The relationship between stress, anxiety, and health literacy in parents of children with chronic gastroenterological diseases: a multi-center cross-sectional study

Abstract

Background

Parents caring for a child with a chronic illness experience a significant psychological burden, which can manifest as increased stress and anxiety. Furthermore, they must tackle the challenge of understanding the complexities of the healthcare system. In such circumstances, adequate health literacy is necessary to communicate efficiently with healthcare professionals and make informed decisions about a child’s care. It also seems that higher health literacy may alleviate the emotional strain faced by such parents. In light of its apparent significance, this study sought to assess the relationship between health literacy and both perceived stress and anxiety for parents of children with chronic gastrointestinal diseases.

Method

A survey was administered using paper-and-pencil interviews at five pediatric centers across major Polish cities from May to December 2023, including a convenience sample of 562 parents of children with chronic gastrointestinal conditions. A self-administered questionnaire comprising 84 items was utilized. The instrument integrated validated measures for assessing health and e-health literacy, perceived stress, and anxiety. The hierarchical linear regression models were developed for scores reflecting the intensity of perceived stress and anxiety. The independent variables included in the models were health and e-health literacy scores, sociodemographics, Internet and social media use, as well as the child's age, disease duration, number of hospitalizations, and the use of emergency services in the preceding year.

Results

The analysis results confirmed that parents with problematic, inadequate, or undetermined health literacy experienced higher stress than those with sufficient health literacy (B, 95%CI: 3.29, 0.94 – 5.64; 2.30, 0.88 – 3.73, and 1.74, 0.14 – 3.34, respectively). Furthermore, lower health literacy was also a significant predictor of higher anxiety (B, 95%CI: 3.37, 1.28 – 5.45, 1.75, 0.49 – 3.01, and 2.14, 0.72 – 3.56, respectively).

Conclusions

Our study confirmed that health literacy is an important factor related to the level of perceived stress and anxiety experienced by parents of children with chronic gastrointestinal diseases. Interventions to develop health literacy in this group can result in improved well-being.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-025-24329-0.

Background

Psychological burden on parents of children with chronic conditions

The parents of children with chronic diseases experience a profound psychological burden resulting from the emotional, physical, and social challenges they face [1]. Caring for a child with a long-term condition requires sustained vigilance and emotional resilience. What’s more, these parents must develop the ability to understand and navigate the healthcare system to obtain the best care for their children. These challenges can culminate in overwhelming stress and emotional strain. Many parents feel helpless or powerless as they are confronted with their child’s condition [2, 3]. Some may experience disappointment, convinced they have lost the chance for their child's and family's normal life. The progression of the child’s disease is a source of continuous fear about the child’s uncertain status and prognosis. The frequent necessary medical appointments, hospitalizations, and medical interventions, as well as the disease exacerbations typical for many chronic diseases, all augment parents’ stress and anxiety [4]. Continuous stress leads to symptoms of burnout, exacerbates anxiety and depression, and results in a lower quality of family life [5].

The psychological status of parents of children suffering from chronic diseases has been extensively studied. Many studies have shown that parents of children born with congenital heart disease experience profound stress from the moment of diagnosis [6–10]. Easterlin et al. reported that parents of children with inflammatory bowel disease (IBD) struggle to adjust to the child’s status [11]. Most of the guardians of children with IBD need about 2 years to adjust to their child’s disease after the diagnosis. Zengin et al. (2018) reported increased anxiety, but still below a clinical level, in parents of children with chronic kidney disease [12].

Wauters et al. found that during the COVID-19 pandemic, parents of children with chronic illnesses reported higher levels of anxiety, compared to parents in the reference group [13]. A study by Boettcher et al. indicated that the mental health scores of about 30% of mothers and 13% of fathers of children requiring mechanical ventilation reached levels of clinical concern [14]. Several other authors have also reported high levels of caregiver burden and impaired mental health in parents of children with rare diseases [15–19].

The meta-analysis conducted by Cousino & Hazen revealed that overall parenting stress was significantly heightened among the caregivers of children with chronic illness compared to those caring for healthy children [20]. Additionally, a more recent review performed by Cohn et al. found that parents of children with chronic illnesses were considerably more likely to meet the criteria of anxiety and clinical depression than parents in the control group [21]. Furthermore, Pinquart’s meta-analysis indicated that the elevation of anxiety symptoms in parents of ill children varied significantly based on the specific disease, the duration since active treatment, and the age of the child [22].

In 2006, Mussatto developed a framework that delineates the factors influencing a parent’s perception of the initial stress of a child being diagnosed with a chronic disease, drawing from a review of theoretical approaches to child and family adaptation to illness [23]. These factors encompassed previous experience with stress, the child’s illness-related factors, parental anxiety, and the family's developmental stage. Following this, Lisanti introduced a model specifically addressing parent stress and resilience in the case of a child’s congenital heart disease [6]. Among the various stressors identified for parents, Lisanti emphasized the impact of parental knowledge, or the absence thereof, regarding the child’s health and disease.

The use of the Internet and social media plays an increasingly important role in shaping the experiences of parents caring for children [24]. Digital platforms often serve as key sources of information, emotional support, and community exchange, helping parents cope with uncertainty and everyday caregiving challenges [25]. Online peer support groups and health-related forums can mitigate feelings of isolation, reduce psychological distress, and enhance perceived self-efficacy in managing a child’s condition [25]. At the same time, the constant exposure to medical content, other parents’ stories, and sometimes conflicting advice may intensify anxiety or reinforce the sense of burden [24, 26]. In light of this, considering parents’ use of the Internet and social media is justified when analyzing the determinants of mental health among caregivers of children with chronic illnesses, as digital engagement may shape both perceived stress levels and coping mechanisms.

