Feeding Beyond Diagnosis: Parental Beliefs and Dietary Practices Among Children at Familial Risk for Celiac Disease

1. Introduction

Cοeliac disease (CD) is a chronic, immune-mediated disorder caused by the consumption of gluten in genetically predisposed individuals. CD can lead to inflammatory damage to the small intestine mucosa, characterized by intestinal villi atrophy, crypt hyperplasia, and malabsorption of nutrients [1].

The prevalence of CD in the general population worldwide is estimated to be around 1%, with several studies indicating that the disease occurs with similar or even higher frequency in children and adolescents [2]. Symptoms of CD in children and adolescents typically include growth failure, poor nutritional status, abdominal pain and distension, chronic diarrhea, and iron deficiency anemia [3]. Importantly, a significant proportion of children with CD, especially older children and adolescents, present with atypical or silent forms of the disease without obvious gastrointestinal symptoms. This contributes to underdiagnosis and delayed diagnosis of CD [4].

CD has a strong genetic basis. First-degree relatives (FDRs) (i.e., parents, siblings, children) of individuals living with CD are at substantially elevated risk of developing the disease. For instance, offspring of individuals with CD are at a higher risk of developing the disease compared to the general population, with prevalence up to 38% [5]. The risk of CD diagnosis is further increased in families with more than one affected member. In a study of families with at least two members with CD, the risk of developing the disease was estimated at 26.3% for siblings and 12.9% for parents [6]. At the same time, CD predisposition has been associated with the presence of specific Human Leukocyte Antigen (HLA) alleles, particularly HLA-DQ2 and HLA-DQ8, which are detected in the vast majority of patients [7,8,9].

However, the presence of genetic markers alone is insufficient to cause the disease or to justify therapeutic interventions based solely on genetic status [10,11]. Rather, CD results from complex interactions between genetic susceptibility and environmental factors, particularly dietary gluten exposure [12,13]. Reflecting the central role of diet in CD expression, adherence to a strict lifelong gluten-free diet remains the only effective treatment for the disease, leading to symptom remission and mucosal healing [13,14,15]. Despite its effectiveness, the implementation of a lifelong gluten-free diet requires substantial lifestyle changes and ongoing vigilance by the entire family. These long-term changes might have a strong impact upon the dietary practices, the social activities, and the psychosocial functioning of the broader family. They can also negatively affect the overall quality of life of individuals living with it, especially during childhood and adolescence [16,17].

Although studies have examined genetic susceptibility, screening practices, and environmental factors associated with CD development in FDRs, less is known about how parents interpret this risk. It is not yet well-documented whether parents believe that CD can be prevented, and how such beliefs influence the dietary practices adopted within the family [5]. Given their central role in forming children’s health behaviors, parents’ perceptions may directly influence dietary practices, engagement with screening programmes, and attitudes toward prevention and early diagnosis in unaffected but genetically predisposed children [18]. Therefore, a better understanding of these views could improve clinical practice and support the development of patient-centred interventions for children and adolescents at increased genetic risk of CD [19].

Given the complexity of parental beliefs and behaviors in CD prevention, a mixed-methods approach may be particularly valuable. Qualitative research can provide in-depth insights into parents’ experiences, motivations, and perceptions, while quantitative data can assess the prevalence and distribution of these attitudes and practices within a larger population of parents of children with CD [20]. Integrating subjective experiences with measurable indicators of beliefs and behaviors will provide a more comprehensive understanding of prevention-related family practices. Such evidence can inform targeted interventions aimed at improving risk communication, promoting early diagnosis, and supporting dietary guidance in high-risk populations, particularly in the Greek context where relevant data remain limited [21].

Considering the sparse literature on parental views on CD risk and prevention, this mixed-methods study aimed to investigate the beliefs, perceptions, and dietary practices of parents of children with CD regarding their unaffected children. Specifically, it aimed to examine how parents perceive the hereditary risk of CD in their unaffected children, their beliefs about the role of diet in disease prevention and early detection, and whether these beliefs influence the dietary practices and preventive strategies they adopt for their unaffected children. By integrating quantitative and qualitative evidence, the study aims to provide a more comprehensive understanding of parental prevention-related beliefs and behaviors in families affected by CD.

2. Results

2.1. Quantitative Results

2.1.1. Participants

The demographic profile of the survey participants (N=110) is presented in Table 1. The median age of the parents was 45 years. The majority of the sample was female (88.2%). Regarding the educational level, the participants were highly educated, with 45.5% holding a Bachelor’s degree and 39.1% possessing a Master’s or Doctorate (PhD). Only a small proportion reported secondary education as their highest level of education.

In terms of marital status, most participants were married (77.3%), followed by those who were single (19.1%). The employment status data revealed that a significant proportion was in full-time employment (69.1%), while 9.1% were unemployed and 6.4% were retired. Regarding the place of residence, the vast majority lived in urban areas (78.2%), with smaller percentages residing in semi-urban (10.0%) and rural areas (11.8%).

