The Impact of Stigma on Self-Management Behavior Among People with HIV in China: The Role of Social Support and Self-Esteem

Abstract

Understanding the psychosocial factors influencing self-management behaviors among people with HIV (PWH) is crucial for effective medical interventions and improving their quality of life. However, there has been limited research exploring the psychosocial mechanisms influencing self-management behaviors among PWH in China. Our study examined the relationship between stigma, social support, self-esteem, and self-management behaviors among PWH, as well as whether social support and self-esteem mediate these relationships. Cross-sectional data were collected from 282 PWH in Sichuan Province, China. Data were collected using four validated self-report measures (HIV Stigma Scale, HIV/AIDS Patient Self-Management Scale, Social Support Rating Scale, and Self-Esteem Scale). Structural equation modeling was used to examine the different pathways influencing self-management behaviors. All the impacts on self-management behavior outcomes were found to be significant. The final mediation model indicated that social support and self-esteem significantly mediated the relationship between stigma and self-management behaviors. These findings underscore the importance of addressing stigma and enhancing social support and self-esteem in interventions aimed at promoting self-management behaviors among PWH.

Introduction

According to the statistics from the Chinese Center for Disease Control and Prevention (China CDC), by the end of 2022, there were ∼1.29 million people with HIV (PWH) in China. In the same year, China reported 110,491 new HIV infections and 34,962 deaths due to HIV-related causes.¹ HIV continues to be a significant public health issue in China, impacting not only the health of individuals but also the socioeconomic development of the nation. The use of highly active antiretroviral therapy has extended the lives of PWH, transforming the disease from a fatal illness into a manageable chronic condition.² However, like any other chronic disease, HIV infection cannot be cured, and effective virus management requires adherence to high-level prescription treatments and lifelong self-care.³ In addition, PWH are more prone to developing other comorbidities such as osteoporosis, cardiovascular disease, and chronic kidney disease.^4,5 These comorbidities pose additional challenges to public health institutions, including managing the symptoms and interactions of different chronic diseases as well as scheduling appointments for various specialized care. Given the complexity of optimizing health care tasks for PWH, researchers have found that self-management is crucial but still presents challenges.⁶ Self-management is an integral part of chronic disease care and can be defined as “the tasks that individuals with one or more chronic illnesses must undertake”.⁷ The self-management behaviors of PWH mainly include medication adherence, dietary management, exercise, psychological adjustment, and prevention of transmission.⁸ Research has shown that self-management among PWH has a significant impact on their quality of life, disease control, and prevention of transmission.⁹ The “Positive Self-Management Theory” proposed by the Stanford Patient Education Research Center for PWH also suggests that enhancing patients’ confidence in dealing with the disease, adopting a scientifically healthy lifestyle, and learning skills to actively face life are key self-management behaviors for PWH to effectively manage their condition.¹⁰ However, research from China indicates that 68.2% of PWH have low-to-moderate levels of self-management abilities, suggesting that the current status of self-management is still not optimistic.¹¹ Therefore, delving into the factors influencing PWH’s self-management behaviors and revealing their mechanisms is crucial for enhancing patients’ control over the disease and improving their quality of life.

Among the factors influencing self-management behaviors, stigma is a key variable that cannot be overlooked. Stigma refers to the negative perceptions or attitudes held by society toward certain groups of people or specific conditions. It often involves unfair treatment and discrimination against these individuals.¹² Existing research has shown that stigma not only leads to serious psychological issues such as inferiority, panic, and even suicide but also has a negative impact on individuals’ medication adherence and limits their adoption of healthy behaviors.^13,14 However, research on the specific effects of stigma on self-management among PWH and its underlying mechanisms remains insufficient. In addition, social support is considered an important resource for enhancing individuals’ coping abilities in stressful situations, while self-esteem forms the foundation of individuals’ self-worth and self-efficacy.^15,16 Both are believed to be important factors influencing self-management.^15,16 However, the role of social support and self-esteem in the process of how stigma affects self-management among PWH has yet to be explored.

