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Diet and nutrition management is an integral component of Crohn disease (CD) management. This type of management is highly variable and individualized and, thus, requires personalized approaches. Consumer health information technology (CHIT) designed to support CD management has typically supported this task as everyday life work and, not necessarily, as illness work. Moreover, CHIT has rarely supported the ways in which diet and nutrition management requires coordination between multiple forms of patient work.
The purpose of this study was to investigate diet and nutrition management as biform work, identify components of articulation work, and provide guidance on how to design CHIT to support this work.
We performed a qualitative study in which we recruited participants from CD-related Facebook pages and groups.
Semistructured interviews with 21 individuals showed that diet and nutrition management strategies were highly individualized and variable. Four themes emerged from the data, emphasizing the interactions of diet and nutrition with physical, emotional, information, and technology-enabled management.
This study shows that the extent to which diet and nutrition management is biform work fluctuates over time and that articulation work can be continuous and unplanned. The design guidance specifies the need for patient-facing technologies to support interactions among diet and nutrition and other management activities such as medication intake, stress reduction, and information seeking, as well as to respond to the ways in which diet and nutrition management needs change over time.
Crohn disease (CD), a type of Inflammatory Bowel Disease (IBD), affects approximately 3 million people in the United States [
Though diet and nutrition have not been implicated in causing CD, certain foods can trigger an inflammatory flare-up or exacerbate symptoms for those with CD [
Consumer health information technology (CHIT) could address challenges with diet and nutrition management of CD. However, CHIT developed for diet and nutrition purposes only partially addresses the needs of CD management, as features need to be more nuanced to capture the complexities surrounding diet and nutrition. Although tools have been developed for CD, specifically, and IBD, more generally, the apps do not offer robust features for tracking diet and nutrition. Current popular IBD-related apps (eg, GI [Gastrointestinal] Monitor, GI Buddy, and MyCrohnsAndColitisTeam) offer logging capabilities, trend reports, and community forums. These apps lack an integration of features, including those that monitor behaviors and disease states, track diet and nutrition, facilitate connections with providers, develop social networks, provide psychological tools, and provide accurate medical information. As a result, currently available apps lack features to deliver personalized diet and nutrition guidance, integrate this guidance into the broader context of daily CD management, and adapt management activities across a lifespan [
The shortcomings of CHIT designed for CD management may be viewed through the lens of Corbin and Strauss’s [
Eligible participants were over 18 years of age, diagnosed with CD, and US residents. Once eligibility was confirmed, a convenience sampling strategy was used to contact individuals to participate in the study.
Participants were recruited from the online social media platform Facebook [
Study recruitment flyer.
Data collection took place from October 2016 to February 2018 in 2 phases. Data saturation [
All interview recordings were transcribed. Data were analyzed using QSR NVIVO 11.3, through a conventional content analysis process informed by Hsieh and Shannon [
This study was approved by the University of Virginia Social and Behavioral Sciences institutional review board.
In total, 54 individuals filled out the survey, and, of those, 3 (6%) did not provide sufficient contact information, 27 (50%) did not respond to the follow-up, 3 (6%) were unable to interview due to medical complications, and 21 (39%) were successfully enrolled. Of the 21 participants, 16 (76%) were female, and the average age was 35 years (
Participant demographic data (N = 21).
Characteristic | Participants, n (%) | |
|
||
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20-29 | 8 (38) |
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30-39 | 7 (33) |
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40-49 | 4 (19) |
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50-59 | 1 (5) |
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60-69 | 1 (5) |
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||
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Male | 5 (24) |
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Female | 16 (76) |
Participant experience with self-management of Crohn disease.
Qualitative content analysis yielded 4 overarching themes (
Themes and categories identified based on interview analysis.