2.1.2. Parental Perceptions and Practices

The participants’ beliefs regarding the increased risk of their unaffected children developing the disease is presented in Table 2. The findings indicate a high level of awareness concerning the hereditary nature of the condition. Specifically, more than half of the participants (51.8%, n=57) strongly agreed that their unaffected children are more likely to develop the disease than the general population, while an additional 30.0% (n=33) expressed agreement.

According to Table 3, professional engagement was remarkably high with 93.6% of the respondents having discussed the possibility of disease onset and prevention with a healthcare professional and 72.7% having specifically discussed the role of diet in CD prevention. However, the majority (71.8%) did not believe that diet played a role in CD onset or prevention whereas only 21.8% (n=24) implemented dietary changes within the family to reduce the CD risk of their unaffected children.

Among the 80 participants who sought professional advice from healthcare professionals, gastroenterologists were the most frequently consulted specialists (90.0%), followed by dietitians-nutritionists (22.5%). A smaller percentage of the sample consulted internal medicine physicians (12.5%) or general practitioners (6.3%), while 6.3% sought advice from other specialties (see Table 4). It should be noted that since participants were able to select more than one specialty (multiple response questions), the total number of consultations exceeds the sample size.

A multivariable logistic regression analysis was performed to further investigate factors associated with dietary changes in the families as CD preventive strategy (N=110 with n=24 events) (see Table 5). The model demonstrated a good fit to the data, as indicated by the overall model test (χ²= 55.7, df = 17, p = < 0.001) and accounted for a relatively high proportion of variance (Nagelkerke R² = 0.612). However, estimates should be interpreted cautiously given the limited number of events. The only statistically significant predictor identified is the belief in the role of diet as a preventative strategy against CD (p < 0.001), which exhibits a substantial effect with an odds ratio of 28.865 (95% CI: 4.527–184.040). This indicates that individuals who acknowledge the importance of diet are significantly more likely to reach the outcome compared to those who do not. While consulting a healthcare professional regarding genetic risk (OR = 15.386, p = 0.059) and gender (p = 0.076) showed a strong trend towards significance, they did not meet the standard threshold of α = 0.05. Other variables, including age, educational level, employment status, and belief in genetic risk, did not demonstrate a statistically significant influence on the model. It should be noted that some estimates showed wide or undefined confidence intervals, likely reflecting sparse data across certain categories and potential model instability; therefore, these results should be interpreted with caution.

2.2. Qualitative Results

2.2.1. Participants

As Table 6 shows, 20 parents of children diagnosed with CD participated in the study, including four men and 16 women. The median age of interviewees was 45 years. Most lived in urban areas, while six participants lived in rural areas. In terms of educational level, most of the participants held at least a Bachelor’s degree. Most participants worked in the private sector, while a smaller percentage were self-employed, retired, or employed in the public sector. The age at which participants’ offspring was diagnosed with CD varied considerably, ranging from young childhood to adolescence.

Two themes emerged from the analysis, namely “household dietary practices following a CD diagnosis” and “factors influencing these practices as reflected in the Health Belief Model (HBM)”. The first theme describes the considerable variation in parental dietary responses, ranging from complete household adoption of a gluten-free diet to minimal or no changes in family eating habits. The second theme explores the factors affecting these dietary practices, through the lens of the HBM constructs of perceived susceptibility, perceived severity, perceived benefits and barriers, cues to action, and self-efficacy. Together, these findings illustrate how parental dietary behaviors are influenced not only by practical considerations but also by their beliefs, experiences, perceived risks, and confidence in their ability to implement and maintain dietary changes. Both themes are explained in greater detail below.

2.2.2. Theme 1: Household Dietary Practices Following a CD Diagnosis

Overall, this theme captured a range of dietary modifications following a CD diagnosis in at least one child, particularly in relation to the dietary practices of their unaffected children. These changes varied from complete household dietary restructuring to no reported changes at all. Importantly, these modifications were described at a household level, and parents did not report changes that were directed solely or exclusively at the unaffected child or children.

According to some interviewees, the CD diagnosis constituted a turning point leading many families to make substantial dietary changes; the entire family adopted a gluten-free diet to support the child’s adjustment to the diagnosis and to create a safe and supportive home environment. For some, gluten was completely removed from their household.

“I have made sure that my child feels safe at home... and that means that the eating habits of the whole family have changed; we don’t eat gluten at home.” (PART3, Female, 31 years old)

On the other hand, some parents described gradual shifts towards a more balanced diet. These changes included having breakfast daily, consuming regular meals throughout the day, increasing their intake of fruits and vegetables, nuts, and limiting the consumption of processed foods. As they explained, these changes were the result of a conscious decision and planning, while for others they evolved gradually and became part of their routine.

