Lack of Follow-Up in a Food-Insecure Population

Abstract

Literature regarding attendance in elective health programs, like the Geaux Get Healthy Clinical Program at Our Lady of the Lake (OLOL), is scarce. This study aimed to investigate reasons for the non-enrollment of eligible, food-insecure individuals from Baton Rouge in the Geaux Get Healthy Clinical Program at Our Lady of the Lake (OLOL), which is a clinic-based community program addressing food insecurity. A prospective qualitative study was conducted using semi-structured phone interviews with 19 participants screened for food insecurity within the Franciscan Missionaries of Our Lady Health System (FMOLHS) but who did not enroll in the program. Interviews were recorded, transcribed, and analyzed thematically. Demographic data were extracted from the Epic database and statistically analyzed. The participants, primarily African-American females, cited a lack of awareness as the main reason for non-enrollment. Other barriers included embarrassment, transportation difficulties, and competing priorities. This study highlights the importance of addressing barriers to participation in community health programs like Geaux Get Healthy. Enhancing awareness and mitigating obstacles can improve program enrollment and ensure better use of resources to positively impact the health outcomes of food-insecure populations.

“GGH participants are typically African-American (84%) females (79%) reflective of higher prevalence of food insecurity in minority populations.”

Introduction

Food insecurity is characterized by the uncertain or limited access to nutritious and safe foods to support healthy and active lifestyles. ¹ It is a critical public health issue that contributes to poor health outcomes and increased risk for chronic health conditions including heart disease, diabetes, mental health disorders, and obesity.^1-3 As a result of the impact on health, food insecurity is estimated to result in excess U.S. health care spending of about 77 billion dollars annually. ⁴ Much remains to be done to determine what interventions are successful in addressing food insecurity with many recent calls to action by large organizations nationally. ⁵ Further, research is currently focused on the feasibility of these interventions, including enrollment and retention strategies, before evaluating efficacy. This is demonstrated in the language of many current funding opportunities.^6,7

This focus on enrollment and retention in food insecurity programming is not surprising as people with social determinants of health challenges often have trouble following up. This has been seen in a local program addressing food insecurity in Louisiana, where the prevalence of food insecurity is much higher than the national average. ⁸ This program, known as the Geaux Get Healthy Clinical Program (GGH), has had enrollment rates of 62% of those eligible to participate and retention rates of 63% of those who attended at least 1 class. ⁹ This is not surprising as the literature shows that a lack of patient follow-up can occur due to various factors including transportation difficulties, financial constraints, and poor health. ¹⁰ Patient characteristics associated with poor access to care include young age, black race, and low income.^11,12 Further, there are multiple additional barriers to utilization of community programming that are starting to emerge from qualitative data in community-based research including challenges with communication, a lack of free time to participate, and the stigma and shame associated with food insecurity.^13-15 However, robust literature examining attendance and follow-up in healthcare settings and with community programming remains limited.^6,7 Investigating factors contributing to the underutilization of such programs, particularly among vulnerable populations, is of the utmost importance.

Through a qualitative lens, the goal of this study was to uncover the intricacies of non-participation among individuals with food insecurity, shedding light on the underlying barriers that hinder their engagement and lead to a lack of follow-up. Drawing on insights from existing literature on attendance at healthcare appointments, this study sought to advance our understanding of the multifaceted challenges faced by food-insecure individuals and can aid in improving the enrollment and retention of similar programming.

Methods

Participants

Patients within the local healthcare system that screened positive for food insecurity and were provided information about the Geaux Get Healthy Clinical Program but did not enroll in the program were initially identified for study inclusion. Any patients that did not screen positive for food insecurity or were not provided information about the Geaux Get Healthy Clinical program were not eligible for study participation. We identified 134 people who screened positive for food insecurity and received information but were not enrolled in the Geaux Get Healthy Clinical Program at the time of data collection.

Recruitment

Contact information for eligible participants was provided by the Director of the Geaux Get Healthy Clinical Program. Study team members contacted eligible participants via phone using a consecutive sampling technique between September 2023 and February 2024. Participants were offered a $25 Visa gift card as compensation for the time taken to participate in the phone interview. Of the 134 people identified, 117 people were called. 19 people (16%) were unable to be contacted due to the phone number being out of service, lack of voicemail box, or incorrect phone number associated with their name. 21 people (18%) voiced a lack of interest in participating in the survey or hung up on the initial phone call. 58 people (50%) had a working phone number with successful voicemail contact without follow-up.

