Abstract
Background
Schizophrenia poses significant challenges to the lives of individuals and to society. However, limited research has explored the relationship between stigma and quality of life in both patients with schizophrenia and their family caregivers. Furthermore, the potential mediating role of social support in the association between stigma and quality of life remains underexplored in this dyadic context. Therefore, this study aimed to analyze the mediating effect of social support on the relationship between stigma and quality of life in patients with schizophrenia and their family caregivers, using the actor-partner interdependence mediation model (APIMeM).
Methods
A total of 284 pairs of patients with schizophrenia and their family caregivers were recruited for this study. The Internalized Stigma of Mental Illness (ISMI) scale and the Affiliate Stigma Scale (ASS) were used to measure stigma in patients and their caregivers, respectively. Social support and quality of life were assessed using the Social Support Rating Scale (SSRS) and the World Health Organization Quality of Life-BREF (WHOQOL-BREF) scale. An actor-partner interdependence mediation model (APIMeM) was constructed to examine the actor and partner effects of stigma on quality of life, as well as the mediating role of social support.
Results
In terms of actor effects, patients’ (β=-0.385, p < 0.001)and family caregivers’ (β=-0.471, p < 0.001) stigma significantly affected their own quality of life.For the partner effects, patient’s stigma significantly affected family caregiver’s quality of life (β=−0.124, p = 0.002) and family caregiver’s stigma significantly affected patient’s quality of life (β=−0.125, p = 0.004). In the mediation model: patients’ stigma affected their own and family caregivers’ quality of life through their own social support (β=-0.092, p = 0.026; β=-0.017, p = 0.026); family caregivers’ stigma affected their own quality of life through their own and patients’ social support (β=-0.250, p < 0.001; β=-0.044, p = 0.028); family caregiver’s stigma affects patient’s quality of life through self and patient’s social support ( β=-0.056, p = 0.024; β=-0.234, p < 0.001).
Conclusions
Stigma significantly affected the quality of life of patients with schizophrenia and their family caregivers, with significant actor-partner effects between patients and family caregivers. In mediation analyses, patients’ stigma was indirectly associated with the QoL of both themselves and their caregivers through its association with their own social support, whereas caregivers’ stigma was indirectly associated with the QoL of both parties through its association with their own and the patients’ social support. Therefore, in future research on interventions to improve the quality of life of patients with schizophrenia and family caregivers, it is important to consider not only the role of one’s own sense of stigma, but also the mediating role played by social support in the impact of stigma on quality of life.
Keywords: Schizophrenia, Quality of life, Stigma, Social support, Actor-partner interdependence mediation model
Background
Schizophrenia is a prevalent and often severely disabling mental disorder that affects millions of individuals and their families worldwide [1, 2]. Individuals with schizophrenia often experience symptoms such as hallucinations and delusions [3], which not only affect their daily lives and social functioning, but also place a significant psychological burden and financial strain on their families and family caregivers [4]. While facing their schizophrenia, schizophrenics often suffer from prejudice and discrimination from society, which not only exacerbates their sense of stigma, but also weakens their sense of self-identity and makes them feel isolated in social situations [5].
The presence of schizophrenia stigma makes many schizophrenics reluctant to seek help or participate in social activities, which further aggravates their sense of isolation and helplessness [5].Studies have shown that stigma is closely related to the Quality of Life (QoL) of patients with schizophrenia, is one of the negative factors affecting patients’ QoL [6], and exacerbates the social pressures to which patients are subjected. Therefore, understanding the mechanism of the impact of stigma is crucial for improving QoL in patients with schizophrenia.
Family caregivers of persons with schizophrenia, who are usually their relatives, often face tremendous stress and challenges, and most family caregivers report fatigue and anxiety in caring for their patients. Not only do they have to take on the responsibilities of family caregivers, but they also have to cope with prejudice and misconceptions in society. The schizophrenia status of family caregivers directly affects their ability to provide support, which in turn affects the patient’s QoL [7], which highlights the interdependence between patients and family caregivers.
