Abstract
Introduction:
People who identify as Black, Indigenous, and People of Color (BIPOC) represent an increasing proportion of patients with cystic fibrosis (CF). Despite the transformative potential of highly effective modulator therapies, BIPOC people with CF (pwCF) experience disproportionately worse outcomes, including lower lung function and increased risk of hospitalization. Social and structural conditions exacerbate these inequities. To better understand these dynamics, this study used photovoice, a community-based participatory research method, to explore how BIPOC pwCF describe the influence of systemic and structural inequities on their health and disease management.
Material and Methods:
Using the photovoice method, participants documented their lived experiences through photography and facilitated group discussion using the
Results:
Participants described challenges unique to BIPOC pwCF, including delayed diagnosis of CF, limited CF knowledge among nonspecialist providers, and systemic barriers such as geographic isolation, language differences, and ineligibility for modulator therapies. Many described the need to self-advocate, seek alternative resources, or forgo local care in favor of distant CF centers.
Conclusions:
BIPOC pwCF face systemic barriers across the care continuum that reflect a gap between the promise of modern CF care and equitable access to it. Participants’ narratives underscore the enduring consequences of viewing CF as a “White disease” and the urgent need for structural reform to ensure that advances in CF treatment are accessible and effective for all patients, regardless of race or ethnicity.
Primary Source of Funding:
Cystic Fibrosis Foundation.
Keywords
Introduction
People with cystic fibrosis (pwCF) who identify as Black, Indigenous, and People of Color (BIPOC) face a disproportionate disease burden and worse health outcomes than White pwCF. 1 Although CF has long been framed as a predominantly “White disease,” 2 the racial and ethnic demographic composition of the population is shifting. Between 2005 and 2020, the proportion of Black pwCF rose from 4.0% to 4.7%, Hispanic/Latine from 6.3% to 9.6%, and other racial/ethnic groups from 2.1% to 3.9%. 3 While the changes in racial and ethnic representation are within a small percentage difference of previous estimates, in the context of a rare disease (with a small total n), these changes represent a substantial shift in who makes up the CF population. Growing representation has not translated into equitable health care outcomes, however, as Black pwCF experience lower lung function compared to White pwCF, even when matched for age, sex, and CF genotype, 4 and Hispanic/Latine pwCF experience higher mortality rates than non-Hispanic pwCF. 5 Regional inequities are also evident, as Black pwCF in the Southern United States face an elevated risk of repeat hospitalizations for CF exacerbations compared to White counterparts. 6 These disparities underscore the importance of examining how structural and systemic factors shape care experiences for BIPOC individuals within this historically marginalized group.
Decades of research highlight how racial/ethnic bias in health care shapes health outcomes for BIPOC communities. 7 The 2003 Unequal Treatment report from the Institute of Medicine found that racial/ethnic discordance between patients and providers influences providers’ medical decision-making, leading to differences in health outcomes. 8 Implicit anti-Black bias among health care providers has been documented with prevalence ranging from 42% to 100%,(8) and these findings were reaffirmed by later reviews in 2017 9 and 2018. 10 Structural racism further compounds inequities through policies and systems that shape housing, education, income, and criminal justice. 11 For BIPOC pwCF, these inequities contribute to socioeconomic disadvantages, including lower household income and greater use of Medicaid compared to non-Hispanic White pwCF. 12 Living in the Southern United States, where socioeconomic inequities are prevalent, 1 likely worsens these racial/ethnic inequities.
This study aimed to explore how BIPOC pwCF in the Southeastern United States experience overt and covert racism, including systemic and structural inequities across health care, using the photovoice methodology. Given the historic marginalization of BIPOC voices, a participatory method was appropriate for capturing nuanced, racialized inequities embedded within health care systems and institutional practices. The visual data of photographs serve as concrete anchors for storytelling, enabling participants to document and communicate how structural forces, such as racism, access barriers, and institutional neglect, are experienced in everyday interactions with health care and social systems.13,14 Facilitated group dialogue promotes collective meaning-making and knowledge production while creating opportunities to inform clinicians, researchers, and policymakers. By centering the perspectives of those most affected, this participatory approach ensures that study findings are grounded in lived experience and oriented toward community benefit and structural change. 14
The Social Ecological Model (SEM) guided analysis, recognizing that health and behavior are shaped by multiple, interconnected levels of influence, including individual, interpersonal, community, and societal factors (Fig. 1).15,16 In the context of CF, the SEM underscores that health outcomes are not solely determined by individual choices but are profoundly shaped by relationships, health care systems, and broader social and structural forces.15,16 Photovoice and the SEM are highly complementary: The SEM provides a conceptual structure for understanding how inequities operate across multiple levels, while photovoice offers a participatory method for documenting how these factors are experienced and navigated. Guided by the SEM, this article focuses on community and system-level influences, examining how structural barriers shape access to care, health outcomes, and quality of life for BIPOC pwCF in the Southeastern United States while highlighting the layered effects of racism on well-being and the resilience required to navigate inequitable systems.
