Affiliate stigma and caregiving burden among family caregivers of persons with schizophrenia in rural China

Abstract

Background:

Although stigma and caregiving burden are important in relation to mental health recovery, few studies have been conducted on affiliate stigma and caregiving burden among family caregivers of persons with schizophrenia (FCPWS) in rural China.

Aims:

This study aimed to examine the severity level of affiliate stigma and caregiving burden, and identify the correlates among FCPWS in rural China.

Methods:

A mental health survey was conducted (N = 253 FCPWS) in Xinjin county, Sichuan province, China. Affiliate Self-Stigma Scale and Zarit Burden Interview Short Form were used. The regression analysis was performed to explore the correlates of stigma and burden.

Results:

Most FCPWS reported experiencing high and severe level of affiliate stigma (78.66%) and caregiving burden (95.26%). Family caregivers who were middle aged, unemployed, with high caregiving burden and low quality of life (QoL), showed more severe affiliate stigma. Family caregivers who were female, older, with low income, high affiliate stigma and low QoL, experienced greater caregiving burden.

Conclusions:

The large majority of FCPWS in rural China experienced severe affiliate stigma, caregiving burden and poor QoL. It is crucial to develop culture-specific anti-stigma interventions to reduce caregivers’ stigma and caregiving burden, and improve QoL. Specific risk factors of family caregivers’ affiliate stigma and caregiving burden should be considered for development of health policy and community-based mental health services.

Keywords

Affiliate stigma caregiving burden family caregivers rural China schizophrenia stigma by association

Introduction

Stigmatization of people with mental illnesses, as one of the foci in social psychiatry’s research, not only exerts adverse effects on persons with schizophrenia (PWS), but also has significant negative consequences on their family caregivers (P. W. Corrigan et al., 2006), such as affiliate stigma, which refers to the prejudice and discrimination against those associated with persons with mental illness (P. Corrigan, 2004; Larson & Corrigan, 2008). For example, with affiliate stigma, family caregivers of persons with schizophrenia (FCPWS) may see stigmatization owing to their kinship with patients (P. W. Corrigan & Miller, 2004). Affiliate stigma, one of four main types of mental health-related stigma, can have severe consequences on FCPWS (Thornicroft et al., 2022), such as: (1) negatively influencing self-esteem, ability to keep friends, obtaining a job or place to live, and acceptance by others (P. W. Corrigan & Miller, 2004; Phillips et al., 2002); (2) minimizing help-seeking behavior and reducing the care quality (Larson & Corrigan, 2008); and (3) encouraging negative coping strategies (Phillips et al., 2002).

A recent meta-analysis, which including twenty-two studies and 3,381 participants, identified the correlates of affiliate stigma among FCPWS. For socio-demographic traits, caregivers’ age, gender, education, relationship with PWS were associated with affiliate stigma (Shi et al., 2019). For psychosocial characteristics, stress, distress and caring burden were related to affiliate stigma (Shi et al., 2019). However, the findings are still limited because of a very small number of studies. The possible reasons may include: (1) caregivers’ outcomes are often reported as secondary to those of patients in trials (Sin & Norman, 2013); and (2) most caregivers are not recipients of health and/or social care services, and hence their needs are not considered as priority (Kuipers, 2010).

In addition to affiliate stigma, many FCPWS who provide significant services at home to their ill relatives, are experiencing severe subjective caregiving burden as well (Estrada-Fernández et al., 2022; Wan & Wong, 2019). The level of burden is significantly associated with caregiver’s socio-demographic characteristics, such as gender, education, marital state, family size, household income, and kinship types (Lindt et al., 2020; Peng, Chen et al., 2019; Ran et al., 2016; Sin et al., 2021). Additionally, caregivers’ perceived burden, which can threaten the physical, psychological, and emotional health of carers (Kim et al., 2012; Ran et al., 2016), may be highly correlated with psychological variables such as low quality of life (QoL) (García-Castro et al., 2020; Vadher et al., 2020). Evidence shows that caregiving burden may reduce the quality of caregiving which is a barrier of early treatment and rehabilitation care and a predictive factor of poorer long-term outcome of PWS (Ran et al., 2016).