To gain a deeper understanding of this dichotomous interaction, family systems theory provides the core theoretical foundation for this study [8]. This theory emphasizes that the family is not merely a collection of independent individuals, but a dynamic system in which emotions and behaviors are highly interconnected. Under the prolonged stress of severe chronic mental illness such as schizophrenia, patients and caregivers are highly prone to developing a pathological co-dependent state. In this intense mutual entanglement, the psychological boundaries between the two parties gradually become blurred, and emotional experiences (such as stigma) and coping resources are no longer confined within the individual but instead undergo significant cross-contagion and transmission within the system [7]. The actor-partner interdependence model (APIM) provides an effective analytical framework.APIM is suitable for analyzing dichotomous data (e.g., patient-family caregiver), and is capable of simultaneously assessing the impact of an individual’s own characteristics on him/herself (the actor effect) and the impact of an individual’s characteristics on partner outcomes (partner effect). There have been some attempts to use APIM to explore the impact of stigma on QoL in patients with schizophrenia and their family caregivers, but the results are not yet fully consistent and the recognition of bidirectional effects is still lacking [9, 10]. A actor-partner mediation model study incorporating 161 pairs of patients with schizophrenia and their family caregivers showed that family caregiver’s sense of stigma significantly influenced patients’ QoL (family caregiver partner effect), while patients’ sense of stigma did not have a significant effect on family caregiver’s QoL (patient partner effect) [11]. However, another study based on Chinese cultural characteristics showed that the stigma of schizophrenia patients can exacerbate the damage to the overall reputation of the family through emotional transmission, which in turn affects the QoL of the whole family [12]. These conflicting findings suggest that the complexity of the mechanisms by which stigma acts between people with schizophrenia and their caregivers needs to be further investigated.
Meanwhile, social support, recognized as a key protective factor affecting mental health and QoL, is crucial for relieving stress and coping with stigma [13]. Good social support can not only effectively alleviate the stigma of schizophrenia for patients and their family caregivers, but also enhance their ability and confidence to cope with the schizophrenia [6]. It has been shown that patients with schizophrenia who have a good social support system have significantly higher QoL than those with a deprived support system [14]. In addition, social support mediates depression and QoL in patients with schizophrenia [15]. However, how social support affects the QoL of both parties in the patient-family caregiver dichotomy of schizophrenia through actor and partner effects, and whether it plays a mediating role between stigma and QoL is currently being explored based on the actor-partner interdependence mediation model ( APIMeM) to explore the role of social support in this interaction is relatively scarce.
Based on this, the necessity and value of this study lie in the following aspects: (1) Guided by family systems theory, this study attempts to integrate stigma, social support, and quality of life within the Actor-Partner Interdependence Mediation Model (APIMeM) framework, thereby offering a methodological approach to exploring the mechanisms through which stigma may influence dyadic quality of life; (2) By considering the characteristics of pathological co-dependence within the context of Chinese family-centered culture, this study seeks to clarify and respond to previous controversies in the literature regarding the partner effects of stigma; (3) This study explores the actor and partner mediating pathways of social support within the dyadic system, thereby providing preliminary empirical evidence to inform future efforts aimed at interrupting the internal vicious cycle in families affected by schizophrenia and developing family-centered, dyadic psychological intervention strategies.
Methods
Participants and study design
This study adopted a cross-sectional design. Using purposive sampling, we recruited dyads of inpatients diagnosed with schizophrenia and their primary caregivers from Beijing Huilongguan Hospital during the period from November 2023 to January 2025. To enhance sample representativeness, key clinical characteristics, including illness severity and functional status, were taken into account in the sampling procedure to ensure a certain degree of sample heterogeneity.Inclusion criteria: (1) meeting the diagnostic criteria for schizophrenia in the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5); (2) between the ages of 18 and 65 years old; (3) having a middle school or higher Cultural level, no Chinese reading and writing disabilities, and able to cooperate with the completion of various scales. Exclusion criteria: (1) having a consciousness disorder or suffering from a serious organic disease; (2) having a reading comprehension or communication disorder; (3) having a serious cognitive deficit; (4) having a low level of intelligence; (5) suffering from other psychotic disorders or personality disorders; and (6) having a history of substance abuse, such as drugs or alcohol, (except tobacco).
The sample size for this cross-sectional study was estimated using the formula for cross-sectional surveys: n=[Zα/22×p×(1-p)]/δ2, With α = 0.05, Zα/2=1.96, and p = 78.3% (the prevalence of stigma among caregivers of individuals with schizophrenia, based on a previous study [16] ), the allowable error δ was set at 0.1×p. The calculated sample size was 107 dyads. Considering a 20% rate of invalid data, at least 129 dyads were required. However, given that Structural Equation Modeling typically requires a minimum sample size of 200, we aimed to recruit 300 dyads of patients with schizophrenia and their caregivers.
Data collection
Data were collected by three graduate students in psychology and one psychiatrist in the inpatient ward of Huilongguan Hospital in Beijing. The present study employed self-report measures. Prior to data collection, the four research assistants (three graduate students in psychology and one psychiatrist) participated in a standardized training protocol to ensure procedural uniformity. The training encompassed: (a) review of eligibility criteria; (b) standardization of scripted instructions; (c) specification of questionnaire administration procedures (e.g., independent responding, prohibition of discussion, adherence to first instinct); and (d) contingency plans for unexpected events. Following the training, a role-playing exercise was conducted to establish consistency among collectors regarding item comprehension and responses to participant inquiries.