“We sat down, discussed it and came up with a plan.” (PART9, Female, 45 years old)

Some reported that they adopted a more flexible approach, without making significant changes to the entire family’s diet. Instead of following a completely gluten-free diet as a family, they either prepared meals or chose dishes that were naturally gluten-free, in an effort to make the child diagnosed with CD feel included, while maintaining the family’s usual eating habits. As one interviewee explained:

“Many families choose to follow a gluten-free diet together as a household. We haven’t done that because we don’t believe it’s the best approach for us. Instead, we either prepare separate meals or cook dishes that are naturally gluten-free, making things easier for everyone while also ensuring that the family member with the condition does not feel restricted or excluded.” (PART20, Female, 55 years old)

A few parents described differences in dietary practices solely between the home environment and external settings. As they explained, although strict measures were taken to avoid gluten at home, outside the home they continued to consume food containing gluten, often when the child was absent. This practice was presented as a way of maintaining a sense of “normality” without compromising the child’s safety.

“My husband and I also eat gluten in secret, away from the child...” (PART11, Female, 44 years old)

Finally, a couple of interviewees stated that they had not changed their eating habits at all. Among those parents, some perceived gluten exclusion as a therapeutic necessity for the child with CD, rather than a preventive measure for the entire family, including their unaffected children. Out of these parents, a few said that they did not need to make changes in the dietary habits of the entire family, as the consumption of foods containing gluten, such as pasta and bread, was already limited before the CD diagnosis.

“I eat a little bread, but apart from that, apart from bread, I don’t think we ate any sweets before either.” (PART12, Male, 45 years old)

2.2.3. Theme 2: Factors Influencing Dietary Practices as Reflected in HBM

Parental beliefs and dietary practices were shaped by perceived susceptibility, severity, benefits, barriers, cues to action, and self-efficacy. Data analysis showed that the parental beliefs and dietary practices in the light of CD prevention are shaped by a complex interplay of these factors, that are explained in more detail in the subthemes below.

2.2.3.1. Perceived Susceptibility to a Future CD Diagnosis

Perceived susceptibility to CD in their unaffected children was heterogeneous among participants. Most parents explicitly recognized heredity and genetic predisposition as determining risk factors of CD. At an emotional level, for some the possibility of a future diagnosis for their unaffected children was associated with fear and anxiety and was often accompanied by ongoing vigilance and preventive laboratory testing.

“We had the whole family tested. Of course, there could be another member with a CD, it’s always in the back of our minds, because it can appear at any age. That’s always the first thing that comes to mind.” (PART2, Female, 45 years old)

For others, though, the risk of a future CD diagnosis was perceived in the context of realistic acceptance and controllable uncertainty.

“If it appears in the other children too, okay, I’ll accept it, because they’ve learned to live that way, and so have the other children.” (PART6, Male, 53 years old)

2.2.3.2. Perceived Severity of a Potential CD Diagnosis

The perceived severity of CD varied significantly among the parents and was shaped by personal experiences of diagnosis, experiences of caring for children with the disease, and comparisons with other, more serious or incurable diseases.

Specifically, a few parents expressed concerns about the long-term consequences of non-adherence to the gluten-free diet, which reinforced their perception of CD seriousness over time. Uncertainty about potential asymptomatic intestinal damage remained a key source of concern, and this concern was often extended to fear of a future CD diagnosis within the family, particularly in the unaffected children.

“I think she’ll experience some physical symptoms—some pain, bloating, or discomfort—that will make her think, I really need to pay attention to my body and get some tests done so I can figure out what’s wrong with me.” (PART5, Female, 48 years old)

On the other hand, CD was not perceived as a serious disease by many parents, but as a condition that can be effectively managed through diet and gluten avoidance. The absence of medication, the ability to fully control symptoms through diet adherence, and the perception that it is an incurable disease were key factors that reduced its perceived severity and also alleviated parents’ fear of a new CD diagnosis within the family.

“We didn’t consider it a problem. It’s something that can be treated, and with the right diet, it can have the best results. In other words, it’s not an issue. I don’t consider it a disease. Diseases are considered to be incurable. Now, this is something that can be regulated, and with just a little care, he will try and, later on, possibly for the rest of his life, pay attention to his diet and nothing else.” (PART1, Female, 46 years old)

This thought was further reinforced through comparisons between CD and other chronic or autoimmune conditions, which parents perceived as more burdensome and unpredictable. In this context, CD was often presented as “manageable” or even “mild,” especially when they were accustomed to following a gluten-free diet. Familiarity with the dietary regimen and its gradual integration into daily life contributed to a reduction in the perception of the disease as threatening for their unaffected children.