Stigma and self-management behavior

As a distinguished and labeled difference, stigma, Goffman notes, enables varieties of discrimination that ultimately deny the individual/group full social acceptance, reduce the individuals’ opportunities, and fuel social inequalities.¹⁷ Stigma affects health outcomes by worsening, damaging, or hindering various processes, including social relationships, resource availability, stress, and psychological and behavioral responses, thereby exacerbating poor health conditions.^18,19 The Stress Process Model suggests that stigma is a significant source of stress for members of marginalized groups. It puts individuals in a state of stress and ultimately leads to a series of stress responses such as depression and anxiety, weakening patients’ confidence in managing their own illness²⁰ In China, HIV and AIDS are often closely associated with moral, ethical, and sexual transmission issues, making PWH more susceptible to social misunderstandings and discrimination.²¹ HIV infection is a chronic disease that requires long-term management, including adherence to medication regimens, maintaining a healthy lifestyle, and undergoing regular medical check-ups.²² However, stigma and discrimination can lead to significant challenges for PWH in terms of self-management.²³

Based on the above considerations, we propose: H1:

Stigma negatively predicts self-management behaviors among PWH in China.

The potential mediating role of social support

Chronic disease self-management models suggest that social support from personal networks and community organizations serves as a beneficial supplement to individuals’ self-management abilities.²⁴ Social support, as a social environmental factor, is defined as the provision of resources (such as emotional, friendship, financial, and material support) by others (such as family, friends, neighbors, and community members) when an individual has needs in their daily life.²⁵ This support has a maintenance and health care effect on the individual’s physical and psychological well-being.^25,26 Previous research has demonstrated a significant correlation between social support and health behaviors and outcomes in individuals with chronic diseases such as diabetes,²⁷ hypertension,¹⁵ heart failure,²⁸ and chronic obstructive pulmonary disease.²⁹ The social support theory posits that individuals can acquire emotional, informational, and practical resources from their social relationships, which aid in stress relief and enhance coping abilities when faced with challenges or stressors.³⁰ Additionally, research indicates a significant correlation between stigma and social support.³¹ In China, families and communities serve as crucial sources of social support.³² However, due to stigma and prejudice, PWH may encounter difficulty in accessing family and community support or even face exclusion.³² This can result in a lack of social support for PWH, making it challenging for them to cope with the challenges posed by the disease.

Based on the aforementioned considerations, we propose: H2:

Social support may mediate the relationship between stigma and self-management behaviors among PWH in China.

The potential mediating role of self-esteem

Self-esteem is the overall positive evaluation of oneself.³³ Solomon has pointed out that self-esteem is a psychological mechanism through which individuals adapt to their social and cultural environments.³⁴ It acts as a mediator, regulating the relationship between individuals and their environments and influencing the positivity and proactivity of their behavior.³⁴ Although self-esteem theory does not explicitly explain its relationship with goals, self-esteem is closely related to an individual’s goal orientation.³⁵ When individuals have low levels of self-esteem, they often exhibit a lack of goals or engage in self-destructive behaviors, whereas those with high self-esteem tend to have clear and specific goals.³⁶ When Mikula and colleagues studied patients with multiple sclerosis, they found a significant positive correlation between self-esteem and self-management.¹⁶ Similarly, Du et al. found that self-esteem is an important factor influencing self-management among patients with type 2 diabetes.³⁷ Additionally, research indicates that stigma is also considered a key factor influencing self-esteem.³⁸ When PWH experience stigma from the outside world, their levels of self-esteem may decrease.³⁸ The state of low self-esteem can weaken PWH’s confidence and abilities to cope with the disease, leading to a lack of initiative and proactiveness in disease management.

Based on the above considerations, this study proposes: H3:

Self-esteem may mediate the relationship between stigma and self-management behaviors among Chinese PWH.