Theme and subthemes | Definition | ||
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Relationship between diet and nutrition and symptoms of CDa | ||
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Management of medication | Relationship between diet and nutrition and prescription drugs | |
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Management of remission | Relationship between diet and nutrition and periods with reduced symptoms | |
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Management of flare-ups | Relationship between diet and nutrition and periods of increased symptoms | |
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Relationship between diet and nutrition and the psychological aspects of living with CD | ||
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Management of social relationships | Relationship between diet and nutrition and forming and maintaining connections with people | |
|
Management of routines | Relationship between diet and nutrition and daily tasks | |
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Management of stress | Relationship between diet and nutrition and experiences of mental and emotional strain | |
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Relationship between diet and nutrition and information gathering | ||
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Management of information from health care professionals | Experiences with seeking and obtaining advice about diet and nutrition from trained providers | |
|
Management of information from text sources |
Experiences with seeking and obtaining advice about diet and nutrition from books, websites, and other written materials | |
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Management of information from social networks | Experiences with seeking and obtaining advice about diet and nutrition from online and offline connections | |
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Experience using CD management tools for diet and nutrition | ||
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Management experiences using existing tools | Experiences with using technologies to facilitate activities related to diet and nutrition | |
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Management needs not met by existing tools | Experiences with lack of usefulness and usability of available technologies related to diet and nutrition |
aCD: Crohn disease.
Participants discussed the following components of physical management: (1) management of medication, (2) remission, and (3) flare-ups.
Some participants indicated that CD medications positively impact the need for dietary management:
I would say that [the medication] was so good…[that diet] was more of a minor fact that I would forget—not forget that I had a disease, but [I] would live my life more normally.
In other cases, the participants expressed combining medications and dietary management to control and limit flare-ups:
I am on Remicade, and I believe that a diet is very important, and what you eat can try to treat it from the natural side.
One participant with an ostomy bag had trouble with absorbing medications after eating:
[A]bout an hour after I eat, I’m passing whatever through the ostomy—...medication, pills...
When in remission, participants mentioned some consistencies in the foods they tolerate. Participants that committed a restricted diet to memory took several years to develop their diet through trial-and-error processes using food journaling. Many participants did not plan meals and primarily cooked meals at home to control ingredients used. Often, each individual discussed a lack of variation in their diet:
I lead a pretty boring life. I pretty much eat the same thing for breakfast, same thing for lunch. I don’t vary my dinners all that much.
Even with a fixed diet, participants experienced inconsistencies in the foods they could eat:
[Spinach] is fine one day. Then, 2 days later, if I were to eat the same amount of spinach, it’s like, “Oh, holy hell,” my bag [is] blown off. There’s green everywhere, and it’s just a nightmare.
Management activities during remission periods were variable across participants but were more consistent across participants during flare-ups. All participants identified certain foods that tend to cause gastrointestinal distress and increase the risk of a flare-up. The exact type of food varied across participants and for each individual over time. All individuals talked about changing their diet during a flare-up. The majority of participants mentioned eating easily digestible foods such as broths when flare-ups were particularly bad and caused concerns about fluid loss:
Is it gonna be [a flare-up] that runs off of bone broth and crackers, or is it gonna be a full “can’t eat anything and I’m gonna get dehydrated”[one]?
Participants identified multiple dimensions of managing the psychological aspects of living with CD, including management of social relationships, routines, and stress.
Many participants expressed that their unique dietary requirements prevented them from engaging in social activities. An inability to engage in social activities often strained relationships:
When it is bad,…I can’t leave the house, I can’t make plans, I’ve lost friendships with people.
As food is often an integral part of social activities, participants shared feelings of stigmatization when they declined invitations:
The view that I get is probably like, “Oh, she's snobby. She doesn't wanna come out to eat.” I feel that's the stigma they put on me...
If participants did dine out as a social activity, they experienced feelings of sadness in recognizing the foods they can no longer eat. In one case, a participant noted the effect this feeling had on a relationship:
[W]hen I look at a menu, it’s like, “Oh, I can’t have that. I can’t have that.” It’s not a great way of making the other person happy to be around you when you’re depressed that you can’t eat cheese.
Since diet and nutritional management of CD is highly individualized, several participants felt frustrated with using trial-and-error methods to devise routines to follow. Food and eating were sources of tension for participants in their management routines:
I could probably say I am afraid of [food]. It sounds really weird…that you are so afraid of food.
