Abstract
Background
One‐third of people with cystic fibrosis (pwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among pwCF or their caregivers and summarized their perspectives on food insecurity screening in the cystic fibrosis (CF) programs where they receive care.
Methods
Semi‐structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content‐analysis approach with a constant comparative method to generate themes.
Results
A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and nine parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) food insecurity among CF patients and their families is onerous, (2) financial constraints imposed by the CF disease contribute to food insecurity, (3) federal and state programs provide limited food assistance, and other support is minimal, (4) shame and stigma engulf conversations around food insecurity with CF care teams, and (5) food insecurity screening in clinical settings is critical.
Conclusions
Food insecurity among pwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for pwCF.
Keywords: cystic fibrosis, food insecurity, nutrition, qualitative research, stigma
1. INTRODUCTION
Cystic fibrosis (CF) is a genetic multiorgan system disease, and nutritional status plays a key role in CF outcomes. 1 , 2 , 3 , 4 People with CF, especially those with pancreatic insufficiency, require medically prescribed diets to ensure proper nutrition. Historically, the CF Foundation (CFF) has recommended an intake of at least 500 calories per day over the standard daily requirement, with fat intake composing about 35%–40% of those calories. 3 , 5 , 6 Even in the era of highly effective CF modulators, CF‐related nutritional requirements remain financially taxing and food insecurity is an ongoing concern. 7
Food insecurity refers to the limited or uncertain availability of nutritionally adequate foods, with either disrupted eating patterns or reduced food intake. 8 In the United States, people with CF (pwCF) experience food insecurity at 3 times the rates of the general population, with approximately one‐third of pwCF reporting a lack of consistent and guaranteed access to healthy and nutritious food. 9 This prevalence rose sharply during the COVID‐19 pandemic. 10 The higher food insecurity rates among pwCF may be attributed to multiple factors, including increased caloric needs, restrictions on career trajectory and need for time off from work for parents, disease‐related disruptions of education, and limitations of occupational choices and employment opportunities. 11 Food insecurity may contribute to the inability to achieve and maintain appropriate caloric intake among pwCF, thereby leading to malnutrition. 11 , 12 In the general population, food insecurity is also implicated in several other adverse health outcomes, such as poor glycemic control and diabetes, 15 , 16 hypertension and obstructive airway disease, 17 and other physical and mental health comorbidities. 18 The CF‐specific evidence available indicates potential adverse health implications for pwCF as well. 11
Familial and societal factors, including financial and educational status and food access and quality, influence the ability of individuals to follow dietary recommendations, both in the general population 13 , 14 , 15 , 16 and among pwCF. 17 , 18 , 19 , 20 , 21 , 22 Despite the value placed on diet and nutrition in CF, few studies have focused on food insecurity in this population. Therefore, we interviewed pwCF or their caregivers to explore lived experiences of food insecurity, perceptions and interactions surrounding screening for food insecurity, emotions regarding disclosure of food insecurity, and experiences with seeking food assistance. A better understanding of this complex issue can facilitate more accurate and ethical assessment of food insecurity and more effective interventions and support at CF care centers and beyond. Thus, the purpose of this study was to understand the experiences of pwCF with food insecurity, screening for food insecurity, and available programs that address food insecurity, and to seek their recommendations regarding the above.
2. METHODS
2.1. Study design and population
We conducted semi‐structured qualitative interviews with two stakeholder groups: (1) adults with CF and (2) caregivers of children with CF. Inclusion criteria were CF diagnosis (or caregiver of a child with a CF diagnosis), current or prior experience of food insecurity, and followed at a CFF‐accredited CF care program. We used purposive sampling with planned enrollment of 26 individuals with documented food insecurity and other unmet needs by their CF care team. Potential participants were identified by their CF care team providers and encouraged to contact the study team for an interview about their experiences. We recruited a national sample representing all nine US Census geographic divisions to account for local and state differences in food assistance programs, resources, and policies and differences in food insecurity screening between CF care centers. Participants provided informed consent and the study was approved by the Institutional Review Board at the University of Alabama at Birmingham (protocol IRB‐300008742).
2.2. Data collection
Collaborators included a multidisciplinary team of CF clinicians, researchers, CFF staff, and pwCF who were part of the CFF Food Security Research Committee. Based on a review of the literature, a semi‐structured interview guide (Appendix A) was drafted and reviewed by collaborators for content, item clarity, and relevance. Interviews lasted between 30 and 60 min each and were audio‐recorded and transcribed verbatim. Each participant was compensated with a $50 gift card for their time. Interviews were conducted by two interviewers (JB, RG) from March through July 2022.
