Abstract
Abstract
Background: Resilience can effectively improve health outcomes and enhance the quality of life for adolescents with type 1 diabetes (T1D). However, this population is deeply troubled by multi-source stigma, which severely impairs their resilience. Currently, the mechanism by which different sources of stigma affect resilience remains unclear.
Objective: To explore the pathways through which multi-source stigma affects resilience in adolescents with T1D, identify core sources of stigma, and provide a basis for eliminating stigma and improving resilience.
Methods: From July 2022 to July 2024, 364 adolescents with T1D visiting two tertiary hospitals in Nanjing were selected using convenience sampling. Investigations were conducted using the Type 1 Diabetes Stigma Assessment Scale for Adolescents, the Diabetes Quality of Life Scale for Youth, and the Diabetes Strengths and Resilience measure for adolescents. Complex network analysis was performed using R software, and subgroup analysis was conducted based on age.
Results: Among multi-source stigmas, "being perceived as flawed" (1.248), "worrying about negative reactions from others" (1.132), and "exclusion by others" (1.125) had the highest expected influence in the network. Among multi-source stigmas, "worrying about negative reactions from others" and "concealing diabetes" showed the strongest positive correlation in the network ($r=0.562$). Disease concealment behavior was negatively correlated with the "help-seeking" dimension of resilience ($r=-0.098$), while parental overprotection was positively correlated with the "family resources" dimension of resilience ($r=0.007$). The network connectivity in the pre-adolescent group was tighter than that in the late-adolescent group ($S=0.10$, $GS_{pre-adolescence}=10.47$, $GS_{late-adolescence}=10.36$, $P=0.789$).
Conclusion: Public misunderstanding, exclusion by others, and individual anticipated discrimination are key sources of stigma that restrict the development of resilience in adolescents with T1D. Furthermore, patients in the pre-adolescent stage are more susceptible to stigma. Healthcare professionals should identify and eliminate these key sources of stigma.
Full Text
Preamble
A Complex Network Study of Resilience in Adolescents with Type 1 Diabetes Mellitus Based on Multi-source Stigma
Abstract
Objective: To explore the structural characteristics of the resilience network in adolescents with Type 1 Diabetes Mellitus (T1DM) and to analyze the core symptoms of resilience and their relationships with multi-source stigma (self-stigma and enacted stigma).
Methods: A cross-sectional survey was conducted using a convenience sampling method. From March 2022 to January 2023, 215 adolescent T1DM patients from three tertiary hospitals in Henan Province were selected as research subjects. The Resilience Scale for Adolescents (RSCA) and the Type 1 Diabetes Stigma Assessment Scale (DSAS-1) were used for data collection. Network analysis was performed using R software to construct a resilience network and a "stigma-resilience" bridge network. Centrality indices (strength, closeness, and betweenness) and bridge centrality indices (bridge strength) were calculated to identify core nodes and bridge nodes.
Results: In the resilience network, the nodes with the highest centrality were "Goal Planning" (RSCA5) and "Family Support" (RSCA21). The bridge network analysis revealed that "Self-blame and Guilt" (DSAS14) and "Social Exclusion" (DSAS1) were the primary bridge nodes connecting stigma to resilience. Specifically, "Self-blame and Guilt" showed strong negative correlations with "Affective Control" and "Positive Focus."
Conclusion: Goal planning and family support are the core components of resilience in adolescents with T1DM. Multi-source stigma, particularly self-stigma and social exclusion, acts as a critical inhibitor of resilience. Interventions should focus on reducing self-blame and enhancing family support systems to improve the psychological well-being of this population.
Introduction
Type 1 Diabetes Mellitus (T1DM) is one of the most common chronic endocrine diseases in children and adolescents. Due to the requirement for lifelong insulin therapy, frequent blood glucose monitoring, and strict dietary management, adolescent patients face significant physical and psychological challenges. Resilience, defined as the ability to adapt successfully in the face of adversity, plays a crucial role in the psychological health and metabolic control of these patients.
However, the social environment often imposes a "stigma" on T1DM patients due to their need for public insulin injections.
Affiliations
School of Nursing, Nanjing University of Chinese Medicine, Nanjing 210000, Jiangsu Province, China.