When there were deviations in routine, participants experienced increased difficulties with managing diet and nutrition:
Trying to travel with a diet is very difficult...Everything's set around food...You go to the kid's functions, you go to [visit] other family—anything—everything's food oriented.
Some participants discussed the financial strains of incorporating diet and nutrition into their routines:
I don’t want [my family] to have to go out of [their] way to pay more for food, just so that I can possibly eat it.
Participants stated that increased stress from everyday life exacerbated their symptoms and, in turn, affected their diet and nutrition:
[S]tress is a major trigger with this disease...If it’s emotional, if it’s traumatic, if it’s work related, the stress will affect the disease.
In one case, the uncertain nature of diet and nutrition as well as of the disease in general was a source of daily stress:
I guess just not knowing when the symptoms are gonna pop up—it's very difficult when you're dating or at school or working...Stress definitely triggers it and makes me sicker.
To manage the stress levels and the mental health impacts of CD, several participants sought professional assistance:
I’m in therapy...I’ve always had chronic depression because of the Crohn’s. We go over stress levels and all that stuff.
Participants reported gathering information from health care professionals, text sources, and social networks.
There was a consensus among participants that it is rare to gather useful information about diet and nutrition management of CD from health care professionals. One participant noted about a physician:
The doctor has never even said anything [about nutritional needs]. That would be another very helpful thing for people with CD to find the right food to help their body.
Moreover, some participants were frustrated with the advice given by dieticians, as it was often not CD-specific:
I spoke with a dietician a few years ago, and they literally quoted the [Food and Drug Administration] guidelines. I'm looking at them, [and I’m] like, “I have Crohn's. I thought you were a dietician for Crohn's.”
Most participants cited gathering information from internet searches as well as professional and nonprofessional websites:
[I] did a lot of internet researches. There’s the Crohn’s & Colitis Foundation that I’ve got a lot of information on.
Though the internet was the most frequented for information, some participants favored books for diet and nutrition information:
I love books, so I will pick the library first, over the internet.
Though participants received and sought information from health care providers and text sources, they discussed information from social networks more at length. Participants noted using anecdotal information from online and offline social network members to identify foods that may or may not contribute to the risk of a flare-up. For instance, a participant explained:
I'm [in] a support group on Facebook and a lot of [them] say, “I don't eat leafy greens, so I couldn't tell you what they do to me.” That's what everybody says.
Participants tended to glean information and support from family members and close friends in their social network. In several cases, family members were involved in managing diet-based decisions, because they had CD, were respected by the participant, or were professionally trained in nutrition. However, they were not the participant’s formal health care provider:
My dad, he also has Crohn's as well as my brother, who also has Crohn's...[W]e can all relate to the issue that we're experiencing.
Information about recipes, meal planning, and living with a restricted diet was also found by participants on social media:
I use Instagram a lot, because a lot of people post things there, especially, recipes or ideas or things that work for them, kind of similar to the forums we talked about earlier.
Social media activity varied among participants, where some were active in posting and others preferred to only read the posts in pages and groups.
Participants reported using various tools for CD management and described their experiences using these tools, critiquing aspects that were not useful and noting limitations in usability.
Participants expressed a range of perspectives on available tools. A few participants identified benefits of food diaries immediately after a diagnosis of CD to help figure out an initial effective diet. One noted that:
For 7 or 8 months, I kept a food journal with any symptoms I might be having...[T]hat really helped me know what I can and can’t eat.
Other participants found food diaries time consuming, difficult to keep up with, and, often, hard to gather valuable information from, due to the inconsistent nature of diet and nutrition:
I tried to [track my diet], but I am really bad about that. Even keeping track of that, you still don’t know, because you could eat something and you feel fine with it. And, next time you eat it, you feel terrible.
Although there are tools available for tracking diet and nutritional content, participants reported not using these tools for prolonged periods due to their limitations. One limitation noted by participants was that these available tools were not designed for CD management and, thus, were not perceived as useful:
I probably would [use a tool] if I had something that I liked. And, trust me, if there was something out there that I thought was amazing, I would have found it.