The role of health literacy in parents of ill children

The concept of health literacy (HL) originated in the 1970 s when Simmonds introduced the term in the context of evaluating health education interventions. HL is defined as the motivation, knowledge, and ability to find, understand, assess, and apply health information to make informed decisions about health [27]. Over the past few decades, extensive research has demonstrated a relationship between HL and various health outcomes. A systematic review published by Berkman et al. in 2011 established that limited HL is linked to detrimental health behaviors and reduced adherence to physician recommendations [28]. People with lower HL tend to overutilize emergency health services while simultaneously underutilizing preventive services, such as immunizations against common infectious diseases and cancer screening procedures [28]. The set of skills that parallels health literacy but relates specifically to digital health information is known as e-health literacy (eHL) [29].

In recent years, the impact of HL on parents of children with illnesses has been thoroughly examined. Burr & Tannen demonstrated that high parental HL promotes positive health behaviors in children, including improved nutrition and increased physical activity [30]. Cheng et al. confirmed a connection between low HL and a range of pediatric health risks, such as parent depression or insufficient first-aid knowledge regarding choking [31]. Additional research has highlighted a significant relationship between the HL of parents and the comprehension of key concepts related to the treatment of a child with a new diagnosis of an oncological disease [32]. Selezneva et al. found that parents of children with chronic diseases who possess higher HL reported greater satisfaction with care [33].

Several authors have investigated parents’ utilization of health services depending on their HL. Menekşe et al. observed a positive correlation between parental HL and the ability to manage fever in a child effectively [34]. Ueki et al. indicated that inadequate HL among parents was associated with an increased likelihood of unnecessary emergency service use for children with acute illnesses [35]. Morrison et al. established an association between low caregiver HL and an increased frequency of visits to pediatric emergency departments for non-urgent matters. [36]. Parents with low HL were prone to misinterpreting the seriousness of their child’s condition. Ricardo et al. explored the relationship between parental HL and the progression of chronic kidney disease in children [37]. They found that inadequate HL among parents was linked to poorer health outcomes for their children, leading to an increased incidence of hospitalizations.

Systematic reviews conducted by Keim-Malpass et al. in 2015 [38] and Zaidman et al. in 2023 [39] corroborated the notion that children of parents with low HL experienced worse health outcomes, whereas the authors of the most recent review proposed that disease-specific knowledge might partially alleviate the impact of low parental HL.

The association between HL and the mental health of parents of ill children has been less extensively explored. A recent mixed-methods study conducted by Çaka found that mothers with higher overall HL experienced lower caregiver burden [40]. The authors hypothesized that regular interactions with healthcare professionals enhanced HL, subsequently alleviating the burden of care. Only a limited number of studies have examined the influence of HL on the psychological well-being of parents of children suffering from chronic conditions, such as asthma [41] or those awaiting pediatric surgery [42, 43] or dental procedures [44].

Although some studies have examined health literacy in children and adolescents with chronic gastrointestinal conditions, particularly those with inflammatory bowel disease [45–48], the HL of parents caring for such children has received far less attention. Parents of children with chronic gastrointestinal disorders face distinct and multifaceted caregiving challenges that set them apart from caregivers of children with other chronic conditions. Such disorders are often characterized by fluctuating, invisible symptoms such as pain, diarrhea, or severe constipation, which can be difficult to predict or control. Unlike more clearly defined conditions with stable treatment regimens, these disorders frequently require complex dietary management, constant symptom monitoring, and ongoing adjustments in care. This unpredictability and lack of visible indicators may contribute to heightened parental anxiety and difficulties in securing adequate support. Moreover, the stigma associated with bowel-related symptoms experienced by a child can lead to social withdrawal and isolation, further increasing the emotional burden of the family. Despite these challenges, the psychosocial experiences of these parents remain understudied, and there is a noticeable lack of research exploring the role of HL in this specific caregiver population.

Our study aims to investigate the relationship between the psychological well-being of parents with children suffering from chronic gastrointestinal conditions and their HL level, utilizing data from a multi-center survey conducted in Poland. We hypothesized that lower HL would be linked with increased stress and anxiety levels in these parents.

Methods

Survey

The survey, conducted using a paper-and-pencil interviewing technique, was administered from May to December 2023 at five University pediatric centers that provide care to children with gastrointestinal disorders. Participating centers were located in major cities in Poland, including Warszawa, Kraków, Katowice, Wrocław, and Białystok. Team members invited parents to participate in the study during the child’s ambulatory visits or hospitalization at the healthcare center. Inclusion criteria included informed consent, a child under the age of 18, and current treatment at a participating medical center. Parents of children with chronic illness symptoms lasting less than six months were excluded.

Ultimately, the survey was conducted among a convenience sample of 562 parents of children with chronic conditions. Assuming a target population of over 1 million parents caring for children with chronic diseases, a 95% confidence level, and a 50% fraction, the sampling error for such a study sample was approximately 4.1%. Even assuming that the population of parents of children with chronic gastrointestinal diseases represents less than one-tenth of the overall population of parents of children with chronic conditions, the sampling error would not change significantly.

The study received the consent of the Bioethical Committee of Jagiellonian University (Decision No. 1072.6120.244.2019 with amendments). Before participating in the survey, respondents were informed about its purpose. Informed consent was obtained from those who agreed to complete a self-administered questionnaire.

Questionnaire

The questionnaire used in the survey consisted of 84 individual items. It included the 16-item European Health Literacy Survey Questionnaire (HLS-EU-Q16)[49], the 10-item e-Health Literacy Scale (eHEALS) [50, 51], the 10-item Perceived Stress Scale (PSS-10) [52, 53], and the 7-item Generalized Anxiety Disorder scale (GAD-7) [54]. The satisfaction with the care delivered to the child was assessed using a 10-item scale consisting of questions developed based on a literature review and instruments used in various aspects of pediatric care.