Centers for Disease Control and Prevention four-level Social Ecological Model.
Materials and Methods
Our team included a PhD-level facilitator with photovoice expertise (K.Z.B.), a CF physician-scientist (S.S.), and a doctoral student in public health who coordinated the study (B.W.J.). To minimize potential influence on participant sharing, neither S.S. nor B.W.J. facilitated photo sessions, given their prior clinical roles with pwCF at this center. All sessions were led by K.Z.B., a neutral team member with specialized experience in participatory visual methods, who conducted the orientation and photo sessions.
Study approach
Photovoice is a participatory approach that enables participants to document lived experiences and community issues through photography. (13) Photos serve as the impetus for group discussions, guided by the
Recruitment and participants
The study was approved by the University of North Carolina at Chapel Hill’s (UNC) Institutional Review Board and Office of Human Research Ethics (24-1633). From August to October 2024, participants were recruited from the UNC Adult CF Center via UNC Health My Chart, a secure health messaging platform, and telephone outreach. A MyChart message, including study information and eligibility criteria, was sent to all patients by the nurse coordinator, allowing patients to self-identify as BIPOC (e.g., African American/Black, Asian American, Latine American, Native American, Arab American, and Pacific Islander American).
Additional eligibility criteria included receiving CF care at UNC Health, basic camera proficiency, and availability to participate in all study sessions. At the time of recruitment, the UNC Adult CF Center served 318 patients; medical record data indicated 302 White patients, 16 Black patients, and 15 Hispanic patients (race values were not mutually exclusive). Recognizing the potential for misclassification, recruitment strategies emphasized self-identification.
Twelve individuals expressed interest and reviewed study and consent materials with the project coordinator. Five individuals consented to participate (ages of 28–49 years), and four completed the study; one participant withdrew prior to completing photo assignments. Seven participants cited work schedules and caregiving responsibilities as barriers to participation, and one ultimately declined due to discomfort with the study topic.
Data collection
Due to stringent infection control guidelines prohibiting in-person contact among pwCF,
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all five sessions were conducted virtually. A two-hour orientation (Session 1) introduced the photovoice process and the SHOWED method and developed the discussion prompts related to participants’ experiences.
20
Sessions 2–4 focused on one prompt (i.e., photo assignment):
Why are CF symptoms overlooked in BIPOC patients?
What are better ways to support BIPOC patients with CF?
What are the limitations that BIPOC CF patients face that influence their daily life (e.g., financial, work, transportation, insurance, physical/mental health)?
During each session, participants shared one to two photos and described the photos’ relevance to the photo assignment. The group then selected one image for a deeper discussion using SHOWED. All discussions were recorded, transcribed, and analyzed.
A final member-checking session (Session 5) allowed participants to refine preliminary themes and prioritize the three themes highlighted in this article for future dissemination. Participants received a $30 gift card for each session attended.
Analysis approach
We employed Research Talk’s Sort and Sift, Think and Shift© method, a qualitative approach grounded in phenomenology, grounded theory, narrative research, and case study methodologies. 21 This iterative method emphasizes deep engagement with the data through multiple analytic strategies, including memo writing, topic tracking, and quote inventorying to identify patterns both within individual transcripts (vertical) and across participants (horizontal analysis). 21 This method is designed to support multidimensional interpretation, ensuring that themes capture both nuanced individual experiences and broader group-level patterns. 21
One team member (B.W.J.) conducted the initial review of session transcripts, annotating key quotations and writing analytic memos in response to the guiding question: What did we learn from this data collection episode (i.e., transcript)? Preliminary themes were identified within each photo session. Following the final session, two team members (B.W.J. and S.S.) reviewed themes across all sessions to develop a consolidated set representing the full dataset.
