1. Rachel Goodell
Intervention Mapping
Final Exam
Fall 2012
Introduction
Celiac disease is an autoimmune disorder in genetically predisposed individuals,
causing villous atrophy in the small intestine as a result of gluten ingestion. It affects
approximately one percent of the population in the United States, and the only known,
effective treatment for celiac disease is a strict, lifelong adherence to a gluten-free diet
(Autodore, Verma, & Gupta, 2012; Gainer, 2011; Martin, 2008). This proposed program
aims to increase gluten-free diet adherence in an adult celiac population in the Houston
area.
Needs Assessment
To begin the intervention, a team of stakeholders is needed to plan, implement, and
evaluate the proposed program. This group should be comprised of people, organizations,
businesses, and government agencies that have an invested interest in the health problem
and its solution (Bartholomew, Parcel, Kok, Gottlieb, & Fernández, 2011). For gluten-free
diet adherence in adult celiac patients, this could include a wide variety of stakeholders.
The first group to include would be members of the target population: adult celiac
patients. It will be important to include a diverse group of celiac patients, including
different genders, races, ages, income levels, disease presentations, etc.
Health care professionals that are familiar with celiac disease and its treatment
would also be essential additions to the stakeholder workgroup. This would include
primary care physicians and gastroenterologists, who often diagnose patients and address
complications beyond diagnosis. Additionally, registered dieticians provide celiac patients
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Intervention Mapping
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with information regarding the gluten-free diet, tips for adherence, and where to find
gluten-free product, and so should be included in the stakeholder group.
Organizations devoted to providing information and support to celiac patients are
also key stakeholders for the proposed program. In Houston, the only group of this nature
found was the Houston Celiac Support Group (Houston Celiac Support Group, 2012).
Businesses that sell (or could sell) gluten-free products are another source of
potential stakeholders. This could include grocery stores, restaurants, and other specialty
food stores (such as bakeries, health stores, etc.). From this group, a diverse range of
businesses would again be ideal. From grocery stores, high-end or specialty stores, mid-
range and low-end stores, and independent corner stores would all be approached for
inclusion. Restaurant diversity would include both sit-down and fast food restaurants,
local and chain restaurants, and a variety of menu price points.
Other groups that could be included as potential stakeholders would include
government organizations, such as the Houston Health Department; health promotion
researchers, and program funders. Funding could come from a variety of sources, including
grants, government programs, and celiac organizations.
These potential stakeholders would be contacted using a snowball method. This
would begin at the celiac support group, where we would ask leaders and members to
participate. We would then ask the group to identify celiac patients who are non-members
(such as family members) that may be interested in collaborating on the program.
From this group, we would ask them to identify healthcare workers, restaurants,
grocery stores, and other people and organizations that could be tapped for inclusion in the
3. Rachel Goodell
Intervention Mapping
Final Exam
Fall 2012
workgroup. It is likely that celiac stakeholders will identify healthcare workers and
businesses that they frequent and have had success working with to manage their disease.
As such, it is expected that those identified will have a greater investment in the proposed
program objectives and would therefore be more likely to participate as stakeholders.
The identified people and groups would be contacted via telephone to invite them to
join the workgroup. These new stakeholders may be asked to identify additional parties
who may also be invested in the proposed program objectives, until a group that is diverse
and large enough is formed. Ideally, this workgroup would consist of at least five celiac
patients, three celiac group leaders, five healthcare workers, six restaurants and grocery
stores, two government agency representatives, one researcher, and one funder from each
funding source, for a total of 25-30 workgroup members.
Once the group is formed, the stakeholders would meet to discuss the group’s role in
addressing the health problem. This meeting may include defining the group and its goals,
as well as determining structure, “ground rules,” and a timeline for achievements. This
process will help facilitate group cohesion as well as group processes and decision-making
as the proposed program progresses (Bartholomew, Parcel, Kok, Gottlieb, & Fernández,
2011).
Following this, the group can begin to perform a needs assessment. This could
include in-depth interviews with celiac patients, their families, and health workers to
determine the struggles they are facing. Adherence tests could also be used to determine
the rates of gluten-free diet compliance in this specific population. Additionally, surveys
could be sent to area restaurants and grocery stores to determine their celiac disease and
4. Rachel Goodell
Intervention Mapping
Final Exam
Fall 2012
gluten-free diet knowledge, and to assess the availability and cost of gluten-free food in the
community.
The target population for this intervention would be adult celiac patients in the
Houston area. While there are no demographic data regarding Houston celiac patients
specifically, information from other studies in the U.S. should provide a close estimate to
the Houston population. Celiac disease affects approximately one percent of the U.S.
population, and its prevalence is between four and five times higher than it was 50 years
ago, making it one of the most common life-long conditions in the United States (Gainer,
2011; Lee, Ng, Ciaccio, & Green, 2012; Lee, Ng, Zivin, & Green, 2007; Reilly & Green, 2012;
Riddle, Murray, & Porter, 2012). Those with a first-degree relative with celiac disease have
a much greater risk of disease (1:22), while those with no family history are less
susceptible (1:133) (Autodore, Verma, & Gupta, 2012; Edwards George, Leffler, Dennis,
Franko, Blom-Hoffman, & Kelly, 2009; Martin, 2008; O’Donnell & Edelstein, 2009). These
rates, however, are expected to rise (Autodore, Verma, & Gupta), considering the high rate
of undiagnosis in the U.S. (Herman, Rubio-Tapia, Lahr, Van Dyke, & Murray, 2012; Lee et al.,
2007; Reilly & Green).
Women are two to three times more likely than men to be diagnosed with celiac
disease; however, the prevalence rates are much more equal in very young and very old
populations, suggesting either a difference in the severity of symptoms or utilization of
health services (Reilly & Green, 2012, Riddle, Murray, & Porter, 2012). Celiac disease used
to be considered a problem of childhood, but research has shown that its incidence actually
increases with age (Vilppula et al., 2011). Caucasians are also considered to have a greater
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Intervention Mapping
Final Exam
Fall 2012
risk of developing the disease, but it is becoming increasingly more common in all other
races (O’Donnell & Edelstein, 2009; Reilly & Green; Riddle, Murray, & Porter).
A strict gluten-free diet is the only known effective treatment for celiac disease, and
is absolutely essential to avoid intestinal damage and other associated complications
(Gainer, 2011; Herman et al., 2012; Lee et al., 2012). Unfortunately, adherence rates are
often lacking. Measures of adherence in the U.S. vary widely, ranging from 17 to 91 percent
(Autodore, Verma, & Gupta, 2012; Edwards George et al., 2009; Herman et al.; Leffler et al.,
2008; Martin, 2008). Worldwide, the estimate of strict compliance is between 36 and 65
percent (Barratt, Leeds, & Sanders, 2011; Bebb, Lawson, Knight, & Long, 2006; Hopman,
Koopman, Wit, & Mearin, 2009; Pietzak, 2005; Sainsbury & Mullan, 2011). In the U.S.,
women and patients with additional food intolerances had the highest adherence rates,
while men, teens, minorities, and those with reduced income had the lowest rates
(Autodore, Verma, & Gupta; Black & Orfila, 2011; Edwards George et al.; Lee et al., 2007;
Leffler et al.; O’Donnell & Edelstein 2009). Findings have been mixed regarding compliance
stratified by age at diagnosis, by education, and by symptom presentation (Autodore,
Verma, & Gupta; Ciacci, Cirillo, Cavallaro, & Mazzacca, 2002; Edwards George et al.; Leffler
et al.).
Houston has a population of approximately 2.1 million people (49.8 percent female),
with a diverse racial and ethnic background, including 919,688 identified as Hispanic or
Latino (any race, 43.8 percent), 537,901 as Caucasian (non-Hispanic, 25.6 percent),
485,956 as Black or African American (non-Hispanic or Latino, 23.1 percent), and 124,859
as Asian (non-Hispanic, 5.9 percent) (U.S. Census Bureau, 2010). Of those, there are 1.56
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Intervention Mapping
Final Exam
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million adults (50.1 percent female, 38.8 percent ages 18-34, 49 percent 35-64, 12.2
percent over 65) (U.S. Census Bureau).
