Felt stigma in youth with disorders of gut-brain interaction: Implications for abdominal pain, sleep, and mood

Introduction

Painful disorders of gut-brain interaction (DGBIs) are estimated to occur in approximately 17.3% of children and adolescents worldwide.¹ DGBIs include multiple gastrointestinal pain-related conditions (functional dyspepsia, irritable bowel syndrome, abdominal migraine, and functional abdominal migraine – not otherwise specified).² DGBIs cannot be fully attributed to an identified structural cause and are typically diagnosed via subjective reports and/or the absence of structural abnormalities or biomarkers.²

Family, friends, teachers, and even healthcare providers often respond with uncertainty and skepticism when a child’s pain is not clearly medically understood.³ As a result, children with DGBIs are prone to felt stigma from others.⁴ Regarding pediatric DGBIs, felt stigma refers to feelings of shame and anticipation of discrimination due to the experience of living with their condition. Felt stigma can prevent someone from discussing their lived experiences and seeking help for any physical or mental health challenges they may encounter.⁵ There is clear evidence for impairments in mood, sleep, and health-related quality of life in children with DGBIs.^6,7 The negative social repercussions of felt stigma (e.g., thwarted belongingness)⁸ may contribute to these impairments and exacerbate pain; however, this has yet to be examined in children with DGBIs.

Previous research by our team conducted in adults with HIV and chronic pain suggests a temporal relationship between stigma, mood, sleep, and pain, such that stigma is associated with lower mood, lower mood is associated with poorer sleep quality, and poorer sleep quality is associated with greater pain severity.⁹ Although not explicitly examined in children with DGBIs, each pathway within the aforementioned sequential mediation model is supported by the pediatric pain literature. In their validation of their Health-related Felt Stigma and Concealment questionnaire, Laird and colleagues (2020) found that felt stigma due to DGBI symptoms was associated with lower mood and greater utilization of mental healthcare services.⁵ Furthermore, the decreased sense of belonging and increased loneliness^10,8 associated with stigma may contribute to an increased risk of depression, which is a known risk factor for the development and maintenance of abdominal pain¹¹. The negative ruminations common in depression are related to greater sleep onset latency,¹² which may also exacerbate other aspects of sleep quality (e.g., total sleep time, daytime sleepiness, sleep satisfaction) that are typically impaired in youth with depression¹³ and DGBIs.¹⁴ Finally, frequent sleep disturbance may contribute to elevated inflammation and altered pain modulation, resulting in greater pain severity.¹⁵

Understanding the mechanism by which stigma is associated with abdominal pain, arguably the most interfering DGBI symptom, may have important implications for optimizing treatment. This study sought to expand on our previous work by confirming whether the same mediation model relating stigma to pain in adults with HIV⁹ applied to children with DGBIs. We hypothesized that greater felt stigma would be associated with greater depressive symptoms, greater depressive symptoms would be associated with greater sleep disturbance, and, finally, greater sleep disturbance would be associated with greater abdominal pain intensity.

Methods

Study Overview

Data were collected between April 2021 and November 2023 as part of a parent study aimed at understanding the biopsychosocial contributors to abdominal pain in youth with DGBIs. Portions of the data obtained from the current sample have been published to address a separate research question.¹⁶ The Institutional Review Board at the University of Alabama at Birmingham (300002719) reviewed and approved all study procedures on March 25, 2019. Participants provided written and verbal informed consent prior to enrollment in the study. This study followed ethical guidelines in accordance with the Declaration of Helsinki.

Participants were recruited from a local pediatric gastroenterology clinic at a university-affiliated children’s hospital. Chart review and physician referral were used to identify potentially eligible patients with DGBI diagnoses. Afterward, these families were approached about the study. Interested caregivers completed an eligibility screening based on the inclusion criteria for the parent study, which included quantitative sensory testing. Eligibility criteria were: 1) Presence of a legal guardian and 2) Caregiver and child can both read and speak English. Additionally, the following were exclusion criteria for the parent study: 1) Diminished cognitive functioning in the child, 2) Known or suspected pregnancy in the child, 3) Cardiovascular disease and/or hypertension in the child, and 4) History of psychiatric problems requiring hospitalization in the 12 months prior to participation.

Youth and their caregivers completed a series of self-report questionnaires either in-person or via HIPAA-compliant Zoom. Each dyad received a $50.00 incentive for participating in the study. Additionally, families that endorsed financial barriers to participation were provided a $25.00 transportation supplement.

Participants

120 youth (i.e., 8–18 years old) and their caregivers participated in the present study. Study physicians verified painful DGBI diagnoses (i.e., functional dyspepsia, irritable bowel syndrome, abdominal migraine, and functional abdominal pain – not otherwise specified) according to Rome IV criteria.² In accordance with these criteria, all participants had normal biopsies from upper and lower GI scopes (i.e., no inflammatory pathologies identified) prior to enrolling in the study.