The relationship between social support and self-esteem

Research indicates that social support plays a significant role in the development of self-esteem.³⁹ When individuals experience more social support, they tend to describe themselves more positively and have higher levels of self-esteem.³⁹ Social support influences self-esteem, which in turn predicts self-management behaviors.^16,39 Therefore, this study proposes: H4:

Social support and self-esteem may serve as a mediating chain between stigma and self-management behaviors among PWH in China. The concept of a mediating chain refers to the sequential relationship among multiple mediating variables, forming a chain of mediators through which the predictor variable indirectly affects the outcome variable.⁴⁰ Compared with simple mediation, a mediating chain can reveal the complex mechanisms underlying the relationship between predictor and outcome variables, providing a deeper understanding of this relationship.⁴⁰

Methods

Design

We used a cross-sectional design for this study, which was conducted in accordance with the STROBE (The Strengthening the Reporting of Observational Studies in Epidemiology) guidelines (see Supplementary Data S1).

Participants

Convenience sampling was used to select PWH as the research subjects from HIV-designated hospitals or disease control centers (CDC) in Chengdu and Xichang cities, Sichuan Province. The survey was conducted from March to July 2023. The inclusion criteria were as follows: (a) aged 18 or above, (b) diagnosed with HIV infection, and (c) capable of signing an informed consent form and willing to cooperate with the survey. Patients with mental disorders or cognitive impairments were excluded from the study.

Equation N = 4Uα²S²/δ² was used to calculate the sample size.⁴¹ S = 0.37 is calculated from the presurvey, the allowable error δ is set to 0.1, and α is set to 0.05, so N = 4 × 1.96²× 0.37²/0.1² ≈210. Taking into account the sampling error and the possibility of invalid questionnaires, we distributed a total of 300 questionnaires. Finally, after 18 unqualified questionnaires were deleted, 282 results were included in the analysis. In addition, research has shown that a sample size of ≥200 is considered appropriate for structural equation model (SEM) analysis.^42,43 Therefore, the sample size in this study meets the basic sample size requirement for model validation.

Data collection and ethical considerations

All data were collected through a questionnaire survey. First, the investigators were trained on the study’s objectives and procedures, the content of the questionnaire, the method of completion, and important considerations. Then, these well-trained investigators explained the study’s purpose, procedures, potential risks, and benefits and ensured participant privacy throughout the research process. Participation was voluntary, and they could withdraw at any time. After obtaining consent by having participants sign an informed consent form, the specially trained researchers conducted the survey. The survey primarily consisted of a self-report questionnaire on demographic information, HIV stigma, self-management behavior, social support, and self-esteem. It took ∼20–30 min to complete the survey.

This study has been reviewed and approved by the ethics committee of West China Hospital, Sichuan University (No. 2023-1210) and conducted in accordance with the Declaration of Helsinki.

Instruments

Demographic and disease-related variables

It mainly includes age, gender, ethnicity, educational background, religious affiliation, marital status, place of residence, and family’s monthly per capita income.

Stigma

The HIV Stigma Scale–12-Item Short Version (HSS-12) developed by Reinius in 2017 was utilized in this study.⁴⁴ The scale comprises 12 items, including personalized stigma, disclosure concerns, concerns with public attitudes, and negative self-image, encompassing four dimensions. The scale employs a Likert 4-point rating, ranging from “strongly disagree” to “strongly agree,” scored from 1 to 4, respectively. A higher total score indicates a higher level of stigma among participants. Confirmatory factor analysis (CFA) was used to test the compatibility of the scale structure with the collected data, and the results showed an acceptable fit between the scale’s factor structure and the data [chi-squared/degrees of freedom (χ ² /df) = 2.26, goodness-of-fit index (GFI) = 0.92, adjusted goodness-of-fit index (AGFI) = 0.91, comparative fit index (CFI) = 0.95, increment fitting index (IFI) = 0.93, root mean square error of approximation (RMSEA) = 0.06, standardized root mean square residual (SRMR) = 0.03]. In addition, the reliability (Cronbach’s alpha) of HSS-12 in this study was 0.85.

Self-management behavior

The HIV/AIDS Patient Self-Management Scale developed by Wu was used in this study.⁴⁵ The scale consists of 30 items categorized into five dimensions: daily life management (four items), disease knowledge management (four items), symptom management (nine items), treatment adherence management (seven items), and emotional cognitive management (six items). The scale employs a Likert 5-point rating, with scores ranging from 1 (none) to 5 (always), indicating the frequency of each behavior. A higher total score reflects stronger self-management abilities in participants. CFA results revealed a satisfactory construct validity (χ ² /df = 2.32, GFI = 0.91, AGFI = 0.92, CFI = 0.93, IFI = 0.91, RMSEA = 0.07, SRMR = 0.03). In addition, the reliability (Cronbach’s alpha) of the scale in this study was found to be 0.92.

