illness across the cancer control continuum [40], [41], it has not previously been applied as a primary organizational strategy within a LCAN specifically designed to challenge tobacco-related stigma. By centering patient and caregiver narratives in the co-design process, this LCAN model builds on and extends the co-design approach demonstrated with other disease communities [7]. Moreover, as medical advances continue to expand the population of LC survivors and caregivers [2], this LCAN approach addresses recent calls to extend advocacy network structures beyond traditional patient-only models to meaningfully include this growing community [4], [6]. The integration of survivors and caregivers as advocacy partners has the potential to challenge LC stigma at multiple levels by amplifying diverse, hopeful stories about LC care and outcomes.

5.3. Conclusion

This study offers a novel contribution to the literature by using participatory action research and communication theory as tools to create a LCAN. While our findings emphasize communicative strategies—particularly storytelling—that foster OID among diverse stakeholders, limitations are acknowledged. These limitations also illuminate promising avenues for future research in the development of advocacy networks.

One key limitation is the scope of our findings. Constructivist grounded theory [33] privileges depth over breadth and is inherently context-dependent. Our analysis is rooted in 24 interviews and focus groups with individuals connected through a variety of roles. Although this approach allowed for conceptual development grounded in participants' experience, our framework reflects the values, communicative patterns, and cultural dynamics of a specific group in a particular phase of network development. Future studies might expand the sample size or use comparative designs across different disease advocacy networks (e.g., breast cancer, HIV/AIDS, rare diseases) to evaluate whether similar communication processes shape OID across contexts.

Another limitation is the timing and phase of the studied LCAN's development. Our data were collected during the formative stage of the network, so our insights may be anticipatory or aspirational. While this stage is ideal for exploring identity formation and strategic messaging, it may not capture how OID evolves over time or how communicative practices shift once the network becomes operational. Longitudinal studies tracking the lifecycle of advocacy networks—from formation to maturity—could provide critical insight into how initial identity-building strategies are sustained, abandoned, or contested.

Another fruitful direction involves the modality of storytelling. Our study did not systematically investigate the impact of medium, such as digital platforms versus in-person storytelling, on identity formation and community cohesion. Given the increasing use of social media in health advocacy [42], future research could explore how various technologies shape advocacy networks.

Finally, our findings reaffirm the persistent challenge of stigma. Despite the potential of storytelling to reduce stigma and foster community, our participants highlighted the difficulty of encouraging engagement among those who may still harbor bias. This aligns with broader research on the social construction of illness stigma [43], particularly in diseases linked to lifestyle behaviors. Future studies could examine how advocacy networks reduce stigma for some but may unintentionally reproduce it for others. A critical communication lens that interrogates who is centered and left behind in the network's stories, leadership, and messaging is essential for ethical and inclusive advocacy.

In sum, this study provides a foundation for understanding the communicative processes involved in creating a LCAN and offers an approach that is grounded in the lived experiences of diverse stakeholders. Our research lays the foundation for further exploration into the communicative, intersectional, and strategic dimensions of advocacy networks. Specifically, future work could examine the impact of a LCAN's organization as it relates to organizational goals as well as how the development of a LCAN impacts the lives of its constituents and LC survivors. By centering communication as both a tool and a site of identity negotiation, we open new possibilities for understanding how advocacy organizations can foster belonging, challenge stigma, and drive systemic change.

Studies in human

This study was performed in compliance with relevant laws, regulatory frameworks and guidelines where the research took place.

The Indiana University granted an exemption. The authors provided the following explanation: This study maintained ethical standards and was low-risk to participants; it was thus exempted from a full review by the IRB.

CRediT authorship contribution statement

Darla J. Imhausen-Slaughter: Writing – original draft, Validation, Software, Resources, Project administration, Investigation, Formal analysis, Data curation. Krista J. Longtin: Writing – review & editing, Visualization, Supervision, Funding acquisition, Conceptualization.

Informed consent and patient details

Written informed consent to take part in the study and to publish the article has been obtained from all participants or their legal representatives. The privacy rights of participants have been observed.

Funding

This work was supported by the Lilly Oncology Lung Cancer Advocacy Fund.

Declaration of competing interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests:

Krista Longtin reports financial support was provided by Lilly Oncology Lung Cancer Advocacy Fund. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A. Appendix

A.1. Interview/Focus Group Protocol

• •Facilitator comments:

Thank you for agreeing to be a part of this focus group. As a reminder, this is part of a research study here at IU about how to build a strong volunteer network around lung cancer advocacy. You will receive a small e-gift card after your participation today–we greatly appreciate your thoughts. The focus group will be recorded and stored securely. Is that ok with you? We will do our best to protect your identity by referring to you with a pseudonym and reporting results of the study in the aggregate. Please don't hesitate to leave or let us know if you feel uncomfortable answering a question. Thank you again! We look forward to hearing more from you.

• •Opening Question

• 1).What motivates you to be involved with this lung cancer advocacy group? What is an aspect of your work of life experience that brought you here today?

• •Introductory Questions.

• 2.I know we are here to talk about lung cancer, but let's think back to a time that you got excited about a cause. This could be related to your children's school or something that happened in the community. Tell me a story about…

• a.How were you introduced to this program?
• b.What do you remember most about that time?
• c.How was that time/event structured?
• d.Can you tell me a story of why you decided to get involved?
• e.Can you tell me about a time when you gave a one-time donation or participated once in a group or event BUT did not stay involved? What do you feel limited your interest or ability to continue to participate?

• •Key Questions.

• 3.When you think of building a community around lung cancer:

• a.How can more volunteers/participants be recruited to get involved?
• b.How do you feel community members and health care providers can work together well in this group?
• c.Who else can you envision being interested in participating in this group? Why?

• 4.How do you envision this group adding value to your life and the lives of others dealing with lung cancer?
• 5.What do you feel the local community can do to support those with lung cancer or solutions surrounding lung cancer?

• a.Tell me more about what you see as the biggest need surrounding lung cancer.

• 6.What challenges do you envision a lung cancer advocacy group may face?

• a.What challenges do you envision yourself facing in being a part of this advocacy group?

• 7.What do you see as the biggest priorities in developing this group?

• •Ending question

Is there anything else related to the topics we discussed today that you think I should know or didn't ask that you have not yet shared?

Appendix B. Appendix

Participant Identities

	Identities to LC			Additional notes
Pseudonym
Lexi	HCP			Oncology fellow
Janet	HCP
Angela	HCP	Researcher	LC patient	Shared smoking status
Mary	HCP
Lena	HCP	Researcher
Khalil	HCP			Oncology fellow
Kimberley	Lay advocate	Lay caregiver		Highlighted identity as a mom with young children
Eva	Lay advocate	Lay caregiver		Identified as a survivor
Dion	Lay advocate			College student aspiring to become HCP
Tara	Lay advocate	Lay caregiver		Family member died of LC
Marcos	HCP			Oncologist
Kathryn	Lay advocate	HCP		Smoking cessation work
Pamela	Lay advocate	Lay caregiver		Cousin died of LC
Thomas	HCP			Oncologist
Tiffany	Lay advocate	Lay caregiver		Dad had LC
Helen	HCP			Nurse Navigator
Anita	Lay advocate	Lay caregiver		Dad died of LC
Kay	LC patient			Shared smoking status
Hannah	HCP
Camelia	HCP
George	LC patient			Shared smoking status
Levi	HCP
Blake	Physician	Lay advocate	Lay caregiver	Father-in-law has LC
Neda	Lay advocate