2.3. Data analysis
Transcripts were reviewed by two independent coders (SJN, GB) and coded with NVivo 11.4.3 software. We used line‐by‐line coding of all responses, followed by focused coding for directed codes. Themes were generated with constant comparative method, 23 which is used for categorizing and comparing qualitative data to identify commonalities for analysis purposes. 24 Trustworthiness was achieved through data triangulation (convergence of information from different sources designed to develop a comprehensive understanding of the phenomena under study) and peer debriefing (external review and opportunities to query the data further). 25 The study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guideline. 26
2.4. Research team and reflexivity
All members of the research team were trained in qualitative research methods. The study design was led by GRO. Interviews were conducted by RG and JB. The independent coders (SJN and GB) did not participate in other core activities of the study and had prior experience in analyzing qualitative data. 27 , 28 , 29 , 30
3. RESULTS
The sample included 26 participants (17 adults with CF and nine parents of children with CF) receiving care at 22 CF Centers in 16 US states across nine US Census geographic regions. Participants were predominantly female (92%) and White (88%); other demographic characteristics are shown in Table 1. The qualitative data analysis identified five overarching themes, illustrated in Figure 1 and presented in detail below. Themes are supported by select quotations, with additional representative quotations provided in Table 2.
Table 1.
Select characteristics of interview participants (N = 26).
| Characteristic | N (%) |
|---|---|
| Sex | |
| Female | 24 (92%) |
| Male | 2 (8%) |
| Race | |
| White | 23 (88%) |
| Black | 1 (4%) |
| Mixed | 1 (4%) |
| Not reported | 1 (4%) |
| Relation to CF | |
| Adult with CF | 17 (65%) |
| Caregiver of a child with CF | 9 (35%) |
| Geographic region | |
| Region 1: Northeast | 4 (15%) |
| Division 1: New England | 2 (7.7%) |
| Division 2: Middle Atlantic | 2 (7.7%) |
| Region 2: Midwest | 3 (11.5%) |
| Division 3: East North Central | 2 (7.7%) |
| Division 4: West North Central | 1 (3.8%) |
| Region 3: South | 11 (42.3%) |
| Division 5: South Atlantic | 6 (23.1%) |
| Division 6: East South Central | 3 (11.5%) |
| Division 7: West South Central | 2 (7.7%) |
| Region 4: West | 8 (30.8%) |
| Division 8: Mountain West | 5 (19.2%) |
| Division 9: Pacific West | 3 (11.5%) |
Figure 1.
Overarching themes.
Table 2.
Representative quotations, by theme.
| Caregivers of children with CF | Adults with CF |
|---|---|
| Theme 1. Food insecurity is onerous | |
|
|
| Theme 2. Financial constraints imposed by the CF disease contribute to food insecurity | |
|
|
| Theme 3. Federal and state programs provide limited food assistance, and other support is minimal | |
|
|
| Theme 4. Shame and stigma engulf conversations around food insecurity with CF care teams | |
|
|
| Theme 5. Food insecurity screening in clinical settings is critical | |
|
|
Abbreviation: CF, cystic fibrosis.