Social support

The Social Support Rating Scale (SSRS), developed by Xiao in 1994, was utilized in this study.⁴⁶ The scale consists of 10 items, including three dimensions: objective support (three items), subjective support (four items), and utilization of social support (three items). Higher scores on each of the three dimensions indicate a higher level of social support. CFA results revealed a satisfactory construct validity (χ ² /df = 2.17, GFI = 0.93, AGFI = 0.91, CFI = 0.94, IFI = 0.92, RMSEA = 0.06, SRMR = 0.02). In addition, the reliability (Cronbach’s alpha) of SSRS in this study was found to be 0.83.

Self-esteem

The Self-Esteem Scale (SES), developed by Rosenberg,⁴⁷ was utilized in this study. The scale consists of 10 items, and a Likert 4-point scoring system was employed. The scoring options ranged from 1 to 4, with 1 indicating “strongly disagree,” 2 for “disagree,” 3 for “agree,” and 4 for “strongly agree.” The total scores on the scale can range from 10 to 40, with higher scores indicating more positive self-evaluation and higher levels of self-esteem. CFA results revealed a satisfactory construct validity (χ ² /df = 2.53, GFI = 0.95, AGFI = 0.93, CFI = 0.95, IFI = 0.92, RMSEA = 0.07, SRMR = 0.04). In addition, the reliability (Cronbach’s alpha) of SES in this study was found to be 0.83.

Data analysis

Data analysis and hypothesis testing were conducted using the Statistical Package for the Social Sciences (SPSS) version 25.0 and AMOS version 25.0. First, descriptive statistics were employed to analyze the general characteristics of the participants. Second, a normality test was conducted for continuous variables. If the continuous variables followed a normal distribution, Pearson correlation analysis was used to examine the relationships between these variables; otherwise, Spearman correlation analysis was performed. Finally, an SEM was utilized to test the mediating effect of social support and self-esteem on the relationship between stigma and self-management behavior. SEM was chosen for its ability to handle complex relationships, including indirect effects and potential mediation, as well as its capacity to account for measurement error and the inclusion of latent variables. This approach ensured a rigorous examination of our theoretical model and facilitated the assessment of model fit using established fit indices.⁴³

Based on prior research on composite packaging, we will adopt the “item-to-construct balance” method to package the items of self-esteem.⁴⁸ To evaluate the fit of the hypothesized model, the following criteria will be used: the ratio of χ ² /df, GFI, AGFI, CFI, IFI, RMSEA, and SRMR. χ ² /df < 5, GFI > 0.90, AGFI>0.90, CFI>0.90, IFI>0.90, RMSEA ≤ 0.08, and SRMR<0.05 indicated the SEM fit.^43,49 Finally, bootstrapping with 5000 samples was used to identify the significance of the mediating effect. If the 95% confidence interval (CI) does not include 0, it is considered statistically significant.

Results

Participant characteristics

The participants had an average age of 46.33 ± 8.71 years, with 196 participants (69.50%) being male and 86 participants (30.50%) being female. Regarding ethnicity, 180 participants (63.83%) were Han, 94 participants (33.33%) were Yi, and 8 participants (2.84%) belonged to other ethnic minorities. The majority of participants reported no religious belief (n = 198, 70.21%). In terms of educational background, the majority had a secondary school (n = 134, 47.52%) (see Table 1).

Table 1.