Participants tried using a range of apps such as FitBit, MyFitnessPal, and MyPlate; however, one participant noted:
[I found myself] going back to pencil and paper and writing things down.
This was because of difficulties navigating app interfaces. Overall, participants reported a lack of usefulness and usability of currently available technology designed to track diet and nutrition.
The cohort interviewed had limited prolonged engagement with CHIT, due, in part, to the lack of CD-specific tools available. However, participants wanted to engage more with CHIT, and they discussed features that integrate various aspects of illness and everyday life work. First, several participants stated that a tool to improve locating and accessing bathrooms would be helpful, particularly, during flare-ups:
I think [it would be helpful] if somebody were to develop an app with the technology...[that] would tell you what gas stations or what stores are nearby...[and] have a public restroom...and how accessible are those bathrooms—a single stall, or is it a multi-stall?
Notably, many of the participants voiced a desire to have better connections with other individuals with CD in their local area:
I actually have been seeking out these support groups. Some Facebook group that I'm on for Crohn's, they give out a roll call, trying to find out where everyone is living...Someone just connected me with—to an in-person support group—...I will likely end up joining that.
Participants were interested in automated features and tracking trends related to behavioral factors such as diet and nutrition and disease states:
A statistical analysis to find out how am I doing—[a]n app—would be great, or, a beautiful spreadsheet just [for] trends, that would be great.
Participants expressed a desire for integrated app features or the ability to synchronize data from multiple apps:
It looks like [recent apps designed for individuals with IBD] track food—...I didn’t really wanna separate [the functions]. That way, if I wanted to look back, it wouldn’t be in 2 places. I've already got My Plate activated with my food for my history now.
More specifically, a few participants stated that they would appreciate connections to health care providers:
I think it would be really great if my doctor was connected to [an app], somehow—[if] the information got sent over,...so they had access to how I'm [doing]...
Qualitative content analysis revealed 4 themes: physical, emotional, informational, and technology-enabled management. Across participants, diet and nutrition management was an integral part of both illness and everyday life work. However, the extent to which diet and nutrition management could be considered as biform work varied, not only by participant but also over time. Participants usually attempted to manage their diet during remission to prevent flare-ups. For some participants, the use of medication reduced—or, in some cases, eliminated—the need to manage diet and nutrition as illness work. Illness work was also reduced via relying on a consistent diet. During flare-ups, the need for diet and nutrition management as illness work was imperative, as each participant reported maintaining a list of “safe foods” that they rely on. Participants discussed the centrality of stress in CD management, as it tended to exacerbate symptoms, in turn, causing an increased need to manage diet and nutrition as illness work. For many participants, stress stemmed from frustrations with their limited diets and subsequent difficulties developing and maintaining social relationships. As information from professionals was often insufficient, participants relied mainly on social networks to learn about the dietary aspects of CD management. Obtaining and seeking information about diet and nutrition management was often illness work, as participants typically used this information to avoid or ease disease symptoms. Lastly, statements about articulation work were pervasive throughout the interviews. Tasks such as taking medication and eating needed to be coordinated to avoid adverse outcomes. In other cases, tasks were inextricably linked, such as managing stress along with diet and nutrition. For some participants, stress was caused by the diet-restrictive nature of CD, in turn, affecting disease severity and subsequently increasing the need to manage diet and nutrition.
Participants identified the need for complex and integrated functionalities for CHIT to support diet and nutrition management, as there are varying degrees of overlap between illness and everyday life work. Coordination is also required between and within lines of work. The need to manage diet and nutrition as illness work fluctuated over time for participants; however, CHIT rarely responded to oscillations in times of remission and flare-ups, as participants predominantly noted these using general apps designed to track physical activity and calorie expenditures. Moreover, available tools did not support information management as illness work, since participants sought information about diet and nutrition mostly from social networks. For those that used management tools, many reported paper-based food journaling as cumbersome illness work. Additionally, a majority experienced limitations related to usefulness and usability in available tools to meet these needs. Altogether, participants desired features that are more responsive to the realities of living with CD and the interconnected nature of this condition. These desired features included automated diet and nutrition tracking, facilitated social connections, a public restroom finder, analytics, information-sharing with health care professionals, and integration with other apps that are already part of their daily workflow.