Department of Endocrinology, Children's Hospital of Nanjing Medical University, Nanjing, Jiangsu Province; Department of Nursing, The First Affiliated Hospital of Nanjing Medical University, Nanjing, Jiangsu Province; Department of Endocrinology, The First Affiliated Hospital of Nanjing Medical University, Nanjing, Jiangsu Province.
Background
Complex Network Analysis of Resilience in Adolescents with Type 1 Diabetes Based on Multi-sourced Stigma
Psychological resilience can effectively improve health outcomes and enhance the quality of life for adolescents with Type 1 Diabetes (T1D). However, this population is often burdened by multi-sourced stigma, which severely undermines their resilience. Currently, the specific mechanisms through which different sources of stigma affect resilience remain unclear. This study aims to explore the pathways through which stigma impacts psychological resilience in adolescents with T1D and to identify core sources of stigma, providing a basis for interventions to eliminate stigma and improve resilience.
Methods
From July 2022 to July 2024, a convenience sample of 364 adolescents with T1D was recruited from two Grade A tertiary hospitals in Nanjing. Participants were assessed using the Type 1 Diabetes Stigma Assessment Scale for Adolescents, the Diabetes Quality of Life Measure for Youths, and the Diabetes Strengths and Resilience Measure for Adolescents. Complex network analysis was performed using R software, and subgroup analyses were conducted based on age.
Results
Within the multi-sourced stigma network, "being perceived as flawed" (1.248), "worrying about negative reactions from others" (1.132), and "social exclusion" (1.125) demonstrated the highest expected influence. Regarding the correlations between different types of stigma, "worrying about negative reactions" and "concealing diabetes" showed the strongest positive correlation (0.562). Furthermore, disease concealment behavior was negatively correlated with the "help-seeking" dimension of resilience (-0.098), while parental overprotection was positively correlated with the "family resources" dimension of resilience (0.007). Comparison between age groups revealed that the network connectivity in the pre-adolescent group was tighter than that in the late-adolescent group ($S = 0.10$, $M = 10.47$, $L = 10.36$, $p = 0.789$).
Conclusion
Public misunderstanding, social exclusion, and anticipated discrimination are key sources of stigma that restrict the development of psychological resilience in adolescents with T1D. Furthermore, pre-adolescent patients are more susceptible to the distress caused by stigma. Healthcare professionals should identify and target these key sources of stigma to mitigate their impact and foster resilience.
Keywords: Diabetes Mellitus, Type 1; Adolescent; Stigma; Resilience, Psychological; Complex Network Analysis
Author Information
Luo Dan, Associate Professor, Department of Endocrinology, The First Affiliated Hospital with Nanjing Medical University, Nanjing 210000, China.
Introduction
Type 1 diabetes (T1D) is a common chronic disease among adolescents, requiring lifelong management to prevent complications. The prevalence of T1D in Asian adolescents is among the highest in the world, with approximately 56,000 new cases diagnosed annually. However, the disease control rate remains low at only 15.5%, placing a heavy burden on the academic and personal lives of these patients. Research has demonstrated that resilience can effectively improve self-management behaviors, reduce negative emotions, and maintain psychological well-being in adolescents with T1D \cite{3-4}. Resilience refers to an individual's ability to maintain a positive attitude and achieve favorable health outcomes when facing significant challenges or setbacks.
Due to the incurable nature of T1D, its complex management requirements, and the visibility of treatment devices and symptoms, adolescent patients are often deeply troubled by stigma \cite{6-7}. Stigma refers to a series of negative emotional experiences—such as fear, shame, and self-deprecation—resulting from perceived unfair treatment, rejection, discrimination, and blame from others due to the disease itself or its treatment and management processes. A cross-sectional survey revealed that as many as 63.4% of adolescents with T1D have experienced discrimination. Studies have confirmed that stigma severely impairs the psychological health of these patients \cite{10-12}. Therefore, reducing stigma levels and enhancing resilience are of great significance for improving health outcomes and the quality of life for adolescents with T1D.