A matrix was then created to organize themes by participant ID, and annotated data were independently mapped to themes by B.W.J. and S.S. using separate matrices. These matrices were compared to assess consistency in theme-quote alignment, with discrepancies resolved through discussion and consensus. The research team (B.W.J., S.S., and K.Z.B.) subsequently refined the themes through iterative, collaborative discussion. A final member checking session was conducted to confirm that the themes accurately reflected participant perspectives and were grounded in lived experience. All quotes were approved for dissemination efforts by the participants.
The SEM was applied after theme identification as a conceptual framework to situate identified themes across levels of influence. Although it did not guide coding, the SEM was used to illustrate the complexity of participant experiences and contextualize them within broader community and system-level contexts that ultimately shape health and health care engagement.
Results
Table 1 presents characteristics of the five participants. All self-identified as BIPOC; specific racial/ethnic identities were not reported to protect anonymity.
Demographic Characteristics of Photovoice Participants
aNC median household income is based on U.S. Census Bureau data at the time of data collection.
Seven themes were identified in the analysis, reflecting racial/ethnic inequities for BIPOC pwCF in the Southeastern United States (Table 2). Following theme identification, the SEM was applied to establish themes by level of influence. Figure 4 maps key elements described by participants and reflected within the identified themes onto the SEM, highlighting how racialized experiences in CF care emerge from the interaction of community and system-level forces over the individual’s life course.
Participant-generated photo responding to the discussion prompt: “Why are CF symptoms overlooked in BIPOC patients?”. BIPOC, Black, Indigenous, and People of Color; CF, cystic fibrosis.
Themes Identified in Qualitative Analysis
During the member-checking session, participants were asked to prioritize themes for dissemination in light of journal word limits and presentation constraints. This process was guided by discussion and consensus, ensuring that the themes selected reflected those considered most salient by participants. Racialized Diagnosis and the Emotional Toll of Misdiagnosis and Differential Access to Resources were retained for dissemination. Additionally, two themes from Table 2 (Theme 3 and Theme 5) were combined into a single theme: Challenges in Emergency Preparedness and Non-Specialized Health Care Settings. While commonalities were observed across participants, differences in experiences were examined by age at diagnosis.
Theme 1: Racialized diagnosis and the emotional toll of misdiagnosis
Participants described systemic racial/ethnic bias and limited awareness of CF in BIPOC communities as contributors to delayed diagnoses. These diagnostic gaps often resulted in avoidable complications and reduced quality of life.
For those diagnosed in adulthood, the need for more inclusive and routine CF screening was a key concern. One participant (diagnosed at age 25) emphasized the frustration with racial and ethnic assumptions in screening: “I wish they checked anyone with deficiencies in lung function. The sweat test was a simple 10-15-minute test. And since it’s genetic…you can’t just look at somebody and go, ‘Oh, they probably don’t have it.’ It seems pretty lazy.”
Another participant (diagnosed at age 24) reflected: “With screening, my life would have been different for the better. I would have had treatments instead of lung damage, and I wouldn’t have chosen a career where I was around little kids and stayed sick.”
One participant (diagnosed at age 25) further illustrated the sense of invisibility within CF care: “I see the green as the norm and the other colors stand out. So, they are different but they’re still a part of the tree or the bush….I guess I’m looking at it like that. It’s not green… the little specs are different and are the BIPOC CF patients. There’s not a whole lot, but we’re still part of a whole. We may stand out when it comes to the diagnosis you know, because it’s not considered normal like the green” (Fig. 2). Participant-generated photo responding to the discussion prompt: “What are the limitations that BIPOC CF patients face that influence their daily life?”.
The corresponding photograph (Fig. 2) visually represents this metaphor, highlighting participant perspectives on visibility within the CF community.
Collectively, these narratives underscore the consequences of diagnostic bias and the need for early, equitable detection.
Theme 2: Differential access to resources
Participants described inequities in access to CF resources shaped by genetic, geographic, and linguistic factors. These inequities impact individuals’ ability to manage their CF, prompting some participants to develop strategies to navigate gaps in care.