Instruments

HLS-EU-Q16

The questionnaire was created by a Consortium participating in the European Health Literacy Survey (EHLS) Project [55, 56]. It is an abbreviated version of the original 47-item basic questionnaire. Survey participants are required to self-evaluate their ability to manage specific tasks related to health information. The overall HL score was calculated according to the guidelines established by the EHLS Project team. Responses to individual items of ‘very difficult’ and ‘difficult’ were assigned a value of 0, while ‘fairly easy’ or ‘very easy’ were valued at 1. The aggregate score ranges from 0 to 16. Responses of ‘difficult to say/not applicable’ were treated as missing data. If the number of missing values exceeded 2, the total score was not calculated. The HL scores were classified into four categories: ‘sufficient’ for scores greater than 12, ‘problematic’ for scores between 9 and 12, ‘inadequate’ for scores below 9, and ‘undetermined’ when the score could not be calculated due to an excessive number of missing values. The Cronbach α coefficient of the HLS-EU-Q16 in our sample was 0.88.

eHEALS

The eHEALS tool consists of 8 items asking about individual’s self-reported perceived skills in finding, understanding, and applying health-related information available from electronic sources [29, 51]. The respondents answer using a 5-point Likert scale from “I decidedly do not agree” to “I decidedly agree” with a neutral response in the middle. After converting the responses to numerical values from 1 to 5, the total score ranges from 8 to 40. A higher score indicates a greater self-perceived ability to locate, evaluate, and use electronic health information. The scale demonstrated high internal consistency (Cronbach α coefficient = 0.90).

PSS-10

The PSS-10 instrument is utilized to evaluate the degree of stress experienced in an individual’s life [52, 57]. It comprises a series of items that inquire about the thoughts and feelings encountered over the preceding month. It reflects the extent to which respondents perceived their lives as unpredictable, uncontrollable, and overloaded. The respondents respond to 10 items using a 5-point scale that ranges from "never" to "very often." Certain items are framed positively and necessitate reverse scoring in the calculation of the total score. The overall score ranges from 0 to 40, with higher scores indicating a greater level of perceived stress. In our sample, the PSS-10) demonstrated a Cronbach’s alpha of 0.82, indicating high internal consistency.

GAD-7

The GAD-7 tool is a self-administered scale designed for the screening of symptoms associated with generalized anxiety disorder [54, 58]. It also serves to quantify the severity of anxiety symptoms. This instrument consists of seven items that reflect symptoms of anxiety experienced over the preceding two weeks. Responses are recorded on a 4-point scale ranging from “not at all” to “nearly every day,” with corresponding values ranging from 0 to 3. The total score can be between 0 and 21. A total score ranging from 0 to 4 indicates minimal anxiety, 5 to 9 signifies mild anxiety, 10 to 14 reflects moderate anxiety, and a score from 15 to 21 denotes severe anxiety. The Cronbach α coefficient in our sample for GAD-7 scale was 0.92.

Internet and social media use

Internet use was assessed with a question asking how much time the respondent spends online on a typical day. Response options included: ≤ 30, 31–45, 46–60, 61–90, and > 90 min. Participants were also asked how much time they spend daily on social media, with response options: < 15, 15–30, and > 30 min.

Variables characterizing the child and the disease course

Respondents reported the child’s age (in years), the duration of the illness (in years), and whether the child had been diagnosed with inflammatory bowel disease (yes/no). They were also asked about the use of emergency services in the past year, with response options of 0, 1, or > 1 visits, as well as the number of hospitalizations in the past year, with the same response options: 0, 1, or > 1.

Sociodemographic variables

Respondents were asked to report their age and sex, as well as their education level, with four response options: lower than secondary, secondary, postsecondary non-university, and university level. Vocational status was assessed with the following options: employed, entrepreneur or farmer, unemployed or working part-time, and other. Place of residence was categorized into six groups: rural area, town with fewer than 10,000 inhabitants, town of 10,000–100,000, city of 100,000–500,000, and city with more than 500,000 inhabitants. Respondents also indicated the monthly net income per household member, with response options: ≤ 1500 PLN, 1501–2000 PLN, 2001–3000 PLN, > 3000 PLN, and “prefer not to answer.

Statistical analysis

The statistical analysis was performed using IBM SPSS v.29 software (IBM Corp., Armonk, NY, USA). Means and standard deviations were calculated for continuous numerical variables, while absolute and relative frequencies were computed for categorical variables. Hierarchical linear regression analysis was conducted to identify predictors of perceived stress and anxiety. Independent variables were entered into the models in four successive blocks to assess their incremental contribution to the explained variance. In the first block, sociodemographic variables (age, sex, education, vocational status, place of residence, and household income) were included. The second block introduced variables related to Internet and social media use. In the third block, we added variables characterizing the child and the course of disease (child’s age, duration of the disease, presence of inflammatory bowel disease, hospitalizations, and emergency service use in the preceding year). In the final block, health literacy and e-health literacy scores were entered. At each step, changes in R² (ΔR²) and the corresponding F-statistics were assessed to determine the contribution of the added predictors. The multicollinearity of variables included in the models was assessed with the variance inflation factor (VIF) and tolerance. Unstandardized regression coefficients (B), standard errors (SE), standardized regression coefficients (β), 95% confidence intervals (95%CI), and p-values were reported for the independent variables included in the regression models. P-values below 0.05 were deemed statistically significant.

Results

The characteristics of the study sample

The survey was ultimately administered to a sample of 562 parents, of whom 82.4% were women (n = 463). A total of 57% (n = 320) of the participants had attained a university-level education. Among the respondents, 37.9% (n = 213) resided in urban areas with populations exceeding 100,000 inhabitants, while 34.0% (n = 191) lived in rural areas. The average age of the respondents was 42.0 years (SD = 5.8). Parents exhibiting sufficient HL constituted 61.7% (n = 347) of the sample, whereas those with problematic HL represented 5.5% (n = 31). The mean eHL score among participating parents was 28.5 (SD = 5.0), the mean PSS-10 score was 18.7.4 (SD = 5.8), and the mean GAD-7 score was 6.7 (SD = 5.2).