Theme 1
Food insecurity is onerous
Having limited or uncertain availability of food was a common and debilitating experience among participants. Responses revealed constant struggles to maintain sufficient food supply:
That's a common in my household. Between paychecks, all the time. We're a single‐income household. (Caregiver of a child with CF)
It definitely is a common thing and not exactly fun. End up being a lot of ramen noodles and macaroni and cheese. (Adult with CF)
Participants were acutely aware of the negative implications of food scarcity for the health of the pwCF. Some discussed having a hard time maintaining optimal weight due to lack of food:
It's hard to gain weight when you are having to worry about making your food last to the end of the month. (Adult with CF)
[…] he went times where he'd stay stagnant at the same weight. He wouldn't be growing. They got to where they ended up having to put a feeding tube in him. (Caregiver of a child with CF)
Others focused on the issue of having to eat unhealthy food because that was all they could afford:
It's really hard to stay healthy on a cheap grocery budget because healthy food costs more. (Caregiver of a child with CF)
…having a balanced meal is probably the biggest challenge because protein is expensive and […] carbs are just nice and cheap. […] When I do get protein, it doesn't last very long because there's five of us and I don't have food that's just for myself. It gets hard. (Adult with CF)
Participants discussed how they deal with food scarcity. Some purchased food on credit:
One good thing about food is that you can put it on a credit card […] and then pay off when I do eventually have some extra [money]. (Adult with CF)
Caregivers of children with CF shared that they routinely skipped meals themselves to ensure that their child had food:
I skip breakfast and lunch so that she can have whatever it is […] we just always feed her first. (Caregiver of a child with CF)
This tactic was not limited to caregivers of children with CF. Adult CF patients with children would also sacrifice their own nutritional requirements to make sure that enough food was available for their children:
I've got kids, so I always try to make sure they eat no matter what. Unfortunately, that fairly often means they're eating and I'm not. (Adult with CF)
I would wait till they ate, and then I would worry about, okay, what am I going to eat? Sometimes that left me with not the most balanced meal and I'm diabetic. (Adult with CF)
While providing for their children, parents would make every effort to shield them from the harsh reality of not being able to afford food:
[…] I never want [child's name] to ever feel like she's without food… If we're struggling it's, “Well, Mama, aren't you gonna come eat with me?” I'll tell her, “Oh, no. I ate earlier.” (Caregiver of a child with CF)
In summary, interviews revealed that food insecurity is debilitating, and its health consequences are severe. Parents routinely prioritized the needs of their children over their own nutritional needs.
Theme 2
Financial constraints imposed by the CF disease contribute to food insecurity
CF is expensive to treat and burdensome to manage. 31 , 32 , 33 , 34 , 35 , 36 Affording healthy food becomes problematic when having to balance available employment opportunities with daily care needs.
Adults with CF shared that making a livable income while managing numerous medical appointments was arduous and contributed to food insecurity:
I felt like I was just living to go to appointments because there's so many specialties involved. Trying to get off work for all of the appointments and still make an income, it felt like a never‐ending job. (Adult with CF)
Caregivers of children with CF discussed the challenges of providing care while being employed in jobs with limited flexibility. One parent described their situation:
I'm a single parent, so for an appointment […] because clinic is far away […] you're missing out on work. Or if she's admitted, I'm not working. If I'm not working, then I have no way of making sure that I can afford rent. I have no way of making sure that the fridge is gonna be full when we get back from the hospital. (Caregiver of a child with CF)
A CF exacerbation hospitalization is a 10 to 14 day stay almost always. That was really hard on my job, and there's not a whole lot of places that wanna hire you when they find out that you have a kid with issues like this. That's been another obstacle… (Caregiver of a child with CF)
Participants discussed that living with CF is expensive: it involves copays and expenses for frequent medical appointments, purchasing of medications and supplements, and expensive insurance premiums. Some shared their struggles with the invisible costs involved in attending clinical appointments:
It's like $10 to park, so on top of having to pay for gas […] and parking, and I have to eat something… Those days are a lot harder. (Adult with CF)
I have canceled clinic appointments before because we didn't have the gas. I had to reschedule around my husband's paydays and stuff. (Caregiver of a child with CF)
Others focused on the cost of medical bills, including copays and medications:
[Medical bills] just accrue faster than we can pay them off (Adult with CF)
I have to go to the doctor, and they prescribe a new med and it's not covered by insurance. We are a low‐income family, and it's hard to be able to pay for those things or to make sure that I get the amount of calories that I need a day. (Adult with CF)
Even those who did not have to pay high insurance premiums were affected:
I'm on government healthcare […] Even that doesn't cover everything. (Adult with CF)
In summary, financial burden associated with the direct and indirect costs of CF care play a significant role for food insecurity in families with CF. Lost wages due to ongoing disease management further exacerbate the issue.
Theme 3
Federal and state programs provide limited food assistance, and other support is minimal
Participants discussed their experiences with federal assistance programs designed to prevent hunger, such as the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) and the Supplemental Nutritional Assistance Program (SNAP), commonly referred to as “food stamps.” Participants agreed that existing resources and programs to prevent food insecurity are insufficient:
I was getting $139 in food stamps a month. That was for me and my two kids, and that didn't go very far. (Caregiver of a child with CF)
Honestly, the amount of money that they give you is not enough […] They don't factor in your actual needs. It's just based on income. (Adult with CF)
Participants shared multiple stories illustrating that these programs do not meet the food needs of people with chronic conditions such as CF.