“Compared to other diseases, such as Crohn’s disease, if you don’t come into contact with that particular food, you’re fine.” (PART3, Female, 31 years old)

However, the perceived severity of CD increased significantly when parents discussed the psychological and social impact of CD on their children’s daily lives. For instance, social isolation and exclusion, hidden or unintentional gluten consumption, the inability to eat spontaneously, reinforced parental perceptions that the disease significantly impacts quality of life. Therefore, the severity of CD was perceived by many as predominantly psychological rather than physical, particularly during adolescence when dietary adherence becomes more challenging. Importantly, these concerns were also closely linked to fear of a potential future diagnosis in their unaffected children.

“Every time she goes out, she has to make sure she can eat something. She has to make sure they have clean utensils, that the ladle doesn’t touch anything with bread on it, that there’s no flour in the area—in other words, that everything is clean. You always have this anxiety when you eat out, because you never know if the other person has actually followed the instructions and if the meal they’re serving you is safe. You learn to go out with a small lunchbox and something in your bag to eat.” (PART16, Female, 54 years old)

2.1.3.3. Perceived Benefits of a Healthy Diet to CD Prevention

Some parents did not perceive any benefit of adopting a healthy diet for CD prevention, whereas others believed that dietary changes could play a preventive role against CD onset in their unaffected children.

In particular, adopting a balanced diet and limiting processed foods were mentioned by most parents as possible practices with a positive impact on physical well-being, but these were not directly linked to CD prevention. As they explained, CD was considered primarily a hereditary disease, meaning that a more balanced diet could not entirely prevent the disease onset.

“I don’t think diet necessarily has an impact; that is, for those of us who eat normally, I believe it is now a matter of heredity and not necessarily diet.” (PART5, Female, 48 years old)

Some other parents were unsure about the benefits of healthy eating to CD prevention. However, even in the absence of strong beliefs about the preventive effectiveness of diet in relation to CD, the adoption of healthy eating practices was associated with a sense of control and uncertainty against any future health uncertainties in their unaffected offspring.

“I suppose that if someone consumes mainly fruits, vegetables, fish, and perhaps white meat—which are considered the most suitable foods for our diet—and avoids foods containing flour or sugar, that diet might be better, healthier. In any case, regardless of whether you have celiac disease or not.” (PART20, Female, 55 years old)

On the other hand, a few parents expressed the belief that adherence to a healthy, Mediterranean style diet could have a preventive effect against CD, either by delaying or preventing its onset in their unaffected children. This approach was characterized by an emphasis on home-prepared meals, minimally processed foods, and balanced eating habits, rather than the strict avoidance of gluten.

“I believe that a Mediterranean diet in general has a lot of power in this area and yes, it can prevent the disease (in my unaffected child).” (PART15, Female, 50 years old)

2.2.3.4. Perceived Barriers to Adopting a Healthy Diet as Prevention to CD

Overall, the perceived barriers to adopting healthy dietary practices emerged as multifactorial and interrelated.

At the family level, especially in cases with more than two children, food diversification and the need to follow a special diet led to tensions, comparisons, and feelings of jealousy among children, making it difficult to engage in healthy dietary practices.

“It definitely took us some time (to adjust) because there was the issue of the other kids, and while I do think it was a benefit that my daughter was young (when she was diagnosed), so I’d give her whatever I was giving her, but on the other hand, the boys were 2 and 3 years older than her, and I couldn’t give one of them, for example, potato chips without her seeing it. Back then, there weren’t any gluten-free potato chips.” (PART18, Female, 45 years old)

The transition to gluten-free products was described as demanding by most. As these participants explained, the challenge emerged both from unfamiliar taste characteristics and from the need for constant vigilance in household practices to prevent contamination. These requirements, combined with the effort to adhere to a healthy diet, increased the need for organization, consistency, and meal preparation—factors that often acted as perceived barriers to adopting and further promoting healthy dietary practices in unaffected children.

“In other words, it wants you to be consistent and organized.” (PART7, Female, 49 years old)

At the same time, the financial cost of the healthier food options was cited as a particularly burdensome factor, especially in the Greek socio-economic context, limiting access to healthier and highly nutritious foods.

“It’s definitely because we’re talking about Greece, I insist on the cost, it’s a very big issue and it’s a very big issue for many people in general to have a healthier diet.” (PART4, Female, 38 years old)

The limited nutritional literacy also hindered some parents’ involvement in healthy eating. Although several acknowledged the abundance of information available online, they were skeptical about its reliability and credibility. As these parents further clarified, the lack of clear guidance from healthcare professionals or official sources further contributed to confusion, complicated decision-making with regards to the feeding practices of their unaffected children. In fact, one parent explained that the burden of making the “right” dietary choices falls disproportionately on the individual or family.

“I generally believe that there is a huge problem and that if there were guidelines in general, we would have help in many areas such as CD, obesity or diabetes prevention.” (PART4, Female, 38 years old)

“There are many groups. They helped me a lot in the beginning, because I was pretty lost. .... But there’s that anxiety—it’s something unfamiliar—so those groups were really helpful ... I just don’t know if there’s any real (reliable) information in there.” (PART19, Female, 54 years old)

Changing habits was also a significant barrier to endorsing a healthy diet. Many parents referred to the power of habit, pointing out that if no immediate benefit or threat is perceived, adopting and promoting different dietary behavior to their unaffected children is unnecessary or ineffective.