General Characteristics of Participants (n = 282)

Variables	Frequency (n)	Percentage (%)
Gender
Male	196	69.50
Female	86	30.50
Ethnicity
Han	180	63.83
Yi	94	33.33
Other ethnic minorities	8	2.84
Religious belief
Yes	84	29.79
No	198	70.21
Residence
Town	158	56.03
Village	124	43.97
Educational background
Primary school or below	108	38.30
Secondary school	134	47.52
Bachelor’s degree or above	40	14.18
Per capita monthly household income (RMB)
≤550	110	39.01
551–2000	92	32.62
2001–5000	64	22.70
≥5000	16	5.67

Descriptive statistics and correlation analysis

The mean, standard deviations, and correlation coefficient results of these variables are presented in Table 2. The average score for stigma was 2.89 ± 0.54, while the average score for social support was 2.32 ± 0.59. Self-esteem had an average score of 2.25 ± 0.31, and self-management behavior had an average score of 2.38 ± 0.34. The normality test showed that all data had normal distributions.

Table 2.

Descriptive Statistics and Correlation Analysis (r)

Variables	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	Mean ± SD
Stigma	1																2.89 ± 0.54
PS	0.697^**	1															3.26 ± 0.77
DC	0.727^**	0.746^**	1														3.21 ± 0.78
CPA	0.712^**	0.521^**	0.592^**	1													3.16 ± 0.72
NS	0.883^**	0.611^**	0.640^**	0.615^**	1												2.91 ± 0.59
Social support	−0.301^**	−0.214^**	−0.264^**	−0.093	−0.281^**	1											2.32 ± 0.59
OS	−0.269^**	−0.212^**	−0.271^**	−0.118^*	−0.246^**	0.911^**	1										2.63 ± 0.47
SS	−0.243^**	−0.267^**	−0.352^**	−0.214^**	−0.289^**	0.707^**	0.443^**	1									1.92 ± 0.81
USS	−0.363^**	−0.248^**	−0.238^**	−0.197^**	−0.347^**	0.705^**	0.481^**	0.390^**	1								2.41 ± 0.49
Self-esteem	−0.183^**	−0.200^**	−0.246^**	−0.192^**	−0.222^**	0.332^**	0.325^**	0.208^**	0.212^**	1							2.25 ± 0.31
Self-management	−0.254^**	−0.222^**	−0.262^**	−0.169^**	−0.204^**	0.426^**	0.363^**	0.244^**	0.424^**	0.398^**	1						2.38 ± 0.34
DKM	−0.302^**	−0.255^**	−0.309^**	−0.237^**	−0.278^**	0.440^**	0.396^**	0.197^**	0.456^**	0.394^**	0.777^**	1					2.06 ± 0.36
DLM	−0.338^**	−0.222^**	−0.238^**	−0.324^**	−0.281^**	0.375^**	0.345^**	0.221^**	0.307^**	0.382^**	0.693^**	0.518^**	1				2.79 ± 0.15
SM	−0.231^**	−0.230^**	−0.272^**	−0.149^*	−0.161^**	0.336^**	0.235^**	0.244^**	0.394^**	0.376^**	0.908^**	0.760^**	0.600^**	1			2.34 ± 0.41
TAM	−0.347^**	−0.224^**	−0.320^**	−0.253^**	−0.299^**	0.428^**	0.382^**	0.229^**	0.405^**	0.370^**	0.891^**	0.768^**	0.673^**	0.810^**	1		2.80 ± 0.20
ECM	−0.303^**	−0.248^**	−0.284^**	−0.229^**	−0.305^**	0.415^**	0.381^**	0.195^**	0.401^**	0.424^**	0.863^**	0.732^**	0.673^**	0.752^**	0.756^**	1	1.91 ± 0.58

p < 0.05.

p < 0.01.

CPA, concerns with public attitudes; DC, disclosure concerns; DKM, disease knowledge management; DLM, daily life management; ECM, emotional cognitive management; NS, negative self-image; OS, objective support; PS, personalized stigma; SM, symptom management; SS, subjective support; TAM, treatment adherence management; USS, utilization of social support; SD, standard deviation.

The Pearson correlation analysis showed that stigma was negatively correlated with social support, self-esteem, and self-management behavior (r = −0.301, −0.183, −0.254, all p < 0.01). Social support was significantly positively correlated with self-esteem and self-management behavior (r = 0.332, 0.426, all p < 0.01). Further, self-esteem was significantly positively correlated with self-management behavior (r = 0.398, p < 0.01). More details on the correlations between the selected variables are provided in Table 2.