Although affiliate stigma and caregiving burden are attracting increasing attention from the academic and clinical bodies, few studies on FCPWS’ affiliate stigma and caregiving burden have been conducted, especially in Low- and Middle-Income Countries (LMICs) including China (Ran et al., 2021). Additionally, with the special social, cultural and economic factors, the situation of affiliate stigma and caregiving burden in China may be worse than its Western counterparts (Ran et al., 2021; T. M. Zhang et al., 2019; Zhou et al., 2016). For example, since mental illness is considered as a taboo in Chinese cultural settings, the notion of mental illness being ‘genetic taint’ and a ‘bad seed’ may greatly influence the attitudes toward FCPWS and further increase affiliate stigma and caregiving burden (Ran et al., 2005). Moreover, FCPWS’ affiliate stigma and caregiving burden may be worse in Chinese rural areas due to deeply rooted traditional values, limited health resources, and financial adversity (Ran et al., 2017; Y. H. Yu et al., 2020). Further studies should be conducted on affiliate stigma and caregiving burden among FCPWS, especially in rural China (Sin et al., 2017; Y. Yu et al., 2017).

Therefore, this study aimed to: (i) explore the demographic features related to and severity level of affiliate stigma and caregiving burden; and (ii) identify the associations between affiliate stigma and caregiver burden with other psychological variables among FCPWS in a Chinese rural area.

Method

Participants

Data for this study were derived from the baseline mental health survey of FCPWS in October 2015 in Xinjin county, Sichuan province, China. This study recruited 253 FCPWS who were primary family caregivers of persons diagnosed with schizophrenia by International Classification of Diseases 10th Revision, aged 18 to 75 years old and living with and providing family care for their relatives. Details of this mental health survey have been described elsewhere (Ran et al., 2022; Wang et al., 2022). This study was approved by the University of Hong Kong Human Research Ethics Committee and all participants voluntarily signed informed consent.

Measurements

All the 253 participants completed the assessments either by themselves or by the assistance of independent and well-trained assessors (e.g. graduate, psychological counselor) who were not belonging to the research team.

Affiliate stigma

The 21-item Affiliate Self- Stigma Scale (ASSS) was used to measure the affiliate stigma of FCPWS (Chen et al., 2016; Lien et al., 2015; Zisman-Ilani et al., 2013). The Chinese version of the ASSS, measured on a 4-point Likert scale (1 = strongly disagree; 4 = strongly agree) has demonstrated good internal consistency (Cronbach’s a = .94) (Mak & Cheung, 2008). Higher scores indicate higher level of affiliate stigma. The cutoff point of ASSS was 43, which means if ASSS score was more than 43, then the severity level was regarded as high and severe (Hailemariam, 2015).

Caregiving burden

Family caregiver burden was measured by the 12-item Zarit Burden Interview Short Form (ZBI-SF) (Bédard et al., 2001). The ZBI-SF is rated on a 5-point Likert scale ranging from ‘never’ to ‘nearly always’. Its internal consistency coefficient was 0.88 in this study (Wang et al., 2022). The cutoff point of ZBI-SF was 19, which means if ZBI-SF score was more than 19, then the severity level was regarded as high and severe (J. Yu et al., 2019).

QoL

Family caregivers’ QoL was measured by the 26-item QoL scale developed by the WHOQOL Group (1995). The Chinese version of the 5-point scale, achieved internal consistency coefficient of 0.86 in this study (Wang et al., 2022).

Statistical analysis

T test and ANOVA analyses were performed to examine whether the ASSS and ZBI-SF scores differed by participants’ socio-demographic characteristics. A correlation matrix was computed to assess the bivariate association among the prominent variables. In this study, the generalized linear model (GLM) was utilized to examine the influencing factors on affiliate stigma and caregiving burden. As for the measurement of the influencing factors of affiliate stigma, three models were proposed: in Model 1, the associated variables only included the demographic variables; in Model 2-3, after adjusting the demographic covariates, caregiving burden and QoL were entered into the regression models stepwise. The three proposed models on caregiving burden were also tested: in Model 1, the associated variables only included the demographic variables; in Model 2-3, together with the demographic covariates, affiliate stigma and QoL were added into the model stepwise. Statistical significance was set at p value <.05. Data analysis was processed and verified by using SAS software, version 9.4.