Breakthrough CF medications have significantly improved the quality of life for many. However, treatment access is limited to pwCF with specific genetic mutations. One participant (diagnosed at age 24) reflected on this, stating: “The new medications have been life-changing. But the sad part is, some mutations aren’t able to use it.”
Racial and ethnic inequities in medical research and treatment development were also highlighted: “I remember a coworker had Sarcoidosis, and it’s like CF, but it’s what people of color get. They said, ‘It’s a good thing that you have CF and not Sarcoidosis because there are a lot more resources in CF, and sure enough, it has come to pass like that.”
This underscores the perception that medical advancements have prioritized conditions more commonly associated with White populations, leaving BIPOC populations with less support.
Geographic barriers play a role in shaping participants’ experiences. Those living in rural areas described obstacles in accessing care due to transportation limitations. One participant (diagnosed at birth) explained: “It’s harder for me to get to a doctor’s appointment because there are no bus routes. I don’t live in the city. There’s no Uber. There’s no Lyft. I live about two and a half hours away from my hospital” (Fig. 3). Application of the SEM to photovoice study findings. SEM, Social Ecological Model.
This lack of transportation infrastructure exacerbates health care inequities, making it difficult for some individuals to receive timely, consistent care.
The shortage of bilingual and bicultural providers emerged as a barrier to care. One participant (diagnosed at birth) reflected on how their Spanish-speaking mother may not have fully understood available financial resources, stating:
“Maybe it was mentioned, but my mom, she’s Spanish, may not have understood what they were trying to tell her.”
This underscores the need for linguistically accessible services to ensure families receive and comprehend essential information, promoting full engagement in care.
Faced with systemic barriers, some participants, particularly those diagnosed later in life, described creating strategies to navigate gaps in care. One individual (diagnosed at age 25) described how they utilized online resources to learn diaphragmatic breathing to improve their lung function:
“I scoured pretty much every video on the internet… and the more I did it, the better the results became, and it is just part of my life now.”
While this demonstrates resilience, it also illustrates an added burden for those diagnosed in adulthood, who must rapidly acquire complex disease management knowledge without the benefit of early, provider-led education. Not all patients have equal access to digital tools or the time to independently seek and evaluate medical information. These disparities further widen inequities in CF care and underscore a systemic gap in postdiagnostic education, particularly for those entering CF care later in life.
Theme 3: Challenges in emergency preparedness and nonspecialized health care settings
Participants described significant challenges seeking care from general practitioners and local hospitals due to limited knowledge about CF generally and its presence in BIPOC populations. These gaps in clinical expertise and awareness resulted in delayed diagnoses and suboptimal treatment, reinforcing perceptions of nonspecialized settings as unreliable or unsafe.
One participant (diagnosed at age 25) attributed these challenges to broader educational and structural inequities within health care systems that disproportionately affect institutions serving communities of color: “It could be an education issue as well- like people of color may end up in institutions that have people who are not adequately trained, or who, you know, maybe don’t care quite as much or what have you… they just don’t have the knowledge or the information that they need to make decisions…”
Another participant (diagnosed shortly after birth) echoed these concerns and described additional barriers to receiving even routine treatments for common illnesses in nonspecialized settings. They explained that when directed to a Primary Care Provider for a minor issue, providers expressed uncertainty about prescribing basic medications due to limited familiarity with CF in adults: “You go in with a cold, and your specialty doctor says, ‘go to your general practitioner and tell them you need a Z-pack.’ But then you tell the general practitioner you have CF, and they say, ‘I can’t recommend any medication. I have no idea how to deal with you as an adult.’ So, you end up having to email your CF doctor and say, ‘They don’t know what to prescribe. Can you confirm it?’ And it becomes like a whole thing.”
This account illustrates how gaps in CF knowledge within general practice settings create additional burden for pwCF, even for routine care, and reinforce reliance on specialty providers for issues typically managed in primary care.
Participants’ experiences being misdiagnosed or treated with skepticism, often tied to racialized assumptions about who has CF, further contributed to perceptions that these settings were ill-equipped to meet their needs. As a result, many participants expressed hesitation or outright avoidance of local hospitals, opting to rely on specialized CF care whenever possible. A participant (diagnosed at age 24) described their experience at a local hospital: “If I’m admitted into the local hospital, the doctors come in, and it’s like, ‘You have CF?! But you’re Black and you’re not skinny!”