Measures

Felt Stigma.

Youth completed the Health-Related Felt Stigma and Concealment measure.⁵ This is a 14-item self-report questionnaire that captures individuals’ feelings of being stigmatized due to their GI symptoms (i.e., belly pain, constipation, diarrhea, flatulence/bloating). Respondents rate their agreement with a series of statements (e.g., “I feel bad about myself because of my symptoms”) on a scale from 1 (i.e., “Strongly Disagree”) to 5 (i.e., “Strongly Agree”). A total felt stigma score is calculated by averaging the scores across 9 of the items. The Health-Related Felt Stigma and Concealment Questionnaire has demonstrated good psychometric properties in youth with functional abdominal pain⁵ and good reliability in the current sample despite the inclusion of younger youth.

Depressive and Anxiety Symptoms.

Although depressive symptoms were the focus of the proposed sequential mediation model, anxiety was identified as a potential confound due to its strong associations with mood and stigma.⁵ Consequently, anxiety was included in the model as a covariate. Youth completed the PROMIS Pediatric Depressive and Anxiety Symptoms Short Forms v2.0. Participants rated their agreement with eight statements reflecting various symptoms of depression (e.g., “I felt sad”) and anxiety (e.g., “I felt nervous”) over a 7-day period on a Likert-type scale from 1 (i.e., “Never”) to 5 (i.e., “Almost Always”). Raw scores were converted into T-scores with higher scores indicating greater symptom severity. PROMIS short-forms for the assessment of mental health (e.g., depressive symptoms) have demonstrated good psychometric properties.^17,18

Sleep.

Youth completed the PROMIS Sleep-Related Impairment Short Form 4a. This is a 4-item self-report questionnaire that assesses impairments related to poor sleep quality and/or quantity in children. Respondents rate their agreement with a series of statements (e.g., “I was sleepy during the daytime”) on a Likert-type scale from 1 (i.e., “Never”) to 5 (i.e., “Always”). Raw scores were converted into T scores with higher scores indicating greater levels of sleep-related impairment. The PROMIS pediatric sleep short form has demonstrated good reliability and validity in previous pediatric samples.¹⁹

Pain Intensity.

Youth used a visual analogue scale to provide a 7-day retrospective rating of average abdominal pain intensity. Participants rated their pain on a scale from 0 (i.e., no pain) to 10 (i.e., worst pain imaginable). Retrospective pain rating is a frequently utilized method for capturing pain intensity in youth.²⁰

Statistical Analyses

Data analysis was completed using IBM SPSS Statistical Software (Version 29). Data were evaluated for missingness. Of the 120 participants, only 1 was missing data for depressive symptoms, sleep-related impairments, and abdominal pain severity due to time constraints. Thus, missing data were imputed using Hot Deck imputation²¹, resulting in a complete dataset. Descriptive statistics were reported as percentages for categorical variables and means and standard deviations for continuous variables. Zero-order Pearson correlations were obtained to analyze relationships between health-related felt stigma, depressive symptoms, sleep-related impairments, and abdominal pain severity. Finally, a sequential mediation analysis was conducted using PROCESS²² to ascertain the indirect effect of felt stigma on abdominal pain severity through depressive symptoms and sleep-related impairments, while controlling for age, race, sex, and anxiety symptoms. Due to small sample sizes in multiple racial groups, Race was dummy coded into a binary variable (i.e., White vs non-White) to ensure sufficient power for the analyses. This grouping of minoritized identities is noted as a limitation in the discussion. The sequential mediation analyses used 95% bootstrapped confidence intervals. An alpha level of 0.05 was determined a priori.

Results

Sample Characteristics

The majority of youth participants were of White racial background (74.2%) and female sex assigned at birth (72.5%). Youth predominantly met Rome IV criteria for functional dyspepsia (43.3%) and/or irritable bowel syndrome (23.3%). More detailed demographics and average responses for relevant variables are included in Table 1.

Table 1.

Sociodemographics and participant characteristics.

Variable	Mean (SD) or N (%)	Range of Possible Scores
Age, Years	13.9 (2.4)
Sex Assigned at Birth
Female	87 (72.5%)
Male	33 (27.5%)
Child’s Racea
White	89 (74.2%)
Black	29 (24.2%)
Asian	1 (0.8%)
Multiracial	6 (5.0%)
DGBI Diagnosisa
Functional Dyspepsia	52 (43.3%)
Irritable Bowel Syndrome	45 (37.5%)
Functional Abdominal Pain – Not Otherwise Specified	28 (23.3%)
Abdominal Migraine	3 (2.5%)
Health-Related Felt Stigma	2.21 (0.98)	1 – 5
Depressive Symptoms	52.72 (12.63)	35.2 – 82.3
Anxiety Symptoms	53.63 (12.39)	33.5 – 83.2
Sleep-Related Impairment	60.49 (10.12)	38.3 – 79.6
Abdominal Pain Severity	4.82 (2.52)	0 – 10

^aMultiple categories may be applicable to participants. Thus, percentages do not summate to 100%.