“Very difficult. Very difficult in the sense that I don’t see any difference, meaning it wouldn’t affect or change anything in essence for my unaffected child.” (PART1, Female, 46 years old)

2.2.3.5. Cues to Action Promoting Healthy Dietary Changes

All interviewees identified several factors - cues to action- that can facilitate dietary change in the light of future CD prevention in their unaffected children, stemming from both internal processes and external influences.

Many emphasized that a disease diagnosis would serve as a key facilitator of dietary change. The view that major dietary changes are justified primarily in the emergence of a health condition was often cited by most parents.

“I would only change our eating habits if both of my children had been diagnosed with something; I wouldn’t change the way we eat or take precautions for the future just in case something happens.” (PART1, Female, 46 years old)

On the other hand, nutritional guidance from health professionals, such as specialist doctors and dieticians, emerged as a decisive external stimulus for endorsing a healthier diet. Many parents reported that diet recommendations from a specialist could lend credibility and clarity, facilitating decision-making and reducing uncertainty about the importance of healthy eating in preventing a potential CD diagnosis in their unaffected children.

“An expert I would say is the best way (to educate me about healthy eating), but the thing is, you don’t know if the average citizen can go to a nutrition expert...” (PART3, Female, 31 years old)

In addition, some parents pointed out online nutritional information, influence of school environment, and participation in sports activities, as important factors that can facilitate the engagement of the entire family with healthier dietary choices.

“Nowadays, we get much more information about nutrition from the internet.” (PART10, Female, 42 years old)

2.2.3.6. Self-Efficacy to Adopting a Healthy Diet

As most parents explained, self-efficacy, the belief that they could successfully shape their children’s dietary habit, was strengthened by previous experiences of successful behavior change. Parents described how overcoming personal challenges, such as quitting smoking, enhanced their confidence in their ability to implement and sustain healthy dietary practices for their unaffected children. As one participant explained:

“I hope that at some point, just as I quit smoking, I will be able to change our family’s and particularly my (unaffected) child’s dietary habits too.” (PART7, Female, 49 years old)

3. Discussion

The findings of this mixed-methods study highlight how parental perceptions of CD risk and health beliefs shape dietary practices among families with children at increased genetic risk. This study extends current knowledge beyond the observation that parents recognize familial risk but generally do not modify the diet of unaffected children. By focusing on parents with direct experience of CD and applying the Health Belief Model (HBM), we explored the cognitive, emotional, and contextual factors underlying these decisions, including perceived susceptibility, severity, benefits, barriers, cues to action, and self-efficacy. Furthermore, the mixed-methods approach revealed the discrepancy between recognizing diet as important for health and perceiving a gluten-free diet as a preventive strategy for CD, providing deeper insight into the mechanisms shaping parental choices.

In our online survey, parents demonstrated high awareness of the genetic nature of CD, with the majority recognising that their unaffected children may be at increased risk. However, most parents did not implement any dietary changes following a child’s CD diagnosis in order to prevent CD risk in their unaffected children. Extending these findings, the interviews provided a more in-depth understanding of the underlying reasons for this pattern. Specifically, as most interviewees explained, they made dietary modifications mainly for therapeutic purposes and to support the affected child’s adjustment and safety within the home environment rather than as a preventive strategy for their unaffected children. Taken together, these findings suggest that parental dietary decisions are shaped not only by awareness of genetic susceptibility but by parents’ own interpretation of disease risk, severity, and the practical implications of dietary changes within the family context. Our findings are consistent with previous prevention studies in high-risk populations, where recognition of genetic predisposition alone is not sufficient to adopt lifestyle changes [22,23,24].

With regards to the factors predicting behavior change, our quantitative analysis showed that solely the belief in the role of diet in CD prevention was associated with reported dietary changes. However, our qualitative research yielded mixed findings with regards to the perceived role of diet in CD prevention. Most parents recognized the broader contribution of a balanced diet to overall health and well-being and only some attributed a preventative role to a healthy Mediterranean style diet. Similar to this finding, current evidence also suggests that although a healthy diet supports overall well-being it does not reduce the risk of developing CD in genetically predisposed individuals [25,26], while ongoing research is also examining its role in other gastrointestinal diseases [27].

The discrepancy between quantitative and qualitative findings regarding dietary beliefs likely reflects differences in measurement depth. While the survey captured general endorsement of diet’s importance, interviews revealed more nuanced and often skeptical views about its preventive role in CD, suggesting that “belief in diet” may reflect a broader health orientation rather than disease-specific prevention beliefs.