Adolescents with T1D face multiple sources of stigma, including internal stigma (e.g., fear of discrimination, feeling embarrassed) and external stigma (e.g., discrimination from classmates, over-parenting, and public misunderstanding of diabetes). Research has found that different sources of stigma interact and reinforce one another. However, no current studies have focused on the specific relationships between different sources of stigma in adolescents with T1D, nor on the mechanisms through which multi-source stigma interacts with resilience.
Complex network analysis is a data analysis method that quantifies associations between symptoms and constructs visual networks to reflect their interaction mechanisms \cite{14-16}. In such a network, centrality indices are used to reflect the importance of a specific symptom within the network, helping to identify core symptoms and subsequently determine targets for intervention. This study aims to construct a complex network of resilience in adolescents with T1D and identify the key sources of stigma that influence it, providing an empirical basis for eliminating stigma and enhancing resilience.
Methods
1.1 Participants
Using a convenience sampling method, adolescents with Type 1 Diabetes (T1D) who underwent routine follow-up visits at two tertiary grade-A hospitals in Nanjing between July 2022 and July 2024 were selected as the research subjects.
The inclusion criteria were as follows: (1) diagnosed with T1D; (2) aged 10–19 years (based on standards established by the WHO); (3) a disease duration of no less than 6 months; (4) ability to read Chinese characters and communicate fluently in spoken Chinese; and (5) informed consent provided by both the participants and their parents.
The exclusion criteria were as follows: (1) presence of other serious functional or organic diseases, such as thyroid disease, asthma, or hypertension; (2) complications such as ketoacidosis, severe hypoglycemia, insulinoma, or Cushing's syndrome, which could affect blood glucose monitoring indicators and clinical judgment; and (3) a history of psychiatric disorders, such as mental abnormalities or cognitive impairment.
This study was reviewed and approved by the Ethics Committee of the Children's Hospital of Nanjing Medical University (Approval No.: 202309003-1).
1.2 Data Collection
1.2.1 Basic Information
We collected demographic characteristics (such as gender, age, place of residence, and medical expense payment methods) and clinical characteristics (such as disease duration and insulin treatment regimens) from the patients. The patients' glycosylated hemoglobin ($HbA_{1c}$) values for the past three months were retrieved from the hospital's electronic medical records. If a patient had not undergone $HbA_{1c}$ testing within the past three months, venous blood was collected on-site, and the value was determined via high-performance liquid chromatography using a Siemens DCA analyzer. An $HbA_{1c}$ level of $<7.5\%$ was defined as representing good glycemic control.
1.2.2 Multi-source Stigma
Internal stigma sources were assessed using the "Identity Concerns" dimension of the Type 1 Diabetes Stigma Assessment Scale (DSAS-1), consisting of 5 items. This dimension primarily reflects patients' identity-related distress, such as feelings of discrimination and embarrassment. External stigma was measured using a combination of 12 items from the "Differential Treatment" and "Blaming and Judgmental Comments" dimensions of the DSAS-1, along with 3 items from the "Parental Over-concern" dimension of the Short Form of the Chinese version of the Diabetes Quality of Life for Youth Scale (C-DQOLY-SF). This comprehensive approach covers stressors originating from peer discrimination, public misunderstanding, and parental over-concern. Given that the DSAS-1 does not include content related to parental over-concern, this study integrated the C-DQOLY-SF to more fully assess the sources of external stigma. The specific scales are described below:
(1) DSAS-1: This scale consists of 17 items divided into three dimensions: "Identity Concerns," "Differential Treatment," and "Blaming and Judgmental Comments." Items are rated on a 5-point Likert scale ranging from 1 ("Strongly Disagree") to 5 ("Strongly Agree"). Higher scores indicate higher levels of perceived diabetes-related stigma. The scale demonstrates good reliability and validity; in the present study, the Cronbach's $\alpha$ coefficient was 0.92.
(2) Parental Over-concern dimension of the C-DQOLY-SF: This dimension includes three items: "Parents are overprotective," "Parents worry too much about the diabetes," and "Parents act as if the diabetes is their own disease." A 5-point Likert scale is used for scoring, ranging from 1 ("Never") to 5 ("Always"). Higher scores reflect a higher degree of perceived parental over-concern and lower quality of life. The scale has well-established reliability and validity, with a Cronbach's $\alpha$ coefficient of 0.89 in this study.