With my first son, [WIC] was completely helpful. With my CF son it was not enough because he required […] almost double […]. So WIC […] has been helpful […] in the past, but with CF it was half as helpful. (Caregiver of a child with CF)
Eligibility for government food assistance programs is income based: applicants must prove their poverty. Participants were frustrated that they were considered ineligible despite struggling to make ends meet. A woman with CF shared:
There was no resources out there for us […] and it didn't matter that I had a disability or I needed extra food.[…] (Adult with CF)
My issue, I don't qualify [for SNAP] anymore, because I got a promotion at my job and with her Social Security, it puts us over by $25 a year. (Caregiver of a child with CF)
Additionally, applications for government food assistance programs have strict time limits for document submissions that are unrealistic and keep applicants from getting the help they need:
I have started the application […] three times now. Like I said, all of my work is all 1099 s [gig work], and I have trouble gathering all of the info that they need in the amount of time that they need. (Adult with CF)
Many participants were unaware of the programs they could apply for or of the stringent eligibility criteria involved. An adult offered:
I think when it comes down to it, whatever program is in place needs to be widely known and easily accessible. (Adult with CF)
While participants acknowledged using food banks, many felt food banks were not a reliable source for food supplementation. Some of the obstacles mentioned included days of operation, program requirements, food selection, and food quality, among others:
[Food banks] are a joke. A lot of them will maybe give you enough meals for maybe one‐two days. […] Some of them will let you go every week. Some of them are once a month. One here is only once every six months. Yeah. A lot of times the food is old or expired. (Adults with CF)
Several interviewees talked about the role of churches in helping them provide food. One participant discussed what is involved in getting this help.
They're like, 'Well, yeah, we'll help, but you have to now attend X number of services.' Not everyone's religious, you know? It feels like they're almost taking advantage … because you can't really say no. You need the food, so what's your other option?” (Adult with CF)
Overall, discussions highlighted the limitations of governmental and nongovernmental food assistance programs for pwCF and the scarcity of viable options for help with food.
Theme 4
Shame and stigma engulf conversations around food insecurity with CF care teams
Participants struggled with the mere topic of food insecurity. They shared that no one wants to admit they cannot afford the basic necessity of food. Some struggled with embarrassment to use available resources:
I have used food banks. I really don't like using them. It's embarrassing. (Caregiver of a child with CF)
When you're standing in line and you're checking out, and you have that [SNAP benefits] card, it can be uncomfortable. (Caregiver of a child with CF)
Some parents discussed how they would not answer survey questions about their needs. One parent divulged:
We are not truthful on them [surveys]… because I don't know who's getting this survey… It makes me nervous to give a truthful answer, but when I have those check‐ins over the phone, I'm more apt to opening up about the things we need or how we truly are doing. (Caregiver of a child with CF)
For other parents, revealing their struggles with food and needs evoked fear of losing their children, as one parent explained:
I'm a broke single mom. I can't afford to do this for my kids. They might take my kids. They might get [social services] involved. (Caregiver of a child with CF)
The shame was not exclusive to parents. Adults with CF expressed how difficult it is to reveal to their healthcare provider the challenges they face:
I know a lotta times, there's this shame that comes along with not being able to provide for yourself, that you're not good enough. (Adult with CF)
Participants felt that societal expectations of being self‐sufficient create stigma and prohibit conversations around food insecurity.
I think we live in a society where there's so much taboo […] everything is all about image… People are embarrassed. (Adult with CF)
The stigma, coupled with the notion of self‐reliance, often prohibited both caregivers and adult patients from asking for help.
[…] we go through so much medically that it's hard for us to even acknowledge or tell anybody that we are struggling. We don't want to burden anybody and we constantly feel like we're a burden. (Adult with CF)
In summary, shame, stigma, and fear emerged as serious barriers that keep CF families from disclosing their food needs and seeking help.
Theme 5
Food insecurity screening in clinical settings is critical
All participants were in favor of screening for food insecurity, and many acknowledged its life‐saving role:
If they didn't ask me, I would've never found the help. (Adult with CF)
Although opinions on who should initiate this conversation varied, most participants discussed the need for organic conversations between dietitians and social workers that would reveal food insecurity. A parent shared an example where the social worker and the dietician collaborated to problem‐solve a specific need:
I hear you were talking to the dietitian about not having this, so let's talk about a path to get it. (Caregiver of a child with CF)
We're always checking height and weight, so then we're always talking about food. If we're always talking about food, then we're always talking about 'What are you able to buy right now? What are you able to eat?' That's how those conversations just naturally happen. […] Sitting down with a dietitian, having them come in the room is so huge. (Caregiver of a child with CF)
One participant was concerned about having conversations about food insecurity in the presence of their children:
If she knew that, well, we don't have milk because I have no money, she's gonna just quit drinking milk […] if there are struggles, the child's going to feel like it's their fault. That's not what any child needs. (Caregiver of a child with CF)
Regarding the frequency of screening, participants were unanimous that it should happen at every visit. However, one participant cautioned about screening for food insecurity without addressing it:
Some of it depends on what you're gonna do about it. Cause I get asked a lot of questions and then nothing happens[…] I think what you're planning to do behind it makes the difference. Nobody wants to admit that they're having a problem only to be told, “Well, okay, go home and have a nice day.” (Adult with CF)
Overall, participants endorsed the idea of routine food insecurity screening but emphasized the sensitive nature of these conversations and the importance of taking action to address the food needs that people disclose.