An important insight from the qualitative study is that none of the parents implemented any gluten-related dietary changes as a preventive strategy for CD. Previous research has primarily examined whether the timing and quantity of gluten introduction during infancy influence the risk of developing CD, with observational data suggesting that higher amounts of gluten introduced early in life may be associated with an increased risk of CD [28]. On the other hand, the strongest available evidence comes from the PREVENTCD randomized controlled trial which found no significant effect of gluten quantity on disease development [29]. Overall, this inconsistency in findings has led to updated ESPGHAN guidelines, according to which, gluten may be introduced at any time between four and 12 months of age, as the timing of introduction does not appear to affect the CD risk [26,30].

According to our qualitative findings, perceived CD threat was often experienced as distant or manageable. From a physical perspective, many parents described CD as a manageable chronic condition, given that adherence to a strict gluten-free diet can lead to symptom control. From this perspective, they assessed the severity of a potential future CD diagnosis in their unaffected children as low. This result is consistent with previous studies showcasing CD as a chronic but controllable health condition [31]. However, in our study, perceived CD severity was more strongly associated with psychosocial functioning, which, in turn, contributed to the perception that a potential future diagnosis would be burdensome for their unaffected children. As these interviewees explained, the quality of life of children living with CD was often diminished by the social isolation and food-related restrictions their children experienced [32,33,34]. Similar psychosocial challenges have also been widely reported in previous studies [35,36]. For instance, as the results of a qualitative study showed, the quality of life of adolescents with CD was strongly influenced by the need to balance health benefits with the “social sacrifices” imposed by a gluten-free diet. Those adolescents often experienced restrictions in social situations and the constant need to manage food-related interactions [37].

Multiple barriers, including financial constraints, competing household needs, and limited dietary literacy, may hinder the adoption of preventive dietary practices. These results may be particularly relevant in socioeconomically constrained settings, where health literacy might be lower and healthier diets may be perceived as less practical, expensive, or burdensome [38,39]. Importantly, similar barriers have been documented in the literature, where lifestyle modifications are influenced not only by practical limitations but also by social and psychological factors, as well as access to reliable dietary information [40,41,42].

The role of healthcare professionals emerged as an important factor influencing parental confidence and intentions to adopt healthier dietary behaviors, in line with emerging evidence on the expanding role of dietitians in chronic diseases management and counselling [43,44,45]. However, this result appears to contrast with our quantitative evidence, where engagement with healthcare professionals was high, yet did not translate into strong beliefs regarding the role of diet in CD prevention or into widespread implementation of dietary changes within families. In line with past research, this finding suggests that while healthcare professionals’ input may increase awareness, it may not be sufficient on its own to shift preventive beliefs or behavior, particularly when counterbalanced by competing practical and contextual constraints [46,47,48,49].

Self-efficacy was identified as an important factor influencing engagement with healthy behaviors. Parents who had previously experienced successful lifestyle changes in the past showed greater confidence in their ability to maintain healthy practices within their households. This finding is consistent with the self-efficacy theory, according to which previous successful experiences reinforce an individual’s belief in their ability to effectively manage future challenges [50]. Furthermore, self-efficacy has been recognized as a critical factor in maintaining health behaviors and adhering to treatment recommendations in chronic conditions [51].

Overall, the present findings suggest that parental dietary decisions are influenced by a complex interaction between risk perception, beliefs, perceived barriers, family context, and perceived self-efficacy, rather than by genetic risk awareness alone.

This study has several notable strengths. To our knowledge, it is among the first mixed-methods studies in Greece to examine in depth the perceptions and dietary behaviors of parents of children with CD. This design enabled both the quantification of key trends and associations, and a detailed exploration of the cognitive, emotional, and social factors underlying parental perceptions and decisions. The integration of quantitative and qualitative findings enhances the overall interpretive validity and provides a more comprehensive understanding of the phenomenon than either approach alone. In addition, the qualitative component offered insight into underlying mechanisms not easily captured through structured measures, while the quantitative data supported the examination of associations and improved the generalisability of the findings.

However, the study also has certain limitations that should be taken into account when interpreting the results. In the quantitative section, the relatively small sample size may affect the statistical power of the analyses and limit the ability to investigate differences between subgroups (e.g., by gender, age, or socioeconomic status). Moreover, the regression findings should be interpreted with caution due to the relatively small number of outcome events compared with the number of predictors included in the model, which may have resulted in overfitting and unstable estimates. This is reflected in the wide confidence intervals observed for several variables. The sampling method and the characteristics of the parents may introduce selection bias, as the sample appears to include individuals with a high level of education and increased contact with health services, a fact that may influence their knowledge, attitudes, and behaviors. Also, the use of self-reported data through a single questionnaire at one time point may introduce common-method bias. Self-reported measures are also susceptible to social desirability bias, while the cross-sectional design of the study limits causal interpretations. Furthermore, the questionnaire was developed specifically for the purposes of the present study and was not formally psychometrically validated; therefore, the findings should be interpreted with caution.