Houston residents face significant racial disparities in education and income. While
95 percent of non-Hispanic Caucasians earn their high school diploma, only 80 percent of
Hispanics and 88% of African Americans do the same. Additionally, 46 percent of non-
Hispanic Caucasians and 61 percent of Asians earn a college degree or higher, while only 16
percent of Hispanics and 25 percent of African Americans do so. Approximately 16 percent
of all families in Houston live below the poverty line, the majority of who are minorities
(Houston Department of Health and Human Services, 2008).
This program proposal will be entering the PRECEDE model from the behavioral
risk phase, namely gluten-free diet adherence. Non-adherence can cause many health
problems, both immediate and latent, both gastrointestinal and non-gastrointestinal in
nature, and ranging for mild to severe and can even increase the risk of mortality (Bebb et
al., 2006; Edwards George et al., 2009; Gainer, 2011; Herman et al., 2012; Lee et al., 2007;
Pietzak, 2005; Smith & Goodfellow, 2011). Typical gastrointestinal problems associated
with untreated celiac disease include malnutrition, abdominal distention, acid reflux,
vomiting, dyspepsia, intestinal damage, steatorrhea, diarrhea, large and malodorous stools,
constipation, and flatulence (Addolorato, De Lorenzo, Abenavoli, Leggio, Capristo, &
Gasbarrini, 2004; Autodore, Verma, & Gupta, 2012; Butterworth, Banfield, Iqbal, & Cooper,
2004; Edwards George et al.; Gainer; Hopman et al., 2009; Martin, 2008; O’Donnell &
Edelstein, 2009; Sainsbury & Mullan, 2011; Singh & Whelan, 2011; Smith and Goodfellow;
Ukkola et al., 2012; Vilppula et al., 2011; Zimmer, 2011).
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Intervention Mapping
Final Exam
Fall 2012
Non-gastrointestinal problems can include anemia, infertility, miscarriage, low birth
weight, hair loss, osteoporosis, osteopenia, dermatitis herpetiformis, affective disorders,
tiredness, weakness, and peripheral neuropathy (Addolorato et al., 2004; Autodore, Verna,
& Gupta, 2012; Bebb et al., 2006; Butterworth et al., 2004; Edwards George et al., 2009;
Evans & Sanders, 2010; Gainer, 2011; Hallert, Sandlund, & Broqvist, 2003; Hopman et al.,
2009; Leffler et al., 2008; O’Donnell & Edelstein, 2009; Reilly & Green, 2012; Riddle,
Murray, & Porter, 2012; Sainsbury & Mullan, 2011; Singh & Whelan, 2011; Smith &
Goodfellow, 2011; Ukkola et al., 2012; Vippula et al., 2011; Zimmer, 2011).
Long-term non-adherence can also increase the risk of comorbidity with other
autoimmune disease and disorders, as well as cancer, particularly gastrointestinal cancers
and lymphoma (Autodore, Verna, & Gupta, 2012; Bebb et al., 2006; Cosnes et al., 2008;
Evans & Sanders, 2010; Gainer, 2011; James, Mead, & Smith, 2011; Leffler et al., 2008;
Martin, 2008; O’Donnell & Edelstein, 2009; Sainsbury & Mullan, 2011; Signh & Whelan,
2011).
Such adverse health outcomes can then further lead to lowered indicators of quality
of life. As mentioned previously, non-adherent celiac patients have an increased risk of
affective disorders, such as depression and anxiety. These disorders have been associated
with reduced quality of life and decreased sense of well-being (Addolorato et al., 2004;
Edwards George et al., 2009). Additionally, O’Donnell and Edelstein (2009) found that 50
percent of low-income celiac patients had missed school or work as a result of disease
complications. Of those that experienced absenteeism, 59 percent were not strictly
8. Rachel Goodell
Intervention Mapping
Final Exam
Fall 2012
adhering to a gluten-free diet. Many patients also saw a reduction in income, as a result of
their missed work.
To determine the importance of a positive sense of well-being to celiac patients, in
depth interviews could be conducted with patients who are experiencing and who are not
experiencing an affective disorder. These interviews would provide information on celiac
patients’ decision-making process regarding gluten consumption, and how those decisions
impact their quality of life, and how their quality of life impacts future decisions. Possible
questions to ask could include:
• How do you feel when you are compliant with your gluten-free diet? How does the
way you feel influence your decision to not eat gluten?
• How do you feel when you are not complaint with your gluten-free diet? How does
the way you feel influence your decision to eat gluten?
• Are you satisfied with the way you feel about yourself, with regard to your celiac
disease? Why or why not?
Surveys could be sent to celiac patients to determine the importance of work and
school attendance to them. These surveys would provide information such as absentee
rates, feelings about missed work and school, and how absenteeism affects other areas of
their life, such as income. Possible questions could include:
• How many days in the last year have you missed school or work as a direct result
of your celiac disease?
• Do you think you miss fewer, more, or about the same number of days as co-
workers (or classmates) who do not have celiac disease?
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Intervention Mapping
Final Exam
Fall 2012
• How important is it that you do not miss school or work (Very Important,
Somewhat Important, Not Important)?
• Have you noticed an impact on your life as a result of missing school or work? If so,
please describe the impact.
Based on the aforementioned health problems and quality of life issues associated
with non-adherence to a gluten-free diet, promoting compliance appears to be an effective
solution to target. However, there are many reasons for non-adherence that are outside of
the control of the celiac patient.
Cost and availability of gluten-free products were both mentioned numerous times
as environmental factors affecting diet adherence. Araújo and Araújo (2011) found that
57.14 percent of study participants were unsatisfied with the price of gluten-free foods,
while Smith and Goodfellow (2011) found that 61 percent of their participants said cost
was an issue for them, and O’Donnell and Edelstein (2009) found that 94 percent of their
study participants believed gluten-free products were too expensive. Indeed, research has
shown that gluten-free products are two to three times more expensive than their gluten-
based alternatives, and this is especially true for processed, prepackaged convenience
foods (Black & Orfila, 2011; Butterworth et al., 2004; Case, 2005; Lee et al., 2007; Martin,
2008; O’Donnell & Edelstein; Singh & Whelan, 2011; Smith & Goodfellow; Sverker, Östlund,
Hallert, & Hensing, 2009). Additionally, many celiac patients rely on naturally gluten-free
foods, such as fresh produce and meat, which is also more expensive than prepackaged
food (Lee et al., 2007). Leffler et al. (2008) found that while many people felt cost was an
issue, 75.3 percent of them did not believe it affected their adherence. However, those that
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Intervention Mapping
Final Exam
Fall 2012
did say gluten-free products’ high costs made adherence difficult were more likely to have
poor adherence. Edwards George et al. (2009) also found product cost and adherence to be
associated.
Though the number of new gluten-free products has increased drastically in recent
years (187 new products were introduced in 2001, compared to 691 in 2005) (Shadix,
2006), many celiac patients still have trouble finding gluten-free products or have limited
options. Araújo and Araújo (2011) found that 83 percent of participants had difficulty
locating gluten-free products, and 74.49 percent were not satisfied with the selection
available. Lee et al. (2007) compared ‘market baskets’ of gluten-based foods and gluten-
free alternatives in four U.S. cities, and found that only 36 percent of the items were
available in regular grocery stores, 42 percent were available in upscale grocery stores, and
even health stores only carried 94 percent of the products, while 100 percent of the gluten-
based products were available in every store. Singh and Whelan (2011) did a similar study
in the United Kingdom and had comparable results. Additionally, they found no gluten-free
products were available in the budget grocery and corner stores surveyed, which may be
the primary source of food for many low-income celiac patients. Furthermore, Edwards
George et al. (2009) found that limited availability of gluten-free products was associated
with lower diet adherence.