Even though we initially proposed the concept of biform work, the results from this study show that this concept is not necessarily fixed with regard to diet and nutrition management for people living with CD. There were instances where this type of management was both illness and everyday life work and also instances where it largely became everyday life work. Even if diet and nutrition management existed in a state of everyday life work, psychological factors often could trigger a flare-up for participants and, consequently, increase the illness work–related characteristics. Though not the focus of this study, there may be an opportunity to explore these psychological factors more deeply, as diet and nutrition management could also be a component of biographical work. Thus, this type of management could exist as multiform work, meaning that there could be overlap between everyday life, illness, and biographical work. The concept of diet and nutrition management as multiform work could be meaningful in other conditions such as obesity and anorexia. In such conditions, the need to manage diet and nutrition can be illness and everyday life work, in addition to biographical work, as relationships with food can contribute to self-identity [
Since the extent to which diet and nutrition management existed as biform work varied among the participants and over time, the reported need for articulation work between and among other management tasks varied as well. Articulation work was needed for task coordination, aligning with the original conceptualization of this type of work [
Interactions between the first 3 themes yielded several insights into how future patient-facing technologies can be developed to support diet and nutrition management as biform work, when needed, and facilitate articulation work. The fourth theme informs potential features and functionalities of these technologies.
The first theme demonstrated the articulation work needed to manage diet and nutrition and medication. The interconnected nature of these factors is supported by the scientific evidence, as both food and medications have been shown to affect the composition of the gut microbiome [
The second theme shows that for the participants in this study, psychological factors also had an effect on the extent to which diet and nutrition needed to be managed as biform work. Participants described how diet and nutrition can affect social well-being and mental health, in turn, affecting disease states and requiring more articulation work. This finding supports the evidence that individuals with food restrictions have reduced social and emotional well-being [
As discussed in the third theme, participants sought and obtained diet and nutrition information from health care providers, text sources, and social networks. Similar to this study, one study documented that individuals with IBD wanted to know more about dietary management to reduce flare-ups and noted limitations in dietary advice offered by health care providers [
Although this study provided several insights about diet and nutrition management for CD, it also had a few limitations. Since we asked participants to describe CD management over time, the data could be subject to recall bias. However, the participants were not asked to recount certain details about events but, rather, asked to reflect on the most salient points of diet and nutrition management and their overall experience with CD. By recruiting on social media, the sample inherently was comfortable using technology, and, thus, this study did not allow for an understanding of the needs of those with limited technology experience. However, use of this sampling strategy could be beneficial, as the participants could identify challenges with the technology that did not necessarily stem from general inexperience or discomfort using technology. Additionally, apps that partially address some of the needs identified may have been developed since the study was conducted. However, our discussion section acknowledges these apps when they are relevant to a need that was articulated by participants. Lastly, the CHIT guidance provided centers around tracking symptoms to improve outcomes. It has been shown that monitoring biomarkers may be a more effective indicator of disease progression than tracking symptoms alone [
Our interviews with individuals with CD reflected 4 main themes, illustrating the fluctuating biform nature of diet and nutrition management as well as the continuous and, in some cases, spontaneous articulation work needed to manage complex interactions between diet and nutrition and other aspects of life with CD. The participants in this study experienced numerous challenges with diet and nutrition management and use of existing technologies to support management activities. Future work should focus on other chronic conditions that require diet and nutrition management to supplement the understanding of biform work, explore the concept of multiform work, and expand on the definition of articulation work. Methods such as journaling could help to capture the nuances and complexities of daily diet and nutrition management. This study also provided descriptive and prescriptive design guidance [
Crohn disease
consumer health information technology
inflammatory bowel disease
This study was funded by the Department of Public Health Sciences at the University of Virginia. We would like to thank our participants for sharing their experiences and Kathryn Fanta for her assistance in the early stages of this research.
None declared.