1.2.3 Resilience
The Diabetes Strengths and Resilience Measure for Adolescents with Type 1 Diabetes (DSTAR-Teen) was used to assess the psychological resilience of adolescent patients with T1D. The scale comprises three dimensions: "Self-care Confidence," "Family Resources," and "Seeking Help," which are designed to evaluate resilience at the individual, familial, and social levels, respectively. The instrument consists of 12 items rated on a 5-point Likert scale ranging from 1 ("Never") to 5 ("Always"). Higher total scores indicate higher levels of diabetes-related resilience. The scale demonstrates good reliability and validity; in the present study, the Cronbach's alpha coefficient was 0.90.
1.3 Survey and Quality Control Methods
Prior to data collection, all survey administrators underwent standardized formal training. After obtaining informed consent from the participants, the researchers explained the purpose, content, and significance of the study in detail before distributing paper questionnaires. During the completion process, administrators provided timely clarification for any questions or points of confusion raised by the respondents. Questionnaires were collected and reviewed on-site immediately upon completion; any missing or ambiguous responses were verified with the participants in real-time. To ensure data accuracy, all questionnaire data were entered by two independent researchers and verified by a third person.
1.4 Statistical Methods
SPSS 26.0 statistical software was employed to conduct descriptive analysis of the basic characteristics of the participants. Quantifiable data following a normal distribution are expressed as ($\bar{x} \pm s$), while categorical data are presented as relative numbers (percentages).
Complex networks were generated using the qgraph package in R version 4.3.2. Relationships between network nodes were estimated via Pearson correlation analysis based on the EBICglasso function. Each item from the multi-source stigma measurement tool was selected as a node to represent stigma from different sources, while the dimensions of the psychological resilience tool were selected as nodes to represent individual, family, and social resilience. The weight of the edges between nodes represents partial correlations; a higher partial correlation indicates a closer relationship between nodes. Node predictability was estimated using the mgm function; nodes with high predictability are more heavily influenced by neighboring nodes and can be controlled through them. The centralityPlot function was used to calculate Expected Influence (EI) to measure node centrality and importance. Intervening in nodes with high EI can effectively intercept their influence on neighboring nodes. The NetworkComparisonTest package was used to compare the early adolescence group (ages 10–14) and the late adolescence group (ages 15–19), based on WHO standards. Network connectivity was reflected by measuring Global Strength (GS), defined as the sum of the absolute values of all edge weights in the network. The bootnet package was used for bootstrapping to evaluate the accuracy and stability of the network. Accuracy was estimated by calculating the 95% confidence intervals (CI) of the edge weights. Stability was assessed by calculating the Correlation Stability Coefficient ($CS$), using the case-dropping bootstrap method. A $CS > 0.25$ indicates acceptable stability, while a $CS > 0.50$ indicates good stability \cite{31}. Statistical significance was defined as $P < 0.05$.
2 Results
2.1 Basic Characteristics of Participants
The 364 adolescent patients with Type 1 Diabetes (T1D) recruited for this study covered 36 cities across 9 provinces nationwide. The sample included 162 males (44.5%) and 202 females (55.5%), with a mean age of $13.8 \pm 2.8$ years and a mean disease duration of $8.9 \pm 3.5$ years. The average $HbA_{1c}$ level was $(8.7 \pm 2.6)\%$, and 216 patients (59.3%) failed to meet glycemic control targets, as shown in [TABLE:1].
2.2 Scores of Multi-source Stigma and Resilience Scales
The mean score on the Diabetes Stigma Assessment Scale-Revised (DSAS-1) for the 364 adolescent T1D patients was $36.22 \pm 13.44$. Compared to the maximum possible score of 85, this indicates a lower-middle level of perceived stigma.
Among the multi-source stigma indicators, the three highest-scoring items were "parents' excessive worry about diabetes" ($3.00 \pm 1.26$), "concealing diabetes" ($2.70 \pm 1.40$), and "sugar-related blame" ($2.65 \pm 1.40$). The mean score for the Diabetes Self-Management and Resilience Scale for Teens (DSTAR-Teen) was $38.25 \pm 9.70$. Relative to the total possible score of 60, this represents an upper-middle level of resilience. Among its three dimensions, "family resources" received the highest score ($14.17 \pm 3.32$).