Several studies also found a general sense of difficulty eating outside the home,
particularly in restaurants, while traveling, and while dining with friends or relatives.
Smith and Goodfellow (2011) found that 12 percent of study participants said they have
difficulty adhering to a gluten-free diet while traveling, and Barratt, Leeds, and Sanders
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Intervention Mapping
Final Exam
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(2011) found that 72 percent of participants found adherence difficult during travel. Smith
and Goodfellow also found that 57 percent had difficulty adhering during social gatherings
with friends and relatives. Furthermore, Lee et al. (2012) found that 81 percent of men and
88 percent of women lapsed during social events, and 58 percent of celiac men and 67
percent of celiac women lapsed while eating with friends. O’Donnell and Edelstein (2009)
found that 68 percent of celiac patients believed there were minimal gluten-free options
available at restaurants, despite an increase in availability at several chain restaurants
(Shadix, 2006). Regardless, 57 percent of participants from Smith and Goodfellow and 88
percent from Barratt, Leeds, and Sanders reported difficulty adhering while eating out.
Furthermore, 82 percent of celiac men and 88 percent of celiac women reported dietary
lapses while eating at restaurants (Lee et al.). Butterworth (2004) and Leffler et al. (2008)
found that some celiac patients chose to avoid restaurants as a means to avoid inadvertent
gluten consumption; however, Leffler et al. found that avoidance did not improve
compliance.
Social support was another issue that was repeatedly reported. As mentioned
previously, many celiac patients report dietary lapses while engaging in social activities.
Participants from Sverker, Hensing, and Hallert’s (2005) study reported that their disease
status gave them unwanted visibility from others, so some chose to avoid disclosure and
even eat gluten-containing food. Others reported feeling neglected or forgotten when
gluten-free food was not available. Despite this, Sainsbury and Mullen (2011) found that
social support did not play a big role in adherence, as most celiac patients said they would
maintain a gluten-free diet regardless of what others thought.
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Intervention Mapping
Final Exam
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Unclear labeling and unnatural sources of gluten were also reported as problems for
adherence. Ukkola et al. (2012) found that 15 percent of those who had difficulty adhering
to a gluten-free diet felt that labels poorly identified gluten content, and Edwards George et
al. (2009) Diaz-Amigo and Popping (2012), and Pietzak (2005) all cited unclear labels as
problems for patients.
There are also many products that have hidden sources of gluten, which is often
used as a thickener because of its viscoelastic properties (Diaz-Amigo & Popping, 2012;
Shadix, 2006; Singh & Whelan, 2011). As such, it is also used in many non-food products,
such as lipstick, lip gloss, and lip balm; mouthwash and toothpaste; envelope and stamp
glue; vitamins, supplements, and medicine; and craft supplies (Autodore, Verma, & Gupta,
2012; Gainer, 2011; Martin, 2008).
Lack of follow-up with healthcare workers is another oft-cited factor attributing to
low adherence rates. Herman et al. (2012) found that only two-thirds of celiac patients had
any serologic testing (to determine progression of the disease and effects of dietary
adherence) during follow-up over a 5-year period, and many follow-up appointments
provided inadequate evaluation.
Furthermore, many celiac patients have limited access to health care services
(Stuckey, Lowdon, & Howdle, 2009), particularly to dieticians (Case, 2005; O’Donnell &
Edelstein, 2009; Ukkola et al., 2012). Moreover, those that do have access are often
unsatisfied with the information they receive. Leffler et al. (2008) found that 37 percent of
celiac patients did not receive adequate information from their dietician, 43.9 percent from
their gastroenterologist, 64.3 percent from their primary care physician, and 77.3 percent
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Intervention Mapping
Final Exam
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from their pharmacist. Others found that celiac patients did not feel their information
sources were helpful or sufficient, and that they were receiving information that was
conflicting, incorrect, or outdated (Bebb et al., 2006; Case, 2005).
Several determinants have been found to explain the environmental factors listed
above. Sainsbury and Mullen (2011) found that many celiac patients believed restaurant
staff had a lack of awareness regarding celiac disease and gluten-free food. Karajeh,
Hurlstone, Patel, & Sanders (2005) found chefs were significantly less likely than the
general public to have heard of celiac disease (17.1 percent vs. 44.2 percent, respectively),
including only 8.1 percent of chefs working in fast food, which could help explain limited
gluten-free food selection in restaurants.
While food labeling has been a problem previously, the Food Allergen Labeling and
Consumer Protection Act was put in place to help alleviate some of those issues. The act,
which went into effect on January 1, 2006, requires all food labels to clearly state any
common allergens in the ingredients, including wheat. However, this did not include barley,
rye, or oats, which are also problematic for celiac patients. Furthermore, there are no
official rules for using the term “gluten-free” (Bren, 2006). The current proposal is to allow
20μg of gluten per kilogram of product, but this label; however, will not account for cross-
contamination on naturally gluten-free products (Pietzak), which can be found in trace
amounts on over 80 percent of naturally gluten-free food (Araújo & Araújo, 2011), thus
making it difficult to assess the true gluten content of a product based on the label
information (Diaz-Amigo & Popping, 2012).
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Intervention Mapping
Final Exam
Fall 2012
Though there is a lack of adequate follow-up in celiac patients, there are no specific
recommendations regarding proper follow-up procedure with celiac disease(Stuckey,
Lowdon, & Howdle, 2009). Furthermore, dieticians’ services are often not covered by
insurance, making follow-up more costly and more difficult to accomplish (Case, 2005;
O’Donnell & Edelstein, 2009; Ukkola et al., 2012).
Regardless, Stucky, Lowdon & Howdle reported a lack of evidence that ongoing follow-up
will actually improve compliance, and therefore recommend it for further study.
Many environmental factors affect gluten-free diet compliance, but availability and
variety of gluten-free products, particularly in restaurants, as well as knowledge of
restaurant staff stand out as most important because of their relative ease of changeability
and considerable effect on adherence rates. Restaurants, as previously stated, are a great
source of difficulty for celiac patients and where intentional gluten ingestion often occurs.
Restaurant workers have also been shown to have poor awareness of celiac disease and
could potentially be contributing to unintentional gluten ingestion as a result.
In addition to environmental factors, there are a number of personal determinants
also affecting gluten-free diet adherence. Sainsbury and Mullen (2011) found a correlation
between perceived difficulty of maintaining a gluten-free diet and intention to maintain as
well as perceived difficulty and actual adherence. Barratt, Leeds, and Sanders (2011) found
that 80 percent of their study participants believed the gluten-free diet was difficult to
maintain, and Butterworth et al. (2004) found that 45 percent of participants believed a
strict gluten-free diet was “very or moderately difficult.” Lee et al. (2012) also reported that
68 percent of their participants perceived a gluten-free diet as difficult to follow. Several
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Intervention Mapping
Final Exam
Fall 2012
other studies also found that celiac patients often found a gluten free diet to be too
restrictive (Lee et al., 2012; Martin, 2008; Sainsbury & Mullen; Ukkola et al., 2012).
Lack of knowledge regarding gluten-free diet has been shown to negatively affect
adherence. Leffler et al. (2008) found that those who were poor adherers scored lower on a
gluten identification test than good adherers. O’Donnell and Edelstein (2009) also found
that 82 percent of those who could not identify gluten-free foods had difficulty adhering.
Furthermore, Ukkola et al. (2012) found that of the 12 percent of celiac patients who
reported having difficulty adhering to a gluten-free diet, 82 percent of them had a lack of
knowledge regarding the diet.
Sainsbury and Mullen (2011) found that control beliefs provided a significant
contribution to adherence variation, while Jacobsson, Friedrichsen, Göransson and Hallert
(2011) found that celiac patients reported a sense of powerlessness, and a decrease in
adherence motivation.