If both the patient and his/her family caregiver were present, they were asked to fill out the questionnaire separately and it was collected on the spot. If the family caregiver was not present, the questionnaire was completed when he/she came to visit the hospital. Prior to data collection, approval was obtained from the Ethics Committee of Beijing Huilongguan Hospital [2025-75-Science], and all subjects signed an informed consent form. The researcher explained the purpose of the study in detail to the patients with schizophrenia and their primary family caregivers, and questionnaires were administered to individuals who agreed to participate. When completing the questionnaire, both parties answered according to their first response without discussing with each other. A total of 300 pairs of individuals with schizophrenia and their family caregivers participated in this study, of which 284 pairs completed the survey (completion rate: 94.667%). The questionnaire took approximately 10–15 min to complete; upon completion, participants were given the appropriate gift (around 5 yuan).
Instruments
Consent for the use of tools in this study was obtained from the authors of previous studies.
Demographic characteristics of the inpatient-caregiver dyads for schizophrenia.
A questionnaire was used to collect general and clinical information about the participators, including their age, gender, family registry, marital status, educational level, and relationship between the patient and family caregiver.
Internalized Stigma of Mental Illness Scale
The Internalized Stigma of Mental Illness Scale (ISMI) was developed by Ritsher et al. in 2003 and validated by Chinese scholars to assess the internalized stigma of schizophrenia patients with good reliability and validity [17]. The scale consists of the alienation factor, stereotypical identity factor, social withdrawal factor, discrimination experience factor, and stigma resistance factor, and adopts a Likert 4-point scale ranging from 1 (strongly disagree) to 4 (strongly agree), with a standardized scoring using a mean score (standardized score=total score/entry), where the higher the score indicates that the patient’s degree of stigma is higher, and a standardized score of > 2.0 represents a sense of stigma. The internal consistency coefficient of the scale was 0.922.
Affiliate Stigma Scale
The Affiliate Stigma Scale (ASS) was developed by Hong Kong scholars Mak et al. [18], which is mainly used to assess the sense of guilt of family members of patients with psychotic disorder. The scale consists of 22 entries, including 3 dimensions of cognitive, affective and behavioral responses. A Likert 4-point scale ranging from 1 (strongly disagree) to 4 (strongly agree) was used, with a standardized scoring using a mean score (standard score = total score/entry), with higher scores indicating a higher degree of stigma for the patient, and a standard score of > 2.0 representing a sense of stigma. The total Cronbach’s alpha coefficient of this scale was 0.94, which is the most widely used scale to measure the sense of guilt associated with family members of patients with schizophrenia [19].
Social Support Rating Scale
The Social Support Rating Scale (SSRS) was developed by Chinese scholar Xiao Shuiyuan in 1986 and revised in 1990 with good reliability and validity [20]. The scale has 10 entries, including three dimensions of objective support (3 entries), subjective support (4 entries), and utilization of social support (3 entries), of which questions 1–4, 8–10, and the A, B, C, D, and E sub-entries of question 5 were scored on a Likert 4-point scale (ranging from 1 to 4); and questions 6 and 7 were answered by selecting Questions 6 and 7 were answered by choosing “no source” for 0 points, and choosing “source” for points based on the number of sources. The sum of the scores for each item is the total score for the scale, with higher scores indicating a higher level of social support received by the participant. The internal consistency coefficient of the scale was 0.896, indicating its high reliability [21].
World Health Organization Quality of Life - BREF
The World Health Organization Quality of Life-Based Rating Scale (WHOQOL-BREF) is used to measure an individual’s quality of life, with a total of 26 entries, including two overall assessments of total health status and quality of life and four dimensions: physical (7 entries), psychological (6 entries), social relationships (3 entries) and environmental (8 entries). A 5-point Likert scale ranging from 1 (very dissatisfied) to 5 (very satisfied) was used, and several dimensions were totaled into a scale total score, with higher scores representing better quality of life. It has good reliability and validity in the schizophrenia population, and the internal consistency coefficient of the scale is 0.847 [22].
Statistical analysis
The data collected were analyzed using Statistical Package for the Social Sciences (SPSS) Version 26.0 and Analysis of Moment Structures (AMOS) Version 24.0. Descriptive statistics and correlation analyses were performed using SPSS to analyze the general and clinical information of the subjects and the data measured by the persons with schizophrenia and their family caregivers, and to check whether the variables belonged to normally distributed data. Because AMOS structural equation modeling has the advantage of statistical comparison and model validation, AMOS structural equation modeling was used to determine the actor-partner interdependence effect of stigma on the QoL of people with schizophrenia and their family caregivers and the mediating effect of social support.