Regarding responses to the health-related felt stigma and concealment questionnaire, 26 (21%) participants scored above the possible midpoint of the felt stigma scale (i.e., score of 3 or “neither agree nor disagree”), indicating that they tended to “agree” or “strongly agree” with statements endorsing felt stigma due to DGBI-related symptoms. The average score on the felt stigma scale was 2.21 (SD = 0.98). Although participants scored an average of 52.72 on depressive symptoms, a total of 41 youth (34.2%) endorsed moderate to severe depressive symptoms (i.e., score > 60).²³ Similarly, participants scored an average of 53.63 on anxiety symptoms, with a total of 42 youth (35.3%) indicating moderate to severe anxiety symptoms (i.e., score > 60).²³ Average reported sleep-related impairment was 60.49 (SD = 10.12), with 72 (60%) of respondents exhibiting moderate to severe impairments (i.e., score > 59).²² Finally, average abdominal pain over a 7-day period was 4.82 (SD = 2.52). According to clinical interpretations of self-reported pain in pediatric populations, 58 participants in the current study (48.3%) indicated at least moderate abdominal pain on average (i.e., score > 6).²⁴

Zero-order Pearson Correlations

Participants who endorsed greater health-related felt stigma also reported more severe depressive symptoms (r = 0.603, p < 0.001), greater sleep-related impairments (r = 0.401, p < 0.001) and worse abdominal pain (r = 0.186, p = 0.042) (Table 2). Additionally, greater depressive symptoms were positively correlated with sleep-related impairments (r = 0.582, p <0.001) and abdominal pain (r = 0.298, p < 0.001). Finally, greater sleep-related impairments were significantly associated with more severe abdominal pain (r = 0.373, p < 0.001). Excluding the relationship between health-related felt stigma and abdominal pain severity, all correlations had a medium to large effect size per conventional guidelines (i.e., small effect corresponds to r =.10, medium effects correspond to r = .30, and large effects correspond to r = .50).²⁵

Table 2.

Correlations Amongst Health-Related Felt Stigma, Depressive Symptoms, Sleep-Related Impairments, and Abdominal Pain Intensity.

Variable	2	3	4
1. Health-Related Felt Stigma	0.603**	0.401**	0.186*
2. Depressive Symptoms	______	0.582**	0.298**
3. Sleep-Related Impairments	______	______	0.373**
4. Abdominal Pain Intensity	______	______	______

^*p<.05

^**p<.001

Sequential Mediation Analysis

A sequential mediation analysis was conducted to understand a potential pathway through which health-related felt stigma might exert an effect on abdominal pain intensity. The full mediation model, with statistically significant paths represented by solid lines, is shown in Figure 1. After controlling for age, race, sex, and anxiety symptoms, there was a significant indirect effect of felt stigma on abdominal pain intensity via depressive symptoms and sleep impairment with a point estimate of 0.061 and a 95% confidence interval of 0.005 to 0.147. More specifically, greater felt stigma was associated with greater depressive symptoms (t = 3.70, p < 0.001). In turn, greater depressive symptoms were associated with greater sleep-related impairment (t = 2.84, p = 0.005). Finally, greater sleep-related impairment was associated with greater abdominal pain severity (t = 2.47, p = 0.015).

Figure 1.

Sequential mediation model demonstrating the indirect relationship between health-related felt stigma and abdominal pain intensity through greater depressive symptoms and sleep impairments. Covariates included sex, age, race, and anxiety symptoms. Solid arrows represent a statistically significant path (p<.05), while dashed arrows represent a statistically nonsignificant path (p≥.05).

Discussion

Although youth with chronic pain reported being stigmatized in qualitative interviews²⁶, the current study contributes important quantitative data to the literature, with 21% of participants endorsing some degree of felt stigma due to their DGBI symptoms. Additionally, little is currently known about the role of stigma in poor mental and physical health symptoms and how it may contribute to worse DGBI outcomes. The present study aimed to answer this question.