Results

Demographic features of affiliate stigma and caregiving burden

In total, this study included 253 eligible FCPWS. Table 1 shows the descriptive analysis and correlation of demographic features with either affiliate stigma or caregiving burden. The male participants had a higher proportion than the female participants (52.57% vs. 47.43%). Most of the participants were married (83.40%), aged over 60 years old (54.94%), with a fulltime job (64.43%) and secondary educational level (71.54%). Many participants had less than 500 RMB income per month (49.01%), and were the spouse of the PWS (45.06%).

Table 1.

Sociodemographic characteristics, affiliate stigma, and caregiving burden of FCPWS.

Characteristics	N	%	ASSS				ZBI-SF
Characteristics	N	%	Mean	SD	t/F value	p	Mean	SD	t/F value	p
Sex					−1.12	.26			−2.62	.01**
Male	133	52.57	50.63	13.63			31.65	9.37
Female	120	47.43	52.58	14.02			34.59	8.49
Marital status					0.10	.92			0.42	.68
Non-married (e.g. single, devoiced, widowed)	42	16.60	51.76	14.77			33.60	9.46
Married	211	83.40	51.52	13.66			32.93	9.01
Employment					−2.13	.03*			−0.41	.68
With a fulltime job	163	64.43	50.28	14.81			32.87	9.22
Without a fulltime job (including unemployment and part-time job)	90	35.57	53.87	11.56			33.36	8.82
Relationship with caregivers					−1.29	.20			0.31	.76
Non-spousal (parents-children, siblings uncles, aunts)	139	54.94	50.56	14.71			33.20	9.78
Spousal	114	45.06	52.77	12.61			32.85	8.15
Age (years)					3.66	.03*			4.43	.01**
18–45	28	11.07	45.36	14.29			28.46	9.11
45–60	86	33.99	53.40	12.87			33.02	8.91
≧ 60	139	54.94	51.67	14.04			33.98	8.94
Education (years)					0.56	.57			0.13	.88
<6	56	22.13	52.80	11.68			33.04	8.62
6–9	181	71.54	51.42	14.49			33.14	9.21
>9	16	6.32	48.75	13.26			31.94	9.51
Income (per/month, RMB, 1RMB≈0.15USD)					0.91	.40			6.67	<.01**
<500	124	49.01	52.24	14.15			34.52	9.25
500–1,000	95	37.55	51.71	13.82			32.83	8.95
>1,000	34	13.44	48.65	12.57			28.26	7.00

Note. SD = standard deviation.

p < .05. **p < .01.

The affiliate stigma of FCPWS was different significantly as their different employment status (t = −2.13, p = 0.03) and age (F = 3.66, p = .03). The caregiving burden of FCPWS was different significantly as their different genders (t = −2.62, p = .01), ages (F = 4.43, p = .01) and incomes (F = 6.67, p < .01). The mean of QoL in FCPWS was 83.82 (SD: 10.80). The mean of QoL was significantly higher in male FCPWS (85.14, SD: 11.27) than that in female FEPWS (82.35, SD: 10.09) (t = 2.08, p = .04).

Severity level of affiliate stigma and caregiving burden among FCPWS

Most of FCPWS had high and severe level of affiliate stigma (n = 199, 78.66%). Additionally, most of participants reported high and severe level of caregiving burden (n = 241, 95.26%). Table 2 indicates the severity of affiliate stigma and caregiving burden of FCPWS.

Table 2.

Rate and severity of affiliate stigma, caregiving burden among FCPWS.

Variables	Low and moderate level		High and severe level
Variables	N	%	N	%
Affiliate stigma (ASSS score)	54	21.34	199	78.66
Caregiving burden (ZBI-SF score)	12	4.74	241	95.26

Note. High and severe level: ASSS score ⩾ 43 or ZBI-SF score ⩾ 19; low and moderate level: ASSS score < 43 or ZBI-SF score < 19.