2.3 Complex Network Analysis
2.3.1 Network Relationships
The network structure is illustrated in [FIGURE:1]. The results indicate that the strongest partial correlation within the multi-source stigma domain occurred between the nodes "worrying about negative reactions from others" (a2) and "concealing diabetes" (a4) (0.562). Regarding the relationship between multi-source stigma and psychological resilience, a negative correlation was observed between "concealing diabetes" (a4) and "help-seeking" (Y3) (-0.098), suggesting that disease concealment may hinder patients' help-seeking behaviors. However, specific sources of stigma were found to have a positive impact on psychological resilience. Positive correlations were identified between "being perceived as flawed" (b6) and "help-seeking" (Y3) (0.026), as well as between "parents acting as if the diabetes is their own disease" (d3) and "family resources" (Y2) (0.007). These findings suggest that misunderstandings from others may prompt patients to seek help more actively, while parental overprotection may enrich family resources, thereby enhancing psychological resilience.
The node "Defect (b6)" exhibited the highest predictability across the entire network, indicating that 73.1% of its variance can be explained by its neighboring nodes.
2.3.2 Centrality Indices
The Expected Influence (EI) for each node is presented in [FIGURE:2]. The nodes "Perceived as defective" (b6), "Worry about negative reactions from others" (a2), and "Exclusion by others" (b5) demonstrated the highest EI values at 1.248, 1.132, and 1.125, respectively. These results suggest that adolescents with T1D primarily experience interpersonal misunderstandings and social rejection, which leads to the internalization of stigma and a heightened apprehension regarding discriminatory behavior from others.
2.3.3 Network Comparison Analysis
There were no statistically significant differences between the pre-adolescent and post-adolescent groups ($P = 0.25$, $P > 0.05$). While network connectivity did not reach statistical significance between the groups, the pre-adolescent group exhibited denser network connectivity than the post-adolescent group ($S = 0.10$, $E_{pre} = 10.47$, $E_{post} = 10.36$, $P = 0.789$). This suggests that interventions for Type 1 Diabetes (T1D) patients in the pre-adolescent stage may be more challenging. Further analysis of the EI for the two networks across the adolescent stages [FIGURE:3] revealed that the EI of "misunderstanding the reasons for needing insulin" (c1) was 1.036 in the pre-adolescent group, decreasing to 0.795 in the post-adolescent group.
2.3.4 Stability Analysis
The 95% confidence intervals (CI) were narrow, with values of -0.156 to 1.387 for the total sample. These narrow intervals indicate that the estimation of edge weights was relatively accurate. To assess the stability of the network, the case-dropping bootstrap method was employed. The resulting stability coefficients ($CS$-coefficients) were 0.750 for the total sample, 0.593 for the pre-puberty group, and 0.438 for the post-puberty group. These results confirm the stability of the network [FIGURE:4].
3 Discussion
3.1 Sources of Stigma in Adolescents
Patient stigma primarily originates from both individual and interpersonal levels. The results of the complex network analysis in this study demonstrate that "being perceived as flawed," "worrying about negative reactions from others," and "social exclusion by others" exhibit the highest expected influence within the network. These findings indicate that, beyond concerns regarding their individual identity, adolescent patients with Type 1 Diabetes (T1D) are significantly impacted by social perceptions and interpersonal dynamics.
Adolescents with Type 1 Diabetes (T1D) suffer from misunderstandings and exclusion within their interpersonal relationships. Network analyses of stigma conducted among breast cancer patients have yielded similar results, suggesting that interventions can be implemented at both the individual and interpersonal levels of stigma sources.
At the individual level, "worry about negative reactions from others" ($a2$) and "concealing diabetes" ($a4$) showed the strongest correlation in the network. This supports the research by Momani et al. \cite{1}, which found that adolescent T1D patients tend to hide their condition due to anticipated discrimination. However, Chalmers et al. \cite{2} found that some adolescent T1D patients possess high levels of self-awareness and strong stigma resistance, enabling them to resist external discrimination through self-advocacy and humor. We suggest that future interventions utilize cognitive behavioral therapy to enhance patients' stigma resistance and reduce concealment behaviors.