Children with DGBIs experience a range of physical and mental health symptoms with varying degrees of severity. Over 1/3 of the sample endorsed moderate to severe depressive symptoms, and over 3/5 of the sample endorsed moderate to severe sleep-related impairment. Finally, approximately 50% of participants endorsed moderate to severe abdominal pain. These findings align with previous research in pediatric DGBIs, which demonstrated higher rates of depressive symptoms,²⁷ sleep impairments,^7,28 and a primary complaint of abdominal pain.^2,28

Preliminary correlations showed that greater reports of felt stigma were positively correlated with depressive symptoms, sleep impairments, and abdominal pain severity. These findings complement prior research in our lab, which demonstrated that stigma is a clinically relevant psychosocial stressor positively associated with clinical pain intensity in children with rheumatic conditions.²⁹ Sequential mediation analyses were conducted to further elucidate the underlying pathways between stigma, mood, and physical symptoms. As hypothesized, stigma was indirectly associated with abdominal pain in youth with DGBIs through worse mood and impaired sleep. These findings suggest one of the possible psychobiological mechanisms underlying DGBIs. In their psychobiological model of DGBIs, Guadagnoli and colleagues³⁰ described how gastrointestinal symptoms (e.g., abdominal pain) may be perceived as threatening. Perceived stigma due to symptoms may further compound this high threat appraisal, resulting in greater attunement to pain. Consequently, youth may be at risk for greater emotional distress, which may result in greater sleep disruptions. The downstream effects of both lower mood and poor sleep¹⁵ may activate the acute stress response, resulting in alterations to gastrointestinal functions, such as gut motility, microbiota, and immune functioning.³¹ Consequently, stigma may indirectly exacerbate abdominal pain in youth with DGBIs.

Stigma should be considered a social determinant of health and addressed as part of the comprehensive treatment of DGBIs. As such, it is important to understand factors that perpetuate stigma. Qualitative interviews of adolescents with chronic pain revealed that explanations of symptoms that favor psychological over physiological causes contributed to patients’ feelings of stigma.²⁸ This is concerning given that accurate depictions of DGBIs should involve both biological and psychosocial factors. Thus, gastroenterologists may be critical in reducing stigma through their framing of the DGBI diagnosis. It may be helpful to differentiate between structural and functional diseases prior to introducing DGBIs. Additionally, clarification that the patient’s pain is real and not “in their head” may also reduce stigma. Inquiring about prior experiences of stigma can also facilitate trust between providers and patients. Further, providers should practice avoiding stigmatizing language (e.g., using the term “neuromodulators” over “antidepressants”). Finally, assessing the patient and family’s understanding of their condition and treatment recommendations may both minimize misconceptions and increase adherence.³² More research on how to educate families without further stigmatizing them is needed.

Additionally, the current study indicates the importance of comprehensive evaluations for DGBIs that include screening for sleep and mood disturbances. Quality of social support may also be considered given the role of perceived social belongingness in perceptions of stigma.⁸ Pediatric psychologists may be beneficial to the DGBI treatment team, as they can assist medical professionals in teaching their patients about DGBI-related pain using the biopsychosocial model, which may help reduce stigma. Additionally, they may aid in providing behavioral interventions to improve mood and sleep, including relaxation strategies (e.g., diaphragmatic breathing or grounding exercises), behavioral activation (i.e., engaging in pleasurable activities despite pain), and challenging pain-related cognitive distortions. These recommendations can be incorporated into provider trainings, screening practices, and clinical workflows to reduce stigma and optimize care in youth with DGBI.

The results of this study should be considered within the context of a few limitations. Of note, the measure of stigma used in this study has not been formally validated in 8–10 year olds. While the reliability in responses was consistent across our sample, this highlights the need for a stigma measure that is validated in younger children. Further, the use of cross-sectional data limits our ability to make causal inferences about the relations between depressive symptoms, stigma, and sleep. Thus, a longitudinal design should be applied to this study’s aims to further evaluate the mechanisms among these variables. Additionally, this study used a subjective measure of sleep-related impairment, and the design would be improved by including additional objective measures of sleep quality (e.g., actigraphy). Another limitation of the current study was the dummy-coding of race into a binary variable due to low representation of certain racial groups. This decision was made to provide sufficient power to run the boot-strapped mediation analysis. While the current sample reflects the racial demographics found in clinical settings, this approach obscures the diverse experiences of minoritized youth. Future studies should consider oversampling minoritized groups to increase the generalizability of findings. Additionally, considerations of intersectionality would contribute greatly to the stigma and pain literature. Finally, while it was necessary to exclude participants with recent (i.e., 12 months) suicidal ideation to ensure participant safety, we may have excluded youth with more severe depressive symptoms. Since depressive symptoms are implicated in the presented sequential model, youth with DGBIs that are experiencing suicidal ideation may be at even higher risk for worse sleep and/or abdominal pain.

Overall, the results of the current study demonstrate the negative health consequences of stigma. While not every child with a DGBI will endorse felt stigma, those that do are at risk for lower mood, greater sleep disturbances, and more intense abdominal pain. Future research is needed to better understand why some youth with DGBIs experience stigma and others do not, as well as to identify resilience factors that may buffer against stigmatization.

Data Availability

The data that support the findings of this study are available from the corresponding author, Tolulope Adetayo, upon reasonable request