Adiabatic fit indices and assessed model fit were used, including chi-square tests (χ2), degrees of freedom (df), root mean square error of approximation (RMSEA), and goodness-of-fit index (GFI). Incremental fit indices include comparative fit index (CFI), normalized fit index (NFI), and incremental fit index (IFI) [23]. Finally, Bootstrap in AMOS was used to validate the statistical significance and mediation effects of the paths in the structural equation modeling, set to 5000 times.
Results
Demographic characteristics of schizophrenic patients and their family caregivers
As shown in Table 1: the age of the schizophrenic patients was 45.535 ± 12.470years, and the age of the family caregivers was 52.736 ± 11.076 years; most of the relationships between the two were parents and siblings.
Table 1.
Demographic characteristics of schizophrenic patients and their family caregivers (n = 284 pairs)
| Variables | Classify | Group/n (%) | |
|---|---|---|---|
| Schizophrenic group | Family caregiver group | ||
| Gender | Male | 145(51.056%) | 160(56.338%) |
| Women | 139(48.943%) | 124(43.662%) | |
| Age | 18–30 | 44(15.493%) | 12(4.225%) |
| 31–40 | 60(21.127%) | 23(8.099%) | |
| 41–50 | 48(16.901%) | 81(28.521%) | |
| 51and above | 132(46.479%) | 168(59.155%) | |
| Educational level | Junior middle school | 60(21.127%) | 71(25.000%) |
| Junior high school | 76(26.761%) | 81(28.521%) | |
| Junior college education | 46(16.197%) | 60(21.127%) | |
| Undergraduate | 88(30.986%) | 56(19.718%) | |
| Postgraduate | 14(4.930%) | 16(5.634%) | |
| Family registry | Urban | 223(78.521%) | 221(77.816%) |
| Rural | 61(21.479%) | 63(22.184%) | |
| Relationship | Father and mother | 105(36.972%) | |
| Spouse | 46(16.197%) | ||
| Sons and daughters | 25(8.803%) | ||
| Siblings | 108(38.028%) | ||
| Marital status | Single | 162(57.042%) | 24(8.451%) |
| Married | 70(24.648%) | 254(89.437%) | |
| Bereaved of one’s spouse | 2(0.704%) | 2(0.704%) | |
| Divorcee | 50(17.606%) | 4(1.408%) | |
Differences and correlational analysis of stigma, social support and quality of life among schizophrenic patients and their family caregivers
As shown in Table 2, patients with schizophrenia had lower social support and QoL than their family caregivers (29.972 vs. 32.285, p < 0.001; 80.405 vs. 83.666, p < 0.001), whereas there was no significant difference between the two in the scores of other scales. In addition, Peason’s correlation analysis showed that the correlations ranged from − 0.672 to 0.939, with most of the variables showing high correlation coefficients. There was a significant negative correlation between stigma and social support and quality of life, while there was a significant positive correlation between social support and quality of life.
Table 2.
Differences and correlational analysis of stigma, social support and quality of life among schizophrenic patients and their family caregivers (n = 284 pairs)
| M | SD | t | A | B | C | D | E | F | |
|---|---|---|---|---|---|---|---|---|---|
| A | 29.972 | 8.957 | −8.852*** | 1 | |||||
| B | 32.285 | 7.782 | 0.871*** | 1 | |||||
| C | 2.176 | 0.450 | −1.893 | −0.635*** | −0.593*** | 1 | |||
| D | 2.207 | 0.572 | −0.672*** | −0.674*** | 0.885*** | 1 | |||
| E | 80.405 | 22.380 | −6.722*** | 0.868*** | 0.800*** | −0.843*** | −0.837*** | 1 | |
| F | 83.666 | 23.818 | 0.809*** | 0.842*** | −0.819*** | −0.893*** | 0.939*** | 1 |
A = Patient social support, B = Family caregiver social support, C = Patient stigma, D = Family caregiver stigma, E = Patient quality of life, F = Family caregiver quality of life
***, p < 0.001
Given the substantial correlations among study variables, we assessed multicollinearity before constructing the structural equation model. The variance inflation factor was employed, revealing that VIF values for all predictor variables ranged from 4.372 to 5.420. Notably, the VIF for caregivers’ quality of life was 5.420, slightly exceeding the conventional cutoff of 5. This elevation is attributable to the expected interdependence between actor and partner variables (i.e., caregivers’ and patients’ quality of life) inherent in dyadic data. In summary, no severe multicollinearity was detected, confirming the robustness of subsequent analyses.