At the interpersonal level, adolescent T1D patients are frequently misunderstood, specifically by being "perceived as flawed" ($b6$). A systematic review indicated that misunderstandings of children with chronic diseases by teachers and parents may differ from general public misunderstandings \cite{3}. In the study by Wang et al. \cite{4}, adolescent T1D patients reported that some teachers believed they were incapable of assuming class leadership roles. Steven et al. \cite{5} also noted that teachers and parents often have lower academic expectations for children with chronic illnesses. Holmström \cite{6} found that unequal treatment of patients by teachers stems not only from a lack of knowledge but also from a lack of confidence in diabetes management. Nurses can provide diabetes education and parenting guidance for teachers and parents. Furthermore, schools should improve management regulations for students with chronic diseases to ensure that all students enjoy equal rights.
3.2 Dual Role of Multi-source Stigma in Resilience
This study finds that multi-source stigma plays a dual role within the complex network of psychological resilience. Specifically, "concealing diabetes" was negatively correlated with the "help-seeking" dimension of resilience, suggesting that disease concealment hinders adolescents with Type 1 Diabetes (T1D) from seeking assistance. This aligns with the findings of Kim et al., which demonstrated that concealing one's condition leads to reduced social support and poorer clinical outcomes for adolescent T1D patients.
However, Pachankis et al. found that in countries with high levels of social stigma, patients who conceal their illness report higher life satisfaction because they are shielded from discrimination. This suggests that patients should be supported in practicing selective disclosure based on their specific social environment. Social media platforms that allow for anonymity can provide safe social opportunities for patients with varying needs. Furthermore, web-based Type 1 Diabetes (T1D) peer communities facilitate the exchange of medical information and mutual support among adolescent patients. In this study, the item "parents act as if the diabetes is their own disease" was positively correlated with the "family resources" dimension of psychological resilience. This indicates that, to a certain extent, parental over-involvement can enrich a patient's family resources and strengthen their psychological resilience.
However, in the study by Hapunda et al. \cite{Hapunda}, adolescents with Type 1 Diabetes (T1D) perceived excessive parental involvement as an infringement on their autonomy, which subsequently led to increased family conflict. A comprehensive review indicates that parental involvement generally improves glycemic control and reduces family conflict; however, the degree and manner of this involvement are of critical importance. Lin et al. emphasize that parents should pay close attention to their communication styles and gradually transfer diabetes management responsibilities as the child ages.
3.3 Age-related Changes in Stigma and Resilience
In this study, the complex network of resilience in adolescent T1D patients evolved as the patients aged. Network comparison analysis revealed that the network connections in the pre-adolescent group were tighter than those in the late-adolescent group. In the network theory of mental disorders, "hysteresis" refers to a state where the continuous mutual activation between nodes forms strong connections; consequently, even if the cause of the disorder is removed, the network structure struggles to return to a normal state quickly. This hysteresis suggests that psychological barriers may persist. Specifically, compared to late-adolescent patients, the stigma experienced by pre-adolescent patients may be more difficult to alleviate, even after long-term intervention.
4 Conclusion
This study utilizes complex network analysis to explore the relationship between multi-source stigma and resilience among adolescents with Type 1 Diabetes (T1D). The results demonstrate that multi-source stigma exerts a dual effect on resilience. Public misunderstanding, social rejection, and individual anticipated discrimination were identified as significant, intervenable sources of stigma; precisely eliminating these factors can help enhance patient resilience. Simultaneously, healthcare professionals should pay attention to specific sources of stigma that may play a protective role in resilience. Furthermore, the network relationships between multi-source stigma and resilience evolve as patients age, suggesting that future interventions should be tailored to different age groups.
Author Contributions: Wang Rui was responsible for the implementation of the research process, data collection, organization, and statistical analysis, as well as drafting the initial manuscript and revising the final version, and holds overall responsibility for the article. Yang Cuicui and Weng Xinyi participated in data collection and organization. Wang Yubing and Xu Jingjing participated in data collection and quality control of the paper. Luo Dan proposed the research ideas, designed the research protocol, was responsible for quality control and review of the article, holds overall responsibility for the article, and provided financial support for the research project.
The authors declare no conflicts of interest.
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