Several studies reported decreased negative outcome expectations regarding gluten
exposure (Dewar, Donnelly, McLaughlin, Johnson, Ellis, & Ciclitira, 2012; Edwards George
et al., 2009; Pietzak, 2005; Sverker, Hensing, & Hallert, 2005), and others reported that
many celiac patients disliked the taste or quality of gluten-free products (Edwards George
et al. Evans & Sanders, 2010; Lee et al., 2012; Lee et al., 2007; Pietzak; Smith & Goodfellow,
2011).
Sainsbury and Mullen (2011) point out that very few interventions have been
initiated to increase gluten-free diet adherence in celiac patients. As such, the following
objectives regarding behavioral outcomes, health outcomes, and environmental factors are
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Intervention Mapping
Final Exam
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based on limited information, and estimates have been borrowed from related frames of
reference:
• Increase gluten-free diet adherence from approximately 60 percent to 90 percent
in celiac patients over nine months.
• Decrease reported diarrheasymptoms from approximately 75 percent to 35
percent of celiac patients over six months.
• Increase restaurant workers’ awareness of celiac disease and gluten-free diet from
approximately 17 percent to 44 percent over six months.
Addolorato et al. (2004) reported an approximately 50 percent increase in gluten-
free diet adherence in female celiac patients following a 10-week support group
intervention and a 6-month follow-up. This study was the only successful intervention
found that measured an increase in dietary adherence. As such, these are the best available
estimates of what is achievable through an intervention.
Murray, Watson, Clearman, & Mitros (2004) reported a decrease of over 55 percent
in the occurrence of diarrhea in newly diagnosed celiac patients six months after starting a
gluten-free diet. Since these patients are newly diagnosed, and the target population for
this intervention proposal will be prevalent cases, these numbers may be artificially high.
However, depending on the occurrence rates of diarrhea in the target population, a
decrease of 50 percent should be achievable.
Karajeh et al. (2005) found that the general public in the U.K. was 2.58 times more
likely to be aware of celiac disease than chefs. There are no known barriers to impede chefs
and other restaurant workers from matching public awareness, so that is the target goal for
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restaurant workers. However, there are no studies to model this objective after, and as
such, six months was chosen to keep this objective in line with the other two program
objectives.
Logic Model
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Behavioral Outcomes
Strict adherence to a gluten-free diet is the only known effective treatment for celiac
disease, and if followed, can prevent complications such as further intestinal damage and
can also repair existing damage (Gainer, 2011; Herman et al., 2012; Lee et al., 2012).
Despite this, rates of strict adherence are strikingly low, estimated to be between 36 to 65
percent worldwide (Barratt, Leeds, & Sanders, 2011; Bebb, Lawson, Knight, & Long, 2006;
Hopman, Koopman, Wit, & Mearin, 2009; Pietzak, 2005; Sainsbury & Mullan, 2011).
Many personal determinants for low adherence have been researched. Sainsbury
and Mullan (2011) found a correlation between perceived difficulty of adherence and
actual adhere. Barratt, Leeds, and Sanders (2011) also found that 80 percent of study
participants reported difficulty in maintaining their diet, while 45 percent of Butterworth
et al.’s (2004) participants reported that a strict gluten-free diet was “very or moderately
difficult” to maintain. Additionally, 68 percent of Lee et al.’s (2012) participants described
gluten-free diet adherence as difficult, and several other studies reported that celiac
patients often believed the diet was too restrictive (Lee, Ng, Ciacco, & Green, 2012; Martin,
2008; Sainsbury & Mullan; Ukkola et al., 2012).
Difficulty finding gluten-free products has been associated with perceived difficulty
of adherence (Edwards George et al., 2009). Despite a growing market for gluten-free
products (Shadix, 2006), Araújo and Araújo (2011) found that 83 percent of study
participants had difficulty locating gluten-free products when shopping.
Several other studies have also found that celiac patients often find it difficult to eat
outside the home, particularly at restaurants and while dining with friends or relatives.
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Smith and Goodfellow (2011) found that 57 percent of study participants had difficulty
adhering during social gatherings with friends and relatives, and Lee et al. (2012) found
that 58 percent of celiac men and 67 percent of celiac women lapsed while eating with
friends. Smith and Goodfellow also found that 57 percent of participants had difficulty
eating at restaurants, while Barratt, Leeds, and Sanders (2011) found that 88 percent of
participants reported difficulty adhering at restaurants. Lee et al. (2012) found that 82
percent of celiac men and 88 percent of celiac women reported lapses in adherence while
eating at restaurants.
Several studies have also found that celiac patients have difficulty eating at home,
although these problems are less pronounced. Barratt, Leeds, and Sanders (2011) found
that 11 percent of participants had difficulty eating at home. Sverker, Östlund, Hallert, and
Hensing (2009) and Sverker, Hensing, and Hallert (2005) also found that celiac patients
struggled with managing meals for themselves and their families at home.
Based on the problem areas mentioned above, the following behavioral outcomes
are proposed:
• B.O.1: Purchase only gluten-free food at the grocery store every time.
• B.O.2: Eat only gluten-free food at home every time.
• B.O.3: Eat only gluten-free food at friends’ or family members’ homes every time.
• B.O.4: Eat only gluten-free food at restaurants every time.
These outcomes represent the bulk of food consumption areas for celiac patients.
While there are other situations where diet adherence may be difficult, these four areas
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encompass goals than can also be applicable in other areas that may be troublesome, such
as while travelling or at work (Sverker et al., 2009; Sverker, Hensing, & Hallert, 2005).
Environmental Outcomes
As mentioned above, purchasing food and eating away from home are both difficult
areas for gluten-free diet adherence. Many celiac patients have expressed disappointment
in the variety of gluten-free foods available. Araújo and Araújo (2011) found that 74.49
percent of study participants were not satisfied with the selection of gluten-free products
available to them. Lee et al. (2007) compared ‘market baskets’ of gluten-based foods and
gluten-free alternatives in four U.S. cities and found that only 36 percent of the items were
available in regular grocery stores, 42 percent were available in upscale grocery stores, and
even health stores only carried 94 percent of the products, while 100 percent of the gluten-
based products were available in every store. Singh and Whelan (2011) did a similar study
in the United Kingdom and had comparable results. Additionally, they found no gluten-free
products were available in the budget grocery store and corner stores surveyed, which may
be the primary source of food for many low-income celiac patients.
Availability of gluten-free food was also a problem at restaurants. O’Donnell and
Edelstein (2009) found that 68 percent of celiac patients believed there were minimal
gluten-free options available at restaurants, despite an increase in availability at several
chain restaurants (Shadix, 2006).
Several studies also cited unclear labeling as a source of difficulty to adherence.
Ukkola et al. (2012) found that 15 percent of those who had difficulty adhering to a gluten-
free diet felt that labels poorly identified gluten content, and Edwards George et al. (2009)
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as well as Diaz-Amigo and Popping (2012), and Pietzak (2005) all cited unclear labels as
problems for celiac patients. No studies cited specific issues with gluten-free labeling in
restaurants, but because restaurants rarely identify ingredients or allergens, these labeling
issues are likely generalizable to restaurants; however, additional research may be needed
to confirm this.
Sainsbury and Mullan (2011) found that many celiac patients believed restaurant
staff had a lack of awareness regarding celiac disease and gluten-free food. Karajeh,
Hurlstone, Patel, and Sanders (2005) found chefs were significantly less likely than the
general public to have heard of celiac disease (17.1 percent vs. 44.2 percent, respectively),
including only 8.1 percent of chefs working in fast food, which could help explain limited
gluten-free food selection in restaurants as well.
Additionally, Ahuja and Sicherer (2007) studied New York City restaurant workers’
beliefs about food allergies. Though celiac disease is not an allergy, it requires avoidance of
certain foods, similarly to people with food allergies. The researchers found that 72 percent
of restaurant workers felt at least “somewhat comfortable” providing an allergen-free meal,
and 70 percent felt the same that they could guarantee an allergen free meal. Despite this
confidence, only 22 percent of participants correctly answered all five food-allergy
knowledge questions, which are described next. Ahuja and Sicherer found that 24 percent
of the restaurant workers believed it was acceptable to eat small amounts of food allergen,
35 percent believed most allergens would be destroyed when exposed to high levels of
heat, 54 percent believed a clean buffet containing allergens would be a safe food choice,
and 25 percent believed it was acceptable to remove an allergen from a finished product
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and then serve it. Furthermore, there was no correlation between confidence and
knowledge, suggesting a high potential for exposure to allergens, and subsequently, gluten.