In the qualitative component, no predetermined sample size was targeted, as there is no universally accepted number for qualitative research [52]. Data collection continued until no substantially new meanings or insights emerged from the interviews, suggesting adequate information power for the study aims. Subgroup differences based on demographic or socioeconomic characteristics were not systematically explored. The analysis was not performed by specific demographic variables, and therefore potential differences between subgroups may not have been captured. Furthermore, the experiences of parents from different socioeconomic or cultural backgrounds, as well as those living in rural or remote areas, may not have been adequately represented. Finally, as is the case in all qualitative studies, the influence of interpretive bias on the part of the researchers cannot be completely ruled out, although systematic analysis and constant comparison of coding limited this risk.

Future research should focus on longitudinal and interventional designs to determine whether targeted nutritional education, behavioral support, and self-efficacy–based interventions may facilitate the translation of risk awareness into sustained dietary behaviors among families of children with CD. Interventional designs to determine incorporating nutritional education, clear dietary guidelines, and self-efficacy enhancement could assess whether the gap between intention and behavior is reduced. In addition, longitudinal qualitative studies could highlight how perceptions and stimuli for action evolve at different stages of the child’s and family’s life. Future studies could also explore more detailed clinical and family-related characteristics, as these factors may influence parental perceptions and dietary practices regarding CD prevention. Additionally, future programs should target healthcare professionals enhancing their ability to provide clear, evidence-based dietary guidance to parents of children with CD. Equipping healthcare professionals with up-to-date nutritional knowledge and effective communication skills can contribute to tackling parental uncertainties and promoting healthy eating habits within the family. This could, in turn, enhance important psychosocial outcomes and encourage families to adopt healthier dietary practices.

4. Materials and Methods

4.1. Study Design

A mixed-methods, convergent parallel design was implemented, whereby the qualitative and quantitative components were conducted simultaneously, analysed separately, and integrated at the interpretation stage. This design allowed for a comprehensive investigation of dietary beliefs, risk perceptions, and prevention attitudes among parents of children with CD by combining the breadth of quantitative data with the depth and contextual understanding provided by qualitative inquiry. Consistent with mixed-methods research recommendations, the two datasets were analysed and presented separately to preserve the unique contributions and methodological integrity of each approach, while their integration during interpretation enabled a more complete understanding of the research questions. This approach facilitated the identification of convergences and divergences between reported beliefs, experiences, and behaviors, thereby strengthening the overall interpretation of findings [53].

For the quantitative part, a structured online questionnaire was completed by 110 parents in Greece between December 2025 and February 2026. The questionnaire collected demographic data and assessed perceived vulnerability, beliefs about heredity, dietary practices and attitudes towards the role of diet in CD prevention.

The qualitative part included semi-structured interviews with parents of children diagnosed with CD, which were conducted during December 2025 and February 2026. The interviews explored in-depth the perceptions, experiences, and dietary practices of the parents

4.2. Inclusion/Exclusion Criteria

Parents were eligible to participate in the survey and interviews if they had at least one child diagnosed with CD during childhood and at least one unaffected child. Additional eligibility criteria included being aged 18 years or older, residing in Greece, and being able to communicate in Greek. No further inclusion or exclusion criteria were applied.

4.3. Procedure & Ethical Approval

This study was approved by the Ethics and Conduct Committee of the University of Thessaly (approval no: 57/1.10.2025; 63/27.02.2026) and was conducted in accordance with the code of ethics, legal regulations, and ethical guidelines set by the University Ethics Committee.

Parents of children with CD were invited to participate in an online survey via social media pages and organizations that support people living with CD (subject to approval by the respective bodies, where required). Before participating, interested parties were informed in detail about the purpose, procedure, and their rights, and provided their consent electronically. The online questionnaire included closed-ended questions about demographic characteristics, perceived vulnerability, beliefs about heredity, dietary practices, and attitudes toward the role of diet in the prevention of CD in their unaffected offspring. Data collection was completely anonymous, and no information that could lead to the identification of participants was obtained. All questionnaire items were fully completed, with no missing data observed.

For the qualitative part of the study, parents of children with CD and unaffected siblings were invited to participate through two channels. Specifically, parents were recruited either through social media pages or through organizations that support people living with CD (subject to approval by the respective bodies, where required). Individuals who met the inclusion criteria were contacted by the research team and informed about the objectives and subject matter of this study. Those who expressed interest were sent the study information sheet by email (which included all the necessary information about the purpose of the study, the potential risks and benefits for participants, the voluntary nature of participation, and confidentiality issues). Subsequently, individual interviews were scheduled and conducted on a day and at a time that was convenient for both the participant and the researcher(s). A consent form was sent out before the interviews for the participants to sign. On the day of the interview, the researchers explained the procedures and purpose of the study in detail and allowed time for participants to ask any questions. The interviews lasted between 30 minutes and one hour. All participants were given the opportunity to pause for questions or leave the interview if they experienced any psychological discomfort. It should be mentioned that all interviews were conducted as planned, without any opt-out requests. No adverse events were recorded during or after the completion of the individual interviews, meaning that the study was completed as originally planned.