4. DISCUSSION
This study provided insight into the lived experiences of pwCF in the United States with food insecurity, including screening, disclosing, and obtaining assistance. The experiences coalesced around five major themes: (1) food insecurity is severe and debilitating, (2) extensive financial constraints imposed by daily therapies is a major precipitant, (3) currently available food assistance programs are insufficient, (4) shame and stigma are common, and (5) CF clinics should routinely screen for food insecurity and offer assistance.
The severity of food insecurity was a common theme among participants. According to the USDA, one in eight households were food insecure in 2022. 37 This prevalence is substantially higher in CF households: one in three in 2019 (the last year of data collection). 9 Food insecurity is higher among people with other serious or complex chronic conditions as well, including sickle cell disease, diabetes, lung disease, stroke, and serious mental illness, 38 , 39 , 40 with evidence of bidirectional relationship between food insecurity and chronic illness. 41 Our interviews revealed the raw and real struggles behind these statistics. Some participants cried.
The study also showed that food insecurity does not discriminate. Our sample included both single‐ and double‐income households. Participants were unanimous that costs related to CF disease management negatively impacted their ability to maintain adequate supply of healthy food. This results in skipped meals, lower calorie meals, and poorer quality food, which in turn impacts the health of the pwCF. Worsening health then further exacerbates the medical financial burden, in a vicious cycle.
The high cost of medical treatment can result in a lower standard of living, and even poverty. More specifically, research shows that disability often leads to inequalities in education and employment, which adversely affects one's income. 42 Adults on disability and their caregivers report that unemployment and underemployment are major factors limiting their nutritional intake. Research has shown that medical disabilities such as those experienced by pwCF reduce income potential and increase the likelihood of food insecurity. For example, in 2021, 28% of US households with a disabled adult were food insecure, and 24% of those with an employed disabled adult endured the same. 37 It should be noted that highly effective CFTR modulators are not a fix to the food insecurity problem; in fact, they may exacerbate it, considering their hefty price tag 43 and the need for a healthier (and thus more expensive) diet due to changed nutritional needs. 7 , 44 , 45
Food insecurity among people with a disability such as CF increases their dependency on local, state, and federal support programs. However, study participants reported that available food assistance resources were insufficient, and support services are marred by extensive and unrealistic income requirements. Many were dismayed that their disability status did not increase their eligibility or the quantity of food that they could access. Although income and asset limits are set by the federal government, policies vary considerably by state. 46 As such, our participants shared common experiences that resources to mitigate food insecurity are limited and not readily available. This finding calls for effective and sustainable programs and social policies to reduce the gap between food insecure individuals and supportive resources, especially for people living with chronic illnesses.