Though no studies were found showing a lack of awareness or knowledge regarding
celiac disease or other food intolerances, it is likely that grocery store workers would have
similar results as the restaurant workers studied above. However, additional research
would need to be done to determine if this is true. Adapting the questionnaires used for the
restaurant workers to address any unique situations found in grocery stores could achieve
this goal.
Based on the environmental factors listed above, the following environmental
objectives are proposed:
• E.B.O.1: Grocery store product manager will increase the number of gluten-
alternative food available at grocery store.
• E.B.O.2: Grocery store manager will increase visibility of gluten-alternative foods at
grocery store.
• E.B.O.3: Grocery store manager will increase visibility of naturally gluten-free foods
at grocery store.
• E.B.O.4: Grocery store workers will assist customers shopping for gluten-free foods
at grocery store.
• E.B.O.5: Restaurant manager will increase number of gluten-free menu items at
restaurant.
• E.B.O.6: Restaurant manager will increase visibility of gluten-free options at
restaurant.
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• E.B.O.7: Restaurant servers will assist guests asking about gluten-free options at
restaurant.
• E.B.O.8: Food preparers will prepare gluten-free foods at restaurant.
• E.B.O.9: Friends and family of celiac disease patients will provide gluten-free food
for CD friends and family who are visiting.
As mentioned previously, eating and shopping outside the home are the areas of
greatest difficulty for adherence. While other situations such as travelling and work are
also problems for celiac patients, these types of situations cater to much smaller numbers
of celiac patients and change may be too great of a burden.
Priority Population Differentiation
The proposed intervention is targeted at adult celiac patients in the greater Houston
area. Houston has a population of approximately 2.1 million people (49.8 percent female),
with a diverse racial and ethnic background, including 919,688 persons identified as
Hispanic or Latino (any race, 43.8 percent), 537,901 as Caucasian (non-Hispanic or Latino,
25.6 percent), 485,956 as Black or African American (non-Hispanic or Latino, 23.1
percent), and 124,859 as Asian (non-Hispanic, 5.9 percent) (U.S. Census Bureau, 2010). Of
those, there are 1.56 million adults (50.1 percent female, 38.8 percent ages 18-34, 49
percent 35-64, 12.2 percent over 65) (U.S. Census Bureau). These numbers would suggest
there are approximately 15,000 adult celiac patients in Houston; however, diagnosis is
thought to be as low as 5 percent in the United States (Reilly & Green, 2012), so diagnosed
celiac patients in Houston may be as low as 750. In the U.S., women and patients with
additional food intolerances have the highest rates of adherence, while men, minorities,
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and those with reduced income had the lowest rates (Autodore, Verma, & Gupta, 2012;
Black & Orfila, 2011; Edwards George et al., 2009; Lee et al., 2007; Leffler et al., 2008;
O’Donnell & Edelstein, 2009). In a self-reported survey, only 43 percent of South Asians
thought they were fully compliant, compared to 68 percent of Caucasians (Butterworth et
al., 2004), while Brar, Lee, Lewis, Bhagat, and Green (2006) found that only 44.4 percent of
a small group of African American celiac patients were fully adherent. Dieticians reported
that only 17 to 31 percent of their low-income patients were strictly adherent (O’Donnell &
Edelstein). Despite these differences in adherence rates, there is little to suggest that these
different groups should manage their adherence behaviors differently from one another. As
such, there will be no differentiation between subgroups for behavioral outcomes or
performance objectives. Despite this, a uniform program will not address each person’s
particular needs, so there will be processes incorporated to the intervention to allow for
specific individualization of the program to address those differences.
Performance Objectives
Adhering to a gluten-free diet requires the performance of several steps and the
ability to adapt those steps to apply in a variety of settings. The performance objectives
listed below are derived from descriptions of adherence behaviors in See and Murray
(2008) and Simons, Weiss, Furlong, and Sicherer (2005). Additional steps were added
based on personal experience working in a restaurant with celiac guests, as well as
purchasing and preparing gluten-free and allergen-free food for others. Generally speaking,
celiac patients must plan ahead, identify resources, identify safe sources of food, determine
the gluten content of food, determine the likelihood of cross-contamination, and utilize
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resources, in addition to the typical behaviors needed when eating or preparing to eat (See
& Murray, 2006; Simons et al., 2005). The performance objectives below serve as
preliminary outlines of the behaviors necessary to successfully complete the behavioral
outcomes mentioned previously; however, additional data is needed to assess the validity
of these outcomes. In-depth interviews with adherent celiac patients regarding the
processes used to achieve adherence could be a potential method to determine validation.
Behavioral Objective 1: Purchase only gluten-free food at the grocery store every
time
P.O.1.A: Decide to go grocery shopping
P.O.1.B: Make a list of needed gluten-free foods
P.O.1.C: Select a grocery store with gluten-free options
P.O.1.D: Go to selected grocery store
P.O.1.E: Bring gluten-free resource, if needed
P.O.1.F: Locate gluten-free items on list
P.O.1.G: Check ingredient list to verify gluten-free status
P.O.1.H: Ask grocery store staff for assistance with locating items or determining
gluten-free status, if needed
P.O.1.I: Pay for items
P.O.1.J: Bring items home and store as directed
Behavioral Objective 2: Eat only gluten-free food at home every time
P.O.2.A: Decide to make food
P.O.2.B: Review trusted sources of information to find a gluten-free recipe
P.O.2.C: Select a gluten-free recipe to make
P.O.2.D: Collect ingredients to make desired food
P.O.2.E: Check ingredient lists to verify gluten-free status of ingredients
P.O.2.F: Collect cooking equipment needed to prepare food
P.O.2.G: Determine potential for gluten contamination of cooking equipment and
workspace
P.O.2.H: Clean equipment and workspace as needed with warm soapy water
P.O.2.I: Prepare food as directed
P.O.2.J: Eat prepared food
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Behavioral Objective 3: Eat only gluten-free food at friends' or family members'
homes every time
P.O.3.A: Decide to eat at friends' or family members' home
P.O.3.B: Inform meal preparer of dietary requirements in advance
P.O.3.C: Provide trusted sources of information about the gluten-free diet or gluten-
free recipes to meal preparer
P.O.3.D: Ask meal preparer if food is gluten-free
P.O.3.E: Ask meal preparer about potential sources of cross-contamination
P.O.3.F: Check ingredient labels if unsure of food's gluten content
P.O.3.G: Only eat foods known to be gluten-free and with little chance of cross-
contamination
Behavioral Objective 4: Eat only gluten-free food at restaurants every time
P.O.4.A: Decide to eat out
P.O.4.B: Select a restaurant with gluten-free options
P.O.4.C: Go to selected restaurant
P.O.4.D: Bring gluten-free resource, if needed
P.O.4.E: Ask restaurant staff if there are gluten-free options available
P.O.4.F: Select menu item to eat
P.O.4.G: Identify potential sources of gluten in selected menu item
P.O.4.H: Ask restaurant staff to address any gluten sources in selected menu item
P.O.4.I: Ask restaurant staff to address any potential for cross-contamination
P.O.4.J: Confirm order and gluten-free status upon food's arrival
P.O.4.K: Only eat foods specified to be gluten-free with little chance of cross
contamination
P.O.4.L: Pay for food
Environmental agents—such as friends, family, and restaurant and grocery store
employees—must also employ many of the performance objectives listed above when
providing food for a celiac patient. Such objectives include identifying sources of gluten,
identifying sources of cross-contamination, identifying resources, and utilizing resources
(See & Murray, 2006; Simons et al., 2005). Additionally, environmental agents must also
perform typical tasks (such as adding new foods to their selection, increasing visibility of
featured items, and addressing customer questions) but must tailor those behaviors to the
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specific needs of the celiac patient. The environmental performance objectives listed below
are derived from the descriptions of behaviors found in See and Murray and Simons et al.,
as well as purchasing and preparing gluten-free and allergen-free food to others, and
personal experience working in a restaurant. Again, additional measures should be taken to
assess the validity of these preliminary performance objectives. In-depth interviews with
grocery store and restaurant employees regarding processesneeded to increase
availability and visibility of gluten-free products, and addressing customer concerns is a
potential method for validation. Additionally, in-depth interviews with friends and family
members of celiac patients who prepare gluten-free food could also address the validity of
performance objectives.