Study Procedures

This was a prospective study utilizing semi-structured interviews conducted over the phone. The interview focused on communication about the program, barriers to participation in the program, and challenges with attending doctor’s appointments. The interview questions are available in Supplement 1. The semi-structured interview guide was developed by researchers with expertise in qualitative research and food insecurity utilizing previously validated questionnaires (Lacy et al ¹⁶ ) as a backbone. All interviews were included in the analysis. Interviews were audio-recorded and transcribed via Microsoft OneNote software. Demographic data was pulled from the medical record of each participant and statistically analyzed for study population characteristics. The average interview length was 30 minutes. Verbal consent was obtained and documented prior to the start of each interview. The study protocol was reviewed and approved by the local institutional review board.

Data Analysis

Researchers then conducted a qualitative thematic analysis of participant responses using an inductive approach. Data collection continued until 2 of the authors, independent of the authors conducting interviews, identified a point of data saturation during periodic review of the transcripts that occurred every few months with the addition of about 5 more respondents during each review. These 2 authors, including the principal investigator, independently reviewed the transcripts to develop a list of recurring codes. The independent reviewers then came together to review, edit, and refine these codes to develop a matrix of codes and subsequent common themes. Lastly, all authors reviewed the themes identified by the 2 independent coders to further define, name, organize and analyze the themes. With this interpretation, direct quotations were identified to demonstrate these themes. Any disagreements were discussed until a consensus was reached.

Results

In total, there were 19 respondents (16% of people called) that completed the phone survey. There were 18 female (95%) and 1 male (5%) participants. 14 participants were African American or black (74%) and 5 participants were white (26%). The average age of participants was 46 years old with a range in participants’ ages from 21-66 years old. Regarding insurance coverage, 9 (47%) participants had Medicaid plans, 4 (21%) had private insurance, 3 (16%) had Medicare plans, and 3 (16%) were uninsured.

Theme 1: Lack of Awareness Contributes to Lack of Follow-Up

Several reasons were provided by participants for not following up with GGH or doctors’ visits. The most cited reason was a lack of awareness. Most participants said they did not know about the GGH program (63%) or why they qualified for it (79%). Many participants (42%) did not remember receiving information about the program at all. Only 7 respondents (37%) remembered receiving information about the program. Several participants who knew about the program (68%) couldn’t describe what the program does. Similarly, several participants (21%) did not realize the importance of going to, or following up with, the doctor.

“Most times adults don’t listen to what you’re telling them because they already have a pre-existing notion on what they think you're about to say. Or like me, I had a lot going on and sometimes you have to explain stuff and really make sure that somebody’s paying attention to what you're saying. Because I clearly was not.”

“I got I think a little information... I think it was either a [pamphlet] or something I received from my primary care physician”

Theme 2: Understanding and Emotions May Contribute to Lack of Follow-Up

Seven participants (37%) knew what it meant to be food-insecure, and 9 participants (47%) reported that knowing the program targeted food insecurity encouraged them to participate in the future. However, 6 participants said that pride, denial, embarrassment, or awkwardness could prevent other people from joining the program. Regarding follow-up for doctor’s appointments, most people (63%) reported liking going to the doctor without negative feelings. Some participants (26%) were anxious or fearful when they went to the doctor. Other participants (26%) reported bad experiences with doctors including dismissive behavior, lack of time spent with patients, or that they did not feel heard.

“... I don’t like the term food insecure. I don’t know what other term to tell you to use but I don’t think I fit into this category. Um as far as like not being able to afford food or eat the kinds of foods I need to eat because of economics or finances. I don’t fit in that category...”

“A lot of people are not health conscious. You know if they don’t know, it doesn’t bother them. They don’t want to go get regular checkups. They feel like they're better off not knowing.”

“[patients] don’t wanna hear what the doctor has to really tell them. And they don’t want to admit in their mind what the doctor had said they have to do this, they have to do that...”

Theme 3: A Lack of Resources and Competing Priorities Limit the Likelihood of Follow-Up

Five participants (26%) said reliable transportation was an issue for them personally, and 5 participants said this could be a limiting factor for others who qualified for the program. Several participants acknowledged other priorities during the early evenings as limiting factors for not enrolling in the program including children’s activities, lack of childcare, or incompatible lifestyle. Three participants cited this for themselves, and 1 participant said this could be an issue for others.

Similarly, when asked why people do not go to the doctor, 9 participants cited transportation issues and unreliable medical transportation as a limiting factor to attending doctor’s appointments. Seven participants said they had a hard time getting time off work to go to doctor’s visits. Five people cited financial difficulties either regarding high copays (21%) or high price of prescriptions (5%). One participant cited all of these factors. For many participants, a lack of follow-up with GGH or with doctor’s appointments was attributed to other priorities including job conflicts, childcare, or taking care of immediate medical care needs for self or family members.