A different participant (diagnosed at age 25) shared: “It’s an ongoing joke that you don’t go to (name of hospital) because your care will be questionable at best.”
Participants emphasized the importance of direct communication with their CF provider to mitigate risks when seeking care in nonspecialized settings. One participant (diagnosed at 6 months old) explained their approach to managing potential health crises: “Once I start feeling sick, I contact my doctor, see what their recommendations are, see if they can send medications, or if I need to meet up with them at the hospital.”
While this approach may help ensure timely, appropriate care, it also reflects a broader systemic gap, where CF specialists are relied upon to compensate for nonspecialized settings where BIPOC pwCF may face bias or limited expertise.
For those diagnosed later in life, the relatively short relationship with their CF provider left them feeling less prepared for emergencies. One participant (diagnosed at age 25) recalled an experience with a collapsed lung, saying, “I already knew I had (CF), but I didn’t know anything about that stuff. When it happened, I had no idea what was going on. It was just like, ‘Is this the end?”
This narrative illustrates how delayed CF diagnosis can limit patients’ foundational knowledge about disease management, compounding the challenges of navigating complications after years of undiagnosed illness and potentially high disease burden.
Discussion
We employed the photovoice method to explore the lived experiences of BIPOC pwCF in the Southeastern United States. Using a qualitative approach, the study aimed to foster dialogue regarding racialized experiences and systemic/structural inequities shaping health outcomes across the CF care continuum. Participants’ narratives revealed community and systems-level barriers that accumulate across the life course and must be addressed to ensure equitable care and outcomes. These findings are situated within an SEM framework to illustrate how multilevel influences shape lived experiences of CF (Fig. 4).
The consequences of a system not built for BIPOC PwCF
Participants diagnosed in adulthood highlighted the profound consequences of delayed CF diagnosis, often rooted in provider bias and historical exclusion of BIPOC populations from early screening protocols. Early diagnosis is crucial for optimal health outcomes, as it leads to early and aggressive care, typically at a credentialed CF center. 22 This includes surveillance for and management of CF exacerbations to preserve lung function and the host of CF-related endocrine and gastrointestinal manifestations that contribute to morbidity and mortality. With the availability of CF transmembrane conductance regulator (CFTR) modulators, which restore partial protein function, early diagnosis has become increasingly critical, as earlier initiation is associated with improved health trajectories.23,24 Yet, participants described how implicit racial/ethnic biases and entrenched beliefs about CF as a “White disease” led to severely delayed diagnoses. Several reflected on how their lives might have differed with a childhood diagnosis. These narratives underscore the need for race-neutral clinical consideration, expanded provider education on CF, and reforms to newborn screening protocols. While all U.S. states now screen for CF, most rely on limited mutation panels that underrepresent variants found in BIPOC populations, resulting in lower sensitivity for these infants.25,26 As of March 2023, only five states implemented full CFTR gene sequencing, leaving many children undetected, particularly those with rare or underrepresented variants.27,28
Postdiagnosis inequities in access
Participants described community-level inequities persisting well beyond diagnosis, including differential resources based on genetic, geographic, linguistic, and digital literacy factors. Discussions revealed that for pwCF with mutations not eligible for modulator therapies, there is a sense of exclusion from the optimism surrounding clinical advancements now standard for others with CF. They also noted that these clinical advancements, while significant, amplify the impact of structural racism in medical research, which has historically prioritized diseases affecting White populations. 29 One participant observed that while CF has received more research attention and investment than many conditions more prevalent in BIPOC communities, this progress fails to equitably reach BIPOC pwCF.
Geographic barriers further hindered access to care. Rural participants described the burden of traveling long distances to CF centers, compounded by limited public transportation and the absence of ride-share options. These findings echo existing literature on the “southern rural health penalty,” that is, the disproportionately high mortality and morbidity in rural southern regions of the United States compared to urban areas and non-Southern rural areas. 30 Linguistic barriers further shaped participants’ care experiences and underscored the urgent need for culturally and linguistically appropriate services and bilingual providers.