Environmental Behavioral Objective 1: Grocery store product manager will increase
number of gluten-alternative foods available at grocery store
E.P.O.1.A: Decide to increase number of gluten-alternative foods available
E.P.O.1.B: Assess current product availability
E.P.O.1.C: Discuss desired products with customers
E.P.O.1.D: Ask distributor about desired gluten-alternative products
E.P.O.1.E: Order available desired gluten-alternative products
E.P.O.1.F: Place products in clearly visible location to sell
E.P.O.1.G: Continue to order popular gluten-alternative products
Environmental Behvavioral Objective 2: Grocery store manager will increase
visibility of gluten-alternative foods at grocery store
E.P.O.2.A: Decide to increase visibility of gluten-alternative foods
E.P.O.2.B: Identify gluten-alternative foods in store
E.P.O.2.C: Review store layout to determine ideal layout
E.P.O.2.D: Assign workers to reorganize store to ideal layout
E.P.O.2.E: Assign workers to shelve gluten-alternative products with gluten-free label
clearly visible, if present
E.P.O.2.F: Add additional signage to draw attention to gluten-alternative foods
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Environmental Behavioral Objective 3: Grocery store manager will increase visibility
of naturally gluten-free foods
E.P.O.3.A: Decide to increase visibility of naturally gluten-free foods
E.P.O.3.B: Identify naturally gluten-free foods in store
E.P.O.3.C: Add additional signage to draw attention to gluten-free status
Environmental Behavioral Objective 4: Grocery store workers will assist customers
shopping for gluten-free foods at grocery store
E.P.O.4.A: Listen to customer questions
E.P.O.4.B: Direct customer to specific gluten-free item in question or to section with
gluten-free food
E.P.O.4.C: Provide customer with gluten status of specific product
E.P.O.4.D: Ask supervisor for assistance, if needed
Environmental Behavioral Objective 5: Restaurant manager will increase numberof
gluten-free menu items at restaurant
E.P.O.5.A: Decide to increase number of gluten-free menu items
E.P.O.5.B: Assess current availability of gluten-free menu items
E.P.O.5.C: Discuss desired menu changes with customers
E.P.O.5.D: Work with kitchen manager to substitute gluten in menu items with gluten-
alternative version
E.P.O.5.E: Work with kitchen manager to create new gluten-free menu items
E.P.O.5.F: Check ingredients to determine gluten-free status
E.P.O.5.G: Add new offerings to menu
Environmental Behavioral Objective 6: Restaurant manager will increase visibility of
gluten-free options at restaurant
E.P.O.6.A: Decide to increase visibility of gluten-free menu items
E.P.O.6.B: Identify gluten-free menu items
E.P.O.6.C: Add additional symbols or descriptions to menu to point out gluten-free
status, or create separate gluten-free menu
E.P.O.6.D: Add additional signage to restaurant to inform customers of availability of
gluten-free options
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Environmental Behavioral Objective 7: Restaurant servers will assist guests asking
about gluten-free options at restaurant
E.P.O.7.A: Listen to guest questions
E.P.O.7.B: Direct customer to gluten-free menu or menu items
E.P.O.7.C: Determine gluten status of ordered items
E.P.O.7.D: Inform food preparer of gluten-free needs
E.P.O.7.E: Ask food preparer if final product is gluten-free
E.P.O.7.F: Provide gluten-free meal to customer
Environmental Behavioral Objective 8: Food preparers at restaurant will prepare
gluten-free foods
E.P.O.8.A: Identify need for gluten-free food
E.P.O.8.B: Determine gluten-status of ordered item
E.P.O.8.C: Discus alternatives with server if not gluten-free
E.P.O.8.D: Wash hands
E.P.O.8.E: Collect needed materials for meal
E.P.O.8.F: Determine potential for gluten-contamination of equipment and ingredients
E.P.O.8.G: Wash or replace contaminated equipment and workspace, if needed
E.P.O.8.H: Prepare gluten-free food separate from potential gluten contaminants
E.P.O.8.I: Provide gluten-free meal to server for delivery
Environmental Behavioral Objective 9: Friends and family of CD patients will provide
gluten-free food for CD friends and family who are visiting
E.P.O.9.A: Decide to make food for CD guest
E.P.O.9.B: Review trusted sources of information to find a gluten-free recipe
E.P.O.9.C: Select a gluten-free recipe to make
E.P.O.9.D: Collect ingredients to make desired food
E.P.O.9.E: Check ingredient lists to verify gluten-status of ingredients
E.P.O.9.F: Collect cooking equipment needed to prepare food
E.P.O.9.G: Determine potential for gluten contamination of cooking equipment and
workspace
E.P.O.9.H: Clean equipment and workspace as need with warm soapy water
E.P.O.9.I: Prepare food as directed
E.P.O.9.J: Serve gluten-free food to guest
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Individual Health Promoting Determinants
Sainsbury and Mullan’s (2011) study is the only one found that has purposely
applied theoretical constructs to gluten-free diet adherence in celiac disease. The
researchers used the Theory of Planned Behavior as a model for adherence; however, this
model does not provide much insight into intervention development (Glanz, Rimer, &
Viswanath, 2008). As such, constructs from Social Cognitive Theory will also be used to
describe the health promoting behaviors. Because of the limited availability of theory-
based studies on celiac disease, diabetes self-management studies have also been included.
Much like celiac patients, diabetics must be cognizant of their dietary intake and may
perform similar behaviors, such as label reading, identifying resources, and utilizing
resources (Al-Khawaldeh, Al-Hassan, & Froelicher, 2012; Wu, Courtney, Edwards,
McDowell, Shortridge-Baggett, & Chang, 2007; McCleary-Jones, 2011; Lowe, Linjawi,
Mensch, James, & Attia, 2008). Additional data may need to be collected in the target
population to determine the validity of these determinants. Questionnaires such as the
Diabetes Management Self-Efficacy Scale (DMSES) and the Summary of Diabetes Self-Care
Activities (SDSCA) could be adapted for a celiac population (Al-Khalwaldeh, Al-Hassan, &
Froelicher; Wu et al.; McCleary-Jones), as well as other existing tools such as a food
ingredient quiz (Leffler et al., 2008) could be used to assess the determinants of the target
population.
Self-Efficacy
Self-efficacy is defined as the internal belief that an individual can successfully
perform a specific behavior to achieve a desired result (Glanz, Rimer, & Viswanath, 2008).
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Bandura (2004) found that self-efficacy is an important determinant in health-promoting
behaviors in general, and in self-management behaviors in particular. See and Murray
(2006) found that as celiac patients became more confident, they were better able to
adhere to a gluten-free diet, especially in situations outside the home. Al-Khawaldeh, Al-
Hassan, and Froelicher (2012), Wu et al. (2007), McCleary-Jones (2011), and Lowe et al.
(2008) also found better dietary adherence and self-care in diabetics with higher self-
efficacy.
Skills
Bandura (2004) described a significant connection between skills and self-efficacy.
He described skill building as necessary for increasing self-efficacy to perform a behavior.
See and Murray (2006) also identified label reading as a needed skill to adhere to a gluten-
free diet. Al-Khawaldeh, Al-Hassan, and Froelicher (2012) and Low et al. (2008) also
identified self-management skills as necessary for behavior change.