“Transportation, childcare, the lack of financial means. Because a lot of times when you go to a doctor’s appointment you have a co-pay and let’s not even talk about the medicine. You need medicine on the opposite end. So it’s just like a depressed mindset, and I'm just speaking directly from me. I most likely needed to see the doctor a while ago but I just can't financially and no I cannot afford their co-pay.”

“I would hesitate to begin a program that I wasn’t able to you know fulfill the requirements. Because I'm the only parent and the only driver and so I have a lot of responsibilities in the evening so some of the programs required that you do some things in the evenings and lessons and workshops and things like that. And that's not something that I can commit to on a regular basis because I have to take care of my kids you know, and that kind of stuff.”

Discussion

The results of this study provide valuable insights into the factors contributing to non-participation among food-insecure individuals in the Geaux Get Healthy Clinical Program. The findings highlight several key themes that shed light on the barriers hindering engagement with the program.

The first major finding was not within the themes elicited from the semi-structured interview, but the notable challenge contacting participants by phone to participate in the study. As expected with phone calls from unknown numbers, there was a low answer rate when calling people eligible for this study. However, the contact rate of 26% and the much lower enrollment rate of 14% was lower than expected. This may be explained by the demographics of the study and the nature of enrollment. Data suggest that those who identify as African American are more likely to answer the phone compared to those who identify as white, but men are more likely to answer than women.^17,18 In contrast, when asked to complete surveys via mail, telephone and in-person, those who identify as white are more likely to complete the survey. And contacting participants with multiple strategies (mail, phone, and email) is generally much more successful than phone alone. ¹⁹ Interestingly, 26% of participants in this study were white, which was much higher than our typical GGH population of 4%. GGH participants are typically African-American (84%) females (79%) reflective of higher prevalence of food insecurity in minority populations.

Regarding the themes, the prevalence of misinformation and lack of awareness about the Geaux Get Healthy Clinical Program among participants was concerning. Despite efforts to disseminate information via social media, hospital system signage, press releases, radio and news segments, health fairs, multiple educational opportunities with providers within the hospital system, provider education with referrals, flyers, brochures, and word of mouth, a substantial proportion of participants were unaware of the program or its eligibility criteria. This aligns with findings from a British systematic review where 3 studies had participants note miscommunication as a reason they missed their health-care appointments emphasizing the need for targeted outreach strategies and community engagement initiatives to enhance program visibility and reach. ¹² The challenge with dissemination of program information and its benefits to the community is not new. People are bombarded with more information today than ever before, making it challenging for people to tease out what is important to them. Further, communication in today’s world is even more challenging difficult for low-income and rural populations with higher rates of food insecurity due to lower rates of broadband access, digital illiteracy and health illiteracy. ¹³ Similar programs have found that people who did not participate in their programming due to unclear communication usually occurred in respondents with a lower level of education, and simplifying the messaging minimized this reason for a lack of participation over time. ¹⁴ The reasons behind the miscommunication of GGH are unclear, but the authors postulate that fast communication without depth of explanation, other competing concerns, lack of follow-up questions and lack of attention are contributing factors. This information will be further elucidated in a follow-up QI intervention to improve the effectiveness of the dissemination of program information. This intervention will utilize a PDSA cycle with the intervention incorporating the Rural Health Information Hub toolkit for “Methods of Dissemination for Community Health Programs” followed by another qualitative analysis of knowledge of the program in people who qualify but do not enroll. ²⁰ Hopefully implementing a structured dissemination plan using some of the tools in this toolkit (i.e., more frequent presentations to community groups and stakeholders, hosting health promotion events, utilizing local promotional resources, and sharing information electronically with a more structured online presence) can improve the communication and uptake of this valuable resource.

Participants noted psychosocial barriers to participating in the Geaux Get Healthy Clinical Program including pride, embarrassment, awkwardness, and denial. This is not surprising as stigma is one of the biggest factors preventing people from utilizing food assistance programs^21,22 Due to its permeating and troublesome nature, stigma has been identified as a prominent cause of health inequalities. ²³ Further, stigma has a negative influence on health outcomes by undermining access to care through its psychological impact and resultant changes in behavior. ²⁴ This is especially true when addressing the impacts of food insecurity. Many patients feel the stigma associated with food insecurity and try to be discrete when using food stamps or food pantries to avoid shame and embarrassment. Numerous other feelings typically accompany shame and embarrassment surrounding food insecurity. Some of these emotions include the frustration and stress from navigating the barriers of food insecurity, sadness regarding the situation, and guilt over the inability to provide. ²⁵ Similar outcomes have been noted in adolescents with reported feelings of sadness, anger, and internalized shame, which was heightened in school settings. ²⁶ These themes have been further parsed out through studies driven by “peer researchers,” or researchers who have similar lived experiences of those being studied. Through this qualitative research, stigma has been highlighted as a main barrier to the use of food banks in Canada with people reporting “feeling ashamed” and “feeling unwelcome or judged.” One of the solutions proposed by this research is to normalize use of food banks through community campaigns in the hopes of decreasing stigma. ¹⁵ Stigma surrounding food insecurity certainly contributed to a lack of enrollment in GGH. However, the hope is that continued communication about the link between food insecurity and poor health and increased SDOH screenings within health-care settings leading to connection to community resources can help to prioritize and normalize the utilization of resources to improve food insecurity.