The average age of children with chronic conditions was 12.4 years (SD = 4.1). Parents of children diagnosed with IBD comprised 66.0% (n = 371) of the study sample. Other frequent chronic conditions diagnosed in children included celiac disease at 13.9% (n = 78) and hepatic diseases at 5.5% (n = 31). Additionally, other gastrointestinal diseases were diagnosed in 21.7% (n = 122) of the children. A considerable number of these children also suffered from additional conditions (22.6%, n = 127), such as bronchial asthma (6.2%, n = 35), atopic dermatitis (6.6%, n = 37), cardiovascular diseases (2.5%, n = 14), epilepsy (2.7%, n = 15), and psychiatric diseases (2.1%, n = 12). The comprehensive characteristics of the study sample are detailed in Table 1.

Table 1.

Characteristics of the study sample

Variable	Categories	%	n
Sex	male	17.6	99
	female	82.4	463
Marital status	married	85.4	480
	other	14.6	82
Education	lower than secondary	13.7	77
	secondary	21.2	119
	postsecondary non-university	8.0	45
	university	57.0	320
Vocational status	employee	51.8	291
	entrepreneur or farmer	17.8	100
	unemployed or a part-time job	8.9	50
	other	21.5	121
Place of residence	rural	34.0	191
	urban < 10.000	7.5	42
	urban 10.000–100.000	20.6	116
	urban 100.000–500.000	16.5	93
	urban > 500.000	21.4	120
Net monthly income per household member	≤ 1500 PLN	18.7	86
	1501–2000 PLN	21.9	101
	2001–3000 PLN	24.1	111
	> 3000 PLN	16.5	76
	refusal to reveal	18.9	87
Internet daily use	≤ 30 min	17.6	99
	31–45 min	14.2	80
	46–60 min	21.5	121
	61–90 min	19.0	107
	> 90 min	27.6	155
Social media daily use	< 15 min	36.8	196
	15–30 min	29.5	157
	> 30 min	33.6	179
Inflammatory bowel disease	No	34.0	191
	Yes	66.0	371
Emergency services in the preceding 12 months	No use	62.1	349
	1	18.7	105
	> 1	19.2	108
Hospitalization of the child in the preceding 12 months	no	52.8	297
	1	22.6	127
	> 1	24.6	138
Health literacy	problematic	5.5	31
	inadequate	17.8	100
	sufficient	61.7	347
	undetermined	14.9	84

Determinants of perceived stress

A hierarchical linear regression analysis was conducted to examine the predictors of perceived stress. Four blocks of variables were entered sequentially into the model. In the first step, sociodemographic variables explained 10.3% of the variance in perceived stress (R² = 0.103, ΔR² = 0.103, F(17, 415) = 2.811, p < 0.001). The second block, including Internet and social media use, led to a small, non-significant increase in explained variance (ΔR² = 0.025, F change (6, 409) = 1.916, p = 0.077). In the third step, variables describing the child and disease characteristics (age, disease duration, presence of inflammatory bowel disease, use of emergency services, and hospitalizations) also added a modest but non-significant contribution (ΔR² = 0.025, F(7, 402) = 1.718, p = 0.103). Finally, the inclusion of health literacy and e-health literacy in the fourth block significantly improved the model, explaining an additional 5.3% of variance (ΔR² = 0.053, F(4, 398) = 6.673, p < 0.001), bringing the total explained variance to 20.6% (R² = 0.206).

In the final model, significant associations were found between perceived stress and parents’ HL, sex, vocational status, the use of social media and hospitalization in the preceding year. Parents with problematic, inadequate, or undetermined HL demonstrated a higher perceived stress compared to those with sufficient HL (B, 95%CI: 3.29, 0.94—5.64, 2.30, 0.88—3.73, and 1.74, 0.14–3.34, respectively). Perceived stress was also significantly higher among females relative to males (B, 95%CI: 2.55, 1.15–3.96). Entrepreneurs and farmers experienced significantly lower stress than employees (B, 95%CI: −1.43, −2.84 – −0.02). No significant associations were observed between perceived stress and the child’s age, disease duration, presence of IBD, or recent use of emergency services. However, more than one hospitalization of a child in the preceding year was associated with significantly higher perceived stress in parents (B, 95%CI: 1.91, 0.40–3.41). Internet use intensity was not a significant predictor of stress levels; however, more frequent use of social media was associated with higher perceived stress (B, 95%CI: 1.77, 0.38–3.15 for > 30 min. vs. < 15 min. daily). A summary of the hierarchical regression results for perceived stress is presented in Table 2, and full analysis is provided in Table S1 in the supplementary materials.

Table 2.

Hierarchical linear regression modeling of the PSS-10 scores

Variable	Categories of variables	Model 1 ß	Model 2 ß	Model 3 ß	Model 4 ß
Age of parent		−0.07	−0.05	< 0.001	−0.003
Sex	male#
	female	0.16**	0.16**	0.16**	0.17***
Marital status	married#
	other	0.11*	0.10*	0.11*	0.09
Education	sec.#
	lower than sec	−0.06	−0.06	−0.07	−0.06
	postsec. non university	−0.07	−0.06	−0.06	−0.03
	university	0.04	0.03	0.01	0.04
Vocational status	employee#
	entrepreneur or farmer	−0.11*	−0.11*	−0.10*	−0.10*
	unemployed or part-time job	0.08	0.08	0.06	0.06
	other	−0.04	−0.03	−0.05	−0.05
Place of residence	rural#
	urban < 10.000	0.001	0.001	−0.01	0.01
	urban 10.000–100.000	0.05	0.04	0.02	0.02
	urban 100.000–500.000	0.04	0.03	0.02	0.03
	urban > 500.000	−0.05	−0.07	−0.08	−0.07
Income	2001–3000 PLN#
	≤ 1500 PLN	0.11	0.11	0.10	0.07
	1501–2000 PLN	0.03	0.04	0.03	0.01
	> 3000 PLN	−0.06	−0.07	−0.07	−0.06
	refusal	0.03	0.03	0.02	0.01
Internet media daily use	> 90 min.#
	≤ 30 min		−0.08	−0.06	−0.09
	31–45 min		0.01	−0.004	0.003
	46–60 min		−0.02	−0.03	−0.05
	61–90 min		−0.003	−0.001	−0.01
Social media daily use	< 15 min.#
	15–30		0.04	0.04	0.05
	> 30 min		0.13*	0.13*	0.14*
Age of a child				−0.07	−0.06
Duration of disease				< 0.001	−0.003
IBD	No
	Yes			−0.09	−0.08
Emergency services	no use#
	1			0.03	0.01
	> 1			−0.01	−0.03
Hospitalizations	no#
	1			0.08	0.09
	> 1			0.14*	0.14*
eHL					−0.09
HL	sufficient#
	problematic				0.13**
	inadequate				0.15**
	undetermined				0.11*
R2		0.103	0.128	0.153	0.21
DR2		0.103***	0.025	0.025	0.053***
F (df1, df2)		2.81 (17, 415)	1.92 (6, 409)	1.72 (7, 402)	6.67 (4, 398)