Test of measurement model
A structural equation model was constructed based on the actor-partner interdependence mediation model to analyze the relationships among stigma, social support, and quality of life (QoL) in patient-caregiver dyads. A chi-square difference test revealed a significant difference between the constrained model and the original model (χ² = 30.829, p < 0.001), indicating that the actor and partner effects were not equal [23]. The final model in this study was a saturated model, with zero degrees of freedom and a χ² value of zero. Consequently, the fit indices (CFI, GFI, NFI, IFI) were necessarily equal to 1 [24]. Given that traditional fit indices cannot assess the adequacy of a saturated model, model evaluation was primarily based on the significance and direction of the path coefficients.
A actor-partner interdependence mediation model of stigma, social support, and quality of life among schizophrenia patients and their family caregivers
The results of actor-partner interdependence effects of stigma and social support on quality of life (QoL) for schizophrenia patients and their family caregivers are shown in Table 3 and Fig. 1. In terms of direct effects: The actor effects of stigma on QoL were significant for both schizophrenia patients and their family caregivers (β=−0.385, p < 0.001; β=−0.471, p < 0.001); in terms of partner effects: The partner effect of stigma on QoL for schizophrenia patients and their family caregivers was significant (β=−0.124, p = 0.002; β=−0.125, p = 0.002). In terms of indirect effects: The actor effects of stigma on social support for both schizophrenia patients and their family caregivers were significant (β=−0.198, p = 0.033; β=−0.668, p < 0.001); family caregivers stigma significantly affects the partner effect of social support (β=−0.503, p < 0.001), while the partner effect of stigma among schizophrenia patients on social support was not significant (β=−0.007, p = 0.944). Additionally, the actor effect of social support on QoL was significant for both schizophrenia patients and their family caregivers (β=0.465, p < 0.001; β=0.375, p < 0.001); the partner effect of social support on QoL was significant for both schizophrenia patients and their family caregivers (β=0.084, p = 0.030; β=0.088, p = 0.019).
Table 3.
Effect coefficients for hypothetical model (n = 284 pairs)
| Trails | β | t | p |
|---|---|---|---|
| Patient Stigma - Patient Social Support | −0.198 | −2.129 | 0.033 |
| Patient Stigma-Family Caregiver Social Support | −0.007 | −0.070 | 0.944 |
| Family Caregiver Stigma-Patient Social Support | −0.503 | −5.413 | < 0.001 |
| Family Caregiver Stigma - Family Caregiver Social Support | −0.668 | −7.098 | < 0.001 |
| Patient Stigma - Patient Quality of Life | −0.385 | −9.442 | < 0.001 |
| Patient Stigma - Family Caregiver Quality of Life | −0.124 | −3.163 | 0.002 |
| Family Caregiver Stigma-Patient Quality of Life | −0.125 | −2.864 | 0.004 |
| Family Caregiver Stigma - Family Caregiver Quality of Life | −0.471 | −11.261 | < 0.001 |
| Family Caregiver Social Support - Family Caregiver Quality of Life | 0.375 | 10.110 | < 0.001 |
| Family Caregiver Social Support-Patient Quality of Life | 0.084 | 2.175 | 0.030 |
| Patient Social Support - Patient Quality of Life | 0.465 | 11.906 | < 0.001 |
| Patient social support - Family Caregiver Quality of Life | 0.088 | 2.350 | 0.019 |
Fig. 1.
Actor-partner interdependence mediation model of stigma, social support and quality of life for patients with schizophrenia and their family caregivers. CG, caregiver; PT, patient
The results of the mediation effect analysis are shown in Table 4: In terms of actor effect (self stigma-self QoL), both patients and family caregivers exhibited significant actor-actor indirect effects (β=−0.092, p = 0.026; β=−0.250, p < 0.001), the partner-partner indirect effect for family caregivers was significant (β=−0.044, p = 0.028), while the partner-partner indirect effect for patients was not significant (β=-0.001, p = 0.886); in terms of partner effects (perceived stigma of others-self QoL): both patients and family caregivers exhibited significant actor-partner indirect effect (β=-0.056, p = 0.024; β=-0.017, p = 0.026);and the partner-actor indirect effect of patients was significant (β=-0.234, p < 0.001), but the indirect effect of family caregiver partner-actor was not significant (β=-0.002, p = 0.946).
Table 4.
