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Family caregivers' abusive behaviour and its association with internalized stigma of people living with schizophrenia in China.

ABSTRACT: Family caregiving of people living with schizophrenia (PLS) can be burdensome, and some family caregivers may perpetrate abusive behavior that could be harmful to PLS. This study aims to examine the association of family caregivers' abusive behavior with internalized stigma of PLS and draw attention to this problem. PLS were recruited from four cities across China and completed measures of abusive behavior and internalized stigma. Linear regression analyses were used to determine the association between family caregivers' abusive behavior and internalized stigma of PLS. A total of 693 PLS were include in this study. 22.7% of the participants had experienced one or more of the abusive behaviors perpetrated by family caregivers. The most common type of abusive behavior towards PLS was verbal abuse and 4.2% of the participants reported physical abuse. 44.6 % of participants reported a high level of internalized stigma. PLS who experienced any abusive behavior by family caregivers had significantly higher levels of internalized stigma. Family caregivers' abusive behavior is positively associated with alienation and social withdrawal but not with stereotype endorsement and discrimination of PLS. To end all forms of stigma and discrimination against PLS, more attention needs to be paid to the families of PLS.

SUBMITTER: Li Y

PROVIDER: S-EPMC10509261 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature

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Family caregivers' abusive behaviour and its association with internalized stigma of people living with schizophrenia in China.

Li Yilu Y Qiu Dan D Wu Qiuyan Q Ni Anyan A Tang Zixuan Z Xiao Shuiyuan S

Schizophrenia (Heidelberg, Germany) 20230919 1

Family caregiving of people living with schizophrenia (PLS) can be burdensome, and some family caregivers may perpetrate abusive behavior that could be harmful to PLS. This study aims to examine the association of family caregivers' abusive behavior with internalized stigma of PLS and draw attention to this problem. PLS were recruited from four cities across China and completed measures of abusive behavior and internalized stigma. Linear regression analyses were used to determine the association ...[more]

PMID: 37726337

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Project description:Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest that messages such as 'recovery is possible' and 'no-one is to blame' may be more helpful than focusing on bio-medical knowledge alone.

Project description:BackgroundIt is estimated that 8 million of the Chinese adult population had a diagnosis of schizophrenia. Stigma associated with mental illness, which is pervasive in the Chinese cultural context, impacts both persons with schizophrenia and their family caregivers. However, a review of the literature found a dearth of research that explored internalized stigma from the perspectives of both patients and their caregivers.MethodsWe integrated data from standardized scales and narratives from semi-structured interviews obtained from eight family-dyads. Interview narratives about stigma were analyzed using directed content analysis and compared with responses from Chinese versions of the Internalized Stigma of Mental Illness Scale and Affiliated Stigma Scale. Scores from the two scales and number of text fragments were compared to identify consistency of responses using the two methods. Profiles from three family-dyads were analyzed to highlight the interactive aspect of stigma in a dyadic relationship.ResultsOur analyses suggested that persons with schizophrenia and their caregivers both internalized negative valuation from their social networks and reduced engagement in the community. Participants with schizophrenia expressed a sense of shame and inferiority, spoke about being a burden to their family, and expressed self-disappointment as a result of having a psychiatric diagnosis. Caregivers expressed high level of emotional distress because of mental illness in the family. Family dyads varied in the extent that internalized stigma were experienced by patients and caregivers.ConclusionsFamily plays a central role in caring for persons with mental illness in China. Given the increasingly community-based nature of mental health services delivery, understanding internalized stigma as a family unit is important to guide the development of cultural-informed treatments. This pilot study provides a method that can be used to collect data that take into consideration the cultural nuances of Chinese societies.

Project description:BackgroundHIV-related stigma has significant adverse impacts on people living with HIV/AIDS, such as psychological distress, decreased quality of life, a reluctance to get screened and treated, and a reluctance to disclose their status due to fear of stereotypes or rejection.ObjectivesTo determine the pooled prevalence and factors associated with HIV-related perceived stigma and internalized stigma among people living with HIV/AIDS in Africa.MethodsArticles that assessed the prevalence and associated factors of HIV-related perceived stigma and internalized stigma were reviewed. PubMed, EMBASE, Google Scholar, African Journal Online, CINAHL, and Science Direct were the databases used to search the primary studies. The data was extracted through a Microsoft Excel spreadsheet and exported to STATA version 14 for further analysis. The I2 test was applied to test heterogeneity, whereas Egger's test and funnel plot were used to check publication bias.ResultsIn this study, the total sample size was 28,355 (for perceived stigma) and 22,732 (for internalized stigma). The overall pooled prevalence of HIV-related perceived stigma and internalized stigma was determined to be 41.23% and 35.68%, respectively. Based on the subgroup analysis results, the highest pooled prevalence of perceived stigma was observed in Nigeria (50.04%), followed by Ethiopia (41.72%), while the highest prevalence of internalized stigma was observed in Ethiopia (56.13%), followed by Cameroon (44.66%). Females (OR = 1.63: 1.31, 2.02) and rural dwellers (OR = 1.93: 1.36, 2.74) had more odds of experiencing HIV-related perceived stigma.Conclusion and recommendationThis study concluded that four in ten and more than one-third of people living with HIV/AIDS suffered from perceived and internalized stigma. Thus, special considerations must be given to women and rural dwellers. It is recommended to implement multi-level interventions and foster empowerment and support for individuals living with HIV.