Mediating effect analysis

A SEM was employed to test the mediating role of social support and self-esteem in the relationship between stigma and self-management behavior. Model fit indices were used to determine the adequacy of the fit between the model and the data. The model fitting results indicated that the model was acceptable (see Table 3).

Table 3.

Model-Fitting Standard and Fitting Index of the Final Model

	χ²/df	GFI	AGFI	CFI	IFI	RMSEA	SRMR
Model-fitting standard	<5	>0.90	>0.90	>0.90	>0.90	≤0.08	<0.05
Model-fitting index	3.6	0.91	0.92	0.92	0.92	0.062	0.03

AGFI, adjusted goodness-of-fit index; CFI, comparative fit index; χ ² /df, chi-squared/degrees of freedom; GFI, goodness-of-fit index; IFI, increment fitting index; RMSEA, root mean square error of approximation; SRMR, standardized root mean square residual.

The analysis revealed significant direct effects. Stigma significantly and negatively predicted PWH’s social support (β = −0.36, t = −4.72, p < 0.001), self-esteem (β = −0.19, t = −2.67, p < 0.01), and self-management behavior (β = −0.12, t = −2.08, p < 0.05). Additionally, social support had a significant positive direct effect on self-esteem (β = 0.39, t = 4.71, p < 0.001) and self-management behavior (β = 0.38, t = 4.77, p < 0.001). Self-esteem also significantly predicted self-management behavior (β = 0.34, t = 5.04, p < 0.001; see Fig. 1).

FIG. 1.

The mediating roles of social support and self-esteem in the relationship between stigma and self-management behavior among people with HIV in China. CPA, concerns with public attitudes; DC, disclosure concerns; DKM, disease knowledge management; DLM, daily life management; ECM, emotional cognitive management; NS, negative self-image; OS, objective support; PS, personalized stigma; SES1–SES3, the three parcels of self-esteem used in the analysis; SM, symptom management; SS, subjective support; TAM, treatment adherence management; USS, utilization of social support.

In terms of indirect effects, we used bias-corrected percentile bootstrap 95% CIs and 5000 bootstrap samples to test the mediating effects of social support and self-esteem in the relationship between stigma and self-management behaviors. According to Preacher and Hayes,⁵⁰ the upper and lower bounds of the CI were used to determine the significance of the indirect effect. The results indicated that social support mediates the relationship between stigma and self-management behavior, accounting for 37.84% of the total effect. Self-esteem also played a mediating role, accounting for 16.22% of the total effect. Further, social support and self-esteem together functioned as a chain mediating mechanism, accounting for 13.51% of the total effect (see Table 4).

Table 4.

Bootstrap Analysis of the Mediating Model

Effect	Path	Standardized β	SE	The size of effect	95% CI
Effect	Path	Standardized β	SE	The size of effect	Lower	Upper
IndA1	Stigma→SS→SM	−0.14	0.05	37.84%	−0.26	−0.05
IndA2	Stigma→SES→SM	−0.06	0.03	16.22%	−0.14	−0.01
IndA3	Stigma→SS→SES→SM	−0.05	0.02	13.51%	−0.10	−0.02
Direct	Stigma→SM	−0.12
Total	Stigma→SM	−0.37

CI, confidence interval; SES, self-esteem; SM, self-management; SS, social support; SE, standard error.

Discussion

The present study examined the impact of stigma on self-management behavior of PWH, as well as the mediating roles of social support and self-esteem in this relationship. Specifically, our research findings contribute to a better understanding of the self-management behavior of PWH. First, stigma negatively predicts the self-management behavior of PWH. Second, through mediation analysis, it was found that social support and self-esteem serve as mediating variables independently between stigma on self-management behavior. Last, social support and self-esteem play a chain mediating role between stigma and self-management behavior of PWH.

Effect of stigma on self-management behavior

Among the participants in the current study, the scores for self-management behaviors were slightly higher than those reported in a previous study conducted by Wang with values of 1.91 ± 0.36.⁵¹ This could be attributed to the government’s increasing investment in HIV prevention and treatment in recent years, thereby enhancing the level of patient care. Simultaneously, improved awareness among patients themselves is also a significant contributing factor. PWH have gained knowledge about HIV through various channels, thereby strengthening their self-protection awareness, actively engaging in treatment, and elevating their self-management capabilities. However, overall, the self-management level among PWH in China remains relatively lower than PWH in countries such as the United States⁵² and South Korea.⁵³ This indicates the continued need for further development of corresponding plans to enhance the self-management abilities of individuals infected with HIV.