Actor-partner interdependence mediation effects of stigma, social support and quality of life in patients with schizophrenia and their family caregivers (n = 284 pairs)
| Trails | β | SE | 95% CI | p |
|---|---|---|---|---|
| Patient Stigma - Patient Social Support - Patient Quality of Life | −0.092 | 0.043 | −0.178~ -0.010 | 0.026 |
| Patient Stigma - Family Caregiver Social Support - Patient Quality of Life | −0.001 | 0.010 | −0.021 ~ 0.018 | 0.886 |
| Family Caregiver Stigma - Family Caregiver Social Support - Family Caregiver Quality of Life | -0.250 | 0.043 | −0.341~ -0.172 | < 0.001 |
| Family Caregiver Stigma - Patient Social Support - Family Caregiver Quality of Life | -0.044 | 0.023 | −0.098~ -0.005 | 0.028 |
| Family Caregiver Stigma - Family Caregiver Social Support - Patient Quality of Life | -0.056 | 0.028 | −0.117~ -0.008 | 0.024 |
| Family Caregiver Stigma - Patient Social Support - Patient Quality of Life | -0.234 | 0.047 | −0.338~ -0.147 | < 0.001 |
| Patient Stigma - Patient Social Support - Family Caregiver Quality of Life | -0.017 | 0.011 | −0.048~ -0.001 | 0.026 |
| Patient Stigma - Family Caregiver Social Support - Family Caregiver Quality of Life | -0.002 | 0.038 | −0.076 ~ 0.070 | 0.946 |
Discussion
In the study of QoL in schizophrenia, most of the traditional studies focus on the negative impact of stigma on patients’ QoL [25]. The present study not only focuses on the negative impact of stigma, but also adopts the actor-partner interdependence mediation model to investigate in depth the reciprocal impact of stigma between patients with schizophrenia and family caregivers as well as how social support plays a mediating role in it.The present study expands the understanding of the complex relationship between stigma and QoL, and provides new perspectives and theoretical frameworks for future research.
The present study found that both patients with schizophrenia and family caregivers have a strong sense of stigma, which may stem from social misunderstanding, prejudice, and fear of schizophrenia. The present study was conducted in China, a society often characterized as collectivist in the literature. In such cultural contexts, family caregivers may conceal their loved ones’ illnesses to avoid social rejection, and this cultural tendency may contribute to caregivers experiencing negative evaluations from society and developing a sense of stigma similar to that of patients [26]. However, it is important to note that cultural orientation was not directly measured in this study, and these interpretations remain speculative pending empirical validation. There was no significant difference in the stigma scores between patients and family caregivers, which suggests that the stigma pressure felt by family caregivers during the caregiving process is comparable to the degree of stigma perceived by the patients themselves, and that family caregivers may be subjected to negative evaluations from society due to the patient’s relationship, resulting in a stigma similar to that of the patient’s, which suggests that we need to comprehensively consider both the patient’s and the family caregiver’s psychological health and social support [27].
In this study, there was a significant difference between the QoL of patients with schizophrenia and the QoL of family caregivers, which is consistent with the results of previous studies [28]. Usually family caregivers have lower QoL, especially in caring for people with schizophrenia, family caregivers face greater emotional burden and psychological stress [10, 28]. However, this study found that the QoL of family caregivers was significantly higher than that of patients with schizophrenia, which may be related to the selection of subjects and the study design of this study, the patients in this study were hospitalized, which had relatively less impact on family caregivers, and the family caregivers were provided with effective social support, which reduced the burden of caregiving, and thus enhanced the QoL [29, 30]. There was a significant correlation between patients’ QoL and their own social support and stigma, as well as family caregivers’ social support and stigma. This suggests that, on the one hand, the patient’s sense of stigma may increase his or her psychological burden, the patient’s social support may alleviate the negative effects of stigma by providing emotional support, and both play an important role in the formation of the patient’s QoL [30]. On the other hand, family caregiver’s social support and stigma had a significant effect on patients’ QoL, further demonstrating the interdependence between patients and family caregivers. Family caregivers’ social support and stigma may affect their supportive and caring behaviors towards patients, which in turn affects patients’ emotional and psychological states [31, 32].
The results of the present study showed that the impact of stigma on QoL, both patients with schizophrenia and family caregivers showed significant actor and partner effects. First, in terms of the actor effect, both patients’ and family caregivers’ sense of stigma affects their own QoL. Patients with higher sense of stigma tend to internalize the negative evaluation of their schizophrenia by the society and form a negative self-perception, which is accompanied by anxiety, depression and other emotional disturbances, and the patients will reduce their interactions with other people and gradually become disconnected from the society, which further affects their QoL [32, 33]. The sense of stigma may also affect patients’ treatment adherence, as patients are reluctant to seek professional help or take medication on time for fear of being known as schizophrenia, thus affecting treatment effectiveness and QoL [34]. In traditional Chinese culture, schizophrenia is often attributed to family “cause and effect” and are considered to be the family’s “misfortune” or “punishment”, and family caregivers are often expected to take unconditional responsibility for care. The dual pressures of the patient’s schizophrenia and traditional culture can increase the family caregiver’s sense of stigma and create a greater emotional burden in the caregiving process, which significantly affects their QoL [12].