Knowledge
Knowledge is a core determinant of Social Cognitive Theory, and sets the stage for
behavior change (Bandura, 2004). See and Murray (2006) also described knowledge as an
important facet of gluten-free diet adherence. Furthermore, better knowledge of
diabetes self-care was associated with better dietary adherence and health outcomes in
diabetics (Al-Khawaldeh, Al-Hassan, & Froelicher, 2012; Wu et al., 2007; McCleary-Jones,
2011, Lowe et al., 2008).
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Outcome Expectations
Outcome expectations are defined as the anticipated positive or negative products
of a behavior (Bandura, 2004). Outcome expectations are closely related to self-efficacy, as
confidence in one’s abilities can affect the anticipated result of those abilities (Bandura).
See and Murray (2006) found positive outcome expectations regarding gluten-free diet
effectiveness to be an important factor in adherence. Additionally, Al-Khawaldeh, Al-
Hassan, and Froelicher (2012) and Wu et al. (2007) found that diabetics with better
outcome perceptions also had better self-care behaviors.
Environmental Determinants
Very little research has been done on interventions at the individual level for celiac
disease (Sainsbury and Mullan, 2011), and even less has been researched at the
environmental level. However, many of the performance objectives of the environmental
agents are similar to those of the individual, as mentioned previously. This suggests that
the environmental agents will also need self-efficacy, skills, knowledge, and outcome
expectations to successfully create changes in the environment.
Nonetheless, the environmental agents do not reap the benefits of positive health
outcomes and increased quality of life that celiac patients receive through adherence. As
such, those environmental agents facilitating adherence may need some additional
motivation to achieve their performance objectives, and so attitudes have also been added
to their determinants. Attitudes are defined as the overall positive or negative opinion of
performing a behavior (Glanz, Rimer, & Viswanath, 2008). Bandura (2004) added that
attitudes describe how an individual feels about the expected outcomes (i.e., a grocery
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store manager believes increasing gluten-free products will increase a celiac patient’s
adherence to a gluten-free diet, and that adherence is both a positive and important). See
and Murray (2006) also stated that a positive attitude from providers was important for
adherence. While friends and family, and grocery store and restaurant employees play a
very different role than a healthcare worker, the concept of a positive attitude may still be
applicable because those situations still have an expectation of customer service, loyalty, or
other care providing behaviors.
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Methods and Applications
Only three gluten-free diet interventions were found using celiac patients (Murray,
Watson, Clearman, & Mitros, 2004; Meyer, Fasshauer, Nebel, & Paschke, 2004; Jacobsson,
Friedrichsen, Göransson, & Hallert, 2012), two of which did not provide any indication of
long-term effects (Meyer et al.; Jacobsson et al.). The third intervention gave standard
dietary advice after diagnosis and measured the adherence six months later, so it will be
considered a baseline measurement for comparing intervention effectiveness (Murray et
al.). Furthermore, none of these studies were based in theory, and as such they are not ideal
models to emulate.
Despite this, Bartholomew et al. (2011) provide an extensive list of effective
methods for health behavior change, several of which are applicable to this intervention.
Persuasive communication is defined as the use of arguments and other strategies to
produce a change in an individual’s or agent’s attitude or behavior (Bartholomew et al.).
Bandura (2004) also recommends using persuasive communication, and See and Murray
(2006) suggest that discussing the benefits and consequences of adherence/non-adherence
would be beneficial in creating behavior change. Persuasive communication could also be
used with environmental agents. Case (2005) argues that the gluten-free diet market will
be worth $5 billion in the United States by 2015. Additionally, Watson (2009) suggests that
providing gluten-free products would provide positive exposure for businesses. These
messages could be aimed at grocery stores and restaurants looking to make a profit while
also supporting the needs of community members.
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Bartholomew et al. (2011) define active learning as a goal-oriented and activity-
based situation, which promotes learning. Bandura (2004) also found that learners who are
actively engaged with the material see a greater impact than those who are learning
passively. Al-Khawaldeh, Al-Hassan, and Froelicher (2012) used active learning processes
successfully in their diabetes intervention. Possible applications of active learning could
include interactive workshops on cooking and shopping for gluten-free food, role-playing
meal scenarios, and supervised meal experiences. Environmental agents could also
participate in interactive workshops for cooking, customer service, and availability and
visibility of gluten-free products.
As mentioned previously, no two celiac patients have the exact same needs. As such,
it is important to individualize their program experience to address their specific needs.
Bandura (2004) also recommends individualization, but warns against tailoring program
pieces to irrelevant factors, which could be a waste of time and money. Duca (2009) also
recommends personalizing resources to address the specific needs of the patient.
Individualization could be applied using one-on-one dialogue with dieticians and peer
mentors, both with celiac patients and environmental agents.
Modeling is defined as using a person (or agent) as an example to reinforce desired
outcomes (Bartholomew et al., 2011). Modeling has been shown to improve self-efficacy
and skills; however, it is important that participants find the model relatable and that the
model also expresses a degree of struggle (Bartholomew et al.). Celiac patients could be
paired with successful adherers, and could also hear personal testimony from other
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successful patients. Likewise, environmental agents could benefit from model businesses,
employees, and friends and family of celiac patients.
Bartholomew et al. (2011) define feedback as providing information regarding the
degree of success achieved in a behavior or level of influence. Lowe et al. (2008) provided
feedback to diabetics on their self-management, which led to better self-care. Peer mentors
and dieticians can provide feedback during interactive activities, as well as during one-on-
one assessments of progress. Dieticians can also provide feedback to grocery stores and
restaurants regarding their efforts to increase availability and visibility of gluten-free food.
Model business contacts can also provide feedback on customer service behaviors, while
model food preparers and dieticians can provide feedback during cooking workshops.
Facilitation is defined as making changes in the environment to make desired
behaviors easier to achieve (Bartholomew et al., 2011). Social Cognitive Theory encourages
change on a higher level than the individual (Bandura, 2004), and increasing visibility and
availability of gluten-free products are examples of facilitation applications.
Discussion is another method that can be used to increase participant knowledge.
Discussion creates an informal debate situation for participants to contemplate new ideas
(Bartholomew et al., 2011). Possible discussion points could include “tips and tricks” to
adherence for individuals, or “tips and tricks” to achieve behavioral outcomes for
environmental agents.
Elaboration is defined as creating meaning for information provided through
stimulation (Bartholomew et al., 2011). Bartholomew et al. recommend using clear,
applicable, and unexpected messages to facilitate knowledge increase. Possible messages
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could include hidden sources of gluten for individuals, and personal benefits to behavioral
outcomes for environmental agents.
Arguments go hand-in-hand with persuasive communication, and provide novel
information as a means to create changes in attitude and outcome expectations
(Bartholomew et al., 2011). Possible arguments to promote adherence in individuals could
be some of the lesser-known benefits to adherence, such as increased fertility (Reilly &
Green, 2012; O’Donnell & Edelstein, 2009; Butterworth et al., 2004; Autodore, Verma, &
Gupta, 2012; Ukkola et al., 2012), better and more frequent sex (Haines, Anderson, &
Gibson, 2008); improved dental enamel (Autodore, Verma, & Gupta), reduced hair loss
(Gainer, 2011), better skin (O’Donnell & Edelstein; Autodore, Verma, & Gupta), and
increased energy (Haines, Anderson, & Gibson). Arguments for environmental agents could
include such benefits as increases in sales, success of other businesses who have increased
visibility and availability of gluten-free foods, and how the individual or business can be
part of the solution.
Bartholomew et al. (2011) define guided practice as behavior rehearsal with
opportunities for feedback and discussion. This may also include modeling, active learning,
and feedback (Bartholomew et al.). Examples of guided practice applications could include
interactive workshops, role-playing, and supervised food experiences, as mentioned
previously, for both the individual and the environmental agents.