Abbreviations: PSS perceived stress scale, eHL e-health literacy, HL health literacy, sec. secondary, postsec. postsecondary, min. minutes, R² coefficient of determination, ΔR change of R², # reference category, F test for the change in R²

^*−p < 0.05

^**−p < 0.01

^***−p < 0.001

To illustrate the effect size, we compared mean levels of perceived stress across the four HL categories. A Kruskal–Wallis test indicated significant differences in perceived stress (H = 33.77, p < 0.001) depending on HL category. Post hoc comparisons showed that parents with sufficient HL reported significantly lower levels of perceived stress compared to those with problematic and inadequate levels of HL (mean [SD]:17.71 [5.64] vs. 21.94 [5.34] and 20.71 [5.69], respectively; p < 0.05 for both comparisons). Parents with undetermined HL also showed elevated stress levels (mean [SD]: 19.14 [5.77]) compared to those with sufficient HL, but this difference did not reach statistical significance. Cohen’s d values [59] indicated a large effect size for the difference in perceived stress between parents with sufficient and problematic HL (d = 0.75), and a moderate effect size for the difference between those with sufficient and inadequate HL (d = 0.51). Mean values with standard deviations (SD) are presented in Fig. 1.

Fig. 1.

Mean Perceived Stress Scale (PSS) score by health literacy level

Determinants of generalized anxiety

A hierarchical linear regression was also conducted for parental anxiety using the same four-block model structure as in the analysis of perceived stress. In the first step, sociodemographic variables accounted for 8.7% of the variance (R² = 0.087, ΔR² = 0.087, F (17, 415) = 2.32, p < 0.001). The second block, including Internet and social media use, did not significantly improve the model (ΔR² = 0.015, F (6, 409) = 1.13, p = 0.347). In the third step, child- and disease-related variables led to a modest but statistically significant increase in explained variance (ΔR² = 0.036, F (7, 402) = 2.40, p = 0.021). The final block, introducing health literacy and e-health literacy, significantly improved the model (ΔR² = 0.049, F (4, 398) = 5.99, p < 0.001), yielding a total explained variance of 18.7% (R² = 0.187).

In the final step of the hierarchical regression model, GAD-7 scores were significantly associated with HL, parents’ sex, and social media usage (Table 3). Higher levels of generalized anxiety were observed among parents with problematic, inadequate, or undetermined HL compared to those with sufficient HL (B, 95%CI: 3.37, 1.28–5.45, 1.75, 0.49–3.01, and 2.14, 0.72–3.56, respectively). Additionally, female respondents reported significantly higher GAD-7 scores compared to males (B, 95%CI: 2.11, 0.87–3.36). More frequent social media use was also a significant predictor of higher anxiety levels, with parents using social media for more than 30 min daily reporting higher GAD-7 scores compared to those using it for less than 15 min daily (B, 95%CI: 1.35, 0.12–2.58). A summary of the hierarchical regression results for anxiety is presented in Table 3, and full analysis is provided in Table S2 in the supplementary materials.

Table 3.

Hierarchical linear regression modeling of the GAD-7 scores

Variable	Categories of variables	Model 1 ß	Model 2 ß	Model 3 ß	Model 4 ß
Age of parent		−0.15**	−0.12*	−0.1	−0.10
Sex	male#
	female	0.16**	0.16**	0.15**	0.16**
Marital status	married#
	other	0.08	0.07	0.07	0.04
Education	sec.#
	lower than sec	−0.01	−0.002	−0.03	−0.01
	postsec. non university	0.002	0.01	0.02	0.04
	university	0.02	0.01	0.01	0.03
Vocational status	employee#
	entrepreneur or farmer	−0.10	−0.09	−0.09	−0.09
	unemployed or part-time job	0.01	0.01	−0.01	−0.01
	other	−0.03	−0.02	−0.04	−0.04
Place of residence	rural#
	urban < 10.000	0.06	0.05	0.04	0.06
	urban 10.000–100.000	0.06	0.05	0.04	0.03
	urban 100.000–500.000	0.02	0.01	−0.02	−0.004
	urban > 500.000	−0.04	−0.05	−0.05	−0.05
Income	2001–3000 PLN#
	≤ 1500 PLN	0.09	0.08	0.07	0.05
	1501–2000 PLN	0.06	0.07	0.06	0.04
	> 3000 PLN	−0.02	−0.03	−0.03	−0.03
	refusal	−0.01	−0.01	−0.01	−0.02
Internet media daily use	> 90 min.#
	≤ 30 min		−0.05	−0.03	−0.05
	31–45 min		−0.01	−0.01	−0.01
	46–60 min		−0.02	−0.02	−0.04
	61–90 min		0.01	0.01	0.01
Social media daily use	< 15 min.#
	15–30		0.05	0.05	0.06
	> 30 min		0.11	0.11	0.13*
Age of a child				−0.03	−0.02
Duration of disease				0.04	0.03
IBD	No
	Yes			−0.10	−0.09
Emergency services	no use#
	1			0.10	0.09
	> 1			0.12*	0.10
Hospitalizations	no#
	1			0.05	0.06
	> 1			0.04*	0.04*
eHL					−0.03
HL	sufficient#
	problematic				0.15**
	inadequate				0.13**
	undetermined				0.15**
R2		0.087	0.102	0.138	0.187
DR2		0.087***	0.015	0.036*	0.049***
F(df1, df2)		2.32 (17, 415)	1.13 (6, 409)	2.40 (7, 402)	5.99 (4, 398)