Second, in terms of partner effects, both people with schizophrenia and their family caregivers’ feelings of stigma affect each other’s QoL. Differences in QoL are not only directly related to one’s own feelings of stigma, but also closely related to each other’s interactions, which is in line with the findings of a previous study [12, 35]. Stigma is an important factor influencing the QoL of people with schizophrenia and their family caregivers [36]. As a recurrent schizophrenia, patients with schizophrenia often require long-term treatment and care, a process in which patients and family caregivers gradually deepen their perceptions and experiences of stigma [37]. When patients feel stigma, they may be reluctant to accept treatment or family caregiver’s advice due to resistance, and family caregivers may be in a caregiving dilemma as a result, feeling frustrated and helpless, which in turn affects their QoL [38].At the same time, family caregivers’ stigma is often accompanied by negative feelings about schizophrenia (stigma, anxiety, and stress, etc.), which can directly affect caregiving attitudes and behaviors toward the patient, and such negative caregiving attitudes can cause the patient to feel unappreciated and unaccepted, which in turn affects his or her mental health and QoL [39]. Therefore, considering patients’ and family caregivers’ stigma and developing certain interventions to reduce its negative impact and improve patients’ and family caregivers’ psychological status are essential to improve patients’ and family caregivers’ QoL.
The mediating role of social support is also statistically associated with the quality of life of patients with schizophrenia and their caregivers. First, regarding patients’ quality of life, in terms of the actor effect, the data showed that lower stigma in patients was associated with higher social support and higher quality of life. This pattern suggests that lower stigma may enhance patients’ self-acceptance and social interactions, thereby contributing to better quality of life [40]. Additionally, higher levels of social support provide patients with emotional support and practical assistance, which may help mitigate the negative effects of stigma and improve quality of life [41]. Regarding the partner effect on patients’ quality of life, the results showed that lower stigma in caregivers was associated with higher social support in both patients and caregivers, as well as higher quality of life in patients. This finding suggests that caregivers’ psychological state and social cognition regarding the patient’s illness play a critical role in patients’ quality of life. When caregivers experience lower stigma, they may transmit positive emotions to patients, leading to reduced psychological stress in patients, who may then become more willing to interact with others and seek social support [39]. Given that China is often described as having a collectivist cultural orientation, family and social face may be particularly emphasized, which could influence how stigma is experienced and managed [12]. Nevertheless, cultural values were not directly assessed in this study, and further research is needed to empirically examine the role of cultural factors. Therefore, people with schizophrenia and their family caregivers may avoid discussing or admitting the disorder publicly due to high levels of stigma, and this avoidance behavior may exacerbate the patient’s sense of isolation and reduce their chances of obtaining social support [12]. This will directly affect their access to help and ultimately their QoL due to reduced contact and interaction with the outside world [40, 42]. In summary, stigma in both patients and caregivers is associated with social support and patients’ quality of life, suggesting that stigma may be linked to patients’ quality of life through its association with patients’ social support. Therefore, effective interventions should not only help patients reduce stigma but also attend to caregivers’ mental health and emotional burden, jointly promoting improvements in patients’ quality of life and social functioning.
Second, regarding caregivers’ quality of life, in terms of the actor effect, caregivers’ stigma was associated with their own quality of life through its association with their own social support. The results showed that lower stigma in caregivers was associated with higher social support and higher quality of life, which is consistent with previous findings [41]. Social support plays a crucial role for family caregivers, especially in the caregiving process of patients with schizophrenia. Family caregivers who can get rid of their sense of stigma are more likely to seek support from family, friends, community, etc., thus reducing caregiving stress and enhancing their QoL [28]. In terms of family caregiver’s partner effect, patient’s social support is affected by patient’s and family caregiver’s sense of stigma, which in turn affects family caregiver’s QoL, which is manifested in the fact that the lower the sense of stigma of the patient or the family caregiver is, the higher the patient’s social support is, and the higher the family caregiver’s QoL is. Stigma is not only a psychological burden for family caregivers themselves, but also indirectly acts on family caregivers’ QoL by affecting the patient’s social support system.The patient’s social support is crucial for family caregivers’ emotional support and stress management. When the patient receives more support, the family caregiver’s burden is reduced, which enhances his or her QoL [42]. In summary, the mediating role of social support in both dyadic members is statistically associated with caregivers’ quality of life. Therefore, intervention strategies should focus on simultaneously reducing stigma in both patients and caregivers and strengthening their social support networks to promote quality of life for both parties.
The results of this study showed that across all pathways in the model (including the effects of stigma on social support and quality of life, as well as the effects of social support on quality of life), the effect sizes of actor effects were consistently larger than those of partner effects. This significant discrepancy between actor and partner effect sizes suggests that, in the clinical care context of hospitalized patients with schizophrenia in northern China, the psychological burden and coping mechanisms associated with the illness may exhibit highly internalized characteristics. Specifically, individuals’ subjective experiences of stigma and their access to social support were more closely associated with their own quality of life, while their influence on the dyadic partner was relatively limited [43]. Therefore, this study makes a cautious inference regarding the mediating role of social support within the dyadic model: the role of social support differs between actor and partner pathways, and it may tend to function as an indirect pathway through which stigma is transmitted to impaired quality of life, rather than serving as a core mechanism in actor-partner interdependence.