Additionally, there are methods specific to the environmental agents, such as
participatory problem solving. Community-based participatory research is a growing field
in health promotion, and allows environmental agents (as well as individuals) to
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participate in creating the programs (Bartholomew et al., 2011). Business contacts and
food preparers could both collaborate with the health promoter to determine possible
programs for increasing availability, visibility, and customer service, as well as how to
safely and effectively prepare gluten-free food.
Another method aimed at the environmental agents would be to provide contingent
rewards, which provide encouragement or recognition of achievement (Bartholomew et al.,
2011). Participant businesses that satisfactorily complete the program will be allowed to
use the program logo and display certification on their marketing, menus, and signage.
Finally, technical assistance facilitates behavioral outcomes through technical
resources (Bartholomew et al., 2011). Possible applications of technical assistance could
include a dietician hotline for individuals and businesses with questions regarding celiac
disease and the gluten-free diet, or a gluten-free diet guidebook for the same purposes.
Below are tables of potential methods and applications to be utilized in the
intervention, divided by behavioral outcomes and environmental outcomes. Further
investigation of these methods and applications may be needed to determine their
potential effectiveness. Such investigation could include interviews and collaboration with
potential program participants, or a pilot study using limited participants.
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Program Description, Scope and Sequence, and Design Document
The proposed program will consist of four different components, each in two parts.
The components will be the grocery store certification program, the restaurant certification
program, the celiac patient education program, and the friends and family of celiac patients
education program. Each component will include an initial Core Certification or Core
Education program for role models (known as Core Models) in each component, followed
by the standard certification or standard education programs, which will incorporate the
Core Models into the curriculum. Because the Core Certification and Core Education
programs will be the first round of the program and will include a smaller number of
participants, these pieces will also be used to pilot test the program. The program will be
known as the Gluten-Free Friend program, or the GFF program for short. This abbreviation
is a play on BFF (short for Best Friends Forever), which will be suggestive of the
supportive, friendly atmosphere this program aims to create for celiac patients. GFF-
certified grocery stores and restaurants, as well as Core Models for celiac patients and their
friends and families, will be identified as GFFs, to suggest that they are supportive friends
of the celiac community.
The grocery store certification program will include two education sessions (one for
management and one for other staff), followed by three or more mystery shopper
assessments. A dietician will lead the education sessions, and one or more Grocery Store
Core Models will assist during the standard certification program (Phase 2: Grocery Store
Certification). The management education session (Sessions 1.1, 2.1) will provide
education on celiac disease and the gluten-free diet, an assessment of the grocery store’s
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availability and visibility of gluten-free products, and a workshop to develop an action plan
to improve availability and visibility. This session is expected to take 1-2 days, depending
on the size and format of each grocery store. Lee et al. (2007) and Singh and Whelan (2011)
have performed assessments on availability of gluten-free products in grocery stores;
however, their assessments were narrower and did not explicitly state the time allotted to
the assessment in each grocery store, so the actual time frame for this process may need to
be revised during the pilot-testing phase (Phase 1: Core Grocery Store Certification).
The employee education session (Sessions 1.2, 2.2) will provide education on celiac
disease and the gluten-free diet, address changes the store is making to improve
availability and visibility, gluten identification tactics, customer service strategies, and a
certification exam. This session is expected to take approximately 4 hours; however, this
will be revised as needed during the pilot-testing phase (Phase 1). At least 50 percent of
grocery store employees will need to attend an education session; however, a grocery store
could hold several sessions to meet this criterion, if desired. Additionally, 100 percent of
attendees must pass the certification exam with a 90 percent or higher; however,
employees are allowed to re-take the exam once per day until they pass.
After the education sessions, the grocery store will implement the changes in the
action plan and participate in mystery shopper assessments (Sessions 1.3-1.5+, 2.3-2.5+).
In each assessment, the unidentified shopper will attempt to purchase gluten-free food
from the grocery store. The shopper will assess the availability and visibility of gluten-free
products, as well as the perceived knowledge and helpfulness of the staff. The grocery store
must pass three consecutive mystery shopper assessments before it becomes GFF-certified.
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Additionally, grocery stores that have food preparation components (similar to a
restaurant), will need to have those departments go through the restaurant certification
program to be included in the certification. See Tables 1 and 2 for more details.
The restaurant certification program will be very similar to the grocery store
certification program; however it will be tailored to address the unique needs of a
restaurant, such as food preparation. Again, there will be two education sessions (one for
management and one for other staff), followed by three or more mystery shopper
assessments. A dietician will lead the education sessions, with the assistance of one or
more Restaurant Core Models during the standard certification program (Phase 4:
Restaurant Certification). The management education session (Sessions 3.1, 4.1) will
include education on celiac disease and the gluten-free diet, a restaurant assessment, and a
workshop to develop an action plan to improve availability and visibility of gluten-free
menu items. This session is expected to take 1-2 days, depending on the size and format of
the restaurant; however this time frame may be adjusted during the pilot-testing phase
(Phase 3: Core Restaurant Certification). The staff education session (Sessions 3.2, 4.2) will
include education on celiac disease and the gluten-free diet, address changes to increase
availability and visibility of gluten-free menu items, gluten identification tactics, customer
service strategies, and a certification exam. This session is expected to take approximately
4 hours, but may be adjusted during the pilot-testing phase (Phase 3). At least 75 percent of
restaurant staff will need to attend an education session. This participation rate is higher
than the grocery store because restaurant employees have a more direct impact on celiac
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patients’ food. Additionally, 100 percent of the attendees must pass the certification exam
with a score of 90 percent or higher.
Following the education sessions, the restaurant will implement the changes in the
action plan and participate in three or more mystery shopper assessments (Sessions 3.3-
3.5+, 4.3-4.5+). In each assessment, an unidentified customer will attempt to order a
gluten-free meal from the restaurant. The shopper will assess the availability and visibility
of gluten-free menu items, as well as the perceived knowledge and helpfulness of the staff.
The restaurant must pass three consecutive assessments before it will be GFF-certified. See
Tables 3 and 4 for more details.
The celiac patient training program will consist of 12 weekly education workshops.
These workshops are expected to be approximately 2 hours in duration each; however, this
may be adjusted during the pilot-testing phase (Phase 5: Core Celiac Patient Training
Course). A dietician will lead these workshops, with the assistance of one or more Celiac
Core Models during the standard celiac training program (Phase 6: Celiac Patient Training
Course). Topics covered will include education about celiac disease and the gluten-free
diet, gluten identification tactics (Sessions 5.1, 6.1), shopping for gluten-free products
(Sessions 5.2-5.4, 6.2-6.4), preparing gluten-free food (Sessions 5.5-5.7, 6.5-6.7), eating
gluten-free food with friends and family (Sessions 5.8-5.9, 6.8-6.9), and eating gluten-free
food at restaurants (Sessions 5.10-5.12, 6.10-6.12). Most topics will include a problem-
solving discussion, a demonstration of the activity by the dietician, and opportunities for
the participants to role-play and/or practice the activity in real-life settings. The dietician
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and Core Models will observe the participants in these activities and give feedback. See
Tables 5 and 6 for more details.
The friends and family training program will consist of a two-day education
workshop. Each day will be approximately 6 hours in duration; however this may be
adjusted as needed during the pilot-testing phase (Phase 7: Core Friends and Family
Training Course). A dietician will lead the education program, with the assistance of one or
more Friends and Family Core Models during the standard training program (Phase 8:
Friends and Family Training Course). The friends and family program will loosely follow
the curriculum of the Celiac Patient Training Course; however, it will be individualized to
meet the unique needs of the celiac patients’ friends and family. The program will include
education on celiac disease and the gluten-free diet, gluten identification tactics, shopping
for gluten-free products (Sessions 7.1, 8.1), preparing gluten-free food, and support
strategies (Sessions 7.2, 8.2). Most topics include a problem-solving discussion, a
demonstration of the activity by the dietician, and opportunities for the participants to
role-play and/or practice the activity in real-life settings. The dietician and Core Models
will observe the participants in these activities and give feedback. See Tables 7 and 8 for
more details.