Abbreviations: GAD general anxiety disorder, eHL e-health literacy, HL health literacy, sec. secondary, postsec. postsecondary, min. minutes, R² coefficient of determination, ΔR change of R², # reference category, F test for the change in R²

^*−p < 0.05

^**−p < 0.01

^***−p < 0.001

To further explore the relationship between HL and anxiety, mean GAD-7 scores were compared across the four HL categories. The Kruskal–Wallis test revealed a statistically significant difference in anxiety levels between the groups (H = 35.37, p < 0.001). Post hoc analysis indicated that parents with problematic, inadequate, and undetermined HL reported significantly higher anxiety scores compared to those with sufficient HL (means [SD]: 10.58 [5.88], 8.21 [5.42], and 7.49 [5.22] vs. 5.80 [4.70], respectively, all p < 0.05). Cohen’s d values [59] indicated a large effect size for the difference in GAD-7 scores between parents with sufficient and problematic HL (d = 1.00), a moderate effect size for the difference with inadequate HL (d = 0.50), and a small effect size for the difference with undetermined HL (d = 0.35). Mean values with standard deviations for each HL category are presented in Fig. 2.

Fig. 2.

Mean Generalized Anxiety Disorder (GAD) score by health literacy level

Discussion

We conducted a multi-center, cross-sectional study across five university hospitals, involving a sample of 562 parents of children with chronic gastrointestinal conditions. Our analysis substantiated HL, but not eHL, to be a significant predictor of perceived stress and anxiety. We found that respondents with lower levels of HL exhibited higher levels of perceived stress and anxiety. The existing literature on the relationship between HL and stress or anxiety in parents of children with illnesses is relatively limited; however, the findings from the available studies are consistent with our results [41–44]. Anxiety was noted to occur more frequently among parents participating in pediatric surgery consultations who had limited HL [42]. Additionally, a negative relationship between HL and anxiety was established among parents of children awaiting surgery [43]. Shone et al. identified that lower HL in parents whose children were diagnosed with asthma was an independent predictor of increased worry [41]. Furthermore, Barasuol et al. observed that parents with lower oral HL experienced heightened anxiety prior to their child’s dental treatment [44]. According to a recent study by Çaka, higher HL in mothers of sick children was linked to a reduction in caregiver burden [40].

Our findings indicate that the observed associations between lower HL and elevated levels of stress and anxiety are not only statistically significant but also potentially meaningful from a clinical and practical standpoint. For example, parents with problematic HL had stress scores on average over 3 points higher than those with sufficient HL, and anxiety scores over 3 points higher as well. Given that commonly used psychometric instruments such as the PSS-10 and GAD-7 interpret changes of 2–4 points as minimally to moderately clinically significant [53, 54, 60–62], the differences observed in our study (up to 3.3 points) can be regarded as meaningful. These magnitudes may reflect a transition across clinical thresholds or signal a need for intervention, supporting the relevance of health literacy as a psychological determinant in this population.

Our research indicates that HL plays an important role in shaping the levels of stress and anxiety experienced by parents of children with chronic gastrointestinal conditions. Essential components of HL, including the ability to access reliable health information, understand and utilize medical instructions, and communicate effectively with health providers, may influence the emotional burden associated with caring for a child with a chronic illness. Parents with higher HL tend to exhibit lower stress and anxiety as they are better equipped to navigate the complexities of their child’s condition, understand treatment options, and engage in proactive health management strategies. In contrast, those with limited HL often experience heightened stress due to difficulties in understanding medical terminology, adhering to treatment plans, and making well-informed decisions about their child's care. Our study suggests that interventions designed to improve HL may enhance parents'psychological outcomes, including reduced anxiety and stress. Furthermore, healthcare providers should be encouraged to develop educational programs and resources tailored to the specific needs of these parents, fostering a supportive environment. Enhancing HL among caregivers improves individual well-being and may contribute to better overall management of chronic conditions in children.

The observed association between stress and anxiety and HL, but not eHL, may be explained by several factors. First, general HL involves fundamental skills such as understanding medical information, following treatment instructions, and communicating effectively with healthcare providers. These abilities are directly involved in the day-to-day care of a chronically ill child and may help reduce uncertainty and stress. Second, eHL may be more context-dependent and influenced by access to technology or motivation to seek digital health information, which does not always translate into better emotional coping. Third, parents under higher stress may actively avoid online health content due to information overload or anxiety-provoking content, limiting the potential protective role of eHL. Finally, some parents may rely more on healthcare professionals than on online sources, making their general HL more impactful in day-to-day caregiving than digital competencies.

Our research indicated that mothers exhibited a greater susceptibility to heightened levels of stress and anxiety compared to fathers. Higher levels of anxiety were reported in mothers than in fathers by other authors [63–66]. However, some scholars did not find a significant association between the caregiver’s sex and the occurrence of depressive or anxiety symptoms [67, 68]. In our sample, women were markedly overrepresented, accounting for 82% of all respondents. It is a rather typical finding when the study is conducted in convenience samples of parents accompanying their children in medical facilities. Mothers are more likely than fathers to be present at routine medical visits and to take on the primary caregiving role, which may influence their availability and willingness to participate in research. Nonetheless, the predominance of mothers in the sample may, to some extent, limit the generalizability of the findings to fathers, whose experiences and stress responses may differ and warrant further investigation in more sex-balanced samples. Importantly, in our study, female gender was significantly associated with higher levels of both stress and anxiety, suggesting that the overrepresentation of mothers may have influenced the overall level of psychological burden observed in the sample.