Influencing factors of affiliate stigma of FCPWS

Table 3 shows the influencing factors associated with affiliate stigma among FCPWS. In the final model, the results of the linear regression analysis showed that affiliate stigma of FCPWS was significantly associated with caregiving burden (β = 0.71, SE = 0.09, p < .01), and QoL (β = −0.16, SE = 0.07, p = .03). The results indicated that FCPWS with higher caregiving burden and lower QoL were more likely to have higher level of affiliate stigma.

Table 3.

Hierarchical regression model on affiliate stigma.

Variables	Model 1			Model 2			Model 3
Variables	β	SE	p-Value	β	SE	p-Value	β	SE	p-Value
(Intercept)	57.37	5.48	<.01**	35.55	5.39	<.01**	50.40	8.61	<.01**
Male ref. female	−1.66	1.76	.35	0.56	1.56	.72	0.78	1.55	.62
Age	0.02	0.07	.73	−0.08	0.06	.22	−0.07	0.06	.27
Marriedref. non-married	1.18	2.51	.64	1.17	2.19	.59	1.25	2.18	.57
With fulltime jobref. without fulltime job	−3.45	1.84	.06	−3.22	1.60	.05	−3.21	1.59	.04*
Spousal Relationshipref. non-spousal	−2.77	1.84	.13	−2.37	1.61	.14	−2.59	1.60	.11
Education (years)	−0.11	0.29	.71	−0.28	0.26	.27	−0.22	0.26	.40
Income (per/month, RMB)	−0.003	0.001	.02*	−0.0004	0.001	.76	−0.0003	0.001	.78
Caregiving burden				0.78	0.09	<.01**	0.71	0.09	<.01**
Quality of life (QoL)							−0.16	0.07	.03*
R square	.05			.28			.29

p < .05. **p < .01.

Influencing factors of caregiving burden of FCPWS

Table 4 shows the influencing factors associated with caregiving burden among FCPWS. In the final model, the results of the linear regression analysis showed that caregiving burden of FCPWS was significantly associated with affiliate stigma (β = 0.28, SE = 0.04, p < .01) and QoL (β = −0.16, SE = 0.05, p < .01). There were significant links between the caregiving burden and gender (β = −1.98, SE = 0.96, p = .04), age (β = 0.13, SE = .04, p < .01), and income (β = −0.0024, SE = 0.0007, p < .01).

Table 4.

Hierarchical regression model on caregiving burden.

Variables	Model 1			Model 2			Model 3
Variables	β	SE	p-Value	β	SE	p-Value	β	SE	p-Value
(Intercept)	28.03	3.46	<.01**	10.23	3.63	.01*	25.11	5.48	<.01**
Male ref. female	−2.84	1.11	.01*	−2.33	0.97	.02*	−1.98	0.96	.04*
Age	0.13	0.04	<.01**	0.12	0.04	<.01**	0.13	0.04	<.01**
Marriedref. non-married	0.005	1.59	1.00	−0.36	1.38	.80	−0.25	1.35	.86
With fulltime jobref. without fulltime job	−0.30	1.16	.80	0.77	1.02	.45	0.68	1.00	.50
Spousal Relationship ref. non-spousal	−0.52	1.16	.66	0.34	1.02	.74	0.06	1.00	.95
Education (years)	0.22	0.18	.23	0.26	0.16	.11	0.30	0.16	.05
Income (per/month, RMB)	−0.004	0.0008	<.01**	−0.003	0.0007	<.01**	−0.0024	0.0007	<.01**
Affiliate stigma				0.31	0.04	<.01**	0.28	0.04	<.01**
Quality of life (QoL)							−0.16	0.05	<.01**
R square	0.12			0.33			0.37

p < .05. **p < .01.

Discussion

To the best of our knowledge, this is the first study to investigate the severity level of affiliate stigma and caregiving burden among FCPWS in rural China. Furthermore, this study should contribute to improve the understanding of affiliate stigma and caregiving burden and their respective influencing factors including both demographic and psychological factors in FCPWS. This study expands the knowledge and insight of mental health (e.g. affiliate stigma and caregiving burden) of FCPWS and provides evidence for future research and intervention to improve FCPWS’ mental wellbeing in rural China.