Consistent with previous research,⁵⁴ our study confirmed that stigma could significantly predict PWH’s self-management behaviors, supporting H1. In China, the stigma faced by PWH is particularly prominent, stemming not only from the complexity of the disease itself but also from close associations with social cultural, and moral beliefs.⁵⁵ Due to societal biases and misunderstandings about HIV, PWH often become targets of rejection and discrimination by those around them.⁵⁵ This prolonged psychological stress makes it difficult for PWH to form positive self-awareness and emotional states, thereby weakening the motivation and ability of individuals to engage in effective self-management, such as adhering to medication schedules and maintaining healthy lifestyle habits.⁵⁶

Mediation through social support

Current results indicated that social support partially mediates the negative impact of stigma on self-management behaviors among PWH in China, supporting H2. Specifically, an increase in social support can alleviate to some extent the negative effects of stigma on self-management behaviors. This alleviating effect suggests that positive support from family, friends, and the community not only provides patients with a psychological buffer to cope with the stress and challenges brought about by stigma but also may indirectly promote more proactive health management behaviors by enhancing their coping strategies and resource utilization capabilities.⁵⁶ Therefore, social support serves not only as a defensive line against external discriminatory environments but also as a key factor in enhancing the resilience of PWH, improving their quality of life, and health outcomes.⁵⁷

Mediation through self-esteem

As revealed by this study, stigma can also influence self-management behaviors among PWH through the mediating role of self-esteem, supporting H3. Self-esteem, as the subjective evaluation of individual self-worth and capabilities, is a crucial component of psychological well-being and is vital for promoting positive health behaviors.³⁴ Individuals with higher self-esteem tend to engage in more positive self-evaluation, exhibiting greater confidence and optimism, which encourages them to actively consider various possibilities for action.¹⁶ For PWH, experiencing external rejection and injustice can weaken their self-esteem foundation, affecting their confidence in their abilities and their sense of control over life.⁵⁸ Consequently, they may exhibit passive or resistant behaviors in self-management, such as irregular medication adherence and neglecting health monitoring, all of which are detrimental to long-term disease control and maintaining quality of life.

Mediation through social support and self-esteem

The current study also found that social support influences the self-esteem of PWH, consistent with findings from other cross-cultural studies.³⁹ Additionally, we found that in the relationship between stigma and self-management behaviors among PWH, social support and self-esteem play a sequential mediating role, supporting H4.

First, stigma serves as the initial source of stress, exerting negative effects on the social environment of PWH.¹³ This perception of stigma may hinder PWH from seeking and receiving help from family, friends, and the community, thereby weakening the level of social support they receive.³⁹ Social support, as a crucial resource for alleviating life stress and enhancing coping abilities, plays a buffering role in this process.³⁹ When social support decreases, patients’ feelings of isolation and helplessness in the face of disease challenges intensify, further affecting their psychological adjustment and behavioral choices. Second, a weakened social support system directly affects individuals’ levels of self-esteem.³⁹ Self-esteem is the fundamental evaluation of one’s self-worth and capabilities.⁴⁴ When individuals perceive increased rejection and negative evaluations from the outside world, while positive social interactions and support diminish, their self-esteem may be compromised. Low self-esteem not only diminishes individuals’ initiative and resilience in facing disease challenges but may also reduce their motivation and ability to adopt positive health behaviors.³⁸ Ultimately, impaired self-esteem, combined with inadequate social support, reduces patients’ willingness and ability to adhere to medical advice, thereby impeding effective self-management.