Apart from respondents’ sex, only vocational status was significantly associated with the dependent variables. Entrepreneurs and farmers reported significantly lower levels of stress compared to employees. This finding may be explained by greater autonomy and flexibility associated with self-employment and farming, which could help reduce stress compared to the more rigid and demanding structure of salaried employment. Age of respondents was not a significant predictor of either perceived stress or anxiety. Similarly, Toledano-Toledano & Dominguez-Guedea did not find a significant association between age and parental mental burden [67]. A recent study also found no association between parents’ age and their perception of everyday functioning problems in a sample of caregivers of children with Crohn’s disease in Poland [69]. In contrast, age was a significant predictor in the study by Guilfoyle et al. [70] conducted among parents of children with IBD. The lack of significant age-related differences in stress and anxiety levels may be explained by the narrow age distribution in our sample, with the majority of participants concentrated between 38 and 46 years of age. Our analysis also showed that a parent’s level of education was not significantly associated with stress or anxiety. Similar findings were reported by Senger et al., who found no significant association between parental education and stress levels [71]. Guilfoyle et al. observed that parenting stress was less frequent among parents with higher education compared to those with lower education; however, this relationship did not reach statistical significance [70]. Likewise, our results did not indicate any significant relationship between household income and levels of stress or anxiety experienced by parents of children with chronic gastrointestinal diseases. In contrast, previous research has identified a negative correlation between income level and the intensity of stress and/or anxiety [71–73]. The lack of association between education level and stress or anxiety, along with the non-significant effect of household income, may indicate limited socioeconomic variation within the sample or point to the greater influence of other factors, such as health literacy.

The analysis did not reveal a relationship between children’s age and parents’ reported levels of stress and anxiety. This may be because the emotional and practical demands of caring for a child with a chronic gastrointestinal illness remain substantial across all developmental stages. While the nature of caregiving responsibilities may vary, ranging from intensive physical care in early childhood to emotional and educational support in adolescence, the overall burden may be perceived as equally taxing by parents, regardless of the child’s age. A negative correlation between the child’s age and the parent’s stress was established by Senger et al. in a study involving caregivers of children with mitochondrial diseases [71]. Additionally, the meta-analysis conducted by Pinquart confirmed the relationship between the age of children with health conditions and the level of stress experienced by their parents [22]. Interestingly, our research found that the duration of the diseases also did not significantly predict these emotional responses. The findings from other studies remain inconsistent. Cousino & Hazen indicated that increased parenting stress among caregivers of children with chronic illnesses was not associated with the duration of the illness across diverse illness populations [20]. Conversely, a subsequent meta-analysis published by Pinquart indicated a significant relationship between these factors [22].

We applied in the analysis the variables reflecting the use of emergency services and hospitalizations of a child in a preceding year as indirect indicators of the child’s disease severity. More than one hospitalization of a child was significantly associated with higher perceived stress in a parent. More frequent recent hospitalizations may lead to higher perceived stress in parents of children with gastrointestinal diseases due to the emotional and logistical burdens associated with repeated medical care. Each hospitalization can disrupt daily routines and increase feelings of helplessness or uncertainty about the child’s health. In the context of pediatric gastrointestinal disorders, a higher frequency of hospitalizations over the past year can intensify worries about recurring flare-ups, complex dietary management, invasive procedures, and uncertainty surrounding their child’s long-term gastroenterological health [69]. This accumulation of stressors may intensify the parent’s overall perception of stress. Cousino & Hazen also found that higher parenting stress was associated with greater parental responsibility for treatment management, but, simultaneously, it was also associated with poorer psychological adjustment in caregivers [20]. The authors of the review concluded that parenting stress should be a key target for future interventions. Our findings suggest that interventions to increase parents’ HL could result in decreased parenting stress.

Our study did not indicate any differences in reported stress and anxiety between parents of children with IBD and other chronic gastrointestinal diseases. This seems counterintuitive, particularly when considering the severity of IBD and the associated burden faced by both the child and the parents. Previous research has highlighted that parents of children with IBD often grapple with the necessary adjustments to the child’s condition [11]. The complexity of comprehending the child’s illness contributes significantly to the emotional strain experienced by parents [11].

Guilfoyle et al. reported that the presence of parenting stressors among parents caring for children with IBD was comparable to that for parents of children with type 1 diabetes, yet lower than those encountered by parents whose children have other chronic diseases [70]. We believe that the lack of differences in levels of stress and anxiety observed among parents of children with IBD and other diseases in our research may be, at least in part, attributed to the fact that these parents are targeted for intensive education activities and support, particularly within university hospitals in Poland. Other studies have documented varying levels of stress relative to the type of illness experienced by the child. Specifically, Masa’Deh found that parents of children with cancer reported significantly higher stress levels compared to those of children with diabetes, asthma, congenital heart diseases, or cerebral palsy [74].

Several studies indicate that parents of children with chronic diseases frequently utilize social media [26, 75]. Our study revealed that parents who engage more actively on social media report elevated levels of stress and anxiety. Such a relationship was noted by Liu et al. in their examination of caregivers of children with ADHD [75]. Drouin et al. highlighted an increase in anxiety among parents who were active on social media at the onset of the COVID-19 pandemic [76]. Their findings suggest that higher anxiety was linked to social media use for both seeking social support and gathering information. The heightened stress and anxiety experienced by parents who frequently use social media may be largely due to the significant amount of emotional content available on these platforms. Conversely, other research has shown that social media can serve as a valuable source of social support for caregivers, helping them to manage stress [26, 77].