Affiliate stigma and caregiving burden among FCPWS

Compared with Western peers, Chinese FCPWS in this study reported a higher rate of high and severe level of affiliate stigma (78.66% vs. 56%) (Angermeyer et al., 2003). A higher rate of high and severe level of caregiving burden of FCPWS in rural China was also identified (95.26% vs. 67.43%) (Hailemariam, 2015). The possible reasons may be related to the traditional Chinese culture holding the negative belief toward mental illness, and its cultural values of ‘face concern’. For example, Chinese people tended to emphasize the biological roots of mental illness (Ran et al., 2005, 2021), and were likely to view mental illness as a result of bad thoughts and/or a lack of willpower (Ran et al., 2021). With the immersion of these prevailing thoughts in society toward people with mental illness (T. M. Zhang et al., 2019), plus lack of health necessities and investment, FCPWS may easily internalize the misbeliefs, and consequently have a high level of affiliate stigma and subjective caregiving burden (Que et al., 2019). Our results are also consistent with the findings in other Chinese studies on affiliate stigma and caregiving burden of FCPWS (Huang et al., 2019; Mak & Cheung, 2008, 2012). Further studies should explore the effectiveness of culture-specific anti-stigma interventions on reducing stigma of mental illness and caregiving burden in community.

Influencing factors of affiliate stigma

The results of this study showed that affiliate stigma was significantly associated with age of FCPWS, which is consistent with previous findings (Chang et al., 2017). We also found the significant association between FCPWS’s affiliate stigma and employment status, which is not consistent with a meta-analysis (Shi et al., 2019). The possible reasons may include: (1) anticipated discrimination and self-stigma of FCPWS can lead to insufficient motivation and effort to keep or find employment and can result in unemployment; and (2) affiliate stigma is a barrier to seeking healthcare, which can lead to untreated and worsened health conditions and subsequently to adverse occupational outcomes (e.g. sick leave, job loss) (Brouwers, 2020). Thus, mental health professionals should understand these risk factors of affiliate stigma and caregiving burden, and provide specific psychosocial interventions for FCPWS in a timely manner.

In the caregiving context, caregivers with affiliate stigma may perceive a greater sense of burden and strain in their caregiving because stigma might have distorted their views toward care-recipients and affect their relationships. It is well documented that caregivers’ sense of stigmatization because of their role and relation with the discredited individuals contributed the most to their feelings of burden (Li et al., 2022; Mak & Cheung, 2008). Caregivers with high levels of affiliate stigma are more likely to have a sense of shame and inferiority as a result of their association with the affected individuals. They may feel despondent and may feel their lives are only worthy in that they revolve around taking care of their relatives which increase their caring burden.

Consistent with the literature, this study found the significant association between affiliate stigma and QoL among FCPWS (Shi et al., 2019; Y. Zhang et al., 2018). One possible reason is related to FCPWS’ attitudes toward mental illness. For example, ‘face concern’ was shown to be particularly salient among Chinese community, and mental illness was regarded as a matter of ‘losing face’ (Ran et al., 2005, 2021). It represents the failure to fulfill the basic requirements in regarding of social position, which will be perceived as incompetence and results in losing trust, social isolation, and a sense of shame. Therefore, family members’ disclosure of their relatives’ disease (e.g. schizophrenia) was selective, and they kept secrets from other people to save their face (Mak & Cheung, 2008). It is important that this may influence their decision to seek out specific care services and wellbeing support. For example, a FCPWS holding severe affiliate stigma can hardly engage in seeking help (e.g. emotional support, health care service) from mental health care system, which further inserts adverse impacts on their QoL (Ran et al., 2021).

Influencing factors of caregiving burden

The results of this study showed that FCPWS’s caregiving burden was significantly associated with their gender, age, and income, which is in accordance with a substantial body of previous studies (Peng, Zhang et al., 2019; Ran et al., 2016; Sin et al., 2021). The possible reasons include that FCPWS’s caregiving burden may be related to poverty and social deprivation, higher rates of physical illness, and lower access to mental health services in rural areas (Ran et al., 2005). Moreover, family caregivers in rural China are known for self-sacrifice, considering their own needs after those of others, and even ignoring their own health concerns (Peng, Ma et al., 2022). It can be assumed that family caregivers with heavy caring burden in rural China possibly do not have time and ability to invest in their own physical and psychological care which are the salient ingredients of QoL. Further studies should be conducted in this area.