Special precautions were taken with regards to the recordings, which were stored securely on encrypted storage media accessible only to the research team in order to ensure confidentiality. The interview data were transcribed verbatim prior to analysis and then anonymized.

4.3. Materials

An online questionnaire (see Supplementary Material) was constructed by the research team, and its content was informed by previously published studies on CD about risk perception and parental attitudes towards the role of diet in CD onset and prevention [54,55,56]. The questionnaire consisted mainly of closed-ended questions. The initial draft was reviewed by members of the research team with expertise in nutrition and public health to assess its content validity, while the questions were assessed for clarity and readability to ensure their appropriateness for the intended population.

The questionnaire collected information on the demographic characteristics of the parents, including gender, age, education level, employment status, marital status and place of residence. At the same time, parents’ thoughts about the likelihood of CD occurrence in their unaffected children were examined. Parental attitudes towards this statement were recorded using a five-point Likert scale (1 = “Strongly disagree” to 5 = “Strongly agree”). It was also explored whether parents had discussed with a healthcare professional the likelihood of CD occurrence or the role of diet in its occurrence and/or prevention in unaffected children. Those who responded affirmatively were asked to indicate the specialty of the healthcare professional. Finally, questions addressed beliefs about the role of diet in CD prevention and about any dietary modifications undertaken to minimize CD risk in unaffected children.

A semi-structured topic guide was developed for the interviews, which included ten open-ended questions (Table 7). The questions explored parents’ perceptions and experiences regarding the diagnosis of CD, disease management, and the role of diet in preventing the condition in unaffected children. Where appropriate, supplementary and clarifying questions were used to encourage deeper analysis and clarify issues that arose during the interviews. Before the interviews began, parents signed on the consent form.

4.4. Statistical Analysis

Quantitative data on demographic characteristics, professional consultations and perceptions of parents were presented as absolute (n) and relative (%) frequencies. To investigate the factors associated with dietary changes, a multivariable logistic regression analysis was performed. The model included demographic variables (e.g., age, gender, education, employment status) and perceptions regarding the disease (e.g., belief in genetic risk, professional consultation) as predictors. Odds Ratios (OR) with their corresponding 95% Confidence Intervals (CI) were calculated to estimate the strength of the associations. Statistical significance was set at p < 0.05. All statistical analyses were conducted using Jamovi (Version 2.6.44). Given the exploratory nature of the study, no prior sample size calculation was performed, as the analyses were intended to be hypothesis-generating rather than confirmatory [57].

4.5. Framework Analysis

A deductive method of analysis was applied to the qualitative data, with the aim of identifying, analyzing, and interpreting meanings and thematic units. In this deductive (directed) approach, the analysis began with a theory, which served as a guide for the initial definition of codes [58]. HBM formed the theoretical framework for our analysis. HBM was originally developed in the 1950s and is a widely used conceptual framework in health behavior research. It provides an understanding of the processes that support both the adoption and maintenance of health-related behaviors, while also offering a theoretical basis for the development of health interventions [59].

HBM includes basic structural concepts that predict the likelihood of an individual engaging in behaviors aimed at preventing, detecting, or controlling health problems. These concepts include perceived susceptibility, perceived severity, perceived benefits and barriers, cues to action, and the most recent addition of self-efficacy [60]. A deductive approach was followed, and the main categories were predetermined according to the HBM (perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, and self-efficacy). The data analysis process included the following steps:

Step 1: Identification of relevant theory and pre-existing thematic units. The basic elements of HBM were recorded and used as initial codes.

Step 2: The data were deductively analyzed to identify and classify units of meaning. The pre-existing thematic categories were applied and used as an index for the units of meaning that emerged from the data.

Step 3: Consensus was reached among researchers on the interactions between research questions, codes, and key thematic areas [61]. Furthermore, the researchers agreed that data saturation was achieved, when no new information or themes emerged.

Throughout the analysis process, regular meetings were held between the two researchers (AV, DS) involved in the analysis, who independently coded the data to enhance analyst triangulation and reduce the influence of individual interpretations. Coding decisions, emerging themes, and discrepancies were discussed in detail during iterative review meetings. Any potential disagreement was resolved through discussion and consensus. The researchers maintained detailed notes throughout the analytic process to document coding decisions, theme development, and reflections on the data, thereby providing an audit trail. Ongoing comparison of codes and themes across transcripts facilitated consistency and ensured that interpretations remained grounded in participants’ accounts. Regular discussions also encouraged reflexivity, allowing the researchers to critically examine their assumptions and consider alternative explanations for the findings. These procedures were undertaken to enhance the credibility and trustworthiness of the analysis [62].