Based on the findings of this study, the following specific clinical practice recommendations are proposed [8]: First, given the significant actor and partner effects identified in this study, interventions should target both patients and family caregivers simultaneously rather than focusing on either party in isolation. Clinicians are encouraged to implement family-based interventions to address the reciprocal influence of stigma and social support on the quality of life of both dyadic members.Second, the results of this study indicate that stigma is significantly associated with the quality of life of both patients and caregivers, as reflected through actor and partner pathways. Psychoeducational programs should be designed to help both parties understand the nature of stigma, develop coping strategies, and reduce self-stigma and public stigma associated with schizophrenia.Finally, social support was found to play a statistical mediating role in the relationship between stigma and quality of life. Clinicians should assess and strengthen the social support resources available to patients and caregivers, including family support, peer support groups, and community resources. Interventions that enhance mutual support within the dyad may be particularly beneficial.
There are several limitations to this study. First, the study utilized cross-sectional data and therefore could not draw definitive conclusions regarding causality. Although a significant correlation between stigma and QoL was found, the causal pathway between stigma and QoL could not be determined due to the lack of longitudinal data. Second, the subjects in this study were mainly hospitalized patients, and the sample may not have been selected in a representative manner because hospitalized patients are usually more severely ill, which may lead to limited external validity of the results and may not be fully representative of all patients with schizophrenia.Finally, the subjects in this study were all recruited from China. Although we have discussed the findings within the context of collectivist cultural characteristics, cultural orientation was not directly measured in this study. There may be significant differences in the perception and manifestation of stigma across cultures, and thus the generalizability of the study results may be limited and cannot be directly generalized to populations from other cultural backgrounds. Future research should incorporate validated measures of cultural values (e.g., individualism-collectivism scales) to empirically examine the role of cultural factors. These limitations suggest that future studies should adopt a longitudinal design to explore causality more comprehensively; meanwhile, the sample should be expanded to cover patients with different conditions and cultural backgrounds to improve the external validity and generalizability of the study.
Conclusions
This study revealed the actor and partner effects of stigma on QoL among patients with schizophrenia and their caregivers, and confirmed the key mediating role of social support. Specifically, patients’ stigma was indirectly associated with the QoL of both themselves and their caregivers through its association with their own social support, whereas caregivers’ stigma was indirectly associated with the QoL of both parties through its association with their own and the patients’ social support. These findings suggest that stigma and social support represent joint intervention targets for enhancing the QoL of this population. Integrating a dyadic perspective into psychological support and social network construction should therefore be a core component of clinical rehabilitation strategies.
Acknowledgements
The authors would like to thank the participants who generously contributed their time, energy, and trust to this study. Without them, this work would not have been possible. We are grateful for the assistance provided by Beijing Hui Long Guan Hospital and for the collaborative efforts of all authors.
Authors’ contributions
Honglei Yang, Kang Xie and Zhenyue Liu: Writing – original draft, Methodology, Investigation, Formal analysis, Data curation, Reviewed the manuscript.Xinyi Ge, Qunshan Wang: Methodology, Investigation, Formal analysis, Data curation, Reviewed the manuscript.Xianyun Li and Botao Ma：Writing – review & editing, Data curation, Reviewed the manuscript.
Funding
Beijing Municipal Administration of Hospitals Incubating Program, (Grant No. PX2020077); the Capital’s Funds for Health Improvement and Research, (Grant No. 2020-1-2131); Development and Psychometric Validation of a Vibration Imaging-Based Model for Identifying Emotional Problems in Children and Adolescents (Grant No.BRWEP2024W072130110).
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethics approval and consent to participate
This study was performed in line with the principles of the Declaration of Helsinki. This study was approved by the Research Ethics Committee of Beijing Huilongguan Hospital [2025-75-Science]. Informed consent was obtained from all participants prior to their inclusion in the study. Participants were provided with full information about the study’s purpose, procedures, and their rights, ensuring voluntary participation.
Consent for publication
The findings described in this document have not been previously published, and none of the authors are currently submitting them to another publisher for consideration.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Honglei Yang, Kang Xie and Zhenyue Liu contributed equally to this work.
Xianyun Li and Botao Ma contributed equally to this work.
Contributor Information
Xianyun Li, Email: xianyunli@126.com.
Botao Ma, Email: 13683308518@163.com.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
No datasets were generated or analysed during the current study.