The differences between our findings and those of previous studies regarding the significance of specific predictors of stress and anxiety may be explained by a combination of methodological and contextual factors. Including multiple predictors in the regression models could have introduced suppressor effects or statistical overlap, where one variable absorbs the explanatory power of others, obscuring their individual contributions. Divergences may also arise from differences in sample composition; our study involved parents of children with various chronic gastrointestinal conditions, whereas other studies often focused on other specific illnesses, which may carry distinct emotional and caregiving challenges. The timing and course of the illness, including how long parents have been managing their child’s condition, may influence the role of certain predictors, particularly as families adjust over time. Additionally, cross-study variation may reflect broader contextual factors such as healthcare system characteristics, access to support services, or cultural differences in coping and information-seeking behaviors.

Our findings suggest that integrating targeted HL programs into pediatric chronic care could lead to significant improvements in parental well-being. By equipping parents with the necessary skills to access, understand, and utilize health information effectively, we can empower families to make informed decisions regarding their child’s care. This empowerment should reduce not only feelings of helplessness and anxiety but should also improve overall adherence to treatment protocols, potentially resulting in better health outcomes for their children. Adopting HL-friendly strategies can strengthen family support networks by empowering parents to communicate effectively with healthcare professionals and actively participate in managing their child's chronic condition. Tailored interventions that address specific challenges are particularly important. These could take the form of educational workshops or user-friendly digital platforms, facilitating the efficient dissemination of health information and assisting parents in managing daily responsibilities.

Our findings advocate for a comprehensive approach to pediatric chronic care. Such an approach should integrate interventions that improve HL enhancement into routine interactions between the families of chronically ill children and healthcare providers. The potential benefits include reduced parental stress, optimized disease management, and ultimately, creating a more supportive and informed environment for families facing chronic pediatric conditions.

Limitations

This cross-sectional study, executed across five university hospital centers, presents several limitations that may influence the interpretation of its results. Firstly, the cross-sectional design inherently offers only an overview of the variables at a singular time point, precluding the establishment of causal relationships among the observed factors. For instance, we cannot ascertain the extent to which limited HL contributes to heightened stress and anxiety, nor can we determine how these emotional states might hinder the development of adequate HL. Secondly, the use of a convenience sample raises concerns about selection bias. The marked overrepresentation of women in our sample constitutes a limitation, as it may reduce the ability to fully capture sex-specific differences in psychological responses and health-related behaviors among parents. Participants recruited from university centers may also not accurately represent the broader population of parents caring for children with chronic conditions. These centers often cater to specific demographic or socioeconomic groups, which could distort the findings and restrict the study's generalizability to other populations or areas. Furthermore, relying on self-reported data may introduce recall or response biases, thereby jeopardizing the reliability of the results. In our analysis, we relied only on indirect indicators of the child’s disease severity, such as the use of emergency services. However, we did not include any specific or standardized measure of severity. The severity of the illness may influence the level of mental burden experienced by parents.

It is important to note that our analysis did not account for numerous other factors that may impact the perceived stress and anxiety in parents of children with chronic conditions. Previous research has investigated variables such as marital quality, family functioning, social support networks, sociocultural historical contexts, levels of perceived support, and the severity and activity of the illness [22, 67, 78].

Finally, the study’s exclusive focus on university hospital settings overlooks parents who utilize different healthcare facilities, potentially missing critical variations in stress and anxiety levels. In summary, while the study offers valuable insights, these limitations underscore the need for future research to employ longitudinal designs and more diverse sampling strategies to corroborate and expand upon our findings.

Conclusions

Our study revealed that HL may play a crucial role among factors ameliorating the levels of stress and anxiety experienced by parents of children with chronic medical conditions. These findings have practical implications. Interventions to increase HL should be part of the care programs offered to children with chronic conditions and their parents. Higher HL enhances the capacity of parents to handle the burden of knowing that their child is suffering from chronic conditions. It also seems that HL may improve the ability to tackle everyday responsibilities when taking care of a child and navigating through the complexities of providing and facilitating medical care to manage chronic pediatric conditions.

These findings highlight the importance of addressing HL as a modifiable factor in supporting the mental well-being of parents caring for children with chronic medical conditions. Incorporating HL-focused strategies into routine pediatric care, e.g., providing accessible, clear information and strengthening parent–provider communication, may help reduce parental stress and improve coping. Future research should explore the causal nature of these relationships through longitudinal designs and evaluate the effectiveness of targeted HL interventions in clinical settings. Such efforts could inform the development of comprehensive support programs that empower parents and improve both family and patient outcomes.

Abbreviations

ADHD

Attention deficit hyperactivity disorder

eHEALS

E-Health Literacy Scale

eHL

E-health literacy

GAD-7

7-Item General Anxiety Disorder scale

HL

Health literacy

HLS-EU-Q16

16-Item European Health Literacy Questionnaire

IBD

Inflammatory bowel disease

PSS-10

10-Item Perceived Stress Scale

Authors’ contributions

AP: conceptualization of the study, data curation, formal analysis, investigation, recruitment of participants to the survey, methodology, preparation of the draft of the manuscript, editing of the final version of the manuscript. MD: conceptualization of the study, data curation, formal analysis, methodology, review and editing of the final version of the manuscript. SW: investigation, recruitment of participants to the survey, review of the final version of the manuscript. IM: investigation, recruitment of participants to the survey, review of the final version of the manuscript. GG: investigation, recruitment of participants to the survey, review of the final version of the manuscript. EK: investigation, recruitment of participants to the survey, review of the final version of the manuscript. NS: investigation, recruitment of participants to the survey, review of the final version of the manuscript. KKD: conceptualization of the study, data curation, formal analysis, investigation, recruitment of participants to the survey, methodology, supervision of the study, preparation of the draft of the manuscript, editing of the final version of the manuscript.

Funding

The study was performed without special funding.

Data availability

The dataset analyzed during the current study is available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

The study was conducted in accordance with the Declaration of Helsinki. The Bioethical Committee of Jagiellonian University (Decision No. 1072.6120.244.2019, issued on October 24, 2019, with further amendments) gave consent for the study. The respondents were informed about the study's aims. Informed consent was obtained from all participants of the survey.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.