For those diagnosed with CF later in life, the consequences of systemic gaps in care were especially profound. One individual described relying on internet videos to learn breathing techniques. While this reflects individual resilience, it is also a clear indicator of inequitable access to provider-led education. Not all patients have equal access to digital tools, health literacy, or the time to independently research and implement strategies. Limited access is compounded by decreased time to familiarize oneself with the nuances of CF care, especially when diagnosed later in life. The need to seek external resources suggests a troubling lack of comprehensive, proactive education within clinical settings for those diagnosed in adulthood.
Strengthening connections between CF centers and local health care systems
Participants shared difficult encounters in community hospitals and emergency departments where providers questioned their diagnosis based on race or body type. These encounters eroded trust in local systems, prompting some to bypass local care and travel long distances to see their CF specialist. This strategy carries risks, as direct communication with their CF care team during a potential emergency may not always be feasible and can overburden subspecialty teams, effectively positioning CF providers as de facto primary care physicians, which is out of scope of their training.31,32 These gaps in emergency preparedness highlight how delayed diagnosis and fragmented care compound risk.
These findings magnify the need for system-wide strategies to bridge gaps between CF centers and local health care systems. Solutions like remote consultations, CF-specific continuing education for general providers, and models like Project Extension for Community Healthcare Outcomes or telehealth expansion have shown promise in chronic disease management and could improve continuity of care for pwCF. 33
Implications
Findings from this photovoice study highlight the urgent need for equity-oriented reforms across the CF care continuum that extend beyond individual clinical encounters. At the systems level, findings support the calls for expansion of race-neutral newborn screening approaches, including broader CFTR gene sequencing, alongside provider education that explicitly addresses the historical misclassification of CF as a “White disease.”25–27 Without such reforms, delayed diagnosis among BIPOC individuals will continue to undermine the benefits of early intervention and emerging therapies.
At the community level, CF centers must strengthen bidirectional partnerships with local hospitals and emergency departments, particularly in rural and under-resourced regions. Models that promote shared care, remote consultation, and CF-specific training for nonspecialist providers may reduce diagnostic skepticism, improve emergency preparedness, and prevent unnecessary care delays. 33 Ensuring access to linguistically and culturally responsive education is also critical, particularly for individuals diagnosed later in life who have less time to acclimate to the demands of CF self-management.
Strengths and limitations
This study demonstrates the feasibility of adapting photovoice methods for pwCF, a population for whom strict infection control guidelines necessitate innovative research approaches. Virtual sessions supported collective meaning-making while maintaining safety. A key strength of this study lies in its intentional focus on depth rather than breadth. Working closely with a small group of participants allowed for sustained engagement across multiple sessions, yielding rich accounts of lived experiences that may not emerge in larger or time-limited study designs. This depth was further strengthened through member-checking, which enhanced analytic credibility.
This study is not without limitations. Recruitment from a single site, driven by budget constraints, may limit the transferability of findings. As with all photovoice studies, findings reflect the experiences of participants who self-selected and may not represent the diversity of perspectives among BIPOC pwCF. However, the aim of this work was not representativeness but rather to illuminate structural and systemic processes shaping inequity through in-depth, participant-driven inquiry.
Conclusions
BIPOC pwCF face systemic barriers across the care continuum that highlight a gap between the advances of modern CF care and equitable access to them. Narratives highlighted how race/ethnicity, geography, language, and delayed diagnosis intersect to shape access to care, eligibility for new therapies, and the burden of self-advocacy. These experiences reinforce the enduring consequences of framing CF as a “White disease” and call attention to the urgent need for advancing a more equitable CF care system. To do this will require not only acknowledging racial/ethnic inequities but also taking deliberate steps to ensure care models and research agendas are responsive to those historically marginalized in the United States.
Authors’ Contributions
B.W.J.: Conceptualization, methodology, formal analysis, investigation, data curation, resources, writing—original draft, project administration, and funding acquisition. S.S.: Conceptualization, formal analysis, writing—review and editing, supervision, and funding acquisition. K.Z.B.: Conceptualization, methodology, investigation, writing—review and editing, supervision, and funding acquisition.
Footnotes
Acknowledgments
The authors extend their deepest gratitude to the photovoice participants who generously shared their time, experiences, and insights, and their voices shaped every aspect of this work. They are honored by the participants’ trust, inspired by their resilience, and committed to amplifying the truths they so powerfully conveyed. They gratefully acknowledge the
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This study was supported by the Cystic Fibrosis Foundation through the Student Traineeship Award (grant number: 006721H223).