Study limitations

Several limitations of our study should be noted. First, stigma is a subjective internal rating that is difficult to externally validate. Participants in this study might have adjusted their responses to suggest fewer negative emotions. Further studies can use a mixed method research design to ensure the reliability of the study results. Second, factors concerning disease-related factors, such as patients symptom, length of the disease and caring, physical illness comorbidity, were not taken into consideration, which possibly influence the development of affiliate stigma and caregiving burden (Peng, Xing et al., 2022; Shi et al., 2019). Therefore, future studies should take these potential factors into account at the research and enhancing data collection and analysis process. Third, this study was a cross-sectional investigation, so longitudinal and qualitative studies should be conducted in the future to gain a deeper understanding of affiliate stigma and caregiving burden of FCPWS in rural China and their etiological inter-relationships. Fourth, the sample size was relatively small, and all participants were recruited at Xinjin county, which might constrain the generalizability of the findings. Future studies with large sample size and more diverse in geography are needed to confirm these results.

Implications for research and clinical practice

The present study has implications for mental health services and research, especially in low- and middle-income societies. For healthcare providers, diverse anti-stigma programs with different foci should be tailored according to various sub-group FCPWS. Based on the findings of this study, older FCPWS should be placed more attention on both stigma and caregiving burden; Female and low-income FCPWS need more assistance to cope with caregiving burden. Future interventions should be further specified and polished to fit in rural areas. Advanced statistical modeling such as pathway analysis and mediator/moderator effect analysis could be employed to identify the underlying mechanisms, since affiliate stigma and caregiving burden could be demonstrated and associated with other potential psychological factors (e.g. face concern, hope, and psychiatric knowledge) (Li et al., 2022). Policy makers should encourage multifaceted intervention programs which would be both cost- and time-effective. Given the limited community mental health services and the important role of family caregivers in caring for PWS in China, a systematic and multifaceted view should be considered rather than just tackle a sole aspect (e.g. simply stigma or caregiving burden) when selecting and investing psychosocial intervention programs (Ran et al., 2022).

Conclusion

Over the past two decades in China, most individuals with schizophrenia (over 90%) live with and rely on their family members for housing, emotional and financial support (P. W. Corrigan & Miller, 2004; Ran et al., 2005; Thornicroft et al., 2016). This study suggests that most FCPWS experienced mild to severe affiliate stigma and caregiving burden. More attention and health resource from academia and government should be placed on the severe situation of affiliate stigma and caregiving burden among FCPWS in rural areas. Importantly, psychosocial interventions on reducing stigma of mental illness and caregiving burden (e.g. enhancing contact model), characterized by multi-faceted components and tailored to diverse subgroup FCPWS, should be developed and examined further.

Footnotes

Acknowledgements

We thank all the collaborative institutes (Chengdu Xinjin Second People’s Hospital, Township hospitals in Chengdu Xinjin district), research collaborators and participants for support and data collection.

Author contributions

MSR designed this study. MSR, YZW, WL, and ML conducted this study. MSR, YZW, TMZ, ML, and WL collected data. YZW and XW conducted data analysis. YZW and MSR wrote the first draft of the paper. All authors made contributions to critical revision of the manuscript.

Data availability

The de-identified data are available on reasonable request to the corresponding author.

Conflict of interest

The authors declare no conflict of interest. GT is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. GT is also supported by the UK Medical Research Council (UKRI) for the Indigo Partnership (MR/R023697/1) awards.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: General Research Fund, University Grants Committee, Hong Kong SAR (GRF, Grant No. 17605618, 2018-2021, PI: Prof. M.S. Ran).

Role of the funding source

The funder of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. The corresponding author had full access to all the data in the study and had final responsibility for the decision to submit for publication.

ORCID iDs

Yi-Zhou Wang

Mao-Sheng Ran

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