Limitations and Future Research

This study holds significant importance for implementing interventions aimed at enhancing self-management behaviors in PWH. Despite some highlights, certain limitations must be considered. First, this study is a cross-sectional research, which involves collecting data at a single point in time and restricts our ability to determine causality and establish temporal sequences between variables. Future research should consider employing longitudinal study designs to better understand the causal pathways and temporal dynamics between these variables. Second, the data used in this study are self-reported by participants, which may be subject to recall bias. Although no significant deviations from common methods were found in this study, future research should employ multiple data collection methods (such as a combination of self-report and reports from others) to ensure the reliability of conclusions. Third, our study broadly conceptualized the variables involved. This approach, while aligned with the scope and objectives of our research, does not account for the various dimensions each variable may encompass. Future research should consider examining the different dimensions of these constructs to provide a more detailed understanding of their individual and combined impacts on self-management behaviors among PWH. Last, this study employed a convenience sampling method, surveying only follow-up patients from two disease control centers in Sichuan Province. This may hinder the generalizability of the results to PWH in other regions or cultural backgrounds. Future research should conduct multi-center studies on patients from different regions and attempt to validate our findings in populations with diverse cultural backgrounds or different geographical areas.

Conclusions

Enhancing self-management skills is a key factor in effectively improving the quality of life for PWH. This study, through empirical analysis, reveals the significant impact of stigma on the self-management behaviors of PWH in China. Additionally, it elucidates the crucial mediating roles of social support and self-esteem in this relationship. Given these findings, the results of this study lay the foundation for further investigation and intervention into the self-management behaviors of PWH, providing empirical guidance for developing strategies to enhance the self-management skills of PWH.

Implications for Practice

The findings of this study have significant implications for practice, which should be considered by PWH, health care professionals, community organizations, and family members of PWH.

First of all, for PWH: Awareness and acknowledgment of stigma as a significant factor influencing self-management behavior are crucial. Patients should be encouraged to seek social support networks, both formal (health care providers, support groups) and informal (family, friends), to mitigate the negative impact of stigma on their self-esteem and self-management practices. Additionally, interventions aimed at enhancing self-esteem through counseling or empowerment programs could prove beneficial in improving self-management behaviors among PWH.

Second, for health care professionals: Health care providers need to be sensitized to the pervasive effects of stigma on patients’ self-management behaviors. They should strive to create a supportive and non-judgmental environment where PWH feel safe to disclose experiences of stigma. Further, integrating psychosocial support services into routine care can aid in addressing the emotional and psychological implications of stigma, thereby promoting better self-management outcomes.

Third, for community organizations: Community organizations play a vital role in fostering inclusive environments and advocating for the rights of PWH. These organizations can offer tailored support programs that address the specific needs of individuals facing stigma. Collaborating with health care providers and other stakeholders can facilitate holistic care approaches that address both medical and psychosocial aspects of HIV management.

Last, for family members: Family members of PWH should be educated about the detrimental effects of stigma on self-management behaviors. They can provide crucial support by offering unconditional acceptance and understanding, thereby bolstering the individual’s self-esteem and resilience in the face of stigma. Family interventions aimed at fostering open communication and reducing stigma within the family unit can contribute to a supportive environment conducive to effective self-management.

Footnotes

Acknowledgments

The authors extend their heartfelt gratitude to the PWH who participated in this study. Their willingness to share their experiences and insights has been invaluable to our research endeavor. The authors also express their sincere appreciation to the specialized nurses and physicians who dedicated their time and effort to recruit participants and facilitate data collection. Without their commitment and support, this study would not have been possible.

Authors’ Contributions

H.H.: Conceptualization, writing—original draft preparation, and writing—reviewing and editing. L.Z.: Conceptualization, writing—original draft preparation, and writing—reviewing and editing. X.Z.: Conceptualization, methodology, data curation, formal analysis, and writing—original draft preparation. L.T.: Writing—original draft preparation and reviewing and editing. Q.L. and Y.L.: Investigation, writing—reviewing and editing, and supervision. H.Z.: Investigation, writing—reviewing and editing, and supervision. H.C.: Conceptualization, methodology, resources, reviewing and editing, supervision, project administration, and funding acquisition. All authors read and approved the final article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

The study was funded by a grant from the key development projects of the Sichuan Provincial Science and Technology Plan, China (grant no. 2023YFS0045).

Supplementary Material

Supplementary Data S1

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