Project description:BackgroundThe 10-item Perceived Stress Scale (PSS-10) is a widely used measure of perceived stress that has been validated in various populations, yet with inconsistent results on its factor structure. The present study examines the reliability and validity of the PSS-10 in a population not previously examined: Chinese family caregivers of persons with schizophrenia, with a focus on factor analysis.MethodsA sample of 449 family caregivers of persons with schizophrenia was recruited for psychometric testing of the scale. The factor structure of PSS-10 was tested by randomly dividing the sample into two groups for both exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). The scale was further tested for internal consistency, test-retest reliability, convergent validity, discriminant validity and concurrent validity.ResultsEFA extracted two factors: perceived helplessness with six negative phrasing items and perceived efficacy with four positive phrasing items. CFA confirmed the structure of two factors with satisfactory model fit indices. Convergent validity was supported by high standard regression weight (0.78-0.92), average variance extracted (AVE=0.79-0.81) and composite reliability (0.88-0.94), while discriminant validity was confirmed by higher AVE estimates than the squared interconstruct correlations. The PSS-10 showed good internal consistency and test-retest reliability, with Cronbach's alpha of 0.79 and intraclass correlation coefficient of 0.91, respectively. Concurrent validity was demonstrated by its significant positive correlations with stigma, depression and anxiety, as well as significant negative correlations with social support, family functioning and positive caregiving experiences.ConclusionThe two-factor PSS-10 has good psychometric characteristics assessing the perceived stress of family caregivers of people with schizophrenia. The findings indicate that the PSS-10 can be used to measure perceived stress in future research and practice among caregivers of people with schizophrenia, and potentially, other caregiving samples.

Project description:BackgroundHealth-related quality of life is a multi-dimensional concept that involves individual's perceived physical and mental health, social relationships, and environment. Family members are the primary caregivers of people living with schizophrenia in China, the quality of life of caregiver of people living with schizophrenia is generally poorer, which may indirectly affect the quality of life of the people with schizophrenia.MethodsWe conducted a comprehensive survey on quality of life in caregivers of people living with schizophrenia based on the Schizophrenia-specific cohort in the Less-developed Multi-ethnic Region of Southwest China to validate the accessibility and effectiveness of the schizophrenia family care model at the family level, caregivers of people living with schizophrenia were selected as participants in Baoshan City, Yunnan Province from September 2022 to March 2023, quality of life, family burden of disease, sociodemographic and behavioral information of participants were collected.ResultsDomain scores for physical, psychological, social relationships, and environment of quality of life were 13.50 ± 2.61, 12.67 ± 2.40, 13.64 ± 2.32, and 12.46 ± 1.76 respectively. In our study, we found that gender, age, education level, personal monthly income, history of smoking and alcohol consumption, subjective sleep quality, relation to the patient, degree of self-care and the number of relapses in patient all influence 1 to 4 domains of quality of life for caregivers, stratified analysis was conducted to minimize the effect of gender on the results, we still found that history of smoking could positively predict the score of psychological domain and history of alcohol consumption could positively predict the score of social relationships domain. Canonical correlation analysis showed that the 'impact on family interaction' in family burden of disease was most closely related to quality of life.ConclusionBuilding harmonious family relationships can help improve the quality of life for caregivers of People living with schizophrenia.

Project description:BackgroundContact-based intervention has been documented and proved effective on reducing stigma of mental illness in high-income countries, but it is still unclear about the effectiveness of the contact-based intervention among family caregivers of persons with schizophrenia (FCPWS) in low- and middle-income countries including rural China.MethodsWe conducted a cluster randomized controlled trial in FCPWS in eight rural townships in Xinjin district of Chengdu city in Southwest China. The FCPWS in these townships were randomly allocated to the Enhancing Contact Model (ECM), Psychoeducational Family Intervention (PFI), or Treatment as Usual (TAU) group. FCPWS in three groups were provided specific interventions and follow-ups. By using a mixed-effect model, our goal was to examine the differences in affiliate self-stigma scale (ASSS) scores among three groups with the data collected at baseline (T0), post-intervention (T1), 3-month (T2), and 9-month (T3) follow-up timepoints, respectively. This trial is registered with ChiCTR, number ChiCTR2000039133.FindingsIn April 2019, 253 FCPWS from 8 townships were randomly assigned to receive either ECM (cluster=3, n=90), PFI (cluster=2, n=81), or TAU (cluster=3, n=82). Compared with participants in the TAU group, participants in the ECM group had statistically significantly lower ASSS scores at 9-month follow-up (estimated parameter [EP]= -5.51, 95% CI -10.27 to -0.74, p=0.02). There were no statistically significantly different ASSS scores at 9-month follow up between ECM and PFI groups. Compared with participants in the PFI group, younger (<60 years old), with higher monthly income and other caregiver (e.g., parent, sibling, child) participants in the ECM group had statistically significantly lower ASSS scores in the 3-month follow-up (EP = -5.66, 95% CI -10.13 to -1.19, p<0.01; EP = -7.82, 95% CI -11.87 to -3.78, p<0.001; EP = -6.79, 95% CI -10.69 to -2.90, p<0.001, respectively).InterpretationThis first trial in rural China shows that ECM intervention, a new anti-stigma intervention model, is a promising method for reducing affiliate stigma among FCPWS. The ECM intervention is more effective and stable than the PFI on reducing affiliate stigma among FCPWS. Further research needs to explore whether a long-term intervention could produce a more positive anti-stigma outcome trajectory.FundingGeneral Research Fund, University Grants Committee, Hong Kong SAR (GRF, Grant No. 17605618, 2018-2021, PI: Dr. M.S. Ran).

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Family caregivers' abusive behaviour and its association with internalized stigma of people living with schizophrenia in China.

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Family caregivers' abusive behaviour and its association with internalized stigma of people living with schizophrenia in China.

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