Our work highlights the role of shame and stigma around disclosing food insecurity. Adults faced shame about not being able to care and provide for themselves. Parents of children with CF additionally noted fears about legal consequences of reporting food insecurity, which increased their hesitancy to discuss their concerns with the CF care team. They also described the additional psychological burden that their children feel when care teams ask questions about food insecurity. These results are consistent with previous research suggesting that shame is manifested not only at the individual level but at the structural level as well. 47 This finding highlights the need for personalized screening approaches, as food insecurity in families has been linked to increased levels of parental stress, depression, and anxiety. 48
All study participants endorsed the idea of screening for food insecurity but their opinions on screening frequency varied. Participants identified dietitians and social workers as preferred care team members to conduct food insecurity screening in clinic. Food insecurity screening in the US CF population has been shown to be feasible, 49 and recent evidence suggests that electronic screening may reduce the experience of shame and stigma. 50 Other research has highlighted opportunities for nutrition management via telehealth, considering that both CF families and clinicians report positive experiences with telehealth modalities and support remote monitoring. 51 , 52 However, it is critical that care team members are appropriately trained to conduct culturally competent and sensitive conversations in light of the high degree of reluctance to disclose food insecurity. 53 Such conversation also require that CF care team members are knowledgeable about the availability of food assistance resources and able to coordinate information and referrals for such services. 12
This study has several limitations. First, participants were individuals with known food insecurity or difficulties with other basic needs. It is possible that their experiences are biased toward the extreme of unmet food needs. Second, although our sample was recruited from multiple geographic regions and CF programs across the United States, findings may not capture the experiences of all pwCF. The majority of participants were female, adults with CF were twice as many as caregivers of a child with CF, and we did not collect information about the rurality or urbanicity of their residence. We have balanced these limitations by integrating thematic saturation and other measures of quality such as credibility, trustworthiness, and reliability 54 to ensure that we have captured essential experiences with food insecurity in the CF community. Third, while we acknowledge that our sample is small, it is in line with recommendations for interview‐based studies 55 and based data saturation. 56 , 57 In developing evidence‐based recommendations regarding sample sizes for interviews, Guest et al. report that 70% and 92% of all themes are identified in the first 6 and 12 interviews, respectively. 58 Morgan et al. report that the first 5 to 6 interviews produce the majority of new information, and across four datasets, approximately 80% to 92% of all concepts were noted within the first 10 interviews. 59 Finally, it should be noted that we do not seek to establish the prevalence of food insecurity but to understand the lived experiences of pwCF with food insecurity. As such, this study does not make conclusions regarding the frequency or severity of food insecurity among pwCF in the United States and may not be applicable to pwCF in other countries.
Regardless of these limitations, the study makes a significant contribution to understanding the real‐world struggles of pwCF and their families with having an interrupted access to nutritious food supplies. Participants shared personal stories that demonstrated the seriousness of food insecurity experienced by the CF community. The study revealed that living with a chronic illness like CF increases medical care costs, reduces income potential, and leads to food insecurity, which exacerbates adverse health, thereby further increasing treatment burden. The measures in place to alleviate food insecurity are lacking, and societal stigma and self‐imposed shame inhibit self‐disclosure of financial struggles. Screening is crucial, but without appropriate resources and adequately funded programs, the vicious cycle continues.
5. CONCLUSIONS
In the new era of novel drug therapies and improved CF clinical care, it is essential to address food insecurity so that all pwCF can benefit from these advancements and realize their full health potential regardless of socioeconomic status. Our work provides a valuable perspective on the lived experience of pwCF and their families with food scarcity. We show that food insecurity may be invisible, but its consequences are dire. Available assistance is limited, screening is inconsistent, and stigma is widespread. There is therefore an urgent need to normalize food insecurity screening, standardize the screening process across CF care programs, and expand food assistance options for pwCF. Implications for clinical practice additionally include the need to provide training on sensitive screening and trust building, given the shame and stigma associated with food insecurity. Future work will need to focus on development and implementation of tailored screening processes that address food insecurity as a step toward achieving health equity for all pwCF.
AUTHOR CONTRIBUTIONS
Soumya J. Niranjan: Formal analysis; writing—original draft. Georgia Brown: Formal analysis; writing—original draft; visualization. Julianna Bailey: Data curation; writing—original draft. Robin Geurs: Data curation; writing—review and editing. Keith J. Robinson: Methodology; investigation; data curation; writing— review and editing. Michael S. Schechter: Data curation; methodology; investigation; writing—review and editing. Kate E. Powers: Methodology; investigation; writing—review and editing. Cristen Clemm: Data curation; writing—review and editing; resources. Kim Reno: Data curation; writing—review and editing; resources. Gabriela R. Oates: Funding acquisition; conceptualization; data curation; methodology; investigation; writing—review and editing; supervision.
CONFLICT OF INTEREST STATEMENT
Kim Reno and Cristen Clemm are employees of the CF Foundation. Georgia Brown is a person living with CF. All co‐authors served on the CF Foundation Food Security Committee and received an honorarium.
Supporting information
Supporting information.
ACKNOWLEDGMENTS
This study was funded by a grant from the CF Foundation.
Niranjan SJ, Brown G, Bailey J, et al. “I eat chocolate milk for dinner because we just have nothing in our fridge”: The invisible burden and dire consequences of food insecurity for people with cystic fibrosis in the United States. Pediatr Pulmonol. 2024;59:3228‐3239. 10.1002/ppul.27179
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supporting information.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.