Lastly, participants identified various logistical and psychosocial barriers to program participation for themselves and other participants, including transportation difficulties, financial constraints, and competing priorities such as childcare responsibilities and employment. This was an expected response that aligns with findings from the Healthy People 2030 literature summary where they noted people who live in food deserts or have unreliable transportation have decreased access to nutritious food. ² Several prevalent logistical barriers to healthcare are lack of childcare support and employment leading to delayed healthcare.^27,28 A survey of 300 reproductive-aged women in an ambulatory care setting found that 52.7% of respondents cited lack of childcare as the main cause leading them to miss healthcare appointments, followed by lack of transportation (32.8%) and lack of insurance (25.2%). ²¹ Employment itself has even been recognized as a social determinant of health, as its characteristics including stability, benefits or lack thereof, and wage contribute to the health and wellness of patients and their ability to access care. ²⁸ Regarding barriers to participation in community-based health promotion programs, similar barriers exist including competing priorities such as health problems, lack of time, family circumstances and other similar activities. Interestingly, studies have shown that motivators on an intrapersonal level (goal to become healthier), interpersonal level (social support from other participants) and program level (low cost, flexibility, and nice staff) can assist with overcoming some of these barriers. ¹⁴

To further interpret this information, it would be wonderful to compare the demographics of those enrolled and not enrolled into the GGH program, but demographic information was only collected for those who initially enrolled into the program. Therefore, we have compared characteristics of those who have enrolled and completed the program to those who have enrolled and did not complete the program. Interestingly, there was no difference in the demographics between those who have completed the program and those who haven’t including age, gender, race, household income and education level. However, we have found that there is a difference between insurance coverage. Only 38% of those with Medicaid plans completed the program compared to uninsured (63%), Medicare (68%), and private insurance (62%) coverage. Perhaps this difference supports the above discussion regarding other SDOH needs and psychosocial barriers contributing to lack of follow-up. However, these numbers must be interpreted with caution. Overall, 54% of our enrollees had Medicaid coverage, making the other groups much smaller and difficult to compare. Further investigation of insurance status and enrollment and completion in community programs would be beneficial for the creation and success of similar community health interventions.

This study does contain potential limitations. The participant interviews were audio-based and transcribed by Microsoft OneNote software over the phone. The audio quality of some interviews was lacking and led to occasional errors in transcription by the software. However, researchers attempted to correct the transcription in real time and type in participant answers that the software may have left out. Further, the interview transcriptions were then reviewed for accuracy and corrected, if necessary, by listening to the accompanying audio recording. Another significant limitation is the study’s small sample size. While it was attempted to contact 134 people, only 19 participated. This certainly can bring about participation bias. Further, despite meeting a saturation point in responses, this sample size may not be large enough to generalize findings to a broader population. 95% of participants were female and 74% were African-American reflective of our historically marginalized and food-insecure community members in Louisiana. However, this may not be representative of other populations throughout the United States. Future research endeavors should aim for larger, more diverse samples to better elucidate the multifaceted dynamics of non-participation in community-based programs.

Conclusion

This study contributes to our understanding of the challenges faced by individuals with food insecurity in accessing and engaging with community-based health programs. By addressing the identified barriers and leveraging insights from existing literature on missing healthcare appointments, targeted interventions can be developed to enhance program accessibility and effectiveness, ultimately improving health outcomes and reducing disparities among vulnerable populations. Further research is warranted to explore approaches to overcoming barriers to program participation and promoting health equity in underserved communities.

Supplemental Material

Supplemental Material - Lack of Follow-Up in a Food Insecure Population

Supplemental Material for Lack of Follow-Up in a Food-Insecure Population by Emma E. Domangue, Emily Dubuisson, Greggory Davis, and Tiffany Ardoin in American Journal of Lifestyle Medicine.